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

  1. 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!!

  2. 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.

  3. 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)

  4. 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

  5. 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)

  6. 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.

  7. 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.

  8. 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)

  9. 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.

  10. 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.

  11. 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!

  12. 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)

  13. 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.

  14. 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.

  15. 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.

  16. 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)

  17. 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.

  18. 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.

  19. 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!

  20. 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

  21. 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!

  22. 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.

  23. 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.

  24. 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.

  25. 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

  26. 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.

  27. 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.

  28. 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.

  29. 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.

  30. 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.

  31. 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.

  32. 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.

  33. 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.

  34. 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.

  35. 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.

  36. 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…

  37. 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.

  38. 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.

  39. 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!

  40. 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!

  41. 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.

  42. 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.

  43. 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.

  44. 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.

  45. 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.

  46. zippy36 says:

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

  47. Sarah Hackley author says:

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

  48. 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.

  49. 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!

  50. 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.

  51. 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.

  52. 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.”

  53. 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!

  54. PegB says:

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

  55. 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.

  56. 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.

  57. 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!

  58. 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.

  59. 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.

  60. 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)

  61. Sarah Hackley author says:

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

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