Living Through Chronic Migraine – My Real Life

By Amanda Workman

3 min read

I have had episodic migraines since I was a young teenager. My migraines became chronic when I was in college in 2009. The challenges I faced were unreal at that point. I was so used to getting a migraine, taking an abortive, and then sleeping it off. If the migraine was extra persistent, I could go to my primary care for a migraine shot. When the migraines became daily, I was pushed into a whole new world. I have yet to escape that world some 12 years later.

The beginning of chronic migraine

I think my initiation into living with chronic migraines helped prepare me for what was to come in my future. Since I was working on the last semester of my undergrad studies, I simply had no option but to deal with classes and homework. I thought I was going to die but I had to push through.

Was it related to stress from school?

I spent my evenings and weekends in a dark room. Attempting to decide when to take the prescription migraine medicine was such a battle because I only had so many. My family tried to be reassuring by saying the migraine frequency was simply due to the stress I must be under from school. I held on to that hope all the way through my graduation.

Nothing changed when I started work

I tried so hard to convince myself that this would pass; that it was just a stage I was going through. Unfortunately, no longer having studies did not change my chronic migraine attacks. I worked five days a week, but it was long hours. While I dressed in business professional attire at work, I managed to wear sunglasses most of the time. Some people had jokes about my sunglasses. They would say I was trying to act famous, etc. but the super dark sunglasses made my life more bearable.

I couldn't find answers

Around my work schedule, I started seeing neurologists and then headache specialists. I was subjected to a battery of tests to try to see what was causing the migraines. Despite every test imaginable, no one could offer an explanation. I felt like I was living in a nightmare. But I knew I had to push through the migraine and live some sort of life.

Giving up on the emergency room

I learned that going to the emergency room with a bad migraine was futile. Even when I knew Toradol would help so much, they would basically give me Benadryl and a nausea medicine. I swear they just hoped I would fall asleep so they could send me home. They truly made me feel like I was saying I had a migraine to get drugs. I gave up on going to the emergency rooms. No matter how bad of a migraine I had, I would hide out at home and suffer in silence.

I felt alone in my struggle

I suppose I became jaded over the years when it comes to neurologists or headache specialists. It seemed like the only way they would ‘help’ me was by giving me a monthly supply of abortive and nausea medications. Learning to live with chronic migraine was something completely on me to figure out. That was like having a bucket of ice water thrown on me.

I have learned to live with the pain

I have been forced to live in amounts of pain that would completely cripple others. It is like being an unwilling masochist. The pain from chronic migraine has forced an increase in my pain tolerance. I have slowly become able to function with various levels of migraine that I would not have been able to tolerate 12 years ago. I have learned to live my life and use my medication based on my own pain scale. I feel the pain and side effects of my chronic migraine daily. Despite this, I still have a life that is worth living. I have a dog and beautiful nieces. No matter how hard it seems to believe at times, I am loved by people. For me, this causes me to continue forcing my way through the world of chronic migraine.

Can anybody relate to my story? Do you feel like your pain tolerance has increased due to living with migraines?

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.

Join the conversation

Please read our rules before commenting.

April.Sluder Moderator
Sometimes I amaze myself when I think about what I'm able to do while in pain. My tolerance has definitely increased over time as well. I think that comes from constantly pushing a little further before I take myself to bed. Best wishes, April - <a href='https://migraine.com' target='_blank'>Migraine.com</a> Team
1. Peggy Artman Moderator
 Hi <inline-mention user-id="3743254" username="jlynnegarrett"/> and april-sluder, thanks for sharing your experiences. I agree that we develop a tolerance to some level of pain. When I went to my neurologist, she always asks how I do what I do. Sometimes its just a necessity. ~ Peggy (Migraine.com team)
jlynnegarrett Member
I know that my pain tolerance has increased a lot. The only time I stop is when my ears start ringing nonstop and the vertigo gets so bad I can't walk a straight line.
1. Amanda Workman Moderator & Contributor
 <inline-mention username="jlynnegarrett" user-id="3743254"/> The ear ringing is never a pleasant experience. I cannot imagine how people regularly live with tinnitus. Trying to push through vertigo can get dangerous. You have to be extra careful with vertigo - Amanda (team member)
warriorwoman Member
My pain level has definitely increased. I used to be able to go to my previous Primary Care Doctor of 10 years who could take one look at me and say would you like a cocktail? Yes please. Then we’ll talk in 20 minutes. That cocktail was Toradol, Benadryl, Phenergan, B-12. It was lifesaving. He would come in, ask gobs of questions for my chart, examine me, make sure I was good to go. He was huge on empathy not sympathy and a straight talking Doctor. The fact I have previously worked in the medical field for 20 years and kept up on things made conversations a bit more interesting. He was forced to sell his practice due to changes in Law and cost to run it. My new PCP is sharp but in a Corporate type setting and not allowed to give this cocktail and is aware of it. My Pain Management Team only does my spine which is a mess and we know is a contributor to my migraines.
1. Amanda Workman Moderator & Contributor
 <inline-mention username="warriorwoman" user-id="3807369"/> I used to have a primary care doctor that would do the same thing. It was so helpful with the bad migraines! Now days, it seems as though you have a hard time getting an injection like that at an Urgent Care or ER. I have not had any luck with pain management teams. By doing your spine, do you mean like spinal taps and injections? I try not to have any of that done anymore. - Amanda (team member)
teri-howard Member
I have also been forced to increase my pain tolerance as there is no other option. It’s so hard to want to live when you have such terrible pain everyday. I gave up on going to the E.R also for the same reasons. It was if they thought I wanted a “fix” -even when I only went there twice a year! I’ve had migraines all my life but chronic daily migraine pain is so hard. It’s been 10 months now. No meds help for long. Isn’t there any hope? I
1. Amanda Workman Moderator & Contributor
 <inline-mention username="teri-howard" user-id="3787045"/> It can definitely hard to get through the days when you are in a lot of pain. But I have known people throughout the years, who were in the same position but have been able to find a treatment that was life changing for them. This gives me hope. Hopefully we will eventually find what works for us as well. You have to keep your head up. I hope you know, our community is here for you. Sending lots of hugs - Amanda (team members)
creolagal Member
You have my deepest sympathy. I, too, have chronic daily migraines and am having to cut back on Imitrex because of overuse. None of the preventives have worked for me, so I have to rely on pain pills, ice packs, and abortive meds. I suspect there are a lot of us dealing with this debilitating condition. With the amount of research being done now on migraines, surely there will be something that works for us soon. Hang in there.
1. Amanda Workman Moderator & Contributor
 <inline-mention username="creolagal" user-id="3861507"/> Have your doctors tried to give you two preventatives so that you can alternate them? Like imitrex and say relpax... Sometimes, being about to alternate can help with the overuse. I know, I wait too long sometimes to take an abortive because I dont want to use them too often. Sometimes, pain pills can cause a migraine (in my experience). I really hope that you are right!! Hopefully it will help us in the future. - Amanda (team member)
kdat Member
I can relate. I’ve pushed through the pain for years, but last September, things changed. With no abortive working for me for almost a year, I also developed fibromyalgia. I wonder now if that year of non-relenting extreme pain caused this new disorder. Has anyone else experienced this?
1. Peggy Artman Moderator
 Hi <inline-mention user-id="3686877" username="alice727"/> , this is interesting. I don't know if there is a connection with fibro and migraine disease, but it does seem like a lot of people with migraine disease also have fibro. Maybe someday the scientists will figure all of this out! ~ Peggy (Migraine.com team)
2. Amanda Workman Moderator & Contributor
 <inline-mention username="kdat" user-id="3714848"/> I know many people who deal with both migraine and fibromyalgia. My migraines became chronic several years prior to my fibro. Most research does say that fibro starts after a trauma, surgery, infection, etc. This leads me to believe that chronic migraine pain could lead to fibro issues - Amanda (team member)
lexie1113 Member
I feel like this is me. I've been suffering with chronic migraines for over 17 years now. I have now tried just about every preventative and abortive medicine and none of them work. Last time I went to the ER, they said they don't give pain medicine for chronic pain. Which is ridiculous. I haven't been able to get am ER to help with pain in years. They give me Tylenol, Benadryl, Phenergen or Compazine, and a steroid. Like I hadn't already been doing that at home. Like if that worked, I would be at the ER.
1. amendt Member
 If you have a doctor treating your migraines that trusts you, they can usually be called from the ER and tell the attending ER physician to give you pain medication.
wiseoldowl72 Member
Hi, I've had migraines as long as I can remember. They began as abortive and we started to get treatment in high school (80s). After my daughter started presenting with Aspergers (2005) at 4 my migraines started creeping toward chronic level. I had stopped working as a research historian to stay home with my kids in 2001 when Katie was born. Jami was born after a difficult (bedrest) pregnancy in 2004. He followed in having Aspergers and mental health issues in the later 2000s. I was trying to care for two mentally unstable children with developmental disabilities alone because my husband worked 2 full-time jobs to pay for therapy and prescriptions. By 2010 I was having daily migraines and atypical trigeminal neuralgia. I have an awesome neuro, but I am an enigma when it comes to finding anything that I can take or 5hat works. Like you, I do not go to the ER, they don't help and it's money we can't afford to pay. I have kept a list since high school of the meds/procedures we've tried and I'm up to over 75. I am mostly either in bed or on the sofa in the living room. I live with a level of 4-5 pain all the time. The pain has made me stronger, but I can't do anything with my mental strength except daily choose to live for myself and my family. I now rate my days in good hours vs bad ones. So far with the new CGRP meds I have had the best December I have had pain-wise in years. I have hope that maybe I can bake again. For now my life is my tablet and my caretakers are my family. FYI, my improved pain scale is pinned on my Twitter wall <inline-mention user-id="3835198" username="wiseoldowl72"/> . Peace and blessings, Michelle.
1. wiseoldowl72 Member
 Julie, the shots took almost a year to show any difference. I'm a slow responder. I'm using Ajovy. Aimovig did not work for me at all. I can't take any of the usual abortives like the triptans or dhe. Ubrelvy is the only cgrp abortive pill that works, but only in combination with a cocktail of other meds my neuro and I found by trial and error. So it's not as easy as taking a shot, my other preventatives, and abortives. I'm still in pain (4-5) 24/7. It's getting the 11+ migraine flares with other stroke like symptoms under control and not following through on suicidal ideation that has made the difference. I truly wish you find something that relieves your pain. Peace, M.
2. Melissa Arnold Community Admin
 Hi, Michelle! I'm so glad you're having good success with the CGRP meds, especially given how long you had to wait to see results -- lots of folks probably wouldn't. What made you decide to stick with it? You make a really important statement too about the need for trial and error when trying to establish the right treatment strategy. We are all so unique and migraines are fussy! Many of our advocates here have shared it took years to find the right combo for them. Others are still searching. The point is that there are options and hope. Thanks for sharing! -Melissa, <a href='https://migraine.com' target='_blank'>migraine.com</a> team
julied Member
Hi I feel like you are describing me. I too have always been good with pain but now my pain threshold is enormous. Ive had one continuous chronic migraine now for 40 wks and no body can help .....yet. Nothing over the counter or prescription. Ive never ever been given help at hospital they discharge you and make u feel younwasted their time. I even had a cerebral hemorrhage last September and as outside the skull it wasnt deemed serious.I have had every test known and everythings normal. How can this be so? Ive had fremenuzab/Ajovy x 3 and cefaly machine now for trigeminal neeve stimulation for 40 days. Botox next wk. I feel a kind of acceptance is washing over me and I get on with it now and live my life as best I can. I score the pain 3 times a day. Can be anything (out of ten) from a 3 (rare but wonderful ) to an 8. 8 and above then I must go to bed. I can only tolerate gorgeous grandkids for 2 hours and cant cope with stress of looking after them anymore. Ive worked for nhs as a nurse for 26 years but have been off sick since sept 2020. Managed to struggle to work with this from may to sept. Beginning to lose hope that anything will ever work. Do people ever grow out of it? What happens after botox? If that dosnt work? I just use cefaly as it in itself is torture so its fab when it comes off! Bizarre but true! And refrigerator eye masks. No drugs at all as no point as none touch it at all. Think I shall have to retire soon. Sad but always someone worse off than us. I swim or walk most days for the endorphins. But cant always manage. Keep smiling everyone. Good to know were not alone
obf1cx Member
I have been living with chronic debilitating migraines that became constant about 1 1/2 years ago....I have discovered that most people with chronic pain and chronic diseases have "limbic system impairment"....the part of the brain that alerts the body to danger goes haywire due to the chronic pain...and continues firing all the time, creating more inflammation and pain.... Because it is really malfunctioning, it cannot stop itself...but there are brain retraining programs that can help....I am doing one that has been very effective....It is Annie Hopper's DYNAMIC NEURAL RETRAINING SYSTEM (DNRS)....but it requires a lot of mental self discipline, doing a simple daily practice and keeping yourself from sliding into depression and hopelessness....I keep stopping and starting, but SO MANY PEOPLE HAVE BEEN CURED BY IT, I want to continue to do it....You can look online at RETAININGTHE BRAIN.COM to get more info and see lots of testimonials.... Also, to let you know, I have lyme, and I know that my headaches have to do with systemic inflammation...I have found neurologists useless because they do not try to find out the cause....but if any part of your body is screaming in pain...it's because there is something wrong! I went to an integrative doc in Albuquerque who did a bunch of unusual tests -- and found that there were several sources of the inflammation -- part of it being leaky gut -- The gut is very related to nerves in the head....He had a protocol that would help me, but the supplements, (and many foods now), make headache worse....so I have to try to get the pain level down so I can just take the supplements...I am trying to get into a pain clinic for the first time....to help me tolerate the pain while I do my brain re training work.... I tutor very part time,, virtually....I find that my headache goes down when I am working with my kids....so I keep doing that. I also do a lot of online Scrabble at night....I can see that diverting my mind's attention from the pain works....so that proves to me that these migraines are curable.... I am also trying to do Annie Hopper's Dynamic Neural Retraining System....to rewire my brain.... There is a famous book I am about to order called THE BRAIN THAT HEALS ITSELF.... THIS website should do a write up on that....
skiingisbelieving Member
I'm so sorry for your suffering. I highly encourage you to check out the Stanton Migraine protocol. I was near chronic 2.5 years ago, and since starting this migraine protocol I have my life back. It involves a controlled but wonderfully varied diet, plus electrolyte management, and some other factors--I had tried every modification and elimination so I was skeptical at the start, but it is truly incredible. I rarely have a migraine and when I do I can abort it quickly without meds. The support group is full of people who were absolutely desperate and are now living full, healthy lives. I can't post a link here b/c it usually gets taken down, but do a search and see if it interests you. I wish you all the best!
fraidycat Member
Hi Amanda your life is forever changed. 12 years is a long time with chronic daily migraine I am going on 25 years and menopause made everything worse including my chronic pain. Like you I refuse to go to the ER and be treated like an addict. I manage my pain at home with narcotics toradol and gravol injections and imitrex on a daily basis first thing in the morning and after supper everyday.my pain Dr gives me Iv lidocaine and magnesium and trigger point injections every 3 weeks. Life sucks you learn to live with the pain but there comes a time when you can’t and that is when you can’t take it anymore because pain has won and there is not a thing you can do about it .There is only survival mode and you just wonder if you will make it through the next “killer” migraine that lasts for days and nothing you take will touch the pain and you just want to die .This is what I dread the most
1. themiche Member
 Menopause made everything worse for me too. They told it me it would go away with menopause,, because I would get menstrual migraine. Instead, it got worse.
2. Melissa Arnold Community Admin
 Amendt, that's infuriating! Migraines can have all kinds of triggers, and hormones are one of the more obvious, well-known ones! It's so hard when we are sometimes the ones educating our doctors ... I hope you are working with someone better now. Yikes! -Melissa, <a href='https://migraine.com' target='_blank'>migraine.com</a> team
tigger2 Member
I've had migraines for over 40 yrs but they didn't become chronic until after I'd had numerous surgeries with spinal anesthesia. I will look up the Stanton migraine protocol. Thanks.
amendt Member
Welcome to the world of status migrainosus. Intractable migraine. I am 70 years old and have had this head pain every day for 49 years. I've been thru 3 marriages. They couldn't stand the fact that I couldn't do all the things THEY wanted to do. (Dancing to loud music or attending rock concerts are just not high on my list.) No one understands what we go thru unless you're one of us. We are a race of humans in pain and it's "soul" pain. It's different if your arm or leg hurts. But when your BRAIN hurts, it's soul pain! You can't even think! I am lucky to be taken care of the last 35 years by a physician that keeps me supplied with adequate pain relief. My visits to ERs were taken seriously and I was always given Dilaudid. Morphine and its derivatives make my head worse. Very few anaesthesiologists understand "morphine migraines". I have to educate them. Being a retired Scientist helps since I am conversant in medical jargon. I can't wait to die some days, just to be pain free. Blessings to all of you. Lin
1. ccf23 Member
 <inline-mention username="amendt" user-id="3805856"/> Absolutely. Sometimes I fantasize about having an incurable disease with chronic daily pain that is actually fatal. 
2. anthony.carrone Community Admin
 Hi all, Thanks so much for sharing your experiences with each other. It's important to talk about these feelings and know we are not alone with them. In case anyone is in need of or interested in, I just want everyone to know that we have resources available for your support: <a href='https://migraine.com/mental-health/coping-general-resources' target='_blank'>https://migraine.com/mental-health/coping-general-resources</a>, <a href='https://migraine.com/mental-health/coping-suicide-prevention' target='_blank'>https://migraine.com/mental-health/coping-suicide-prevention</a>. Our advocate, Kelly, recently posted this article that might resonate as well: <a href='https://migraine.com/living-migraine/depression-finding-help' target='_blank'>https://migraine.com/living-migraine/depression-finding-help</a>. Sending vibes for some comfort and relief. Warmly, Anthony (Team Member)
atch755 Member
I completely understand what you’re going through. I was diagnosed with migraines at 8 years old. In my teens I would have to get a knockout shot one to two times a week. I learned to live with my migraines as I got older. I am 65 years old and for the last ten or so years, I have waken with a migraines and went to bed with my head pounding. I used to take 6-10 excedrin migraine caplets a day. About four months ago I went to a neurologist. He agreed that I have migraines. He took me off any and all pain meds. He prescribed amitriplin. I thought he was crazy and didn’t know what he was talking about even though he claimed he and his wife had migraines. I thought I would try it but with no good expectations. Much to my surprise, since I started with this medication I have had only four migraines and they were minor and completely cured with Imitrex. This has been a blessing as I no longer have a migraine every day. I hope this information will help others.
1. MelanieM Community Admin
 atch755, I am so glad to hear of your success using Amitryptiline as a preventative, that is fantastic! Thanks for sharing with the community. ~Melanie (team member)
philp Member
I have to quibble with the use of the term "chronic". To the medical community, "chronic" can mean "frequent" or it can mean "constant". What's bad is when you tell a physician you have "constant" pain and they write "chronic" in their notes. The next physician to see your record interprets "chronic" to mean "frequent" and they ask, "how are your headaches?" when there's just one headache...it's the last thing you notice when you fall asleep and the first thing you notice when you wake up. Because of this, I neither use nor acknowledge the word "chronic".
1. ryanphx Member
 I love this comment. Doctors don’t understand this!! There’s no plural headaches it’s just ONE HEADACHE for eight years for me. If doctor can’t understand how can anybody else?
2. ccf23 Member
 <inline-mention username="philp" user-id="3859824"/> This is interesting and explains some of my experiences with doctors. I personally take issue with the word headache. As we all know it is SO much more and to hear a doctor reduce it to that one word is disheartening.
angiekayy14 Member
I know exactly how you feel. I've had Migraines since I was 12, now 52 & each day they get worse. You're also right about the ER giving Benedryl and nausea medicine. That just makes you sleep & wake up with the same migraine. I've also been on Imetrex, Maxalt, Neurotin, Topamax, Ajovy injections, Botox injections, nerve blocks( shots on my scalp and nerves in the back of my neck) all of which haven't worked and some caused allergic reactions). Now they're trying Maxalt again since the first time I used it was around 30 years ago. So I have migraines daily, some worse than others but still everyday is just too much. I'm to the point I don't know what else to do. My daughter also unfortunately has migraines, almost every day. She's also been diagnosed with a chronic pain disease CRPS which is constantly in pain. Like I said I'm to the point I don't know what else to do. I hope that you have better results than we have. God Bless and Watch over you always.
suprwmn45 Member
At first I thought you were writing about my life. The more I read, you really did write about my life, like a mirror image. I swear I have tries most preventative medications which worked for a couple of months, then the migraines would break through. I still feel like it's a hopeless cause
1. MelanieM Community Admin
 @Superwmn45, I am sorry to hear you have experienced breakthrough with the preventative medications. Have you been able to try any of the CGRP injections yet? Did they help and then stop working for you also? I know how frustrating it is to have a preventative fail, I can't imagine having it happen so frequently. ~Melanie (team member)
2. ryanphx Member
 Can’t speak for her but those CGRP shot made my migraines MUCH WORSE ended up going to ER after both Aimovig and Emgality two years apart. So tell me more about “breakthrough drugs” it’s all nonsense. Not meant for chronic migraines
themiche Member
"I have slowly become able to function with various levels of migraine that I would not have been able to tolerate 12 years ago". For me, it has been 20 years. What would have sent me to the ER before, I can tolerate. I can even play the piano with migraine now, something I practised doing. Since the Covid epidemic, my migraine has got even worse and I will not go to the ER because I am afraid of contracting it there. My tolerance has improved even more.
1. AML1 Member
 <inline-mention username="themiche" user-id="3903343"/> Mine also got much worse when I had Covid earlier this year. I’ve had them since I was 12; been chronic/ daily for the last 14yrs. I got pregnant at the end of 2019 & my migraines improved so much. It was a miracle. I wasn’t in bed all day, everyday anymore. I still had them but they were mostly manageable/ tolerable. I got off a bunch of meds. I had somewhat of a life again. But then I got Covid & the migraines slowly started getting more frequent & worse & a few months later I was right back to how I was prior to getting pregnant. But I’m even less responsive to meds/ treatment now. 
2. Holly Harding Moderator & Contributor
 <inline-mention username="AML1" user-id="4699787"/> Oh that sounds so frustrating. Sorry to hear that your condition has become more stubborn, frequent and intense since getting COVID. Especially since you'd just experienced a reprieve. Many women experience a real break from migraine during pregnancy (especially those whose initial migraine onset coincides with puberty as it sounds like yours may have?). Are you working with a migraine specialist? Have you ever tried a hormonal approach like taking a continuous birth control pill that regulates your cycle? I ask only because this is one of my primary triggers as well. Have you tried any of the new CGRP drugs? Thinking of you. Warmly- Holly <a href='https://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team.
dave1954 Member
I started having constant migraine 20 years ago after a TBI. My employer said he'd keep me on if I'd show up everyday, didn't have to do anything and could sleep as much as I needed to, which was all the time. Over several years my cognitive deficits improved to where I actually became productive again and eventually started my own business, but constant migraine stayed with me. I have always gotten pretty good pain control with Excedrin Migraine, 4 with a famotodine before bed, then I wake up migraining around 430, let the cat out, and take 4 more. I think I have increased my ability to function with pain, nausea, and fog quite a bit over the years, still get one every 2-3 weeks that is 2 days in bed. I am retired now and life is really good, too good to let migraine ruin it. Haha (fake laugh), my tinnitus is screaming now, neck is tightening up and it's hard to find words, migraine is coming to visit soon, my heart goes out to all of you who have commented.
alice727 Member
I also have lived with chronic migraine. Mine has morphed into vertiginous migraine which has added a whole new dimension of nightmare to existence. I am now 72 years old and have been dealing with migraine since I was 11. At the time, very little was known about migraine and no one believed that children could even have migraine. I have had a complete hysterectomy at the age of 32 in the belief that hysterectomy would cure migraine. Obviously, it does not. However, male gynecologists think hysterectomy cures everything. Or at least at the time they did. Now I find as my symptoms become worse my world becomes smaller and life becomes more and more tedious and difficult. I certainly hope in my next life I will find out what I did so wrong in my previous life to deserve this. And yes, my migraines are hereditary. This is why I have declined to have children and my sister has also declined to have children in the off chance that she would pass on this horror. Although she does not have migraine, she may carry the gene or whatever it is that passes is on. Being a migraine sufferer, I'm quite sure I would pass it on as my mother had it and her mother had it. For all of my fellow migraine sufferers, you have my infinite sympathies. Do any of you also suffer from dyslexia? Do you also have a problem with aphasia and a problem figuring out where on Earth you are as you can no longer discern your location? Sometimes I cannot even figure out what city I'm in. Life is a never-ending puzzle and Technology makes it a kaleidoscope. One I do not enjoy. I sincerely hope your experiences with life find some joy and hope for the future.
heidiann8 Member
I am always interested to hear from other people experiencing daily migraines. There are many of us out there that suffer chronic pain and yet continue to press on with the hope that some day there will lessen the frequency of them or ease the pain. I myself have had migraines for over 30 years. My headache specialist is very knowledgeable and proactive but we have yet to find the key. I even spent 12 days this past fall at a migraine clinic without luck. Sigh. Anyway, thanks for sharing your story, it helped to renew my persistence to live each pain free moment to the fullest. I hope healing and wellness are just around the corner for us all.
1. Peggy Artman Moderator
 Hi @IChooseHope, I like your name! I too experience chronic daily migraine. There is a lot more research going on than ever. There are more medications being studied under clinical trials. I'm glad you have a wonderful doctor. That makes all the difference. I agree that we still have to press on as best we can. Peggy (Migraine.com team)
philp Member
I grew up with perhaps one headache a year which was easily remedied with a couple of aspirin + a nap. For me as an adult, it was someone running a red light and nearly killing me and causing constant pain. We were a few months into making the round of physicians and three neurologists in the same practice who finally said, "we're going to ship you to Chicago". (keep reading) Fortunately, I'm on a second phrase of not being in pain, chronic or otherwise. The first cycle started July 5, 2019; and lasted until October 17. (I think that makes 105 days, depending upon how you count fence posts.) On the 18th, the pain returned and remained with me nonstop until October 12, 2020, when I realized at 14:05 that I had no pain. At the time of this writing (Friday, February 5th), that's 117 days. I'm guessing it's the Emgality I've been taking since Halloween, 2018. Strangely, Lilly is less than 15 miles from me sitting on the couch, but it was a trip to Chicago's North side to a member of the recently announced short list of "Chicago's Top Doctors" (Dr. Diamond) which got me started. Now, before everyone starts assuming it will do the same for them, I have a friend I've known since 7th grade who has tried the anti-CGRP meds and has been beset by most of the known side effects (including hair loss and rebound pain) as well as a few new ones. So as the old Internet abbreviation goes, YMMV (Your Mileage May Vary).
robinraoc Member
Boy does this ring true. I am lucky to have support from my PCP but even there, it had taken all of the above, the testing, the trials, etc just to 'settle' on something that kinda works because the other stuff - including those botox shots (ring of pain) doesn't. Hanging on to the positive is what I try to do--I know, with taking care of myself I can push my migraines back--I am very used to the pain and can do a lot w/ them when needed--but this is sooo draining and can lead to worse episodes later. So pacing, organizing and cutting myself more slack, not pushing my goals into unrealistic timelines, and being real about what I need to and want to do. Holding my cat for 15 minutes can do a lot more for me than worrying about some made up task that can actually wait or might even be 'busy work' aimed at pleasing what, a cultural setting? Are you comfortable, those who depend on you taken care of and safe? We need to be a lot kinder to ourselves because with what we have to deal with AND we still get things done--remember how amazing that is.
theresagreenwood Member
You have written my short story. I still have the everyday, four am headache. You only missed the hospitalizations for dehydration, doctors telling me migraines aren’t genetic, the weight gain from meds, and the awful hell of being in pain all the time. No one can possibly understand how awful it is. My ex husband even said he wouldn’t have married me if he had known how sick I could be. Never could stay on my feet. The whole wanting drugs thing so real as if I wanted to come to a torture chamber beaming with bright lights and then be asked 100 questions four ways. Really??? Nurses and doctors you needed to puke in to prove you were sick. Never being able to plan stuff because it was gonna rain and I had to have a headache. If I had only known then what I know now, I would have probably done something way different. It is the most debilitating condition ever. You have zero control over it. At times I even pass out. Medical so called science is useless. Weather is a huge problem for me. I have tracked all I’m gonna track, jumped through enough stupid hoops, and been insulted and demeaned by so called professionals. Had enough ba from all of the.
nurse2maya Member
I have had migraines since 1985. I have Hemiplegic Migraines. They are quite debilitating! I have just retired from nursing of 40 years. I have tried every medication, and nothing has helped for very long! I even went to the Cleveland Clinic and they said their is nothing more that they can do for me! I now just treat my symptoms and just "live with it". I grieve with all of those who suffer from all types of migraines, may God give you strength and peace.
1. Melissa Arnold Community Admin
 Hi, Nurse2Maya. I feel how much you have been through, especially after working all those years in nursing. That's not easy for anyone, let alone a migraineur. Sometimes all we can do is treat symptoms the best we can, you are right. That's hard. I hope you continue to search for a treatment combo that could help you -- there are over 100 different options out there -- but most importantly I hope you have things that still bring you some peace, joy and a sense of community. We are all here for you. -Melissa, <a href='https://migraine.com' target='_blank'>migraine.com</a> team
redmso Member
This sounds like my life. Unfortunately, I was denied promotions because I didn’t “socialize “ enough after working 60 hour work weeks.
1. Melissa Arnold Community Admin
 That's ridiculous, Redmso. Even perfectly healthy people have trouble fitting much in beyond eating and sleeping with a 60-hour work week! I'm so sorry this has happened to you. Have you ever tried looking for a different job? Sending hugs. -Melissa, <a href='https://migraine.com' target='_blank'>migraine.com</a> team
pragone Member
I've lived with migraines for forty-plus years. For the last ten years they have been chronic, daily. I have a bag of tricks I use daily, but can only resort migraine rescue prescription two times a week. Because I have pain every day, I suppose my pain tolerance has increased, but if that's true why are they still so debilitating and painful?
1. MelanieM Community Admin
 Hi <inline-mention user-id="3853971" username="pragone"/> , I'm sorry to say I don't have a great answer for this. For many of us, I know that our migraine patterns change over time, varying in intensity, often in response to changes in our treatment plan, sometimes organically. I know that the preventative medications I take have made the intensity of the pain I experience with chronic migraine less painful than it was with episodic migraine. Have you found any preventative medications that seem to help? I've found this to be an important part of my treatment plan since we can't take the rescue prescription more than a couple times a week- but I know it can be quite a process of trial and error to find a preventative that works well or has tolerable side effects, too. Let me know what you think. ~Melanie (team member)
2. pragone Member
 Hi MelanieM, Thanks for responding to my post. I have tried too many preventative medications to mention. The last being Aimovig with botox. I couldn't tolerate Aimovig side effects, so now I'm getting weekly nerve blocks and botox every three months. The first week was promising, but now I'm wondering if the pain of the nerve block injections are worth it. I'm back to daily migraines. I'll stick with NB therapy awhile longer. My thinking is, the second Covid vaccination may be causing increased migraine attacks and once that's run its course the NB plus botox will be able to do their job. Who knows. The whole migraine thing is such a guessing game. What works for one may, or may not, work for someone else. I'm extremely fortunate to have a neurologist I respect and trust as well as a solid support team at home. You mentioned preventative medications. I have a bag of trick, like most migraine sufferers. Meditation helps, sometimes. Allowing the hot water of a shower to pour over my head gives temporary relief. And this may sound strange, but IF I catch an attack early I can exercise it away. This is my "go to" method of rescue. However, the attacks usually happen around 2 - 3AM making getting out of a comfy bed, feeling like there's an axe in my skull, to exercise, very difficult. But I do it because I know the pain will just get worse if I don't. I'm going to try the Nerivio device. Cross your fingers. Being in this group and reading of other migraineur's tricks, trials, failures and success stories gives me hope and reassurance...I am not alone. Thank you for being here and sharing.
drcindyinjax Member
Yes, I can totally identify with your story. I haven't stopped looking for treatments, but it can be very discouraging at times to be dealing with so much pain. I never thought that I would spend so much of my life in a dark room with an ice pack on my head.
amendt Member
Hi, thanks Amanda. I'm just getting around to this article for the 2nd time. So on target because daily I realize I live thru pain that would put others out of commission! People stay home from work with a "headache", yet I went to work for 40 years w my eyes watering and sensitive to light, nauseous, head splitting in pain, and just somehow pushed it all to the back of my existence, just to stay alive. I can't believe what we suffer is not taken seriously by so many medical practitioners, co-workers, etc. I wish and hope for a cure for our malady every day. Thanks for another spot-on article. Lin
Papa Smurf Member
Hi all! I too live in chronic pain 24/7 and get clusters. Single dad with 2 awsome kids and is classified as disabled. I try my best but out of options… been through all the meds and infusions/treatments. I don’t post I’ve been hiding in my own world. I confided in my spouse form support through this but she found someone else. I struggle each day it’s hour by hour how my day will go. I don’t talk about it, I lost most of my friends and family as they see my as not a valued person anymore. I live to watch my kids grow up. I fight for them, they are the reason I fight so hard. I know we all have out own issues to deal with, this is my first time talking about on a social platform and not sure what to say. I lose track of what I’m saying and can’t remember things If anyone wants to talk I am open to it. I guess I need help in moving forward. 
1. Cheryl Picerno Moderator
 @Papa Smurf thanks for sharing what you are going through. That's a big step you just took there and I'm proud of you! I'm sure it's hard being a single parent and being ignored by your family. Just focus on you and your kids. It can be a struggle to move forward with your life, but that's why we are here! You can come here and vent or cash in on other's experiences. It is a safe place. We are here for you! Warmly, Cheryl <a href='https://migraine.com' target='_blank'>migraine.com</a> team
2. Holly Harding Moderator & Contributor
 <inline-mention username="Papa Smurf" user-id="4232455"/> you are not alone in how you feel. Migraine is a real challenge and can tax the strongest relationships. So glad you have your kids and that they have you. I live with chronic daily migraine and can relate to how you are feeling and want to remind you that you are absolutely worthy and valuable! Migraine can drain us and make it hard to see and think straight but we migraineurs are some of the strongest people out there! We fight severe and frequent pain and keep going. You are doing just that. You are looking for the meaning behind this challenge you’ve been given and you’re seeking to support others as they do the same. You are going above and beyond by doing that and by reaching out here today. It’s normal to feel down sometimes- here’s an article that you may find useful on that front : <a href='https://migraine.com/living-migraine/turn-corner-when-feeling-down' target='_blank'>https://migraine.com/living-migraine/turn-corner-when-feeling-down</a>. We are here for you and in this with you. Please keep in touch and know how glad we are that you are here with us. Warmly, Holly (migraine.com team)
Papa Smurf Member
Thank you so much for the heart felt welcome. I guess this is the first step, what do j do now? 😆. All my focus is on my kids, they are all I live for. Can I ask if anyone tried the mushrooms? I was told it can help? Sorry if im asking too many questions I don’t talk much. 😆 
1. Holly Harding Moderator & Contributor
 <inline-mention username="Papa Smurf" user-id="4232455"/> there’s no such thing as too many questions! With chronic and severe migraine, one day at a time is a great approach. As for a first step, are you working with a migraine specialist or neurologist? As for mushrooms, this would be something to discuss with your doctor and would depend on the type of migraine you get. Generally psychedelics are talked about only in relation to cluster type migraine headache. Honestly ask any and all questions you have. You can also use our search bar option to see what existing resources and articles we have relating to topics you want to learn more about. We look forward to hearing from you! Warmly, Holly (migraine.com team). 
2. Melissa Arnold Community Admin
 <inline-mention username="Papa Smurf" user-id="4232455"/> You are so welcome here! You never have to worry about saying too much or asking too many questions. We literally exist to support people with migraine, so bring it on! Feel free to share as much or as little as you'd like. If you're comfortable sharing, how old are your kids? It's clear how much you love them. Keep fighting the good fight! -Melissa, <a href='https://migraine.com' target='_blank'>migraine.com</a> team
Victor Member
Welcome to my world.
1. Cheryl Picerno Moderator
 <inline-mention username="Victor" user-id="4600141"/>, welcome to the <a href='https://migraine.com' target='_blank'>migraine.com</a> community! We are glad you've found us. Living with a chronic condition is challenging, for sure. I hope you have found ways to help manage your attack cycles effectively. We are here to support you whenever you need us. Is there anything specific you would like us to help you with? The community here is filled with people who understand migraine and its symptoms, and it's a safe space to gather knowledge and support.
mellies Member
I absolutely can relate to your story! You said it so well. I sure hope life turns around for you. Stay strong.... never give up.... never surrender to discouragement🤗
1. Holly Harding Moderator & Contributor
 <inline-mention username="mellies" user-id="3918374"/> Such kind words. Thank you for being such a warm and compassionate member of our community. We are so grateful you are with us. Warmly- Holly <a href='https://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team.
amendt Member
No one gets it! I spend 85% of my day trying to figure out how I can make the pain go away. It's quite unbelievable so many of us suffer this chronic, constant unbearable pain, and STILL the medical profession is clueless as to its cause. And YES! We are so used to pain, we minimize all aspects of it for most of our waking hours, and even suffer while we sleep, counting the hours until we can be good enough to ourselves to take the next pill... This is a horrible way to live, yet it's not publicized, and headache research is soooo underfunded at NIH. Even the latest monoclonal anti-CGRPs have clinical endpoints for efficacy that are LUDICROUS! At this point, I'm tired of pretending. I worked as a scientist for over 40 years, 30 of them at HHS, thru years of Cluster Headache attacks, migraines, etc. It was anathema to even consider going out on disability! That would have unthinkable! So I'm 72 and ready to die. I'm in excellent physical shape except my head NEVER STOPS HURTING. BADLY. Thanks for listening...those of you who can relate, will totally get it... Lin 
1. Cheryl Picerno Moderator
 <inline-mention username="amendt" user-id="3805856"/> You make some excellent points. Thank you for sharing with us. Migraine disease is getting better funded and researched now, BUT it has so far to go! It still only receives a fraction of R & D funding compared to other conditions. I'm sorry that you've continually suffered for so many years. Have you ever found any therapy or combination therapy to give you some relief? I understand how hard it is to live with chronic migraine when therapies don't work for your body. I hope you find some respite soon from your pain. Warmly, Cheryl <a href='https://migraine.com' target='_blank'>migraine.com</a> team
2. Melissa Arnold Community Admin
 <inline-mention username="amendt" user-id="3805856"/> Lin, you have been here with us long enough to know you are in good company here with us. We get it. And I hope you know how much your voice is appreciated. Hugs to you. -Melissa, <a href='https://migraine.com' target='_blank'>migraine.com</a> team
CommunityMember358 Member
I grew up with migraines and was not allowed, I think...I'm not sure if I was not allowed to seek a quiet place or if I didn't know it was an option. I do have a fairly high pain tolerance. And very effective ways to deal with 
1. Tom Picerno Moderator & Contributor
 <inline-mention username="CommunityMember358" user-id="3764247"/> There are definitely differences in family cultures that will determine how we approach things. I grew up in a family where slowing down or stopping for self-care was not encouraged at all. We were raised to push through and move on. I understand having a high pain tolerance. Mine has heightened over the years due to migraine and various other conditions. I'm happy you have effective ways to manage your condition. It is helpful to find ways to effectively manage our attacks and symptoms. Wishing you migraine-free days, Tom <a href='https://migraine.com' target='_blank'>migraine.com</a> team