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

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102 comments on “The Differences Among Us: What I Wish Others With Migraine Knew

  1. StefD says:

    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.”

  2. 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.

  3. Sarah Hackley author says:

    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.

  4. pappa says:

    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

  5. Sarah Hackley author says:

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

  6. Lr mom says:

    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.

  7. Sarah Hackley author says:

    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.

  8. kabrissey1 says:

    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.

  9. Sarah Hackley author says:

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

  10. RachelRoo says:

    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

  11. Sarah Hackley author says:

    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.

  12. screaminlucy says:

    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.

  13. Sarah Hackley author says:

    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!

  14. nailah17 says:

    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

  15. Sarah Hackley author says:

    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.

  16. julieack says:

    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.

  17. nailah17 says:

    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

  18. parmes says:

    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.

  19. nailah17 says:

    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.

  20. parmes says:

    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.

  21. Lr mom says:

    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!

  22. Rayne says:

    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.

  23. trains says:

    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.

  24. Sarah Hackley author says:

    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.

  25. Sarah Hackley author says:

    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.

  26. Marjorieson says:

    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 .

  27. Sarah Hackley author says:

    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

  28. Douglas says:

    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).

  29. Sarah Hackley author says:

    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.

  30. Melanie says:

    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.

  31. Sarah Hackley author says:

    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!

  32. 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.

  33. Sarah Hackley author says:

    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.

  34. pragone says:

    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!!

  35. Sarah Hackley author says:

    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!

  36. 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.

  37. DonnaFA moderator says:

    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)

  38. pogie says:

    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

  39. DonnaFA moderator says:

    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)

  40. lorriejeane says:

    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.

  41. Sarah Hackley author says:

    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.

  42. DonnaFA moderator says:

    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)

  43. Joleen1966 says:

    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.

  44. Sarah Hackley author says:

    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.

  45. 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!

  46. DonnaFA moderator says:

    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)

  47. Ellifane says:

    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.

  48. Sarah Hackley author says:

    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.

  49. deja3973 says:

    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.

  50. DonnaFA moderator says:

    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)

  51. montanaday says:

    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.

  52. jbright says:

    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.

  53. PamR says:

    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!

  54. Sarah Hackley author says:

    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

  55. Maureen says:

    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!

  56. 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.

  57. Sarah Hackley author says:

    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.

  58. Carolelaine says:

    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.

  59. CATRYNA says:

    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

  60. Sarah Hackley author says:

    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.

  61. Ejc says:

    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.

  62. Sarah Hackley author says:

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

  63. 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.

  64. Sarah Hackley author says:

    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.

  65. PegB says:

    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.

  66. Firemoth says:

    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.

  67. Sarah Hackley author says:

    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.

  68. drmaryb says:

    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.

  69. Sarah Hackley author says:

    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.

  70. 1h382qs says:

    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…

  71. kathydeitz says:

    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.

  72. Sarah Hackley author says:

    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.

  73. Mariposa42 says:

    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!

  74. Sunny says:

    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!

  75. Sarah Hackley author says:

    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.

  76. RachelRoo says:

    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.

  77. napa219 says:

    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.

  78. Sarah Hackley author says:

    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.

  79. RachelRoo says:

    ‘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.

  80. PegB says:

    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.

  81. Luna says:

    “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.

  82. zippy36 says:

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

  83. Sarah Hackley author says:

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

  84. Anne says:

    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.

  85. Sarah Hackley author says:

    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!

  86. Joey4420 says:

    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.

  87. Sarah Hackley author says:

    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.

  88. Holly H. says:

    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.”

  89. Sarah Hackley author says:

    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!

  90. PegB says:

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

  91. Aks2868 says:

    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.

  92. Sarah Hackley author says:

    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.

  93. lindaann says:

    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!

  94. Sarah Hackley author says:

    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.

  95. marycr8on says:

    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.

  96. Amanda Workman moderator says:

    @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)

  97. Sarah Hackley author says:

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

  98. KikiCat says:

    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.

  99. Sarah Hackley author says:

    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!

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