The Differences Among Us: What I Wish Others With Migraine Knew
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Profile photo of Sarah Hackley

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

  1. Profile photo of PamR 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!

  2. Profile photo of Sarah Hackley 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

  3. 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.

  4. Profile photo of Sarah Hackley 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.

  5. Profile photo of CATRYNA 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

  6. Profile photo of Sarah Hackley 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.

  7. Profile photo of Ejc 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.

  8. Profile photo of Sarah Hackley 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.

  9. 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.

  10. Profile photo of Sarah Hackley 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.

  11. Profile photo of PegB 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.

  12. Profile photo of Firemoth 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.

  13. Profile photo of Sarah Hackley 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.

  14. Profile photo of drmaryb 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.

  15. Profile photo of Sarah Hackley 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.

  16. Profile photo of 1h382qs 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…

  17. Profile photo of kathydeitz 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.

  18. Profile photo of Sarah Hackley 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.

  19. Profile photo of Sunny 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!

  20. Profile photo of Sarah Hackley 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.

  21. Profile photo of napa219 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.

  22. Profile photo of Sarah Hackley 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.

  23. Profile photo of PegB 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.

  24. Profile photo of zippy36 zippy36 says:

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

  25. Profile photo of Sarah Hackley Sarah Hackley author says:

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

  26. 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.

  27. Profile photo of Sarah Hackley 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!

  28. Profile photo of Joey4420 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.

  29. Profile photo of Sarah Hackley 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.

  30. Profile photo of Holly H. 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.”

  31. Profile photo of Sarah Hackley 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!

  32. Profile photo of PegB PegB says:

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

  33. Profile photo of Aks2868 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.

  34. Profile photo of Sarah Hackley 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.

  35. Profile photo of lindaann 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!

  36. Profile photo of Sarah Hackley 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.

  37. 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.

  38. Profile photo of Amanda Workman 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)

  39. Profile photo of Sarah Hackley Sarah Hackley author says:

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

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