The Differences Among Us: What I Wish Others with Migraine Knew

The Differences Among Us: What I Wish Others With Migraine Knew

There are many things those of us with migraine disease wish people without it understood. It isn’t just a headache. It is severely disabling. Symptoms can come and go.

We express our desire for this understanding often and in many ways, from Twitter conversations and Facebook groups to Instagram posts. But it isn’t just those without migraine that make us feel misunderstood. Sometimes, it is others of us with it.

The uniqueness of migraine can separate us

Living with migraine is an exercise in coping with the unpredictable. Symptoms and severity can change from one attack to the next. Frequency fluctuates. Medications stop working. The disease rarely presents in exactly the same way for any two of us. At times, this uniqueness can make us feel lonely even in the midst of those whom we feel understand the most.

In general, there are more similarities than differences between our experiences, which is why communities like Migraine.com are so important. We take comfort in knowing we’re not alone. It gives us hope. Occasionally, though, we still feel separate. So today I want to make a move toward lifting that veil.

What I want you all to know about my migraine disease

Head pain is not my most disabling symptom. This is hard to get even my neurologist to understand. Yes, the pain can be excruciating, but it often isn’t. Not anymore. I’ve grown accustomed to a certain level of pain over the years, and when it gets over that threshold, I have a variety of medications I use to manage it and bring it back down to around a five. Of course, there are days when even the strongest of my pain meds don’t work, and on those days I long to slam my head against the wall repeatedly. But those days don’t come often enough to make the pain my most troubling symptom. (I have my pain doctor to thank for that, I know.)

Distraction is key to my quality of life

Many of us have seen the meme floating around about how a person experiencing a “real” migraine attack couldn’t possibly be posting about it on Facebook. My attacks can last for days, weeks, and even years. It is vital to my sanity and quality of life that I do more than isolate myself in a dark room. I try to do whatever I can to distract myself, especially when the pain is so bad no medication can touch it. This may mean watching TV, going online, or even doing something with friends. (The ones who won’t misinterpret the grimace of pain that’s likely plastered across my face.) Basically, whatever I can tolerate. It’s so much better than lying in the dark and wishing my head would just explode already.

I am not worried about medication overuse

I know the symptoms of MOH, but I also know I don’t have it. Further, I’ve tried every single preventative that is currently available, and not one of them has worked. At this point, I do what I can to manage my symptoms (vertigo, double vision, nausea, pain, etc.) well enough to function. For me, that means taking opioids, and occasionally it means taking them more than twice per week.

What about you? What do you wish the rest of us with migraine knew or understood about you and your experience with migraine disease? Please let us know in the comments. I look forward to reading each of your responses and getting to know you all a little better.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (240)
  • poetdoll
    2 days ago

    Thank you for this article! Most ER doctors and nurses don’t understand and often question how I can advocate for myself even while at insane pain levels. They think I am narcotic seeking, despite me telling them I am not! I have discussed med options with ER doctors while on Planet Zoron. (my word for insane pain levels) It’s like the doctors have to prove something. When I tell them they cannot and will not touch my head, they look at me like I am being a belligerent patient. Why can’t they recognize that I have more knowledge about what I need? I wouldn’t be there because just getting ready and climbing in the car for the journey to ER made me vomit and retch until I was gasping for air. To even enter the ER and deal with flourescent lights, loud sounds, dumb questions, and then people that wanted to touch me would send my pain levels and blood pressure thru the non existant roof. Thank God for my neurologist who has prescribed me Ketouralac that I can inject at home and can avoid those ER doctors now!

  • Jennifer Gonzalez
    1 month ago

    The life I now have for the past 6 years of having a retired husband home 24/7! He is always wanting to have a daily agenda, of “Well, what are we doing today?”, as in where and when are we leaving to do what and when? well, for the For the first 25 years of our married life he had a very full time, traveling at least 3days weekly career! He had Business, Breakfast, Lunch and Dinners! I would always join him for his Business Dinners, and also be expected to travel with him almost everywhere he had to go! As he was President of a big business Global Food Company, which during that time, I suffered with both Chronic Migraines and Endometriosis! Both, he never understood! he always thought, I could be sick during the day, b8ut, I must be dressed out to the “9’s”, for these many weekly Business Dinners, no matter how I was Feeling! As, he did not think either of these illnesses were that big of an issue! Now, I also took care of our home, with out any help, and I always kept active, playing tennis on a Woman’s Country Club League, until my traveling interfered with these weekly matches, so I just gave that up, I was just hoping to meet some women who were available to play Tennis for fun, whenever I could make it! But, with so many stay at home women, they were full time “Mom’s”, so their daily routine and mine were very different! I did not really fir in any where! So, we traveled with our Tennis Racquets, and my husband and would play tennis everywhere we were traveling! Also, he was quite high on his own career ladder, which required me to always be able to attend his many Business functions! it did not matter if I had a Migraine or if was my Endometriosis that was causing me to be very ill, most of the time! For his 25 years with the Global Company, I just had to “Suck it Up”! until now, that he is always home, he wants to go somewhere everyday or be planning for us to have trip to travel somewhere! I just want to enjoy some peace and quiet and a slower pace of life! As these Chronic Migraines do take a lot of me and I am sick for 3 days with them and then sick in the recovery phase as well, which he does not ever understand even after being married for 33 years! It is a constant source of agitation between us! As he thinks, that it is something either I am doing wrong, or not doing right that is causing me to have these weekly Migraines, which are also Weather triggered, by heat and humidity and all of the many Thunderstorms, we live with here in Florida! I can Not control the weather! so, now he thinks I am ruining whatever time he has left to enjoy his “Golden Years!” with a wife who is always sick or in recovery phase of something he can not actually see, except when I am nauseated and I can not eat or sleep, because of the severe pain! So I would say these Migraines have ruined my life!

  • bethy73
    1 month ago

    Thank you for writing this. I felt as though I was reading about my own life for the past 3 months!! I’ve been dealing with a migraine for the past 3 months. I’m literally at a point where I don’t know what to do. I’m allergic to the triptans and the ergotamines, so they are all out of the question. I don’t take anything for prevention because I’ve tried most everything [I’ve been dealing with migraines for the past 25 years or so] and I got no benefits from anything ~ just weight gain and dry mouth. To complicate things I also have underlying Parkinson’s and asthma and I have a history of guillain barre and a compression fracture in my neck. I’ve been hospitalized twice with this migraine and it’s still sitting at a 6-7/10. My doctors won’t even try narcotics and act as though they’re committing a felony just saying the word “narcotics”. I’ve had every test imaginable ~ my sed rate and CRP are elevated but when I ask them what that means they tell me it’s nonspecific and doesn’t mean anything. Then why did they run the tests?? I had a spinal tap and the headache was so bad at the time that they told me I probably wouldn’t know if I got a spinal headache or not. A few days later the headache was a bit worse and on both sides of the head, but I don’t know if it was a spinal headache or not. In about 4-5 days it was back to just the right side of my head. The thing is, I’ve been told by several doctors and others at my own clinic to just “go home and suck it up” or “just learn to live with it because nothing more can be done”. I don’t want to live like this for the rest of my life. There has to be something that can help.

  • Jonathondroberts
    2 months ago

    Exactly, most people don’t get how I function so well during some of my migraine episodes, often questioning if I’m having one, but what they don’t understand is by chronically suffering from migraines we get used to most of the symptoms, and we get so tired of being bedridden by it that we just do what we can tolerate anyways, cause we’re trying to not let it run our lives, even though it always is. And about over medicating, I understand that too, I have no insurance so I can’t get a prescription, so to go on with my day to day life, i destroy my liver or kidneys, which ever it is, by taking the daily recommended dosage of 8 Excedrin, twice daily, and some times that doesn’t keep the migraines at bay.

  • Warmrainydaze
    2 months ago

    I wish more doctors would acknowledge to their patients that us, the pain can be so bad during a migraine that it can literally cause brain damage. I was shocked stupid when my neurologist informed me that he absolutely believed that I’ve had migraines all my life because he could see several places where the damage was noticeable on the MRI that I had done. WHY don’t doctors tell us that??? It’s tough enough that I need opioids on a regular basis, but it’s worse after pleading for them for years, they’ve got PROOF in their hands that I need them, yet they still don’t want to refill my medication. It’s beyond frustrating!

  • TonguePetals
    2 months ago

    If I didn’t know better, I would say I wrote this myself. I too have failed out of everything…except Hydromorphone. Some migraines will take my entire script; a paltry 6 2mg tablets to cover 22-26 migraine days a month. I am forever having to apologize for getting relief from opioids. If I could take something else, I would.

  • mstanford
    3 months ago

    I wish people knew that even though I rarely get nausea or photosensitivity, the fact that I have them pretty much every day makes them just as miserable.

  • GailP
    3 months ago

    I wish they knew how hard it is to function on a day to day basis. For example, I just slipped and fell outside trying to go to a dry place to sit. I hurt my butt bone and scraped my knee and tore off the top half of my big toenail. I just started bawling. I feel I can’t take much more. The accumulation of little things are what break me.

  • Mamabear213.
    3 months ago

    How long does a person have to suffer from all of this, the pain, the sensitivity to light and sound and smell, the constant ache in the body and everything else before a neurologist will realize that prevents and rescues are not working? Otc’s aren’t working. I live life in daily pain. I have other disorders and mental health issues , PTSD being the major factor there, .. I just don’t understand. I’m in pain, it never stops and yet EVERY Dr I’ve been to has refused to give me anything that will help. I’ve tried explaining over and over again that I have a high threshold for pain, but I also have a high tolerance to medications. A fact that has been recorded in my files when I had a migraine so horrendous during the birth of my last child that I never felt a single contraction, and the anesthesiologist basically had to talk me into getting the epidural because I felt no other pain besides the migraine. ( I’m glad I did get the epidural for reasons I won’t go into here, suffice it to say that there were complications after the birth) but just. Aarrgh!

  • Newdancerco
    3 months ago

    Thank you! I have been taken off my opiates (the only thing that helps) to do a trial of Aimovig. After 30 years of pain, I know MOH too, and frankly I don’t care- I’m in pain anyway!
    Even doctors don’t believe me, and I’m so very tired of it.

  • CABiss
    3 months ago

    I worked with a girl that also had migraines. She told me that I was just having headaches cause I didn’t have to leave work when I got a migraine. I have built up a high threshold for pain, because I was a single mom and there wasn’t anyone who was going to cook & clean for my children when I was sick. I explained that to her and she still didn’t believe me until I told her when I was dx’ed and by the doctor’s name. She was a nurse and I knew more about migraines than she did.

  • kimmersutphin
    3 months ago

    I’ve had people who say they had migraines tell me just to take some Tylenol and that kicks it. Man, I wish. I also did have some nasal spray that was an opioid and because one other doctor prescribed something I told him not to and then threatened it if I didn’t take it I’d be in trouble got me kicked off of my nasal spray that was my rescue. I stopped taking it never helped anyway but I’m sure my nurologist won’t prescribe me the nasal spray again. My prayers now is that the new shot aimovig I took the other day works magic. Have had migraines for 60 years. Let’s be good to each other.

    I love my husband and he’s the best and he does everything he can for me when I have a migraine which is almost constant. I envy him he’s never even had a headache. That would be a dream come true. but I know each of us have our own problems and trading one thing for another is not always the answer

  • Sibylia
    3 months ago

    I take Fioricet. An opioid ?

    Started having migraines when in graduate school at age 38 in 1982. May have had a few before that but don’t remember back that far.
    In the summer of 1985 moved from Milwaukee, WI to Pittsburgh, PA. By 1986 saw a new doctor there. He prescribed Fioricet.

    I have been taking it on and off since then. It has always worked. Even when I had surgeries and they hooked me up to a morphine drip. The pain without that or Percocet etc. was always tolerable with Fioricet.

    A new doctor here in AZ recently started me on Amytriptiline. The morning after I was angry with everything and everyone. My dog did not speak to me for 2 days. I tried half a pill for maybe a week but then – quit.

    So back to Fioricet. Seldom take more than 4 a day. I can stand a fair amount of pain. But in my head ? That is a different issue. Since all of you know – not only is there pain but also the balance goes. Then the fogged brain so you can’t focus or think. That is the worse for me as I am a writer.

    Anyone else out there use Fioricet ?

  • tucker
    2 months ago

    I am still hoarding the last of my fioricet from about 5-6 years ago. My last couple headache docs wouldn’t prescribe it. I’ve tried a lot of preventatives and have Maxalt as an acute treatment which works 90% of the time. Then there’s the other 10% where the migraine goes into day 2 and 3 and I’ve got to function at work (I only work part time so I go). I use excedrin and advil but when they don’t work Fioricet will know out a migraine in nothing flat. Even a bottle from 5-6 years ago on day 3 of misery…

  • Logan0225
    3 months ago

    I also use Fioricet. It is the only thing that works for me! BUT – my new doctor did not want to prescribe it because he says it bring on (I am trying to think of what he said) rebound headaches)??? THIS IS NOT TRUE! And since he only prescribes a certain amount each month, I had ran out and had THE WORST headache for 7 straight days until I could get my prescription refilled. For 7 days I could not move, and the headache would not let up. Fioricet is not an opioid. It is the ONLY thing that works, and the HELL I HAVE gone through to talk to my doctor about this is UNBEARABLE. I did go to a PAC, and she put me on medication, that did not help! She did not tell me not to drive, and so I was driving and I have no idea what she put me on, but I almost ran into a cement barrier on the freeway. I ended up in the hospital because I had such a BAD reaction to this medication. I REFUSE to try anything else because I have tried so many things that the doctor prescribes because he does not believe Fioricet works. — I have had headaches since elementary school, for some reason in high school and a few years later the headaches went away. — Now they have come back full force and I am so sick of dealing doctors who do NOT take the time to understand because they are afraid to put their name on the prescription. That is exactly what my doctor told me. – I am NOT asking for Vicodin, or Percocet or any other NARCOTIC, I am asking for something that I know works. Without Fioricet there are days I cannot even get out of bed. WISH THIS WOULD HAPPEN TO ALL THE DOCTORS I had to have an argument with. Give them my headache and I would be VERY HAPPY!!

  • tucker
    3 months ago

    The nausea is the worst. I can handle the head pain but once I get nauseous and especially to the point I feel like I’m going to vomit all bets are off. I absolutely hate vomiting.

    I also am more of a baby if I’ve been feeling ok (as in just headaches) for a couple weeks then a big migraine hits. These are usually unexpected and I’m thrown for a loop. Just let me cry and be by myself in my room all curled up until some medication can begin to work.

  • PEINURSE
    2 months ago

    I thank God everyday that I do not have the nausea and vomiting with all the other symptoms. I cannot even imagine!! I feel for you.

  • Sibylia
    3 months ago

    Me too ! Vomiting is the worst. They had me hooked up to morphine after a hysterectomy in 1990. When I woke up, I pushed the button twice. Then began throwing up. Made them take me off of it and had them give me Fioricet. And through 2 foot surgeries as well.

    My state has medical marijuana so I am trying that as well. But have not tried it consistently enough yet.

    Anyone with experience in that or CBD ?

    It is expensive to get the medical marijuana card every year.

  • PEINURSE
    2 months ago

    I have recently tried vaping the THC and regularly dosing of the CBD but this has not worked for me. I stopped the THC as it was causing unwanted side effects. My memory is poor enough, due to Migraine and then it got worse. Also, I did have some ” impairment” and I cannot tolerate that either. I have lived with the pain for over 30 years and I would prefer the pain to the impairment. Maybe I could accept that side effect if the pain subsided but that was not my experience.

  • cal2
    3 months ago

    I wish others who don’t have my migraines knew my CM means I’m in pain everyday now. Even if I don’t wake up with it, it begins with activity like taking a shower. The intensity and level of disability isn’t the same each day but it’s intensified each year. I wish others who battle this wouldn’t assume I haven’t considered what I’m doing to survive may be causing rebounds; I spent years testing that even though I’d had rebounds from meds my neuro said couldn’t cause them. My rebounds feel nothing like migraine and there is nothing that will get rid of my rebounds My neuro could not bring himself to accept what I said before I fired him. I wish those who suffer with this wouldn’t tell me what I am doing or not doing that is causing my inability to do as well as they are even if they don’t also include examples of how many things they’ve done that day while I’ve been struggling to stand up or stop vomiting. I wish those who suffer from the same thing that’s taken away so much of the life I used to know could feel I am being sincere when saying I am happy they can have the same thing and function. People who have migraine but not CM are trying to help with kind hearts giving suggestions or the otc remedies that knock theirs out in 30 minutes and I always thank them now leaving out any comment about having tried that because saying more is now bringing feelings of total aloneness, frustration or just tears even though I know I shouldn’t let it hit me. There are days I can still laugh it off and I know it’s just getting harder as this intensifies as each year passes and it’s not as easy to believe there will be a cure in my lifetime at my current age.

  • PEINURSE
    2 months ago

    I certainly empathize with these feelings. I usually do not talk about it anymore because I cannot handle the ” advice”.

  • Ga_Peach_Tee
    3 months ago

    I’ve been a migraine sufferer for 15 years. I’ve been through ALL the preventives (per my neurologist ,some twice….currently on 200mg. of Topomax tid, and trying Botox for the 2nd time), but nothing has worked.
    He referred me to a spine & pain dr. for relief meds, (90 oxy. 10/325). I was also on the Butrans patch,(20 mg…1per week), but my insurance stop paying. Their less expensive alternative pain patch they WILL pay, and want me to switch to is the FENTANYL patch. My dr. and I appealed this 3 times, but to no avail! I could continue my previous Butrans patches, but would have to pay out of pocket. The price is $230.00. I can’t afford this due to the fact that I’m on disability. I’ve suffered 2 mild strokes, the most recent 1 being 1 year ago today! It left me immobilized for 4 months. I had to have home health care practically move in with me to teach me how to perform daily tasks. Basically,I had to learn to walk again. There was no room at any of the nursing homes, which is why I was sent home! Well, my migraines are worse since my meds have been altered. I’m thinking about trying the fentanyl patch. Is anyone currently on it, tried it? Or is there something that works for you if you’re a “difficult” case such as myself? P.s. I’m a 42 yr. old disabled Registered Dental Hygienist …well, I USED TO BE

  • TonguePetals
    2 months ago

    Fentanyl is a wonderful drug, it might box you in. Another suggestion is low dose methadose. Don’t let them try and put you on suboxone, just take the fentanyl.

  • Sibylia
    3 months ago

    Hi,

    Fentanyl scares me. At least what I have read and spoken with people who have been on it.

    As we get older everything changes apparently ! I am 75. You at 42 are not old but each thing that sets us back makes us feel that way.

    I don’t know much about all the various meds out there since I only used one since 1986.

    But I am trying medical marijuana. Had some from last year so need to get my card again. I will let you know if it will work consistently.

  • Newdancerco
    3 months ago

    Fentanyl, as prescribed by a doctor, is pretty safe. The problem is that people are using both fentanyl and its derivatives to cut heroin, which results in overdoses.
    Like any opiate, used right it works (they gave me shots of it while I was in labor- I’d been on pitocin for 5 hours before anyone told me I could have an epidural or pain control; when the nurse injected it I was amazed and I think I said I loved her, lol). Abused it is a problem.
    I have to wonder how much extra money the cartels are making due to the “war on opiates” forcing doctors to stop treating and leaving patients with only illegal options.

  • ladyhuckleberry
    3 months ago

    Just as every migraine is different so should treatment: if you find something you should be able to stick with it. As a dialysis patient and chronic sufferer it’s not easy finding what works. Then when I do the Bureaucrats in all of their glory step in and yank it away from me. Then the doctors I have to deal with are either skiddish or still don’t give a damn about helping me. I’d love to think that I could get others who have this happen to join me and fight but the most of folks don’t wanna rock the boat. As one who has seen the issue from both patient and professional side it only adds up to helping and not hindering. We can fight the abusers and their agenda. Wanna try with me??

  • Sibylia
    3 months ago

    Yep – the FDA is scaring my doctor about Fioricet. I am mad as hell. And of course the price goes up every year.

    Why are they doing this ? $$$$ ? Just a guess.

  • quiet-please
    3 months ago

    I wish more people knew how debilitating sound, light and motion sensitivity can be. Head pain sucks but I have chronic migraines and have head pain and light/sound sensitivity pretty much daily.

    While spikes in pain can incapacitate me, the light/sound sensitivity is what bars me from the most activities and interferes with my work.

    One of the worst attacks I ever had was rapidly increasing sound sensitivity to the point where I was crying and banging my head on a table and couldn’t bear a single sound. It took weeks for me to be up more than 2 hours at a time and to stop wincing when people spoke and I’m still now dealing with increased sound sensitivity 6 months later.

  • ladyhuckleberry
    3 months ago

    And don’t forget noise. Damned boomboxes send me in orbit.

  • Kristine Ullemeyer
    3 months ago

    I have daily migraines, in my head and my body. When the pain is unbearable I go to my room and watch movies I have seen some thousands of times. Soft music also helps. I swim at least twice a week and do palates twice a week. Sometimes it is so hard, but I force myself. It helps with my weight, not my migraine. I will not allow myself to be negative either.

  • melceevee
    4 months ago

    I want a paradigm shift. We need to stop calling migraines a “headache”. Yes, your head hurts, but it is nothing like a regular every day headache. Migraine is beyond a headache and those who have never had one will never understand unless we/they start looking at it differently. Daily migraines have shattered my world. I finally got an appointment with a neuro, but it’s not till November. I feel I’ll be dead by then. God bless my fellow migraineurs. I pray for a cure.

  • freebird110564
    4 months ago

    I started getting “headaches” about 5 yrs ago and assumed it was job stress. They progressively got worse. I classify them as pressure headaches, very bad when I cough, sneeze, bend over. So bad that I would squat to pick things up because it felt like my head was going to explode if I bent over. I am a veteran and went through the VA with them checking every aspect trying to figure out what the cause was, eyes, hearing (I also had ringing in the ears), blood pressure meds and many other medications. They did MRI’s and sent me to a neurologist who diagnosed migraines. I am still not sure that is the case, but sometimes it can knock me for a loop and I have to revert to the recliner and the Sumatriptan. I was taking so much over the counter meds to try and control the constant pain that I scared myself. The only thing I find that does take the edge of and get me to work is double up on tylenol and ibuprofen. When the pain is really bad, light does bother me and I find a dark room helps. I work on the computer a lot and have made all my screens bigger to help. They tell me it’s not my vision. I have noticed when the migraines are bad, the ringing in my ears is worse. I’m a smoker so of course I cough and when I cough it is like lightning going off in my head. I still believe it’s from pressure somewhere or nerves, but I have learned to live with it. My pain tolerance is so high at this point, but my level of activity has decreased. That is what I hate the most. I have always been a very active person and lately I have no energy to do things I enjoy doing, like my yard work. Mostly because I know I will pay for it the next couple days. Hopefully with continued doctor care and support, something will be sorted out and I can get back to my old self.

  • hank827
    4 months ago

    I wish people would stop telling me what I should or should not be doing. I do not want to go to a neurologist, I am 51 years old and I was diagnosed at age 4. Migraine runs in my family on both sides. My parents took every known trigger food away from me and I still got them every 2 weeks as a child. Imitrex has been a life saver, at least I can function.

  • Sibylia
    3 months ago

    hank827,

    What is Imitrex ?

  • Sibylia
    3 months ago

    hank827,

    Is Imitrex anything like Fioricet ?

  • Cathyc
    4 months ago

    I just joined , I have been reading the posts and have never felt so normal on such a debilitating subject. I have not been able to have a job for probably 8+ yrs now because of chronic migraines. I was wandering if many of you are also no longer able to maintain employment because of cm?

  • swaybar58
    3 months ago

    I just joined too and have read quite a few stories. I’d had migraines for about 20+ years, but like only once a month. Then one morning about 3 years ago, about 5 seconds after waking up I had my first aura. I had several that day before noon. The next 2 days were the same. Then the pain came. That lasted a couple of days. Since then I’ve been able to go a week, maybe a week and a half before the process starts over. It’s very draining. Very difficult to work. I can’t work for anyone. Trying my best to make it on my own. I’m 60 now and it’s tough

  • KaciMo
    3 months ago

    You’re not the only one, Cathy. I’ve given up on working for the foreseeable future (after losing my job about a year ago). I was just approved for disability.

  • quiet-please
    3 months ago

    I’m currently working but if things don’t improve I may not be by the end of this year. I work in a special needs school and was signed off for 3 and a half months earlier this year, started a phased return but had to be signed off again right before summer holidays. I started a 10 week phased return today and if it doesn’t work out this time I’ll be in danger of being dismissed. Hopefully I can make it work if I find acceptable ways of dealing with the sound, light and stress triggers I encounter in my job.

  • freebird110564
    4 months ago

    So sorry that you are unable to work because I enjoy being around people and find that they do make my days happier even when I’m not feeling my best. I am still working but worry about my job every day. Some days are so bad but I continue to work and just look forward to getting home. I have blue filters over the lights and have to close the blinds so I’m working in very dim lights sometimes. I hope to continue working and hope to find some relief soon.

  • katejc
    3 months ago

    I’ve realised screens and blue light are a trigger for me. Where did you get the blue light filters from? Thanks.

  • Jojiieme
    4 months ago

    Part-time work in a field I love is my answer. And also my escape. I’m lucky that I work with a very supportive team, in a field that understands disabilities, so we find ways to adapt working styles and Flexi hours whenever possible.
    Living in a sub-tropical region, that’s getting hotter and more humid each year, doesn’t help of course. I’m grateful I can still find ways around the bad weeks. This online community is a godsend, though, both for information and support.

  • Cathyc
    4 months ago

    Your story is eerily very close to mine. I have been dealing with migraines since the age of about 4 yrs old (I am 54 now) I actually did bang my head on the floor, because my head hurt so bad. I very much wanted to not be here anymore, sadly sometimes I still do. I fortunately do not believe in that, it’s just sometimes the pain isn’t always rational. I have been on every preventative, tried ideas from those who knew nothing about migraines out of desperation, opioids, triptains, bio feedback, and anything else that has been put out there. I usually have to get to a cool dark room. I can’t lay down because for me that intensifies my pain. I sit up in bed or recliner with legs crossed and rock back and fourth with several pillows propped in my lap. I do have the tv on very low volume and set to a program that I have absolutely no interest in, this is to try to distract my brain from the pain. I also have a bad habit of twisting my hair around my finger, although I don’t advise this because I often end up with knots that have to be cut out or worse I pull them out. Recently, for the last 6 months or so my husband noticed that I start talking constantly and very fast. I don’t even realize that even until he brings it to my attention, all I can figure is that I am trying to not hear the relentless throbbing sound of yet another migraine. I have 20+ a month. The only thing that keeps me going besides family and friends is the hope that eventually somewhere there will something that the very least can cut down, way down the number and of intensity of my migraines. I do have a new preventative that I just started, too early to say yet. The medication is called Aimovig, it’s a once a month injection done at home. Fingers crossed.

  • Ylwest
    4 months ago

    I’ve picked up drawing to try and alleviate headache hangover.

  • Cathyc
    4 months ago

    I have been using coloring books, kids books though because the adult have too much fine definition, as a distraction and sometimes it helps.

  • Holly Baddour moderator
    4 months ago

    Love that! Here are some other ideas from our community members for creative workarounds to managing the pain related to migraine: https://migraine.com/living-migraine/getting-creative-chronic-migraine-workarounds/ . So glad you shared!

  • Ylwest
    4 months ago

    I’ve tried every preventive medication. Botox worked ok for almost 1 year and a half. I’m zapped every day. When I have a very bad headache, I wish that I could just die. Then I get a good day and am happy. I love my family and friends, but, I miss out on a lot. People don’t understand that you cannot just go for a walk or go outside, you cannot smell a flower, watch or hear a movie. Sometimes only sleep helps, but you cannot just take a nap. It hurts to breathe, it hurts to cry, it hurts to try to get up to go get a water bottle, take medication or even pee! I take triptans, opioids, anti-depressants, blood pressure meds, muscle relaxers, barbiturates, herbs, oils – I’ve tried them all! I’m not going to overdose or commit suicide. I wish I didn’t have them, but, I do. I try every day to hide it, but it’s hard on some days. I’m afraid to commit to anything. I have a bachelor’s of science and I can’t work. I want to be positive, but, I always have a headache. Yes, always. Sometimes, I can just function.

  • Holly Baddour moderator
    4 months ago

    Thank you so much for sharing more of your story here, @Ylwest. What you describe here -the reality of facing such severe pain that the only escape is sleep but that sleep is impossible to attain because you can’t escape the pain- juggling many different types of medications and treatments to no avail- or family and friends not understanding what we’re up against- trying to soldier through the pain – being afraid of missing out- and actually missing out- being sidelined from work- trying so hard to remain positive despite constant pain- riding the crazy roller coaster of frequency where we have some good days, or hours, and then a slew of horrid ones — all of it, all of what you describe- is so relatable.

    Just through sharing your story- you have helped the many people who will read it by making them feel less alone. And as you know, migraines, by their very nature, are very isolating.

    I hope you will take to heart that you are not alone in what you are navigating each day. There are millions of us who are right there with you, struggling with the same challenges, trying to do the best we can, despite a very difficult reality. What can make things easier and lighten the load is to connect with one another and lend and receive support. By sharing your story, you’ve given support to others. We are here to provide information and support anytime.

    As a side note, since you mentioned trying Botox and that you clearly have chronic migraine- have you discussed the two new FDA approved treatments for migraine with your migraine specialist? If you haven’t already, you may want to read up on Gammacore https://migraine.com/video/gammacore-approved/ and CGRP https://migraine.com/living-migraine/aimovig-cost/ to see if they interest you.

    Please stay in touch. We are so glad you are a part of our community.

  • LissaJ
    4 months ago

    I have about 10-15 migraines a month. I am on Botox and while I’m not getting complete relief, the Botox has taken me from having 9/10 migraines every single day to usually 6/7. I use aspirin, benedryl, ibuprofen and midrin (I go from one to another, I don’t take them all at once). It seems futile though because a lot of times they don’t work or they only bring the migraine down a few points. I never really get full relief. Sometimes taking these abortive meds is wishful thinking. I see my neurologist later this month and I’m gonna ask her if there are some better options. I’m just so sick of hurting and of migraines taking things and experiences from my life. I just wish my family took me more seriously and understand that it is real pain, not just a headache.
    Thanks for listening. -LissaJ

  • Holly Baddour moderator
    4 months ago

    So glad you chimed in, @lissaj! You are not alone! In fact, we have very similar stories. I have daily chronic migraine and have been taking botox for 16 years now. It doesn’t decrease the frequency but definitely helps with the severity such that I’m not bedbound as much as I would otherwise be.
    Since you mentioned that you’d be seeing your neurologist later this month and would be asking about other options, I wanted to encourage you to read up on two new FDA approved treatments for migraine that might be worth discussing with your doctor as they are designed for chronic migraine. CGRP: https://migraine.com/living-migraine/aimovig-cost/ and Gammacore: https://migraine.com/video/gammacore-approved/.

    Migraines are indeed exhausting and life-robbing. And it’s so challenging when our friends and family don’t comprehend what we’re up against. I’ve found that it can help to send links to articles from migraine.com (the ones that resonate with you the most). Increasing their awareness and understanding of what migraine is all about will sometimes result in an increase in the corresponding compassion and support they offer to you. Please know, also, that we are always here for you to provide information and support. So glad you’re a part of our community. Stay in touch!

  • PEINURSE
    5 months ago

    People just do not understand what they do not experience. I had EM for years and met someone with CM and was very debilitated and limited. I remember thinking, how is this possible? However, now I have CM and I completely understand.

  • fyh98e
    5 months ago

    I agree. Stop asking. I usually have a headache most days

  • quiet-please
    3 months ago

    I get fed up of being asked too. Started saying to people, ‘just assume yes is the baseline and I’ll celebrate with you if I don’t!’

  • LindaBlackmon
    5 months ago

    I wish people would stop asking if I’m having a headache today. I have them all the time seems like, but there’s more to me than a migraine

  • LadyCrochetMindy
    5 months ago

    I have had an intractable headache for almost 4 years now. Nothing stops in and we’ve tried pretty much everything. at this moment, i am ready to blow my head off from the pain. Thankfully it isn’t a migraine, just a constant headache, You have no idea what it is like to live with this and have to work, take care of a home, family etc. I am out of options for where to turn. I have been to 3 neurologists, including the headache center at Jefferson Hospital in Philadelphia. someone HELP me!

  • Holly Baddour moderator
    4 months ago

    @ladycrochetmindy– What a long and painful journey you’re on. I’m so sorry you are in the midst of such a challenging time. I wanted to check in to see how things are going now? I also wanted to reassure you that you are in the right place. We DO know what it’s like to live in constant severe pain that never lets up while trying to juggle work, family and home responsibilities. You are not alone in this. Are you working with a migraine specialist currently? Here’s a list of US-based migraine specialists, if not: https://migraine.com/blog/the-mrf-directory-of-headache-and-migraine-specialists/. Have you heard of the two new FDA approved migraine treatments? I’m sure you’ve already tried Botox, as you clearly have chronic migraine. Did that work for you at all? These two very new treatments have just been approved, also for chronic migraine and perhaps might be worth a try for you. I also have chronic daily migraine and am excited to be trying these. That said, I know it’s exhausting to keep trying new treatments to no avail. One is called Gammacore:https://migraine.com/video/gammacore-approved/ and the other is CGRP/Aimovig:https://migraine.com/living-migraine/aimovig-cost/. I hope this information might be useful to bring to your next appointment with your specialist. If you just want to vent, we are here for you anytime to provide information and support and are very glad you are a part of our community. Please stay in touch.

  • sbkris
    5 months ago

    Meant ‘years’ of migraines (20)

  • sbkris
    5 months ago

    I agree the cognitive impairment is the worst. Four years ago I had a hemapligic migraine attack after year of regular migraines. The HM left me with a year of recovery almost like a stroke. Have been very much improved since I trying a million different treatments. Last week had another attack. Worst thing. Forgetting the triggers. Experiencing horrendous pain and knowing going to hospital would be worse.ie bright light noise endless wait time… knowing how much it takes away from what i want to do and accomplish in the life. And the time I want to spend with friends and famy.

  • absentminded
    5 months ago

    What I want other migrainuers to know is that..

    Head pain isn’t my worst symptom. Severe cognitive dysfunction/impairment is the worst symptom. During an attack, I lose the ability to talk properly, slurry words IF I can talk, severe brain fog, walk without stumbling, and memory loss.

    Head pain is my second worst symptom. Head pain will typically be persistent, unresponsive to medications. Typically throbbing, pulsating, vice like pressure on temples.

    Third worst symptom is nausea. 85% of my attacks are accompanied by nausea; maybe 40% of attacks are accompanied by vomiting.

    And lastly, more than half of my attacks’ postdrome phases are worse than the actual attack. The symptoms associated with postdrome phases like fatigue, confusion are amplified severely. I just feel like I’ve been drinking for several days.

  • Ylwest
    4 months ago

    It’s hard when I slur and can’t get my words out and people judge me and think I’m intoxicated or on drugs.

  • Holly Baddour moderator
    4 months ago

    That’s incredibly hard, @ylwest! What you’re describing sounds like aphasia and is a very common side effect/symptom of migraine.https://migraine.com/blog/migraine-symptoms-transient-aphasia/ . You are not alone in navigating this. It’s very troubling and can be embarrassing and humiliating. It really illustrates how migraine is a comprehensive neurological disease, and not just a headache! Thinking of you and so glad you’re a part of our community. Please stay in touch.

  • MrsMiMoo
    5 months ago

    ah yes the Migraine hangover. The fatigue. The yawning. The dragging tiredness. The inability to concentrate. The watering eye. The loss of appetite. Having to do administrative tasks because I can’t speak to anyone for 4 days. I hate migraine. This heatwave weather has doubled my frequency and I’m suffering.

  • MrsMiMoo
    5 months ago

    ah yes the Migraine hangover. The fatigue. The yawning. The dragging tiredness. The inability to concentrate. The watering eye. The loss of appetite. Having to do administrative tasks because I can’t speak to anyone for 4 days. I hate migraine.

  • Jojiieme
    4 months ago

    I know I’ve said it before, but not everyone knows. I have acquired brain injury from a car crash decades ago. Some of my prodoming and most of my aftermaths are as bad as my worst ABI days: my tongue won’t move, my speech is really slurred (half my facial muscles and nerves are paralysed, and migraines make this more obvious), my brain jumps to all the wrong words so the aphasia is more exaggerated (I’m thinking the right word but saying something else); I’m so exhausted I fall over, I can’t stand straight; I fall off the toilet, I fall over brushing my hair, or brushing my teeth; I can’t keep my right eye open (right eyelid is semi-paralysed), and I start drooling as my mouth droops…
    While this is going on, slowly I start waking at night with my silent night-time migraines. Then, like tonight, I go 30 hours without sleep, and crash into the next full blown cycle… Ack!
    And people think ‘just go to bed at 9pm’ or ‘take a sleeping tablet’…! Grrrr…
    (I think I’m going to practice for International Talk Like A Pirate Day)

  • migrainesaretheworst
    5 months ago

    It’s so reassuring hearing that there are other folks out there dealing with similar issues. I’ve had migraines since I was a kid and chronic migraine for the last 8 years or so. It seems to light up during stressful times and for the last 5 weeks, I’ve been in the midst of an attack that just won’t go away. Friends and family members who get the occasional migraine all seem to think I’m doing something wrong and everyone’s an expert – “oh, well you just need to try this” and “you must not be taking the right thing because for me, I just need to do ABC and then it goes away” and “tell the doctor and s/he will give you something else and fix it.” Clearly, it is my own negligence that is causing the condition to linger ::facepalm:: People are losing patience with me, like my inability to cure myself using the methods available is indicative of a personal failure. What I’ve learned is that the lack of understanding of how piss-poor the available methods are is extremely pervasive.

    Like others, the head pain isn’t necessarily the worst thing (for me, it feels like my brain is swollen inside my skull and the slightest movement sets off a wave of nausea) and when it goes on for days and weeks at a time, you do have to do other things, all with a grimace and sometimes with vomit breaks in the middle. Yes, maybe I do want to go for a walk or swim, even if it might aggravate things a bit. No, it doesn’t mean I’m better, it just means I’m losing my mind and if I’m going to feel like garbage anyway, at least let me hold onto a tiny glimmer of my sanity. Instead of getting mad at me and needling me for “why can you do this but not that?” maybe try a little empathy and understanding? I wouldn’t wish this on anyone and judgment is the last thing someone with a migraine needs.

  • Holly Baddour moderator
    5 months ago

    Really appreciate your articulate comment on the topic of feeling blamed for having a neurological disease. You are so right that it is the lack of effective treatment options that is at fault, not you.

    Your description of actual symptoms is so apt and resonates with me deeply. The unrelenting nature of migraine does indeed lead to a desperate need to experience something more than a dark and quiet room every now and then which can confuse friends and loved ones.

    Many factors come up short and are lacking in relation to migraine: effective treatment options, true understanding of the disease, and most unfortunately, compassion.

    Very glad you are a part of our community- you can find support and empathy here! Stay in touch.

  • anonymouse
    5 months ago

    Thank you so much for this, and for the reassurance that what I experience is not unnormal (for lack of a better word). I can tolerate pain, I’ve always been able to, so my migraines aren’t debilitating until they hit a 7 or 8 on a pain scale, but the other symptoms that I get with them (mixing up words and syntax, inability to comprehend what someone is saying to me or what is printed, inability to focus, blurry vision, nausea, motion sickness, etc.) make it near impossible to function well.

    And I [n]th vote in agreement with the distraction part (since many others have agreed with that, too, I see, hah); migraines are the sole reason I took up certain forms of crafts, because they gave me a low-impact, low-movement way of distracting myself when one hits (and time permits).

  • Holly Baddour moderator
    5 months ago

    I just wanted to ring in to respond and resonate with your statement about picking up with crafts as a means of an outlet and distraction to help with the management of migraine. (https://migraine.com/living-migraine/getting-creative-chronic-migraine-workarounds/)

    I wonder how many of us are out there who are exploring our creative sides in ways we might otherwise not have done if it weren’t for migraine? What are the crafts you pursue?

    Thanks for chiming in!

  • Ylwest
    4 months ago

    It’s hard when I slur and can’t get my words out and people judge me and think I’m intoxicated or on drugs.

  • Trtlegrl27
    6 months ago

    Light, sound and smells are huge triggers/exacerbaters for me. I know I look crazy with my shades on inside and my earplugs. But it’s that or isolation.
    So many days being in public is an assault on thr senses.

  • Marla68
    6 months ago

    I’ve learned after 35 years with migraine that I don’t care what anyone else, family, friend, or stranger, thinks about it. I just don’t have that conversation with anyone.

    My migraine events are usually worse in the summer, and this hot, stormy, early summer is the worst I have had in several years. Weather conditions combined with sinus trouble, two major long-term stressful events, and adjusting some medications for fibromyalgia and spine pain started a nearly constant stream of migraines. I also learned at the eye doctor that my eyesight is deteriorating, thus explaining the sharp pain in one eye going into my head and quickly escalating into a migraine while I am editing a book. I had to stop the last edit.

    Sometimes it’s a buildup of triggers that creates an unstoppable cascade of daily, day-long migraines even with preventive meds and pain meds. Distraction does help, as does a change in body location.

  • abbey1997
    6 months ago

    This is not directly related to what we are posting, but if you are not getting what you need from your doctor look for a new one (preferably a headache specialist). I stayed with my neurologist way too long he made no changes and who was so ultr-conservative woth medication, I suffered. He wouldn’t even prescribe an antiemetic. I finally got off of my butt and found a headache specialist a year ago. I’m not doing great, but at least he’s trying things and gave me an antiemetic, which has saved many ER visits. You have to be your own advocate

  • abbey1997
    6 months ago

    How frustrating it is to lose words and not be able to finish a sentence because I can’t remember what things are called or people’s names (even if I’ve known them for 15 years)

  • freebird110564
    4 months ago

    I get so upset when I can’t remember names or thoughts that I want to convey to people. I never thought this was because of my headaches, just chalked it up to old age. This is something I need to check into. Thanks for sharing your frustration and know you are not alone.

  • brandtizzle
    6 months ago

    As a migraneur, The two emotions I feel all the time are guilt and shame. I feel like a bad daughter, an absent wife, an uncaring grandparent and aunt. I feel ashamed because I can’t do my job to the level I would like to. I’m a teacher, and it is my passion to love and teach kids. I feel like my family and my coworkers judge me even if no one ever says anything. (Sometimes they do.) And although I have identified triggers and tried every treatment, I have also learned that really, there is NOTHING I can do about it. The worst thing someone can say is, “Can’t the doctors figure out what’s causing it and fix it?” I have pursued that question and tried to find an answer for decades. I’ve tried every single thing I can find, and sometimes I’ll try them again. I want everyone to know that I have left no stone unturned and I will never give up. That work has paid off and I have a good doctor and a list of rescues I can try. Sometimes they work and I am pain free. In my twenties, I was never pain free. I just wish I didn’t feel like I let people down all of the time.

  • Marla68
    6 months ago

    No one has a right to judge you. They would not judge you if you had a broken back.

    You have failed no one. Having migraines is not your fault; you cannot control them. Your body is objecting to something or reacting to something.

    But I know you know all this intellectually. Please believe in your heart that you need to be taking care of yourself. And others should be concerned about how they can help make life easier for you.

  • Patiann6
    6 months ago

    What I wish others knew…. Just because a particular OTC med doesn’t work for you (or even for most) doesn’t mean it won’t work for me. And just because it works (occasionally) doesn’t mean it isn’t a migraine. You aren’t in my head. You aren’t having my pain or other symptoms. You don’t have the right to judge my migraine.

  • dwnmck
    6 months ago

    I experience migraines Always on the or behind my left eye. The pain sometimes will become so intense I can not lay down-it’s better if I pace. I imagine getting a Phillips screwdriver and a hammer —hammeri The screwdriver into my eyebrow in order to relive the pain. Crying make the pain worse. Usually I pass out due to the pain at this time.

  • anonymouse
    5 months ago

    I know you commented weeks ago, but just in case you still check this: have you asked your doctor about cluster headaches? They share some symptoms with migraines, but with cluster headaches, the pain is usually much more intense and focused on the same side/area of the face, and most sufferers of them say that pacing helps them cope with the headaches.

  • Candygramm
    7 months ago

    When I can’t figure out if it’s an allergy attack or a migraine or is it “both”. I have both allergies and migraines. Feels like a cold with severe cough and headache so now what is it really?

  • Lilredlavette
    7 months ago

    I wish everyone would just take a step back and think about the level of pain that someone experiences from Mirgaine. Also, just because you don’t “see” the disease it shouldn’t be discredited. I have learned to deal with the actual pain and find it very hard to listen to what my body is telling me. And with that, I actually make the symptoms worse when I don’t stop working or doing what I need to do at the onset of pain. Also, sometimes we don’t even get a warning that one is coming and they are the scariest. Migraine is NOT just a headache and I really don’t like to hear that phrase.

  • kamadew
    7 months ago

    I was certain there was nothing to be said that I hadn’t already heard or didn’t know after 58 years of steadily worsening and increasingly frequent migraines (now daily). I was wrong.I found such validation in your post, it nearly brought me to tears. I, also, am unresponsive to all tryptans and other abortives. I also have found my only relief in opioids. The stigma and judgement that go along with their use is a clear demonstration of the lack of understanding of family and friends of my willingness to try anything to gain respite from the daily pain and other symptoms that prevent me from doing those things I need & want to do. I am so tired of well meaning but unhelpful advice, and the idea that if I don’t follow it, it’s because I don’t want to get better, or I prefer to use opioids. Not in the least true. I have tried these things at some point, and I am tired of feeling that I need to justify my current treatment plan, whenever I don’t accept some new advice. Thank you. You have lifted a weight from my shoulders in many ways.

  • AngieS
    7 months ago

    I am so frustrated and downhearted by my chronic migraine. Six prophylactic drugs and no respite at all. I am awaiting botox trial. It is so debilitating living with pain everyday. Everything I do requires a huge, huge effort, most people have no idea what migrainers go through every day just to “function”. I must admit that I had no idea until I was ill myself. I hate living in limbo, hoping for my life back. I feel guilty as I have let my family down; both financially and how it affects the quality of all our lives. I fear my children will inherit this predisposition and my youngest daughter seems to have symptoms at 12 years old already. Perhaps this new drug CGRP will help all us migrainers soon?! I DO keep the faith (mostly) that I will improve and I hope everyone with migraine does too. Good luck x

  • abbey1997
    6 months ago

    Good luck with Botox. It has cut my migraines down to 15-17/month. Not great but better than daily.

    Next dtep, CGRP

  • napa219
    7 months ago

    I understand your frustrations,. I also understand about even trying to get the pain level down to a 5, I know you already know about medication over use so I will keep this brief. I have had cronic daily migraine for almost 10 years now, I was doing exactly what you are, trying to stay distracted by anything, just to get some relief and then resorting to pain meds to help with that relief, The pain medication snowballed until I was getting 2 and 3 migraines a day. I did something I thought I would never do, I made a decision to not let this define my life. I researched to find somewhere to go to get relief. I chose to go to Diamond headache clinic in Chicago. It was the first center with an inpatient treatment facility in the nation. I am so glad I did! I am completely free of pain medication and now I no longer have the 2 and 3 migraines a day! I still have migraines, almost daily. But through the treatment plan I am currently on I a

  • napa219
    7 months ago

    Sorry I got fumble fingered and hit post comment before I was finished. I was just saying that through the treatment plan I am on I am able to deal with my migraines on a much better basis. I am not walking around in a daze from the meds and I can actually do things with my family I have not been able to for years. I still have an unknown number of triggers that will probably effect me for the rest of my life, but I feel so much better. I just wanted to let you know that there is hope out there, and you don’t have to go through the rest of your life on pain medication. The only thing I now take when I have a migraine is either injections of Benadryl or Baclofen pills, which is a muscle relaxer. I will still have this disease for the rest of my life, most likely, but I don’t have to go through life without being able to do some of the things I enjoy. Thanks for listening to me ramble on. Take care everyone.

  • amberlynhughes
    7 months ago

    This story makes me have hope. I am at the worst I have ever been with my chronic migraines. I am only 20 years old and was diagnosed at 16, I am terrified of the idea of addiction or “rebound” migraine. I try to cope with my migraines when there on a scale of a 5/10 i can still manage my life and go to work. It’s when i get the side effects of blurred vision, vomiting, disoriented, numb hands and fingers, tingling sensations throughout the body. All of these physical side effects hit me at once and i get confused and more disoriented. I am working on a new treatment plan and your story gives me hope at the end of my tunnel! I do feel like my head will never feel “normal” i never TRULY feel no pain. There is always a dull pain no matter what.

  • msmandeejean
    8 months ago

    Thanks for sharing. I completely agree with the distraction part. As morbid as it sounds, suicide has crossed my mind several hundred times due to this condition, and without distraction, I’m sure I would have given up. Also, my tolerance level varies from day to day, and exhaustion cripples me far more often than the pain. I have had headaches of varying types literally as long as I can remember. This is my normal.

  • Joanna Bodner moderator
    8 months ago

    Hi there @msmandeejean, Thank you for being so open & honest about your feelings. Living with migraine can leave you feeling hopeless and know you are not alone in feeling this way, but know the world is a better place because you are here!! Even if you don’t feel that way sometimes. There is always somewhere to turn if you ever need immediate support or considering self-harm you can contact the National Hopeline Network: Call 1-800-SUICIDE (1-800-784-2433) 24- hour suicide prevention and support. Your call is free and confidential. You have an entire community here behind you & understand what you are going through. Thank your being here & always feel free to reach out. Warmly, Joanna (Migraine.com Team)

  • JaneBG
    8 months ago

    This article says exactly what I’ve been thinking. I feel as though I ALWAYS have some migraine symptoms. The actual pain comes when a series of triggers come together at once. My goal now is to make a list of my prodrome symptoms to enable me to medicate before the pain swoops in. I will speak with my provider to discuss pretreatment options. Thank you

  • debbieleq
    8 months ago

    I wish others knew that I am ultimately scared all the time. I am scared that the pain will never lessen. I am scared I will hurt someone because my migraines give me a rage of some type. (To be clear not a physical rage, just yelling and snappy). I am afraid I am losing my mind. I am afraid that one time when I lose my vision it will never come back. I am afraid that since my pain tolerance is extreme, if I overlook my pain my blood pressure will sky rocket and I will have bigger health concerns. (this has happened in the past and it took 3 courses of morphine to lower my pain…yes lower it not push it away completely). I am scared that my family will suffer because I cannot provide for them any longer since employers do not want an employee who cannot function 4-5 days a week. I am afraid that one day I will regret how much time I lost because I couldn’t get out of bed. But most of all I am terrified that this condition will continue to my children since each of them have had their own migraines.

  • AngieS
    7 months ago

    Dear Debbie I understand how you feel but remember that you do the best you can do everyday. Try not to be TOO hard on yourself as it’s something out if your control .

  • denisestephens
    9 months ago

    I’m on 200mg Topamax nightly and migraines have been under control for awhile now. However, a week ago I started having intense pain in the cheekbone area that radiates into the temple. I assumed it was a sinus infection so I went to the doctor & got antibiotics. Well the pain is still with me & this morning I decided to take a Maxalt pill. Guess what? The pain went away! Could I be having a new type of migraine? I have not been sleeping well because I lost my sweet 15 year old chihuahua 2 weeks ago.

  • dwnmck
    6 months ago

    Denise, today is 6/10/18. It’s my first day on the site. I read where you lost your sweet chihuahua of 15 years 3 months ago. I’m so sorry for your loss. Losing your pet-who I’m assuming was more like your child-a member of your family- was /is painful. I do hope you are sleeping better. And you are not experiencing any migraines. Having a furry, 4 legged child for 15 years reflects highly of you as a human. You are in my prayers. Dawn

  • elfk
    9 months ago

    I had a similar experience a couple years ago. Scared the crap out of me. My husband rolled back over in bed and said I “probably pinched a nerve”. I regularly go numb in both arms now….

  • Peki1
    9 months ago

    Working as a nurse, and coincidentally on the neurology floor, I had lost all feeling in my left arm. Every bit. There was a neourologist present who took me across the street to his office and he did testing. I was told that he was 99% sure that I had migraine in my body, which at the time he said, was extremly rare.

    After so many years, of living with this condition, which I might add, is NOT painful, I have learned to ignore it. Since that time, I have not experienced total numbness in any part of my body again; however, I do recognize that at any given time, my left side, especially face and hands, have less sensation that my right side.

    Just wanted to post this in case anyone else has the same….. however, apologetically, I have not taken time to see whether there are other posts of this sort, as this is my very first post and I have just signed on.

  • amberlynhughes
    7 months ago

    I am only 20 years old but was diagnosed with chronic migraines at age 16. I spent my entire senior year of high school vomiting in the school bathrooms. This past month my symptoms have gotten worse. Both of my arms, all the way to my finger tips go numb with a tingling sensation. Then it moves to my face where i feel like little pins are poking my face everywhere and I’m not able to speak. I get extremely disoriented to the point where I do not remember how i ended up in the place I am at. I also get so confused and disoriented i forget how to drive my car and use the bathroom in public. Reading your story about how your arm going numb made me feel like I’m not alone or abnormal for my experiences with my migraines.

  • bluebird
    8 months ago

    Thank you for sharing. The weird changes of manifestation of migraine over decades has yet to be explained..The “silent” or relatively pain free migraine episodes are not without fearful experience…and rising BP. So it is hard to say how much pain I am experiencing when the facial droop and slowed mentation, speech challenges , word finding difficulties and imbalance …dizziness and tinnitus photophobia / phonophobia etc all present and make me feel completely vulnerable and fogged out. Is this pain? It certainly is psychic pain. But is it using the same pain pathways meds are supposed to treat? Is it aura, prodrome, postdrome? because it lasts for hours not minutes. Nausea comes and goes long before these gremlins let go.I have slumped to the floor hopin I am not having a stroke but unable to move or call out for help So much drama when I prefer to think of myself as calm cool and collected. I am tired of decades of these mysteries Wanting to escape is the text of wanting to die for me. sometimes there is only patience. ugh. Thanks again for being so honest.
    .

  • Jeani
    7 months ago

    Wow, bluebird,

    You’ve explained exactly what I go through! When I see any of my doctors the first thing I’m asked is, “Do you have any pain?” “How much on a scale of one to ten” “Where is the pain?” I sit there dumbfounded. How do you explain the excruciating non physical pain from phono phobia when the fire engine with blaring siren rushes past? Fists over ears, I double my body, fall to the floor and screen in pain. Where is the pain? It’s not even physical. The best I can describe it is, “its like when someone scratches their fingernails on a blackboard.” Oh, and flashing lights? Maybe I won’t feel them, I’ll just pass out. And not being able to move or talk, yep, I wonder if its a stroke. Only when I finally come out of it as much as several hours later do I know it wasn’t. It’s so very frustrating!!
    It’s forever interrupting life. At this point, life can’t even get off the ground. I often wonder why I’m not dead yet. I believe there must be a reason unbeknownst to me. Therefore I keep hanging in there knowing tomorrow is another day. I’m still waiting for the proverbial fat lady to sing.

  • 9 months ago

    Like you, Sarah, headaches are the least of my disabling symptoms.I started having weird spells 10 years ago. At first, they weren’t bad. Just a minor inconvenience that I could ignore, but troubling none the less. I asked a few doctors about it, when I was seeing one for something else. All of them said they didn’t know what it was, but it probably wasn’t anything to worry about. Then I had a brain aneurysm rupture. The spells got worse. I started getting migraine with auras at the same time, something I used to experience before I got pregnant for my first child, but hadn’t had since. I’ve been to 4 neurologists about these episodes with spells that I have. Their first guess was epilepsy, but that was ruled out. The consensus became migraine. About a year after the rupture, I tried to go back to work and hung in there for about a year, but had to throw in the towel. The episodes with the spells is a nightmare. For more details, you can refer to Stories: Weird Episodes with Spells: Anyone? I’m desperately trying to find anyone who has the same symptoms. Maybe we could compare notes and find a common denominator. I’m going to keep looking until I find that person. I can’t be the only person in the history of mankind with these symptoms. Thanks for giving me an opportunity to present my case.

  • 9 months ago

    Does this mean migraine is just our brains malfunctioning? Why do they even call it migraine. I feel like it’s just brain damage. I have maybe 1 magraine free day per month. Since turning 42 things have gone completely downhill. In 2016 I was diagnosed with MDdS after a boat trip. Amitriptyline got me back to neutral but the side effects make it unrealistic for me to take that drug long term. Now I just suffer daily, mostly Aura. I’ve pulled out a portion of eyelashes because I feel a tickle in my left eye constantly. It just seems hopeless.

  • MigraineBabe
    9 months ago

    I am so grateful to read this article and know that at least someone understands my migraines. After reading all the comments I now know that I am not alone. I have been suffering from migraines for about 35years now. They have been getting progressively worse as time goes by. I now get migraines everyday. I can manage the 4 or 5 even a 6 and I can function fully. As I go up the pain scale i lose more of my functions. I have been on every medication thereis. I have been a guinea pig to all kinds of tests. Nothing has worked. I have learned to live with them and have learned to manage them in my life. It’s hard but some how I refuse to let it run my life.

  • abbey1997
    10 months ago

    I could have written that article with the exception of opiods. I’ve never been offered that as a solution and they won’t even give them to me in the ER (I believe they tend to see people claiming migraines as drug seekers).
    I’ve had migraines for 37 years (I’m 47). I have tried everything possible. My triptans are hit and miss. About 14 months ago I went from about 2-3 a week (with daily meds) to 27/month. Botox has brought me to about 15/month.
    I think what I wish people would understand is that not every migraine is debilitating, but the whole body symptoms are still just there. And please stop recommending diet changes, etc. because in 37 years I have tried it all. Mine are not stress induced Mom!
    I wish all of you a migraine free day

  • dragonfly1968
    10 months ago

    Thank you so much for this atticle. I’ve suffered from increasingly more severe and more frequent migraines over the past 22 years. For the past 10 years they’ve been daily and I’ve lived at a fairly normal pain level of 5 with the worst spikes going up to a 9 or 10. Over the years, I’ve had roller coaster migraines go up and down from 6 to 9 over 15 days. But most recently my symptoms are worsening and I’ve been off work for more than 3 weeks, in and out of hospital with no relief, polyneuropathy, little sleep and honestly I’m likely going to lose my job because who wants to emply someone who can’t be depended on for much of anything? No one understands how debilitating it is. If I’m on my phone playing a game or I go for a walk they don’t get that I’m just trying to distract myself from the pain. Anythjng to just try to forget about the pain for a few minutes. My triptans don’t work anymore. The preventatives make me feel horrible and also dont work. In fact, I’ve had worse migraines since starting this particular preventative. Life can feel pretty bleak at times, but I’ll keep trying to find a solution because what other choice is there?

  • AngieS
    7 months ago

    Dear Dragonfly 1968. I too am in a similar position only started getting migraine in my 40s but chronic everyday now. You must keep in hoping, it’s so hard but things HAVE to improve 😉 don’t they?!? Good luck to you.

  • headouchies
    10 months ago

    I’ve had migraines since I was 18 and am now 45. I’m bout done with them, they’ve ruined my life. I have at least 3 migraines per week and can’t really plan on anything. I guess it’s time for botox for migraines again

  • slayman
    10 months ago

    Well said! I would guess there are many of us who can relate to most everything you wrote.

  • nem360
    10 months ago

    There are times where I go weeks and it’s glorious, then there are times where it’s lasting days and even the dull chronic ring in my ear is deafening and life sucks. I normally just power through it because for so long I was told by people you’re to young to get migraines they are just headaches, now at 36 they believe me and it’s almost like they start at square one and I have had 30+yrs experience. The only time I get to non-functioning is when the aura I get blocks my vision enough I can’t see from that eye which usually leads to my ear being blocked on the same side so I am essentially blind and deaf on one side for usually a day or so. Life goes on so do we, my boyfriend whose migraines are not as severe as mine will hide under a blanket after taking meds for hours until it goes away he tells me all the time he has no clue how I do it but I just do.

  • RoseDM
    10 months ago

    I’ve always called mine “functioning migraines” because, most of the time, I’m not disabled & confined to a dark room. That is the last thing I want as such quiet solitude would leave me ONLY the pain to concentrate on.
    I had cervicogenic migraines for the past 20 yrs from disc problems & after 3 cervical spine surgeries, they were reduced from 6 days a week (often twice per day) to 1 or 2 per week. However, I do still get headaches every day (which respond to OTCs, something the migraines never responded to). And unfortunately, I have periods of increased near-daily migraines (from barometric pressure, etc.). After 2 decades, I guess I was left with susceptibility to migraines. Drat!

  • Steph
    10 months ago

    Thanks for your post, it is so important and relevant. I agree that migraine is so confusing and like you, for me the head pain is the least of my worries. The unpredictability of it is annoying to say the least. I get ‘attavks that last for days and include the nausea, dizziness, ringing in the ears, a neck so sore I cannot hold my head up and hot and cold flashes like I have a fever but I do not. Last week I missed work one day, tried to go the nest day and only made it half my commute and needed to turn back. No one understands, I feel I have lost who I used to be and am frustrated as hell about it. Thanks for sharing as we all struggle to live with this crazy condition. Thanks again for you openness and information. Sb

  • Deneysue
    10 months ago

    Wow! This is my story almost exactly!! Thank you

  • AZGail
    11 months ago

    I wish they would call this disorder migraine spectrum disease. Some people only have one migraine every few months and some of us have them daily. This is a huge spectrum of Disability and I think we need to re educate the public so that they understand one size does not fit all.

  • kelscho
    11 months ago

    This is the closest thing I’ve ever read to explaining how I feel of course with some differences because the problem with migraines is no 2 people are the same. I was a typical migraine with aura sufferer umtil they changed to a chronnic condition about
    25 years ago. I’ve been treated with nearly everything, been hospitalized and detoxed and told NO PAIN MEDS!!! But sometimes those are the only things that give me relief, until they don’t. Tried natural stuff etc etc etc. I feel like my headaches have a life of their own and every time I find a solution it’s only a matter of time until my head figures it out and starts hurting again. The pain is definetely not always the worse part, its the constant drain on my whole body. I feel tired and stressed and trying to explain to others is exausting! My family and friends send me more articles on “New” treatments and of course I’ve either tried it or I know it won’t help my type of headache. All the doctors sound like broken records, I haven’t even seen a neurologist in about 3 years. Just my pain management doc. The only plus about having headaches is I’ve been able to help diagnose others and give them advice on what to do since after 35+ years and over a dozen doctors I know more than most.

  • brunnhilde
    11 months ago

    THANK YOU for being the first person to say that pain is not their most disabling symptom! I have chronic migraines and am the same way, and I feel so isolated because I’m not throwing up or lying in a dark room or screaming in pain. I feel like I don’t deserve to call them migraines since I’m not fully crippled. I can’t relate to so many of the symptoms (vomiting, inability to get out of bed, screaming pain, etc.) other people have who try to empathize with me. I’ve started saying I just have headaches, or just not even mentioning it at all because no one understands that it’s the other symptoms that are more crippling (confusion, inability to focus, intense lethargy and exhaustion) than the pain, even when it’s bad. Your article is the first and only thing I’ve ever read that validates how I experience life. I can’t tell you how much it means to me. Thank you!

  • nem360
    10 months ago

    I will always trip over my words the day before a migraine hits, never fails. But after my accident a month ago I have not been able to take anything to make the dull headache go away. I was never to the point of exhaustion from the pain of a migraine but this is unbelievable. The headache has turned into a 2-3 day migraine 4 times now with every possible symptom minus the aura that you can get. The exhaustion and inability to write correctly and focus is just insane now, I never had it to this point and anyone else who experiences these symptoms has all my sympathy! It truly is not a one size fits all

  • Sarah Hackley author
    11 months ago

    I’m so glad to hear my words brought you comfort. Migraine is a truly unique disease in that we all experience it differently. I’m sorry you’ve felt like you’ve had to hide how you’re feeling, but I appreciate you sharing your story. We’re glad to have you as part of the community!

  • Soteria
    12 months ago

    I am sitting here at work with tears in my eyes as I read all my fellow migraineurs’ stories as I can relate to so many of them…the horrible, inescapable pain, nausea, the vomiting on the side of the road, chronic digestive problems, inability to get out of bed or make coherent sentences, the emergency room visits, clueless doctors, non-working meds (I have tried them all), memory loss, – the whole thing. Had occasional migraines since I was 5, a few each month and then daily ones when I went into menopause 10 years ago, basically your life shuts down or is completely altered. Have dealt with the well-meaning suggestions (and been guilty of that myself) and the isolation that being so incapacitated makes you feel. I can totally relate. I often said that if given the option of a life with migraines or a shorter life without, I’d happily take the shorter existence just to again have some kind of a life. But please let me offer you some hope. I realize that this will not be for everyone but it will be hope for some – I am fortunate enough to live in a city where the clinical trials for the CGRP antibody were being performed, and was enrolled in a trial. And it worked. I no longer have the hideous pain or migraine frequency, the ones I do get are much milder and more of an annoyance than totally incapacitating. I have begun to feel energy for life and activities that I thought was gone forever (I hadn’t realized how much energy I had lost until it started to come back. Most of what we migraineurs attribute to ‘energy’ is just sheer resolve and determination. it’s lovely when you actually start to feel enthusiasm that isn’t forced again) I have been following the progression of this ‘drug’ on the internet and know that one of the companies is set to go before FDA for approval in May, and they hope to have it on the market and available by 3rd quarter this year. For some (I truly hope all) of you, this may be your silver bullet. I never thought it would work for me because nothing else did, so I really had no expectations. I wanted to write this because I know how it feels to think this condition is permanent and that this is how your life will always be. Please hang on – things CAN change.

  • Sarah Hackley author
    11 months ago

    I’ve heard good things about the CGRP trials, and I am glad to hear the trial drug worked for you. I think many of us are following the developments closely. I’m certainly hopeful! Thank you for sharing your story, and I hope you continue to feel better.

  • Pump2Duncan
    12 months ago

    I wish others knew that my pain is real even when I smile through the PTA meeting or the whatever meeting. That after that meeting, when I’m finally alone, I’ll get in my car and ride home in silence, the smile is gone the second I leave the room – trying hard not to pull over and throw up on the way home. But I’d feel like I let my kids down if I didn’t show up.

    How much of a failure I felt like when my 6 year old would have to pull a cold hot dog out of the fridge for dinner because I couldn’t pull myself out of bed when I was a single mom. Or I had to wake him up at 2:00 in the morning so we could go to the pharmacy and pick up my Imitrex because I had ran out and had a pounding migraine and HAD to work in the morning. How he’s still the only one that knows my fake pain smile and my real one. How I still absolutely HATE that migraine is part of his childhood memories.

    How embarrassing it is to constantly take pills for a “headache” and I try to wait until no one is watching. And since I try to smile through pain as best as I can since the pain comes so often, no one really thinks the pain is as bad as it. I swear if I hear “MAN you take a lot of pills” one more time, I might snap. No one says that about other people’s pain. Another family member of mine has a chronic condition, no one says that to him. They don’t tell him to cut out dairy and he’ll be fine.

    Other Migrainers have discounted my pain in the past because they’ve seen me working or parenting. I wish they knew that some migrainers are single parents and HAVE to suffer through the pain and instead of discounting their pain, perhaps offer them a hand. They probably need it.

  • Sarah Hackley author
    11 months ago

    I understand your situation all too well. I think many of us parents with migraine push through when we should really rest. For me, there’s always a lot of guilt around not being present for my kids in the ways I think I should be. However, it’s important to remember that we’re doing the best we can, and we love our children deeply. They see that. I know they do. And you’re not alone in feeling as though your pain isn’t taken seriously enough. I know many of us here on Migraine.com can relate. I’m sorry you’ve felt like that, but I hope this community can bring you some comfort in knowing you’re not alone. Thank you for sharing your story with us.

  • eknc
    6 months ago

    I just had to reassure you! I am in my 40’s with 2 kids and very occasional migraines. But my mother suffered tremendously when I was young. Yes, there were days when we had to play quietly in a dark apartment. But I am so impressed with what a strong woman my mother is and what an amazing job she did raising us. I know you don’t feel like you are the mother you imagined being, but that does NOT mean you are anything short of an amazing mother and role model!

  • mrst53
    10 months ago

    I don’t know how my son and I got thru his young years with my migraines. When he was a baby, I put him in his playpen where he could see me and I would just lie on the couch with ice packs. My son is 41 and I still feel guilty for the things I put him thru, and the things we missed out on together.

  • pigen51
    12 months ago

    I wish that other migrainers knew that like them, I too have ” been there, done that”. I have had chronic migraines since I was an adult, and had some from when I was even younger than that. They became near daily around 7 or 8 years ago. I have gone to HA clinics, all the Nueros here in my city, and the closest big city. I have gone to our closest university, I have been chasing down this disease since I was 18 and I am now 57. I probably know as much about migraines as many doctors.

    When I tell people that I finally got on social security disability, even those who suffer migraines, many times, the first thing I hear is, ” Did your migraines go away now?” I kind of want to punch them in the neck, that is so stupid. But of course, I don’t, because that would not be nice. And we always have to be nice, right? What I wish other migrainers knew was that there are some of us who have been fighting this for decades, and the old, did you think to try a food diary trick, while it might seem helpful, is something that we have done so many times that we should own stock in Staples. I know that you can’t say that you have tried everything, because there are always new drugs, in different combinations coming out, and your body is always changing. But trust me, you probably are not going to hit on some new idea or technique that myself or one of the dozens of different medical professionals that I have seen have not considered. It is not that I don’t even appreciate it, it is just that after awhile, all of the various treatments have become a blur, and when you toss something out, I hate to try to focus and come up with exactly who and when I tried it, what were the side effects, and why I either didn’t continue with it, or what ever. What I always appreciate from other migraine suffers is when they tell me, hey, you know what, I had a bad one last night. I saw doctor smith at the ER. How does he treat you, if you have ever seen him? That lets me give feed back to you if I want to, and lets me decide to rather disengage from the discussion if I chose to. You can even ask me for advice, or hell, ask me to go out for coffee when we both have a good day, if ever. I am sorry for the rant today, but I am out of my abortive and have a bad one going on. And my doctor and I came to an agreement that I will stay out of the ER, as they have begun to question him about me coming in so often. He said that I don’t want to get my name on the naughty list. I agreed with him.

  • Oildoc
    12 months ago

    I wish both people with migraines and headaches would understand that I feel like taking my MM and sit in the recliner and do nothing but watch TV. I don’t like to go out because walking hurts. I have lived with pain level of 6 almost all last year -that’s background! I do what I do, take drugs, take medicinal marijuana, whatever it takes. At my age (71) I don’t mind becoming hooked either I don’t want to because I was hooked while taking my Ph.D. I did get through the education with a migraine most everyday. All you out there without a headache don’t feel so smug because you may marry into them or get HA’s yourself.
    Also, remember that migraines don’t seem to care what you do, who you are, or how much money you have. They like anyone. All the other problems with migraines tag along just like they belong. Living with pain is just that -you can do somethings and not other things.
    Understanding would be nice.

  • cruz
    12 months ago

    The most annoying and stressful situation is having family members or friends who have never suffered “a severe migraine or just a one time migraine” tell you what you should be doing about your migraines. I’ve had my party-goers sisters in law telling my husband I should start elininating foods I eat and that i shouldn’t drink pop because of the sugar. They have no clue what I eat or drink. The fact they can sit there for any lenghth of time discussing what I should be doing and why it isn’t fair to my husband that I’m not with him at these parties really makes me want to wish them a week long migraine! I hold a full-time job working for 4 very busy attorneys over 40 hours a week, I’m 5’4 and 110 pounds. I started with migraines when I was 11 years old, went to 2 or 3 migraines a month, in my twenties progressed to 3 or more a week, and now I get them every day. I have chronic migraines, recently saw a new neurologist and she proudly diagnosed me with “migraines.” No shit! My doctor suggested I try seeing this new neurologist in hopes of getting botox treatments from her, turned out she doesn’t do botox, nor does she have after 5 o’clock or weekend hours.

    As to my in-laws, I’m feeling these nosy idiots who know nothing about migraines because they never experienced one are just plain toxic to my system.

  • Dfly77
    9 months ago

    I understand how the advice is sheerly annoying. My coworkers are constantly getting botox for their vanity so anytime I have a migraine they act like I’m the luckiest person because I should be able to get botox covered under medical. I’m tired of hearing this. Does it really work???

  • Deneysue
    10 months ago

    I wish my husband would just have one monster migraine. I know that sounds bad, but maybe then he would understand what I am going through.

  • jcollup
    12 months ago

    So glad you wrote this! I have some co morbid conditions, limiting some meds I can try, (like NSAIDS), and others I am allergic to, or have a bad reaction.
    My migraines vary from mild to severe, and I too have vision problems, fatigue, vertitgo, nausea, and irritibilty before and after. I even get bradycardic before a migraine! I too have been lectured about opioids and rebound headaches. We should all remember that migraines are a nuerological disease, and not a minor thing, no matter what each individual does to cope, and not judge others. For instance, I have some gliosis in the frontal lobe, scars from severe migraines! Advocate for yourself, and do whatever it takes to cope! I only do one round of opioids, for instance, then I turn to Phenagren, caffiene, and a herbal medication with belladonna, which I recently discovered can help.
    Stay strong!

  • RainyDay
    12 months ago

    This is an excellent question to pose to chronic migraneurs and I am thankful for the opportunity to share my response. I agree that even though all of us are very experienced in the world of migraine pain, each one of us has our own unique journey through this painful, confusing, misunderstood and often terrifying place. My migraines have been plaguing me for over 20 years and for the last 14 years, I have not had one single day without a migraine. Not one day in 14 years! Like many of you, I have that constant pain in my head that has become like an ever-present drum corps playing in my brain and as much as possible, I am able to function in spite of their “song”. I use the word “function” lightly, meaning I can carry on an intelligent conversation, use dimmed screens on computers and other electronics, perform the requirements of my job and generally act like a person not in severe pain. However, when the pain spikes out of the functioning range, it is an entirely different story. Unfortunately, my spikes far outnumber the plateaus of “normal” pain and I find myself frequently in mountains of pain. Like most of you reading this, I too have tried every preventative treatment available for migraines and quite a few that my doctors just wanted to try for migraines even though they had no history of migraine involvement of any kind. I have also tried many alternative therapies and even in-patient headache treatment programs, all to no avail. I am cautious about MOH and rebounds, but I have pain management now and stick to a strict med schedule. This is the only way that I have been able to have any semblance of a life. When I am experiencing a migraine spike, it feels like the world has vanished and all I can focus on is the excruciating, debilitating, hellacious pain emanating from my brain often accompanied by nausea, vomiting, neck and shoulder pain, visual disturbances and heat intolerance. My response to this pain is to basically barricade myself in my pitch black bedroom, turn the air conditioner down to 60 degrees or lower, even in the dead of winter, try desperately to sleep through the pain and put a strategically placed bucket next to the bed in the event that my lunch makes a repeat appearance before I can get to the bathroom. I am incredibly blessed to have an amazing husband that checks on me and makes sure that all my needs are taken care of no matter how long the migraine lasts. Also, I have the additional comfort of snugglepuppies and cuddly kittens that help me not feel quite so alone by taking turns hanging out with me in the cold, dark bedroom.
    Of course, I am now realizing that I really haven’t answered the question asked originally, “what I wish others with migraines knew?” So, here’s my answer to that. I wish that they knew that sometimes I may have a smile on my face, but I am really in severe pain. I wish they knew that when I say I can’t do something, it is NEVER a copout. I really can’t do it. Believe me, I take advantage of every opportunity to have fun when I am able. I wish they knew that when I say I have a migraine 24/7/365 and they say that they have a migraine once or twice a month and they know how I feel, that NO, they really don’t know how I feel. What I wouldn’t give for a once or twice a month migraine!! I wish they knew that I know all about migraines just like they do and don’t need to be lectured on prevention or MOH. I wish they knew that I know my triggers, my stressors, my limitations, etc… and that these are different for everyone. Most of all, I wish they knew that even though we all have different experiences, we are all trapped in the same world of migraine pain and through sharing our journeys with each other, perhaps the incredible burden of migraine disease we all carry might become a little lighter and the darkness we live in less terrifying.

  • Oildoc
    12 months ago

    Boy, am I ever with you. I too am ‘blessed’ with daily migraines and a wife who gets HAs occasionally not hesitating to tell me that I am experiencing MOH, or stressors or food allergy’s, or, or, or. I look after her with her HAs but she rolls her eyes at my announcement, “I have a migraine or my head hurts.” I feel terrible not going out with her sometimes but really, it’s all I can do to make it through the day.
    Life ‘ain’t’ easy with migraines but if you have support you can make things happen or you can go to bed, shut down and not worry about offending anyone.
    Life with migraine can work -we are all prove of that, if others would just understand.

  • VdeV
    12 months ago

    I am so glad not to have that meme floating around my facebook friends pages, I am lucky that I mostly have loving friends that may not thoroughly get what all Migraine does, but at least get that with medications and other help that one can experience music, soft talking, and low light situation screen time.I feel lucky to have access to acute pain medication, knowing how hard it can be even if you do have insurance AND a neurologist! But once in a while I do see that distrusting look when I mention my limitations due to migraine….the excuse. Whatever, these folks end up being incapable of true understanding, so they won’t be important to me. That said, I feel bad for those of you who suffer and work, and have to report to a boss, or have employees doubting your issues. Much love to all. the myriad of symptoms, side effects of drugs and other methods of attempted relief, and complicated dynamics with friends and family are really difficult for us all.

  • StefD
    1 year ago

    Thank you Sarah. I’ve spent the last 30 yrs of my life with the “push through” mentality. I stay home when the pain/neurological symptoms make it unsafe for me to drive. I do a lot of OTC & RX juggling to avoid MOH & Rebounding.

    As I said to sweet sole who pulled over to see if I was ok because I pushed through to long and had to pull to the shoulder of the freeway to vomit on my way home from work in the middle of the day; “if I stayed home every time I had pain, I’d never get out of bed.”

  • Sarah Hackley author
    12 months ago

    I’m very similar, and I definitely have the days when I’ve pushed myself too far and my body lets me know. Often on the side of the road! Thank you for reading and commenting. I hope you get time to relax over the holidays.

  • Daniontheisland
    1 year ago

    This is so good to have found this forum! There is a community of us! A group of people who understand.
    I am now 51 but have suffered terrible migraines since I was 7 and am presently having them at least three times a week. Last week I was in at emergency having pethadine ( I think you call it something else in the U.S.) because the pain was crippling and I had been vomiting for 12 hours.
    I have lost two jobs in my life from migraine.
    I was also accompanied by violent migraine and vomiting as I was giving birth to both my children.
    It is a problem that migraines are ‘invisible’. Unlike a leg in plaster, most people are unable to fathom the intensity of the pain and the other debilitating symptoms that come with it.
    Unless my migraines make me unable to function, I have spent my life trying not to show I have a migraine, trying to be normal and sociable. I have become very sensitive to not being seen as that person who is always sick. So with the pain of the migraine comes the extra pressure of trying to be normal and trying to hide the migraine. Which I know if I had a broken leg in a plaster I wouldn’t feel the need at all to hide it!
    Thankyou! It is so good to be able to express without reservation.
    It is also a help to hear about everybody else’s experiences.

  • 11 months ago

    Hello
    I am new to this group. I wish that some doctors would UNDERSTAND MIGRAINES! I moved from West Tennessee to SO California because I have barometric pressure triggered migraines. Another main trigger is strong scents such as bleach or perfumes.
    My transportation driver showed up to pick me up for an appointment and she was wearing lots of perfume wich gave me a migraine. My regular drs do not understand why I just got a pain shot for the barometric pressure change, then I have to go back again because of someone else came around me that should not have.
    This is NOT SOMETHING THAT I CAN CONTROL! Like many others here I have tried the meds to get rid of it, but nothing works, but a pain shot.
    Terri

  • hikerbiker
    10 months ago

    I am in the same migraine space. I moved from California (sea level) to Colorado (mile high) and within a year, had my first migraine at 35 years old 22 years ago. The onset was a panic attack, and then the recurrent migraines.
    I also have developed extreme sensitivity to most smells that are fragrant. Perfume, room freshener, lotion, make up, hairspray, shampoo, detergent, etc can bring on a migraine in 10 minutes. When the weather completely changes, like here in Colorado, sometimes going from 50 degrees and sunny to 20 and snowing overnight, I will wake up with a migraine. My (former) neurologist didn’t believe in the barometric contribution to my illness but I know, and you know and others in our spectrum swear and live in its truth. I’m calling it my invisible disease. It’s completely changing how I live right now. Even going to bible study and pleading with people to obstain from their fragrances for 2 hours a week in this class doesn’t seem to make a difference in their understanding. I don’t wear a cast, use a cane, need hearing aids, or read Braille…but my disability is as real as those are. My functionality is completely limited and dependent on not getting that headache. And yet that compassion seems to be lacking…they don’t “see” anything wrong. I wouldn’t wish this disease on anyone, but even one hour in my shoes, or should I say head, maybe they would understand, and have second thoughts before spraying, lathering or smoothing on the fragrances they most likely could avoid being in places we’d like to be, and have tried to explain our sensitivity. Ten minutes in a room with that, and I’m 2-3 days in a migraine. Down and out. I’m not the worse off in the world by far, but I am asking for understanding and compassion when I have been courageous and forthcoming to explain my issue and ask for help. Blessings to all my migraineur friends.

  • Linds91
    11 months ago

    Hey Terri,
    I know exactly how you feel. My neurologist just doesn’t understand how none of the medications seem to break a migraine cycle for me once I get one and she just looks at me like I have 10 heads because shots, IVs, pill, nothing works.
    One of my triggers is the barometic pressure change as well, living in NY makes it a little difficult. I am like a forecast for when a storm is to come because I’ll get a migraine.
    Have you looked into finding a doctor who specializes in Headaches/Migraines? I find that they understand more and come up with more ideas as to how to make it so that you aren’t just dealing with it but overcoming it.

  • Sarah Hackley author
    1 year ago

    Thank you for sharing. I, too, understand going through the days trying to appear “well.” It’s the double-edged sword of an invisible illness, and one I think we all can understand. That’s one of the great things about this community; we know we aren’t alone. I’m thankful for that, and this community, every day, and I love to hear how it is helping you all as well. Again, thank you for sharing.

  • Daniontheisland
    1 year ago

    Thankyou Sarah

  • pappa
    1 year ago

    Well my daughters migraines started about 4 months ago. First they were around here menstrual cycle. Then about 6 weeks ago they came and never left. She missed almost a month of school. Dizzy and nauseous. Took her to the doctors and received shots and prescriptions nothing. We then took her to a neurologist. More shots more meds. Nothing. Finally after looking online for a few days we decided to try inner ear piercing. Instant relief of dizziness and nauseous. The pain disappeared from the front of her head. She still has pain in the back but it is not debilitating. Went back to the ear piercer. We have to wait until the ear heals from the pierce then we are going to try a larger gauge ring. Finally some hope. It was well worth the $90 to get it done. If you are thinking about it. try it. Just make sure you do both ears. If you have tried this and only had one side done, go back and get the other side done. A simple test can probably tell you at home if it will work. He took a toothpick and broke off the end so it was not sharp. Then started pressing up from the bottom. Moving to different spots in the ear. Not enough to penetrate but enough to put pressure on the nerve. Look up online where they pierce the inner part of the ear to get an idea. My daughter new right away as the pain left her. I hope this helps someone else.
    Pappa

  • VdeV
    12 months ago

    i have been looking into doing that too, I hope to hear about how well it continues to work, as some people have initial relief but then it subsides back into pain. I do hope she stays well! For a young woman, she deserves to have a life! Cheers!

  • Sarah Hackley author
    1 year ago

    I’m so glad your daughter found something that works for her! I wish her continued relief. Thank you for sharing.

  • Lr mom
    1 year ago

    First, I want to say that I am happy to be in a safe place where I can talk about my issues with migraines. What I want fellow migraine sufferers to know about mine is: what they feel like. Usually nausia and head pain. I get them at least twice a week, sometimes more. I can have pain anywhere, but it’s usually in my forehead and also can exhibit in the back of my head.What I do: I currently treat with propanalal and fioriset. I do not spell very well. Sometimes these meds don’t do anything. I have had the most success with marijuana edibles. But even those don’t always work, and I also still take the other two meds.I do get pre-migraine, mostly balance issues are worsened and my speech becomes weird. Those who don’t know me would not think so, but those who have been around me for any length of time notice that I have to think of the right words and a lot of times will reverse things. He instead of she. It’s hard to to formulate thoughtts too. I don’t really slur. Not unless the migraine is very very bad. But in pre-migraine, I sometimes just can’t get it together so I keep circling until I can get out what I want to say. Sometimes, will start talking and just forget what I was saying. This is not happening because I did edibles first or anything. This is pre-migraine for me.I am grateful that I have not had but a couple of the really severe ones that put me in the ER. And even then I felt like a person who is trying to explain calculous to a bunch of rocks. I mean it’s like they aren’t saying you’re lying, but it’s this underlying attitude of I do not believe you. What doesn’t work for me: hydrocodone doesn’t do a thing for my migraines. Nor does valium. Trying to learn anything new when I have a migraine doesn’t work either. It’s like trying to put an oyster in a slot machine. What does work: massage when I can find someone who is willing. Sex if I can mentally get to a place where that is possible. Lucky for me in this area, my husband is most understanding and patient. That’s part of how I know that massage will work. Cbd oil. This is more of a bandade fix than anything. You have a migraine, you take your cbd drops, you feel relief. You’d better use this short window to get to a stopping place and then get something stronger at home and go lie down. Of course, you can also just keep taking CBD. Peppermint oil: I keep some in my purse in a travel atomizer. But it’s also more of a bandade fix. It works for 30 minutes to an hour. Adville. I try not to use this too often as my doctor told me it causes rebound headaches. Sleep. That’s really the best way to fix them, if I can sleep, but since sleep often elludes me, this is a better theory than a reality. What I wish my people could understand: I wish my people, family and friends could understand is that just because I am doing stuff all the time when I say my head is hurting doesn’t mean it’s hurting less. It just means I can push it to the background because I’ve been having migraines since I was a teenager. aTriggers: I have several triggers. Stress is by far the biggest. Also, sensitivity sound and smells. Most of the foods that are supposed to trigger migraines don’t with me. I have often noticed though that I will have migraines after eating mexican food or chinese food. So I probably have MSG sensitivity. I don’t feel, at this point that I can do anything about that because it’s in everything. I have noticed though, that putting a name to it made it so that my body lost its desire for pizza and I believe, other things that might be higher in msg. I’m not weird about food. I don’t go around trying to avoid all msg. I don’t think it’s possible to do that and live in america and be blind. So I just pay attention and try to remember which foods trigger most of the migraines the most and not eat those as much. I think I have already mentioned that stress is a huge trigger. this is the truly debilitating thing for me. It’s so bad that any time I try to do something, like learn a new song or learn anything, for that matter, it causes migraines to happen. It’s very hard to be in a band when just the mere act of practicing causes migraines, so you don’t practice a lot! In 2014, I started a program at a training center here in Little Rock, and that’s when I noticed that the migraines, which were still present, but managable, had picked up. That was the first instance of what we jokingly, or maybe not so jokingly call the brain pain… (Water boy movie) It is sudden and very sharp and thankfully doesn’t last but a few seconds. Sometimes it’s all by itself, and sometimes, it’s in the middle of a migraine. I’ll just be going along doing my distraction thing and wham. It will catch me in mid sentence sometimes. Anyway, when the migraines started getting worse, I stuck it out as long as I could in the classes, but when the center was threatening to close, and I just stopped going, they eventually called with a false alarm. We’re back open, and I had to decline to come back because I was still having migraines so bad even though I wasn’t in the classes. So I never got to be a certified adaptive tech person. This is truly the hardest part about this disease, the difficulty in learning, because you just can’t do a lot at one time. You kind of have to learn to do just a small amount and then actually stop. The actually stopping is very hardFinal thing I want other migraine sufferers to know about me: I might not be in bed with the covers pulled over my head, or have migraines that last for years, but they are just as real, just in a different way. I have them more often I guess, and I guess I do with them what you do with anything that’s going on in the background. Right now, for instance, the freezer is humming out here, but I barely give it a thought. There are cars too, and I notice them, but they aren’t distracting me. It’s similar with migraine, but a little harder to push that pain away. This is going to sound weird, but there is so much I do not know about my own problem, and I am learning a lot on this sight. I have never really had anyone to talk to. My family was kind of the stiff uper lip type of family. It was something everyone knew I had, but nobody could understand, and I figured nobody really wanted to hear about them. This post is probably the most I have ever talked about them before. I hope it helps someone!! One more trigger I should mention, that I forgot about, hormones. My cycle seems to effect migraines a lot. I get them at the start, and when the unpleasant is over. I also get them when I am ovulating. I probably have other hormone surges inbetween that I don’t know about.

  • Sarah Hackley author
    1 year ago

    Thank you for sharing your story with us. We’re glad to have you as part of the community! My prodrome and aura phases sound a lot like your premigraine phase. I get vertigo and can’t walk properly, and my ability to speak gets completely messed up. Like you, I often find myself circling what I’m trying to say until I can get it out, and I misuse words or replace the ones I mean with something else so often my daughter has a running joke about it. It makes me nervous to talk on the phone or have meetings in person for work, but luckily I have the ability to communicate through email, text, and the internet. It makes it so much easier! Again, thank you for sharing your story. It’s always nice to know we aren’t alone.

  • kabrissey1
    1 year ago

    Sometimes the pill doesn’t fix it all by itself. Sometimes I really have to sleep for 12 hours to make it go away. Also, me listening to music even though I have sound sensitivity usually means that there’s a different sound I’m trying to avoid that I hear without my headphones in. For example, I heard my neighbor’s clock alarm continuously going off. It sounded faint to my friend, but when I have a migraine, it’s all I can focus on unless I completely drown it out.

  • Sarah Hackley author
    1 year ago

    Thank you for sharing! I understand exactly what you mean by trying to drown out another noise. I do that, too!

  • RachelRoo
    1 year ago

    I just stumbled across this page today but wow, I wanted to commend the author for her powerful writing and her confidence in her care choices. I really don’t ‘worry’ about medication overuse either, or not to the point that I know some specialists (and many posters in this community) would suggest I should. I have a job that matters deeply to me, and I have an autistic daughter who needs me to raise her, and the choice to take a day of life ‘off’ and just not medicate is one I rarely to never have. I’ve felt guilt and shame before, worry that I don’t tolerate pain as well as other migraneurs and I need to become ‘tougher’ so I can be more selective about medications and more involved in life. Hearing a voice, any voice, with this confidence and power in it telling me otherwise, that I -can- make choices for what works for me and that I need not believe or function the same way as others with this disease do was powerful. And well timed, as today I am staying home from work and lying in bed doing nothing and was already putting myself through the paces of what I -should- be doing. Thank you, OP

  • Sarah Hackley author
    1 year ago

    I am so glad the article brought you comfort. I think being our own advocate and reminding ourselves that we are the experts of our own bodies are two of the most empowering things we can do as individuals who live with chronic conditions. I commend you for working to put the needs of you and your daughter first. You are the only one who can know what truly works for you to improve your quality of life and keep you going. As a mother, I completely understand, and I hope you were able to get some guilt-free, shame-free rest the other day.

  • screaminlucy
    1 year ago

    What I wish others knew about Migraine is: I don’t fake them. The pain is so severe that I can hardly stand it when it come. for someone to say that I’m faking one really upset me. I also wish that the medical field ERS in general would be a little more understand , that Migraines is a disabling medical condition,just like so many other things.

  • Sarah Hackley author
    1 year ago

    I hear you! Having people discount what we’re experiencing is hard to deal with. I’m hoping that as awareness of migraine grows, more people, especially in the medical profession, will have greater empathy and understanding. Thank you for commenting!

  • nailah17
    1 year ago

    Dear Sarah, I too am a severe sufferer of migraines and extreme aura attacks. If only people understood and could offer support. Even this time, I have been laid in my bed for 4 days without food. Enable to
    Speak out and explain to my husband what I’m going through. When you try to lift your head but it’s like your in a roundabout spinning and choose to lay back down.

    I wish others understood, and didnt be rude and say oh you have a headache. Loosing your power to hear, see and move around freely is something terrible for anyone to experience.

    How do you manage to recover and go back to normal? Previously I was ok after 2-3 days.. sometimes even hours. But not this time, this time has shaken me for the worst. I couldn’t bare even a glass of water without wanting to vomit? Did you ever suffer similar feelings? I took a medicine my doctor prescribed called Vimovo but that also didn’t work. I’m scared as I lost 4/5 days and scared it might continue.

    Any advice? Thank you so much x

  • Marjorieson
    7 months ago

    If you are down for 4 days and not taking po you need to get IV fluids or at least get symptoms to decrease to take po!!!

  • Sarah Hackley author
    1 year ago

    Nailah, I feel your fear. I’m so sorry you’re having such severe attacks. Mine tend to come in cycles, which means sometimes I’m doing quite well and other times I’m extremely debilitated. These cycles tend to occur regardless of how well I’m doing with trigger management, lifestyle factors, etc. Since the medications don’t work to stop it (for me), I mostly get through by reminding myself that the worst moments will end. It’s all part of the cycle. Then, I work hard to focus on what I could do that day, instead of what I couldn’t, and practice patience with myself. I know that isn’t what you were asking, but it’s really the only thing I’ve found that works for me to help me stay mindful, positive, and unafraid. If you have very severe vomiting though, make sure you go in for treatment. That can be grow dangerous quickly. An IV of Zofran usually works for me in those cases, even when the pills don’t.

  • julieack
    1 year ago

    Thank you for this post. I relate to so much of what I have read here. The 20 year struggle for answers, the insensitive doctors, trying anything and everything. I have come to understand that every body is different, we all react differently to migraine, have different symptoms, etc. What works for someone else may not work for me and vice versa.

    I did the Migraine Miracle diet for a couple of months. During the course of that, I weaned myself off Topomax and Maxalt – neither of which had worked very well for at least six months. Yet, I was still taking both, hoping for some relief.

    With the help of a nutritionist and counseling, I have now found a sweet spot of knowing what I can eat without triggering a migraine. I eat a lot less carbs and sugar, and avoid gluten, though I have some occasionally. When I feel a migraine coming on, I stop everything, meditate, apply peppermint oil to my scalp. Sometimes I exercise – a brisk walk. I haven’t used any medication for headaches since probably February or March, and in the past few months, I’ve only had one headache that made me consider taking something. When I get headaches now, they usually only last a couple of hours, and are pretty mild. I used to have severe headaches for weeks on end, fairly frequently.

    Following the Migraine Miracle diet religiously made my life unmanageable. But taking some of the principles, using the parts that help me, has made a big difference. I do believe that the Maxalt had stopped helping, and was triggering headaches instead. Going off those meds was very hard, but I’m glad I did – with a doctor’s help.

    If you’re still suffering, keep searching. I know it’s hard, but don’t give up.

  • nailah17
    1 year ago

    Dear Julie, I noticed a pattern and maybe others have experienced this. I was told to stop eating cheese and when I did the migraines slowly stoped… I also started to eat 7-10 raw almonds every day. I didn’t see any migraines for over a year…

    I think I made the mistake and has cheese in my egg sandwich for 2/3 weeks in a row… no almonds and slept 5 hours per day! Now this is the worst attack I have ever suffered in my 32 years. Extreme loss of movement, senses and all.

    Maybe we’re all different but sharing our stories may help each other somehow.

    Xxx

  • parmes
    1 year ago

    It was difficult reading this article; honestly it’s been difficult reading all of these articles because I can relate to everything but don’t know how to find help. I’ve been taught for so long that this isn’t something to bother a doctor about, no matter how many days in a row you wake up with your head splitting open.
    My parents basically taught me that I was a weak person, that I should be able to handle daily pain like this. I would tough it out as best as I could but every since middle school I’ve had migraines bad enough to send me home at least 3 times a week. I would miss so much school and of course it was due to my own weakness. So they started encouraging me to take ibuprofen like it was a cure-all, and when that never worked (because my pain tolerance is through the roof, if I’m feeling it it’s already too late) they accused me of “not thinking positive enough thoughts, because it’s your negativity that’s poisoning you”.
    At 21 years old I had a grand mal and was advised to see a neurologist, and my mother insisted she be with me at every visit. She then sobbed to him about my chronic migraine condition and absence seizures she’s apparently been noticing since I was in elementary school (I have Complex PTSD and have 0 memory from before age 10). I just sat there baffled because this was the help I’d been begging for for YEARS and she was putting on a show for someone now that I have to pay for everything.
    There are other much bigger reasons but for this as well, my mother and I don’t really speak anymore. My migraines still don’t respond to medications, OTC or otherwise, though I’ve tried several. They all just make me feel woozy. The only relief I feel is a) CBDs if I catch it early enough, b) singing in a dark shower, and c) knowing that when I wake up it will (hopefully) only be half as bad.

  • Lr mom
    1 year ago

    Hi parm. I understand what you feel. I never got the sense that my parents thought I was weak for having migraines or anything like that. I only felt like they couldn’t understand and couldn’t help, and couldn’t say the things that I wanted and needed to here, but that they were feeling, like I’m sorry you are hurting, what can I do? It was kind of like I knew but it would have been nice to hear sometimes. Also, it might have been nice to know at the time that they were just as scared as I was, but back then, it wasn’t done. Feelings. Showing feelings of an almost human nature, this will not do!! Oh, sorry quoting the wall. Anyway, now that I’m older, I know that I felt alone, but wasn’t. I had a different experience with the seizures. They thought I was having them, but I wasn’t. They thought the headaches were abortive seizures. That was the one time that I knew Mom was scared, that, and when they thought there were legeons (sp) on my brain. Both of those things turned out to be mistakes that the doctor made. What looked like seizures was a spike in my brain waves that is often seen in babies who are premature as I was. And what the legeons were was scar tissue also because of prematurity. If it hadn’t been for the migraines, I would have never known why I have so much trouble with math and reasoning tasks. It’s because the scar tissue is right in the area where motor skills, math and reasoning are. Anyway, I don’t remember a lot of stuff about my teenaged years because of the migraines. I remember being frustrated a lot. I got quite a bit of relief from addressing my TMJ problems. Then I stopped wearing the splint. Just thought I didn’t need it any more. And for a good while, I still was bothered by them, just not as much. Then in 2014, they got markedly worse again and so now I have a night guard again, and I am reading on this sight, because there are many things I don’t know. Like I never heard of the miracle migraine diet. I am not good at diets. I have not noticed a lot of food things, except that sometimes it seems like mexican and chinese foods really bother me. I thought it was cheese maybe, but then I would eat chinese food which doesn’t have a lot of cheese in it. So while I know I have msg sensitivity, I am not the best at avoiding it, because it’s in everything. It is like saying, don’t breathe. Avoid sodium. Whatever. Anyway, I’m just trying to pay attention and now, I don’t eat pizza very much. I don’t do chinese or mexican food too much. But the’s not just msg, like I said. It’s also stress. Stress is the biggest trigger. And it doesn’t have to be the bad kind either. Basically, anything that involves me concentrating on something for a while, even if the something is something I want to do, like play music or master a crochet pattern. Also, I notice it’s a lot related to my hormones. It’s like clockwork. Start of cycle, migraine. When the unpleasant part is over, migraine. ovulating, migraine. So that’s three a month right there. Then you factor in all the times I might eat something I shouldn’t that has msg or do something that causes me to concentrate, or maybe the weather is causing it. It’s a very frustrating disease. It’s weird to even write that word and associate it with the migraines. Okay, has anyone ever noticed that sometimes a really strong emotion like anger helps get rid ofa migraine and sometimes if you’re not having one and someone makes you mad or whatever, it causes one? Why, do you suppose that is? I mean, there are times that my husband will say something stupid while I’m having one, and I go to blow up at him, and then it just disappears. Sorry for making this so long. I’m going to go enjoy the rest of my migrain free day. I had a bad one yesterday, but today, I am doing great!

  • nailah17
    1 year ago

    Hi Parmes, I also suffered since high school and our poor mother-daughter relationships are very similar. I found in recently years a change in diet and adding sports to my lifestyle helped a lot. Sometimes the emotional pain we choose to ignore and suffer from triggers these migraines. I lay at night unable to sleep
    Sometimes and conversations
    Going round and round in my mind.

    I do see that almonds, multi vitamins and minerals, plus high quantity of Omega3 helped me for at least 1 year.

    I hope people like us can find a cure and not be dependent on pharmaceutical drugs.

  • parmes
    1 year ago

    Thank you for your suggestions. Now that you mention it, when I’m on top of my snacking routine (almonds/cashews) and I keep taking my vitamins every day, I tend to have separate attacks as compared to the usual daily fluctuating head pain/ringing ears and other symptoms.
    Seriously, thanks again. Sometimes we just need to be reminded by people who actually care, rather than by people who pretend to.

  • Rayne
    1 year ago

    Wow, first off. I’m knew my migraines tore up my life and all of the other sufferers I have met over the past decade just did not comprehend the hell I go through. This article along with the comments are scary similar to my story. I’m on high dose of antidepressants, two actually, to help with anxiety and depression. I don’t mind being on them as I find myself feeling more like myself which is something I haven’t felt in years. Lights and sounds are a no go when I get really bad and my triggers vary from day to day so I can say what causes each. I have chronic migraines and daily headache which at it’s worst feels like bad seasonal allergies with congestion. Preventative did not work. Abortive’s are difficult to find because I am highly allergic to ibuprofen so that cuts out a lot of them. I am using Butrans patch which is 15mcg of buprenorphine an hour really to one prolong the Norco when I do take it and two try to maintain a steady pain relief. Emergency room visits are a joke because I would rather be in excruciating pain than have a physician talk to me like I’m just there drug seeking. I had one, not very long ago actually, send an email to my specialist saying I was aggressive to the staff and I was showing major signs of drug seeking behavior!! My specialist read the email to me and all I could do was cry. He got done and told me that he pulled all of the records showing when and where my Norco was filled as a courtesy. Then he says don’t worry about him because he isn’t concerned about his lying ass. Yes I am taking opiates on a daily basis, plus a stronger one as a attempt to avoid the er and I also have Relpax. Really, my life goals are to be able function, I don’t care to be pain free as long as I can get the level down to manageable.

  • Sarah Hackley author
    1 year ago

    Rayne, I’m so glad you have a specialist who cares about you and works to find treatment options that work for you. That is invaluable! I know many of us have had similar experiences with the ER. I’m sorry you had to go through that, but I always feel like it helps to know you aren’t alone. Thank you for sharing.

  • trains
    1 year ago

    Opiates didn’t help me in the long run and so much crap is mixed in with it. I started using kratom and CBD a few yrs ago, the only thing I have ever found that helps. I’ve been on every drug they have to prevent or treat migraine and none worked, some made me worse and added side efffects. I started getting migraines when I was 10, I was told I’d grow out of it after puberty, I’m 32 now, I have headaches daily and migraines several times a week. They continue to get worse the older I get.

  • Sarah Hackley author
    1 year ago

    I’m sorry your attacks are getting worse. A number of migraine patients have found relief with kratom and CBD. I’m glad those are available to you and helpful. It’s all about finding something that helps us as individuals. I wish you improvement. Thank you for commenting.

  • Marjorieson
    1 year ago

    This sounds so very familiar to my situation. I have a chronic migraine with the swollen eyelids . Nasal congestion/drip, vertigo, blurred vision and sweaty face with a cold nose and extremities most every day. Sometimes it lasts longer than others . I have tried it all to treat, prevent to no avail. I do not have MOH either. I do have to take an opioid everyday due to cervical
    Spine pain. As a matter of fact, I never had a migraine until
    After my first of 2 spinal surgeries at a 50. Some days I think I have cervicogenic migraines. Some are more like cluster headaches. While some act more like the traditional migraine with aura . It is dibilitating and complicated .

  • Sarah Hackley author
    1 year ago

    Thank you for commenting. Pinpointing the type of migraine we have can be incredibly complicated, especially since many of us get more than one kind. Have you raised your concerns about the different types with your doctor(s)? You might find some answers if you see a specialist. I hope you find relief soon! Warm wishes, Sarah

  • Douglas
    1 year ago

    Thank you for pointing out that pain is not always the worst symptom. While I am very grateful that I no longer have pain with attacks, I have familial hemiplegic migraines (without the pain) and have spent days with stroke like symptoms, with paralysis coming and going. Since I am also a cardiac patient, triptans are out of the question — so no abortives, only preventatives.
    I am now on a regime that keeps the symptoms down enough that I am no longer chronic, and have only had 2 or 3 episodes of paralysis in the last 9 months. I still have triggers that can send me into a downward spiral very quickly (especially when my Botox is coming due).

  • Sarah Hackley author
    1 year ago

    Hi, Douglas. Thank you for commenting. It’s great to hear that you have found a regimen that has brought you from chronic to episodic. May you continue to feel better! Warm wishes, Sarah.

  • Melanie
    1 year ago

    I’ve been dealing with chronic migraines all my life (diagnosed at age 7). I wish others would understand that when a migraine hits that I don’t want a list of “remedies” (I’ve tried them all), I don’t want someone to want to know why I get them ( nobody knows and after all this time it’s not important.)
    I want doctors to understand that I have seen every specialist out there, I have tried every “treatment” (almost none of them worked), and that I’m far from being some junkie looking for drugs. They don’t understand that losing DAYS of your life to chronic migraine is awful, and I have an active, happy life when I’m not laying in bed ,sick and just wanting to die so my head stops hurting.
    I’d also like people to know, that if I dont stick to a rigid wake/sleep schedule that it can make a migraine come on. I’m not a party pooper or antisocial, its just that when the clock says bed time, thats bed time.

  • Sarah Hackley author
    1 year ago

    I understand completely, and I definitely hear you. Sleep changes can do a number on me as well, and I definitely can’t stand the “have you tried” responses from doctors or others. I hope you find a physician soon who will respect your knowledge and your situation. Thank you for commenting!

  • Katherine Kerr
    1 year ago

    I have finally found a great neurologist who is well respected in his field. I started getting migraines when I was about 8 or 9 years old but chronic migraines didn’t effect me until the last 15+ or so. I’ve been getting Botox and take Topomax and Inderal daily for 17 years. But 2 years ago November I had an appointment and told my Dr. I couldn’t stand it and I needed something to stop the out of control migraines (Triptans didn’t do it). He wrote me an RX for fentanyl patch 25 mcg and I don’t have one on regularly but it saved my life. And I have no desire to increase it but I have to hide the this from friends and many family members. That makes sad.

  • Sarah Hackley author
    1 year ago

    Hi, Katherine ~

    I’m sorry you feel as though you have to hide a treatment that is working for you from your family and friends. I know there are those of us who have felt similar at different times. However, I am so glad to hear that you have found a good doctor and one that is willing to think outside of the box to help you. Finding the right doctor can be as tricky as finding the right partner! Please know we’re here for you, and I’m just glad you have something that works for you. When you’ve had migraines for as long as some of us have, it can become exceptionally difficult to find effective options. Thank you for sharing.

  • pragone
    1 year ago

    Where, oh where, to start..My first thought, after reading some of the comments, was you’ll always find someone worse off than you. I count myself lucky because I have no visual changes, no vertigo, no nausea just a relentless, pain on the left side which, after hours and hours, feels like I’d imagine an axe buried in my skull would feel.

    I have chronic migraine which is what got me into an over medicating cycle of using an abortive drug EVERY day. Knowing this was not healthy I pleaded with my GP to help me get off the medication. Her response was, “The only way to get off the medication is to quit ‘cold turkey’.” Obviously, she was not a migraine sufferer. Desperate for help and understanding my husband and I drove to the Mayo Clinic ,Rochester, MN, we live in Idaho. At Mayo I found a doctor who finally listened and I cried when he said, “The first thing we have to do is get you off Relpax.” I am pleased to say I am no longer drug dependent and manage the migraines the best I can by avoiding all my triggers. Of course, that doesn’t always work. With every migraine I wonder what did I do to bring this on? Some how taking blame…it had to have been something I ate, or smelled, stress, maybe I slept wrong, maybe it was the nitrates in the bacon I ate, perhaps if I breathed deeper taking in more oxygen I could avert a migraine. I scrutinize everything. but now, after reading other’s comments I think I’ll be able to let go of the being “responsible” for the migraines. Thank you all for sharing your stories.

    My hope is that those lucky enough not to have this crippling disease will someday understand just how debilitating migraines are, it’s NOT just a headache. Because as it stands, our lives, mine and my husband’s, revolve around migraines!!

  • Sarah Hackley author
    1 year ago

    Thank you so much for sharing your story with us. Letting go of blame is so difficult for many of us, I believe, because of the stigma so frequently associated with migraine disease. I am glad to see this post offered you some comfort, and I sincerely hope you are able to let go of any feelings of blame. We’re here for you!

  • ChronicallyEverything
    1 year ago

    I wish that someone had warned me that doctors would look at me like a drug addict looking for a fix so I could harden myself to that fact of chronic illness before experiencing it first hand. Seeing that look come down on me is something I will never forget. Hearing them start talking about rehab and asking to see the insides of my arms was humiliating. Living with multiple invisible diseases, migraines and fibromyalgia, plus an unusual sensitivity to pain (AKA a low pain threshold) I’m constantly questioned as to do I really need that many pills, do I need that high of a dosage, why can’t a just take an Advil like regular people can? It’s so awful. So damned awful and it’s the worst part of being chronically ill.

  • DonnaFA moderator
    1 year ago

    Hi ChronicallyEverything! Sadly, some doctors seemed to have skipped the empathy line at the buffet. I’m sorry you’ve had to deal with this kind of insensitivity. You didn’t mention if these comments came from your personal physician of staff at the ER, so I thought I’d share a few articles articles that may help:

    Firing Your Doctor (I shared articles relating to finding a new doc on another comment here)
    Migraine in the ER
    Tips and Tricks for a Successful ER Visit
    Emergency Migraine Treatment: Forms to Simplify Things

    I hope this, together with the information about connecting with a doctor invested in being a member of your healthcare team, helps make things a bit more bearable. -Warmly, Donna (Migraine.com team)

  • pogie
    1 year ago

    So nice to know that I’m not alone with having to try to function with chronic migraines. I have had migraines since I was in my 20’s. I am 61 years now. I’ve tried every drug and treatment possible. Nothing has worked. I constantly am going through medication overuse. I can’t believe the money I have spent over the past 20yrs. Been to hospitals and rehabs more than I want to say. My neurologist doesn’t know what to do anymore. Sometimes I wonder if the depression and anxiety is worse. I have no life. Sitting in my house living in the dark is not living, it’s existing. It’s all very sad when so many of us are suffering and there is no cure. They can send men to the moon but can’t find help for us. Today is a good day. I’m alive

  • Marjorieson
    7 months ago

    Maybe the new CGRP treatment will help you as well as help your pain relievers used for fibromyalgia to work better!!

  • DonnaFA moderator
    1 year ago

    Hi, pogie! You are absolutely not alone, and we’re so glad that you’re part of the community. I’m so glad to hear that yesterday was a good day and send positive energy that today continues to be good. Depression and anxiety are frequently comorbid with migraine. If your doctor is not a headache specialist, you may want to check out How To Find a Board Certified Migraine Specialist for information on connecting with a specialist in your area. I hope today is another good day. -Warmly, Donna (Migraine.com team)

  • lorriejeane
    1 year ago

    Thank you for your article. I have had migraines since about 6 and am 58. They have changed over the years and now are daily. I wasn’t diagnosed until my twenties. When I was young they called them ear infections that would come back every couple weeks. I resonate with all the comments and just wish we could convince people including doctors that this is a disease, a neurological disorder. We need more money to work on a cure but it’s difficult since we all present a little differently. Thanks for listening.

  • DonnaFA moderator
    1 year ago

    Hi, lorriejeane! I’m so glad to hear that you enjoyed the article. As the mom of a boy who had recurrent ear infections when he was an infant, your story really gives me pause. Thanks so much for being here and sharing your perspective and experience. We’re so glad you’re here! -Warmly, Donna (Migraine.com team)

  • Sarah Hackley author
    1 year ago

    I’m sorry you’ve lived with the disease for such a long time. We definitely need more funding. I believe that the more we come together and talk about the disease, the more we spread awareness. Hopefully that will translate into more funding for research at some point. Thank you for commenting and sharing your story.

  • Joleen1966
    1 year ago

    Thank you for this. I’ve been having migraines since a teenager. Now it’s been labeled as chronic migraine. They are always on the left side of my head. It annoys me when people think of what we suffer with as “JUST” a headache. It’s definitely not!! I wish a couple of Advil, Bufferin, Aleve would help me. All the preventive meds I’ve tried cwould fill a page. The saving once I am in a full blown pain mode is only helped with Vicoden. I went to a headache specialist in Boston about 7 years ago and he told me I will be on Vicoden for the rest of my life. I take 1/2 pill every 3 hours as needed which backs off the pain enough for me to still function at work. I’m so happy to have found this website. Thanks for listening to me.

  • ChronicallyEverything
    1 year ago

    Omg I need to find a doctor willing to work with me like that. My local doctors are so afraid of opiates that they won’t prescribe more than 10 at a time! Good on you for finding a capable and willing doctor!

  • DonnaFA moderator
    1 year ago

    Hi ChronicallyEverything! You may want to check out some of the following articles for help in connecting with a doctor in your local area.

    Is It Time For a New Migraine Doctor?
    Looking For a Migraine Specialist
    How To Really Find a Migraine Specialist
    How To Find a Board Certified Migraine Specialist
    Hiring the right Doctor

    I hope something here helps! – Warmly, Donna (Migraine.com team)

  • Sarah Hackley author
    1 year ago

    Thank you for sharing your story! I’m glad you have a doctor who is working with you. It’s so difficult to find the right one.

  • Ellifane
    1 year ago

    Thank you for this. I’ve been dealing with this since puberty and it’s only been getting worse. I remember being told by my mother once that if I had a migraine, I wouldn’t be able to watch tv, etc. I need the distraction to get my mind off the pain when my aborters didn’t work for me, or I have to work through it, sitting at a computer all day. I think the worst part of it is that I will look perfectly fine when I feel like my head is about to explode. No one can see the pain I’m in so sometimes they don’t believe me. On top of all that, I have at least 3 different migraines that affect me differently so I could be dazed and zoning out (my least painful), or on the other side…the hard core migraine, which I need to get home ASAP before I can’t drive.

  • Sarah Hackley author
    1 year ago

    I understand completely. I have different attack types, too, which I think makes it even more difficult for those around me to truly understand what I’m experiencing. I’m glad the article spoke to you, and I appreciate you commenting. It’s always so helpful to know we aren’t alone.

  • deja3973
    1 year ago

    This is my first time on this site and reading these comments actually made me cry. That there are other people out there with the same experiences as me. I’ve been suffering from migraines since I was about 12. I was not diagnosed until I was in my 30’s. I get them monthly with my cycle but I also get them during certain weather. And no one understands how debilitating it can be. So are mild and I can function but sometimes they are so bad I can’t stand up. But the smells are the worst for me. My sense of smell is so strong I can’t even walk into some places sometimes especially malls with Bath and Body works and Victoria Secrets. I can’t stand colognes. And my sister and best friend know to unplug all plug ins and air fresheners at least 2 days before I visit them. I work in a office with 100’s of people and sometimes it’s unbearable between the foods and perfumes. I’m a single mother with a son that is active in sports and when i’m having a migraine I can’t sit out in the sun. It’s hard to tell you son you can’t go to his game because you have a headache. I’ve tried almost all the treatments and opioids don’t make them go away. Relpax helps but my insurance only allows 4 pills per month and my migraines last 3 or more days at a time. Thanks for listening I just needed to vent to people that understand.

  • montanaday
    1 year ago

    Wow, I feel for you. I worked in an office where we had XM radio on all day long and lots of perfumes so I get the noise/smell connection. And I’ve missed more games, concerts, plays, birthday parties and weddings than I can count.
    However I had 15 Relpax/Maxalt a month and I still barely made it to work.
    Having to get through an entire month on only four, that’s got to be unbearable. Hugs.

  • DonnaFA moderator
    1 year ago

    Hi deja3973, we’re glad you found us, welcome! You are absolutely not alone. I thought I would point you in the direction of some articles that may be pertinent to you. We have lists of articles relating to hormonal migraines, to weather triggers, to scent triggers, and finally info on PAPs that may help with medication costs. We’re glad to have you as part of the community. -Warmly. Donna (Migraine.com team)

  • jbright
    1 year ago

    I’m a lifer too! Migraines ever since I can remember. Abdominal as a kid. Not diagnosed till an adult. According t mu parents I was just a sickly child LOL. Feel like I’m staring over with meds though. Had to get off Nortriptyline though, tapered off and now at zero for about two weeks. Doing ok with triptans and the occasional oxycodone….tho my doc is not happy about that. Difficult now with migraine nausea, dizziness, abdominal stress coupled with withdrawal.

  • PamR
    1 year ago

    Thank you! About the overuse of medications — When none of the preventatives work, you NEED your abortive meds. I even got grief from a particular pharmacist. This is addictive. You take all these pills? ALL of this is for migraine? AND an injection? Do you know what you are doing? NO. I just take crap for the hell of it. I’ve have migraines for 40 years. I can handle my meds. How many times can you explain when you don’t want to or need to explain THIS medicine is for THIS migraine without aura, THIS medicine is for the one WITH the aura, this is for when nothing worked and you’ve been puking for 12 hours straight…. They just don’t understand. I finally had it out with the pharmacist. I asked him if he suffered from migraine. He said no. I told him he had no idea what he was talking about and to keep his opinions to himself or find another job. I refused to go elsewhere. I have nothing to hide. Good God, stop making me feel worse than I already do!

  • Maureen
    1 year ago

    I had to rebuke my usually kind any compassionate nurse daughter when she announced I had too many medicines. I told her she needed to get better educated about migraine! I use different medicines for different reasons and different presentations and different progressions of symptoms. The fact that she doesn’t like that I have so many meds doesn’t mean I shouldn’t have access to so many meds. It just means it is difficult to understand their use… which is why I don’t bother trying to explain the intricacies to anyone. Its just as so very complicated, really. The varying symptoms and the treatment decisions. But I praise God that my present treatments are really improving my quality of life!

  • Sarah Hackley author
    1 year ago

    Oh, yes! I am 100% with you. I have a number of medications that are technically in the same class, but I don’t take them together. I take some combinations for one type of migraine attack, a different combination for another kind, a single pill just to treat one disabling symptom, or another one. I have a complicated internal algorithm that takes into account the work I have to do that day, whether I have to drive, which symptom is most disabling at that moment, and what I’ve taken in the past few days. It’s crazy, but I know my body very well. It sounds like you do, too. Good standing up for yourself. And, I definitely, definitely, definitely feel you. <3

  • Marian Andrews
    1 year ago

    I am amazed by how little my mother understands, even after so many years of taking me to the doctor. I am 60; she is 86. But she really only started taking me since my divorce in 2005. I wish she would understand that while my sister and I both have migraines, our experiences are not the same. I go to the doctor for a shot when my pain is unbearable and my sister cancels her doctor appointments when she has a migraine. It’s also frustrating when my sister is not sympathetic or supportive of me. She expects me to bring her groceries if she knows I am going to town since she does not feel like going to the store. So I end up avoiding my sister and my mother does her shopping for her.

  • Carolelaine
    1 year ago

    Oh, wow! I can so relate, my mother (84) has not been at all supportive or understanding of my migraines or depression, I’m 62 and have been dealing with them since I was a child. It has gotten to the point that I avoid talking about them and limit the amount of time I speak with her.

  • Sarah Hackley author
    1 year ago

    Family relationships can be so difficult, and migraine can certainly strain them even further. I’m sorry you’re struggling with yours. Loving thoughts sent your way.

  • CATRYNA
    1 year ago

    I am 68 years old and have had migraines since I was 4 years old. So, yeh another lifer. For me , there was a period of time when those migraines were a daily thing. A few decades ago I stopped eating a number of things; Tomato sauces, hard cheeses, canned meats, deli meats. Forget wine or beer; those are the worst. I’m sure all of you will agree that we are weather barometers, as well. The weather changes, wind coming, rain or snow! Whatever! Our head will let us know! In the past I have had stroke like symptoms from the excruciating pain of a migraine, and several times convulsions. I also have more ocular migraines and they can go on continuously for days. Now, recently, I began to see a clear circle outlined in black/grey off to my periphery. Had my eyes checked and other than needing a change in prescription, my eyes were given a perfect score. I explained to the doctor what I was seeing in my vision. There was nothing physically wrong with my eyes and so the doctor, feels that it is an ongoing migraine. Just waiting, now, for my eyes to explode or implode. LMAO

  • Sarah Hackley author
    1 year ago

    Thank you for commenting and sharing your story. I’m glad an elimination diet worked for you. It’s always helpful when you can eliminate known triggers. I also have a number of strange visual symptoms with certain attacks. I’m glad you got checked out by a doctor though! That’s always a good idea when something changes. Warm wishes.

  • ejcc
    1 year ago

    I may look fine but I am in pain. I hurt I am angry I am frustrated but I look fine. I can hardly move the pain is so bad. I have changed my life for this literally and yet I am still in pain. Please be patient please be kind. Give me a hug. Don’t ask me how I am feeling. Just hang with me until the storm passes.

  • Perkydl
    1 year ago

    Amen

  • Sarah Hackley author
    1 year ago

    Thank you for commenting and sharing your experience with us. Virtual hugs sent your way. May the storms be few, short, and far apart.

  • TheKimberly75
    1 year ago

    I hardly know where to start. I’ve had migraines for over 40 yrs and am now chronic. I’ve seen some highly recommended specialists over the years yet have never found anything that works for me except opioids. And I must say, thankfully so, because after all this time, most people don’t still get relief. I’ve tried every preventative & abortive med, physical therapy, acupuncture, traction, trigger point injections(& others), chiropractor, yoga, psychological counseling, “mindfulness”, Botox (3 times; twice leaving me unable to hold my head up the neck pain was so bad! I’m one of the unlucky 11%!), Tristan’s, in short, every therapy ever suggested by a doctor or clinic. I’ve ruled out food allergies, cigarettes, and I know my triggers of too little sleep or skipping meals and do my best to avoid them.
    I’ve been unable to work for years now after working through years of pain. Planning social activities is a heartbreak, never knowing til the last minute if I’ll be able to attend, wrestling with myself over the desire to go, the physical need to stay home, and the guilt of cancelling yet again. Odors are a huge trigger for me, and I buy almost everything Unscented. There are a couple old standbys of perfume (has to be the real thing) that I’m ok with but I can’t search for a new scent! I can’t even run through the makeup Dept with my nose plugged to get through the store without instantly getting a migraine! Once my migraine gets severe, around a #6-7+, and I develop nausea, then I am sick allover and nothing is going to work except either waiting it out or going to the ER for IV opioids. And I can be sick for Days! After that, there’s the “headache hangover” time, lasting another 1-3 days, where I’m pretty useless and almost afraid to move because I can still feel that “shadow” of pain and I’m afraid any sudden movement will bring it back on. I use tv as a distraction. In fact, it’s all I do anymore. I don’t have the concentration of an knot anymore. I used to be an avid reader but now I can’t stay focused, it’s too hard on my eyes if I’m in pain, & I can’t retain what I’ve read! Life is one big fog machine!
    But by far the most debilitating factor of migraine is people not really understanding what you go through. It’s the sound in their voice when I cancel our lunch plans for the second time in a row. Or their incredulity over how I can watch tv when I have a migraine, not understanding that I simply cannot lie down and go to sleep when I have one; it increases the pressure in my head and makes it worse so I don’t even have that small comfort of sleep. They try their best, and some do better than others to be sure, but my migraines affect everyone I know! And that makes me feel guilty too.

  • PegB
    1 year ago

    I completely understand and relate to your story. My headaches are daily, but managed on most days, and were directly tied to cancer treatment so I was able to get disability after a long battle with myself (because teaching was a big part of my identity). Things improved for me when I gave in to a greatly modified lifestyle which was extremely limited for a few yrs and still is quite limited at times. But the long struggle to get your world back to a semblance of normal, things got better when I embraced the new normal, quit thinking there was some moral or ethical component involved in what I could manage to do or not do each day. And lastly, yes, I am on daily Butalbitol with codiene and Tylenol. After a long struggle similar to yours, this is my stability. My doc is hesitant to see me upset the apple cart but I am feeling urge to get off the Topomax as I have realized from these sites that my extreme hair loss and fog/lethargy are likely side effects. I thought for a long time that they were latent chemo effects. I also would like to decrease the amount of the Butalbitol, after I see if I can get off the Topomax. There are some diet and oils ideas I want to try, one at a time. Reading on these sites, has helped me realize it’s time to try again to improve the quality of my life with support, and patience. Ironically, my husband wants me to try marijuana in attempt to reduce Butalbitol. Lol. One thing at a time. Glad to have found on line support.

  • Sarah Hackley author
    1 year ago

    I’m so sorry you’re struggling so much. You certainly are not alone, though, and I hope you can find some comfort in this community. Like you, I use TV as a huge distraction, especially when my pain levels are so high I just want to smash my head (or my fist) through a wall. Lying in dark room without any noise or stimulation at all is too much for me to take. I am a huge reader, but when my vertigo is really bad or my vision is blurred, I can’t read. The pages just dance. So I watch more TV than I’d like, but we all do what we can to make it through each attack. Please do reach out to those of us on the website when it comes to feeling guilty. I think that’s something we all have in common to some degree, so we definitely get it. It helps me to feel less guilty when others remind me that I shouldn’t. Kerrie has written a number of articles on migraine and guilt that have helped me. Have you read this one: https://migraine.com/blog/guilt/? Warm wishes to you.

  • Firemoth
    1 year ago

    My main migraine symptom is vertigo! This makes it hard to distract myself and I do end up in a dark room, alone. Doctors want to treat the vertigo with balance therapy even though my inner ear is fine. The only relief for the vertigo is OTC migraine meds and rest, but that takes time to kick in. After the vertigo subsides, then I can roll into the other migraine symptoms (nausea, fatigue, neck pain and eventually headache), which allows me to continue with “normal” life. So far the only preventative “fix” that I have found is a change in altitude/climate. Moving is not an option right now. I can’t work right now because of the vertigo, which makes this disease very lonely.

  • Sarah Hackley author
    1 year ago

    The vertigo is absolutely my most disabling symptom when it’s at its worst. (I wrote another article about that: https://migraine.com/living-migraine/waiting-for-my-sea-legs-a-story-of-vestibular-migraine/. I couldn’t find anything that worked, either, although my neurologist finally gave me a very, very low dose valium to take on the worst days. Benzodiazepines can calm the vestibular system. It’s helping me some, allowing me to be more functional for more days of the month. Though it doesn’t, of course, help with all of the attacks.

  • drmaryb
    1 year ago

    Good article. I used to have misconceptions about migraines – before I realized that my spells of recurrent illness WERE migraines. When headache is not the most prominent symptom (or in the case of silent migraine), it is not so easy for a doctor to diagnose or for us accept that this is the problem.

    My good friend has migraines and hers are so different from mine. She gets triggered by chocolate and wine, whereas I have no food reactions and no other identifiable triggers. The top of her head hurts. My head pain is almost always unilateral and often transient. She can take a couple of ibuprofen and keep going, with a headache still in the background. I am often debilitated by nausea, fatigue and mental fog, sometimes for days – though I have gotten so that I can often push myself to work through it. With such differences it is easy to see how misunderstandings can happen.

    I can feel annoyed if she or someone else says, “I hope your headache gets better” or “maybe it would help if you ate something”. I know I have no basis for annoyance because she is trying to be supportive. She is just speaking the language of her migraine and that often doesn’t fit my experience. It is understandably hard for her to understand if I feel a need to cancel social plans or leave early because of nausea or noise sensitivity – because it doesn’t affect her that way.

    I am grateful for this site as it helps broaden our understanding of a medical condition that isn’t well understood by any of us.

  • Sarah Hackley author
    1 year ago

    Thank you for commenting. I have a friend like yours, as well. They’re trying to help, but it’s important for us to remember that works for one of us may not work for another. I, too, am grateful for this website and our community. Thank you for being a part of it. I’m glad to hear it brings you comfort.

  • DeborahM211
    1 year ago

    I feel as if I’m having mini strokes now when I get my migraines also have started stuttering..i throw up repeatedly and cannot eat along with all the other symptems..it takes one or two days to recover from an attack..i would rather go through natural childbirth than migraines. I have nothing to help take the pain away since the opioid crisis which is complete B.S. I also have tried everything for them. The only thing I get some relief for I can’t get anymore…

  • Mariposa42
    1 year ago

    Hello. I have just joined this site. I have never heard of another migraine sufferer having a stuttering episode. I thought I was crazy. I have these episodes about once a year now. I’ve had migraines since I was about 11, now 42. Along with the stuttering I have muscle spasms. It’s very scary. Nobody believes me but I filmed myself today. I have no insurance and can’t afford to see a specialist. I currently take Fioricet and have taken 4 today just to feel “normal”. Thank you for sharing this. I don’t feel so crazy now!

  • Sarah Hackley author
    1 year ago

    I’m sorry you’re struggling with finding medications that work for you. Do you have pain doctors where you live? Mine has been an invaluable addition to my migraine team.

  • kathydeitz
    1 year ago

    I agree, the pain part can be managed with meds. It is the aura! Nausea , vertigo, crippling exhaustion, asphsia, stimuli aversion etc. Wish it was not called Migraine headache. My friends keep saying , you need to have blood work done! There must be something else wrong with you. Nope , can’t see out of my left eye today and my entire left side is numb because of the type of migraine I am having today. Tomorrow will be completely different.
    On a lighter note, my husband is a farmer and asks me before he gets up hay because I always know if it is going to rain because of the barometric pressure.

  • Sunny
    1 year ago

    Thanks for the article – so true. One thing we could try is always calling it migraine, not migraine headache, because it is not a head “ache” – it’s more like a head “stabbing burning agonizing pain plus vertigo, nausea and a host of other symptoms.” I tell people the difference between headache and migraine is the difference between a tummy ache and passing a huge kidney stone – ie no comparison.
    Thanks for letting me vent!

  • RachelRoo
    1 year ago

    I like that. What if we rename it. “DizzyNauseaBrainDagger?” I have explained my pain to my husband as feeling like there are tiny mythical creatures, gnomes or fairies or something else, who are trapped inside me and hacking their way to freedom through my temples and/or the back of my neck.

  • Sarah Hackley author
    1 year ago

    Absolutely! I try my hardest never to use the word “headache” when talking about migraine except for the times I say a severe headache can be one symptom of migraine disease.

  • napa219
    1 year ago

    The differences between migraines is something I am dealing with constantly, My mother and my adult daughter both have migraines, and they experience different symptoms than I do. I also try to distract myself when I have one, watching TV or taking a bath to try to relax. I have been experiencing migraines since I was about 11 years old.old I am now 55 and in the last 7 years I have been getting migraines daily, I also have tried all of the medications for migraine with no relief. I am currently on opioids to just control some of the pain. I developed angina from the use of triptans. It’s so frustrating! For me one of the most disabling things is the confusion and aura which occurs prior to the head pain. I keep thinking that maybe one of these times I will not be able to come out of this stage of the migraine. I know it’s an unreasonable fear, but, I just can’t shake the feeling of being mentally impaired by this disease. I hope this helps someone else who has the same thing. I know talking about it helps, especially with someone who is experiencing the same thing.

  • Luna
    1 year ago

    “the confusion and aura which occurs ” … “I keep thinking that maybe one of these times I will not be able to come out of this stage of the migraine. I know it’s an unreasonable fear,”
    This doesn’t happen to me often or for very long but I do have this fear on occasion. No fun.

  • PegB
    1 year ago

    Oh my goodness…I had that strange confusion happen only twice, I didn’t know then it had anything to do with Migraine. (Different than chemo brain or Topomax fog, way crazy panic ) I was terrified. Both times it passed in about 20 minutes. It had never occurred to me but when you said you are afraid you won’t come out of it, that made me feel so bad. So sorry, there is so much complexity …all the different things to deal with.

  • Sarah Hackley author
    1 year ago

    I understand. My daughter and my grandmother both have migraine, and neither experience aura like I do. They don’t have vertigo, either. It’s so strange how the disease can be present so differently. I will say that the anxiety around auras and non-pain symptoms can be extreme. I struggle with that myself, but I also have an underlying anxiety disorder and panic attacks. If you find the anxiety is becoming particularly troubling, you might consider talking to your doctor about it. Anxiety and migraine are frequent partners.

  • RachelRoo
    1 year ago

    ‘Anxiety and migraine are frequent partners’. YES I have both disorders as well, and though I’ve read studies where doctors try to analyze whether it is the fear of migraine pain and debilitation causing anxiety and panic or the other way around, my opinion its its all kind of parts of the same stuff. My daughter is on the autism spectrum and I feel like that’s there too, a cluster of comorbid issues that effect how we all respond to stimuli.

  • zippy36
    1 year ago

    I could not have said it all better. Thanks for the read. This sums up just what I want to say.

  • Sarah Hackley author
    1 year ago

    Thank you for commenting! I’m glad it resonated with you.

  • Anne
    1 year ago

    Thanks for sharing your experience. I agree – head pain is not my worst symptom. Relpax works pretty well for me and the modified diet, preventatives, etc. help to minimize the pain of the attacks. I’m used to having pain and discomfort and can have nausea and vomit and just go on with my day EXCEPT when my migraine manifests with vertigo. I can’t drive if I’m dizzy. So, even though I get one to two migraines a week – thanks to a great Dr. they’re down in number, I’ll always have to stay home one day a month for dizziness.

  • Sarah Hackley author
    1 year ago

    I’m with you; I can’t drive at all when I’m dizzy. My neurologist did give me a very low-dose (2 mg) prescription for Valium to use when my vertigo is really bad, but it doesn’t always work. I’m thankful to have it though. It took me forever to get her to understand that the vertigo is one of my most disabling symptoms. I’m glad the preventatives and Relpax work for you. My supplements help keep my pain levels down, and I have pain meds for when things get really rough. Triptans don’t work for me, but I know so many for whom they’re a lifesaver. Thank you for commenting and sharing!

  • joey4420
    1 year ago

    I have gone from one extreme to another and starting back again. Got my first migraine after flying (1988) from Fallon NV to Virginia Beach VA, I was 18 at the time. I didn’t even have a headache or pain. But I was in a fog for almost 3 days and couldn’t concentrate on anything. Slowly over then next few years I started getting more and more, by 2003 I was getting painful migraines every day or almost everyday. It took years before I started really noticing that most of mine was from food allergies.

    I eliminated that and thankfully I started decreasing frequency, but still had either fog or painful migraines at least once a week, sometime they would last a day sometimes 3 or 4 days. Meds well they help, but don’t stop them as we sadly know. I just started Botox, second set of treatments. Not my favorite thing, but it seems to help. The first round the ones in my neck, caused me to have stiff neck for almost 3 months which resulted in daily headaches, but I feel the migraines were a little less painful.

    I will say this about botox, I hope you don’t fall into the less than 5% category that they cause you to be plain stupid for up to 4 days after the shots. I almost drove into oncoming traffic on the way home from my first visit due to not being able to think clearly, made a left on Red! which I never do as I always have to think twice before doing anything. The second round I took a driver with me, thankfully I didn’t feel the same way till much later in the day and it only lasted 2 days.

    So here I sit, and thankfully spell check works as I am on a fog day. Pain is over now at 12:22pm, but the fog is thick. So if I have typed something that doesn’t make sense I am sorry, I normally read out loud what I type after I am done, but can’t do that today.

    The crazy thing is I work in the computer work (thankfully from home, most of the time at least). Hard to do this job some days, but I don’t know any other way to pay bills yet.

    I think this is the first time I have put this much in type anywhere about migraines. Great topic by the way. Thank you.

  • Sarah Hackley author
    1 year ago

    Thank you so much for commenting. I know it can be extremely difficult to put words down on paper (or online) when foggy. I, too, work from home on my computer, and some days it is an all out battle to be even halfway coherent. I’m glad you’ve found some relief by eliminating food triggers. Any progress is great progress, in my opinion. Thank you again for sharing and commenting! I hope the fog clears today at some point. Warm wishes.

  • Holly H.
    1 year ago

    INDEED! My sister and I are both migraine chronic/constant, I’m just older so it’s more entrenched and varied. It’s something I wanted so much not to have her deal with also, but here we are…
    Interestingly, just yesterday I emailed to her because we have different types of migraines and systemic affects, etc, “We are on the same bike path, but just riding different bikes. Let’s get off of these stinkin’ bikes!” (Yes, sense of humor does help.)

    I commented on another article in the past, and it still holds true: “Distraction is one of the best coping skills. It gives our thoughts somewhere else to visit, especially if it is pleasant, involving, accomplishing, lightly challenging, or spiritually uplifting… and adds life to our lives. Adding life to my life is one of my biggest challenges because after all this time with constant/chronic migraines, triggers are everywhere to this now over-the-top over-sensitive neurological system…but such a payoff.”

  • PegB
    1 year ago

    Thanks for the uplifting words Holly. I have learned a lot from this article and comments.

  • Sarah Hackley author
    1 year ago

    Hi, Holly. I like that. I wish I could get off the bike, too! And yes, your comment holds true. What a lovely way to express it. Thank you for commenting again!

  • aks868
    1 year ago

    OMG! Another person similar to me! Thank you so much for your essay. Two years ago I was taking opioids, and at the request of my neurologist now do not take any, nor do I take abortives more than twice a week. The problem is, no preventatives have worked or are tolerable. I too distract myself with tv, activities, etc…but there is also the factor of trying to balance overcompensating for a migraine and then crashing and burning for a week or more after pushing through migraines. Also, sometimes it is pain, sometimes it is nausea, sometimes, it is vertigo or lethargy, or just plain word-retrieval issues and foggy thinking. And then there are the combinations of those symptoms. RIght now, I am missing a family get-together because I just can’t imagine standing in the sun with a lot of noise. I need to be alone in a quiet place, and even the hum of the house is driving me batty. I also am trying to mitigate this migraine’s severity because there are other important family days coming up, so I have to pick and choose and hope I picked right. No matter what, though, the unpredictability will always be there and I have to remember to to roll with it and find some fun and purpose in life whenever I can. Thank you so much for sharing–I don’t feel so much like an outlier on the migraine spectrum anymore.

  • Sarah Hackley author
    1 year ago

    I am so glad my article spoke to you. Your comments spoke to me, as well. I understand too well the strange balancing act that comes from trying to determine whether I can push through an attack or whether I have to stop and rest because I can tell I’ll be worse off later in the week if I keep going. Thank you again for commenting! It is always so helpful to know others experience things as we do.

  • lindaann
    1 year ago

    I wish others understood how brave we were, how hard we fight everyday to be a part of this world. I wish others understood the effort it takes to negotiate the stairs when your dizzy, to stay focused on conversations when your head hurts. I wish others believed that migraine is a disease and not just a headache. I also use humor, would not survive without it!

  • Sarah Hackley author
    1 year ago

    I think many of us understand exactly how you feel! The people closest to me can understand the difficulty vertigo brings because they routinely see me run into walls or almost fall over when I stand. The difficulty concentrating is so much more invisible. It’s a lot harder for people to grasp the reality of that. I’m glad you manage to keep your sense of humor, and I thank you for commenting. Warm wishes.

  • marycr8on
    1 year ago

    Thanks, Amanda!

  • marycr8on
    1 year ago

    I mostly have head pain and have been living with it for about 35 years on a close to daily basis. I’ve tried Botox and more medications than I can count, I haven’t found anything that work, either preventive or pain medications. I agree with you about having to use distraction to just get through the day, most of the time. I have friends that always tell me they are surprised I can feel so awful, yet still manage to do things and laugh. I don’t think there’s an option, really. If you allow migraines to control your life, you don’t have one. I’m not saying that most of the time I do very much, but I make myself at least try. A sense of humor is usually my best coping mechanism.

  • Sarah Hackley author
    1 year ago

    I agree! A sense of humor is so important! Thank you for reading and commenting.

  • KikiCat
    1 year ago

    Thanks for the article Sarah. I’m new here and it’s encouraging to find others who suffer with migraine. I’ve had chronic migraine since 2000. It’s so bad that I can’t work. I’ve had migraines since I was 16, am now 63. For the last 17 years I have suffered with a chronic migraine and depression. I have tried all the preventatives out there. I’m now on morphine 90 mg in the am and 60 mg in the pm. On one antidepressant with an antipsychotic as well as Concerta, which really helps with concentration and the pain. When the pain is really bad I can take a short term opiod, Statex 10 mg.
    I had a really great neurologist but he’s left the clinic and they won’t give me his new information. My GP now prescribes my opiods and that’s a major help, as the new neurologist I saw at the clinic told me I’m on double the acceptable dose. I tried to cut down but the pain increased.
    I also feel really guilty because my husband does everything for me and I have to cancel on so many social occassions.
    Glad I found this forum.

  • Sarah Hackley author
    1 year ago

    Welcome to the community! I’m sorry you’re in such pain, but I’m glad you have access to something that works to bring it down. I think we’ve all struggled with guilt to some degree, but hopefully by sharing with each other we can let some of it go. Glad to have you here!

  • Amanda Workman moderator
    1 year ago

    @marycr8on
    Unfortunately I am in the same boat with you, I have tried pretty much everything and still haven’t had relief. But I also have other conditions. I do my best to keep living until I hit that glass wall and then I have to give in and go to bed.
    Luckily my husband will watch movies or shows with me and of course the dogs are always up for distractions! Lol.
    I do hope things get easier for you. Sending you lots of strength.
    – Amanda Workman (migraine.com moderator and contributor)

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