The Migraine Dirty Dozen – Things Not to Say to a Chronic Migraineur
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Dear family and friends of chronic Migraineurs;

I write today to tell you what your loved ones probably will not — a list of the top things the Migraineur in your life will have a visceral, negative reaction to when heard coming from someone they care about:

The Dirty Dozen

1. If you could just lower the stress in your life. Migraine is not caused by stress, and although lowering stress levels is good for anyone, this will not eliminate our attacks which are both genetic and neurologic in nature. Saying this will cause additional stress to us though, because we have enough to deal with in our lives without feeling guilty and judged by those we care the most about. What we need the most is acceptance and to know that you are there to help us when we need it the most. Next time, why not offer to lighten our stressful load instead of making a comment that is not helpful.

2. You look so good/ You don’t look sick. Chronic Migraineurs use an enormous amount of energy trying to look as normal as possible, and we want to know that we have been successful. However this statement sounds condescending and judgmental to the chronically ill — as if we must not have a real disease because you cannot look at us and see the ravages it has caused in our lives. We know you don’t mean to hurt us, but if you could see the results of our disease on the inside of our bodies and our lives, you would be shocked and take a much less cavalier attitude toward our struggles. Next time, why not simply say “I am SO happy to see you today!”

3. It can’t hurt that bad. Migraine, especially chronic Migraine is one of the worst kinds of pain there is, and is often undertreated enough to cause disability to the patient. Add to that the nausea and vomiting and other symptoms we suffer sometimes daily, and the symptoms work in concert with each other to create a situation from which we cannot escape yet may become desperate to try. Chronic Migraine results in suicides that happen every year, devastating lives across the board. Next time, why not try asking what you can do to make the Migraineur feel better.


4. It’s all in your head. Clinical depression and Migraine are both primary (not caused by anything else) diseases involving neurotransmitters such as Serotonin. While it is common for clinical depression and Migraine to be comorbid — especially chronic Migraine — it is certainly normal for anyone with a chronic disease to become depressed as a result of their experience and should be expected as a normal result of the patient’s illness that can be minimized, treated and helped with a knowledgeable physician and a good support system. Migraineurs are not crazy, lazy or seeking attention. They have a disease. While it is usually not yet possible to see changes in labs or imaging in the Migraineur to prove their neurological disease exists , other physical signs abound and may include increased heart rate, respirations and blood pressure, dizziness, weakness or paralysis, the inability to speak, nausea and vomiting, among other symptoms and signs. Migraine is genetic and cannot be controlled by the Migraineur beyond the scope of seeking treatment from a headache specialist and their team who will try to prescribe medications and treatments which may or may not work for any individual patient. Next time, why not ask what you can do to offer support to the Migraineur.

5. It’s a “woman thing”. Please, let’s not take this back to the dark ages when epilepsy was “demon possession” and “hysterical” women with tight corsets suffered “the vapors”. Men experience Migraine. Children experience Migraine too. There are physiological differences between males and females of every species, and this is a good thing. These differences make life much more interesting. Some of those differences can also trigger Migraine in those people with the genetic capacity for the disease. A frequent trigger is reproductive hormone fluctuations. Unfortunately for women, their reproductive hormones are designed to fluctuate, and lucky for men their hormones are meant to remain more stable. Hormones are only a small part of the Migraine picture though, and only one of thousands of potential triggers. Next time, consider asking the Migraineur about their particular triggers instead.

6. You can work through it. Chronic Migraine is recognized as a disabling, systemic disease by patients who experience them, as well as physicians who treat them and even the government who offers Social Security Disability to those who suffer from it. A Migraine attack often is worse than the worst flu a non-Migraineur can imagine, yet is often refractory to the easy to find treatments used for a case of the flu. Once the flu goes away you’re done. Migraines come back over and over and over again, sometimes for decades or a lifetime. Chronic Migraine is relentless. Instead, why not suggest a shortcut to make their job easier, or offer to help them until their medicine begins to work.

 
7. Take a pill. Migraine is a genetic neurologic disease spectrum of which pain is only one part. You probably didn’t know that a patient can have a Migraine without the pain component at all, or that Migraine attacks can range from relatively mild, to life threatening. You might not realize that most chronic Migraineurs take preventive medicine every day. No two patients are alike, and what works for one will not work for another. Many episodic Migraineurs can take a medication and abort their attack and continue with their day — most of the time. Some cannot. Chronic Migraine often necessitates taking abortive or rescue medicine more days than not, and we are limited because those medicines can cause enormous problems of their own. Additionally, insurance only gives us a few to take each month and they can cost hundreds of dollars. Some days we have to make the choice not to treat a particular attack, because if we treat that attack, we won’t be able to treat another one that might be worse. Frankly, telling someone to take a pill is hurtful to the chronic Migraineur. We don’t want to be miserable and would take medicine if we could. Next time, why not ask if you can help the Migraineur by turning off lights, down audio or ventilating a smelly room to help with comfort issues.

8. It’s just a headache. Actually, it’s not. Migraine is a systemic disease that affects nearly every part of our bodies, from digestive to circulatory to endocrine, to nervous system. Chronic pain eventually results in central sensitization and allodynia that causes severe pain throughout our entire bodies. If the disease itself isn’t hard enough on the body, the treatments we are forced to take wreak havoc, often causing even further damage and disability. Next time, try asking the Migraineur about their symptoms so you can understand their experience and possibly help them with their next attack.

9. Go get a hobby, it’ll take your mind off the pain. If you break your arm, will getting a hobby make your pain go away? Of course it won’t. Yet a Migraine makes a broken bone look like fun at the circus. While distraction is a recognized and effective way for patients to better control their pain, this is a technique that requires immense concentration and practice much beyond a simple hobby. The worse the pain is, the less the chance that the distraction will be helpful. In either case, distraction will not prevent an attack, nor will it treat or “cure” Migraine. Migraine is a genetic, neurologic disease over which the patient has little to no control. Next time, try asking the patient if there is anything you can do to help distract them from the symptoms of their attack.

10. I read about something new that can cure Migraine or Have you tried this? It worked for a friend of mine. While Migraineurs want to know that our loved ones are thinking about us and want to help us, the chance that you have stumbled upon a miraculous treatment or “cure” that our specialists — or we who have suffered terribly with this disease — have not, is miniscule beyond measure. Everyone bombards us with the same information, and we’ve almost always tried it repeatedly ourselves anyway. We weary of the constant suggestions — not because we don’t appreciate that you care, but that it makes us feel even more helpless and reminds us that we have failed yet again where others have found success. If you truly want to be helpful, ask us what you can do, or what we might need. If you feel compelled to tell us about the latest treatment you read about or heard about, at the very least please preface it with the statement “I know you’ve probably already heard of this, but I wanted to ask just in case…”

11. You just need to get outside for fresh air and exercise more. While exercise is sometimes helpful for Migraineurs when they are not in the midst of an attack, chronic Migraine often means back to back attacks that leave the patient no time to go outside or exercise. Additionally, exercise is frequently a trigger for Migraine attacks, especially in those who are chronic. If we are seeing a specialist, we have most likely also seen a physical therapist that is helping us with needed exercise in ways that will be most effective for our particular situation. Moreover, the sunlight we are exposed to outside may cause physical pain as a part of our attack, or act as a potent trigger for another attack. Exercise and the out of doors is something we all miss, but it is a slippery slope we must navigate with care. It will not “cure” our Migraine disease. Instead, the next time you see us having a good day, offer to take us to the park or go for a walk with us.

12. At least it’s not fatal. Unfortunately, this is not true. Though rare, Migrainous stroke takes the lives of patients every year. Migraine — especially chronic Migraine — has been found to be tightly correlated with other serious or even potentially fatal health issues, and often it is the combination that is deadly. Migraineurs without appropriate treatment are those most at risk of stroke, suicide, and death by related causes such as accidents, depression, accidental overdose, side effects, medical mistakes, etc… Next time, consider acknowledging the struggle of the Migraineur and remind them how much you love and appreciate their presence in your own life.

If you are a Migraineur, are there things loved ones have said to you that have angered you or hurt you? Most of the time our loved ones say things because they are really trying to help us. They don’t understand they are hurting us with their words. Help us them out by adding to this list in the comment section below.

There’s more! Based on community feedback – 18 things not to say to a person with migraine

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385 comments on “The Migraine Dirty Dozen – Things Not to Say to a Chronic Migraineur

  1. Nonster says:

    Where has Ellen gone? I loved reading her articles. She is missed!

  2. Tabby72704 says:

    I have two favorites I have heard over there years…first, I hate it when someone asks you, “Is your headache gone?” “Oh, thanks for reminding me, now that I think about it, no, it’s not gone.”

    The other actually came from a ‘REAL DOCTOR’ — “If you would loose some weight, you wouldn’t have headaches.” “What! You mean my fat body is causing my head to hurt!?” You can’t be serious…

    Sometimes people can be so stupid, it makes you squint!

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  6. I suffered migraines for over forty years, sometimes hoping my life would just end so I could be free of pain. Then a doctor put me on 100mg of aspirin per day for something unrelated to migraines. That was 5 years ago and 5 years of no migraines. I know this may not work for everybody, it did for me so theres a chance it could work for others. Several times I have stopped taking the aspirin just to see what happens and the migraines come back. So if you at your wits end give it a try.

  7. taralane says:

    This is a year later, and you may never read this, but you may have “hemicranial continua” – migraine on one side of the head, as the name implies. From your post I don’t know if your doc is a migraine doc, a neurologist, or regular doc. The tx for hemicrainia continua is usually a med called indomethacin, which is actually just super aspirin. I was diagnosed with this, and although the drug did not work for me, I was told by my headache doc that the test to determine this diagnosis was if indomethacin got rid of the migraine, then the diagnosis was positive. Sounds like this is what you have.

    I suffer from chronic migraine, and like you, am an over 40 year sufferer. I wish aspirin would do it for me! For anyone reading this, going to a migraine specialist doc would be best to get a positive diagnosis before trying aspirin tx on your own. Aspirin can be very damaging to your intestinal system and stomach.

    Glad you found relief at last.

  8. gary says:

    You let a headache keep you from your business? I get migraines also…….do they act like a stroke [I THINK TO MY SELF]…

  9. Corena says:

    How about, “Well you get them so often, you should be used to them by now.”? Yep, those words were uttered by my completely apathetic husband.

  10. kuuipoz says:

    99% of the time it doesn’t matter if I have a migraine, I still go to work. I, like many others, have learned to cope and still do my job. Unfortunately, one of the symptoms I get is when I become “stupid” along with speech impairment. I then have to evaluate whether or not I can actually function in my job and not get anyone hurt. So, with that said, it really burns my hide to get the pause on the other end of the phone when I bite the bullet and call off from work. You know people are thinking “it’s just a headache, what’s the big deal?”.

  11. Dana says:

    What really burns my britches is when someone who gets a ‘migraine’ twice a year tries to compare to the chronic migraines that I have that can last weeks.

  12. candie says:

    Yes, or when someone says;I have a really bad headache and thinks that is all you have. They don’t seem to understand they usually last 5 days and don’t ease up with sleep. I still feel them in my sleep.

  13. doesntmatter says:

    The director of our department at work gets occasional migraines and he has said to me twice now. If someone is at work and says they have a migraine, they don’t have a migraine. There’s no way anyone can work if they have a migraine.
    Yeah well, he gets paid a huge salary. I get paid by the hour and have used up all my sick/vacation pay because of chronic migraines. If I can make it to work, I go, pain or no pain, otherwise I am homeless and jobless.
    Also, hubby expects me to still go places and do things when I have migraines. I have a high pain threshold but not that high. I didn’t start getting migraines until the spring of 2013, now they have become the only friend I have.

  14. rjam71 says:

    I agree! Going to work with a migraine is sometimes the only option we have in order to maintain jobs, homes, etc. The thought process that “someone who is working despite a migraine does not actually have said migraine” is ridiculous! Migraine attacks/pain threshold is different for everyone and being judgmental about others’ pain is certainly not a productive or caring attitude!

  15. Yamihere says:

    Yup, one of the supervisors says he has migraines. He has to take Excedrin Migraine! The other supervisor (a fellow Marine) agreed with me: if Excedrin worked, you didn’t have a migraine. Sup 1 can come to work and leave whenever he likes. He can close and lock the door to his office. He can drink several cups of tea or coffee. He doesn’t miss his lunch.

    None of those options are available to me. When people tell me they get headaches, I ask them if they’ve ever had the “brain freeze” headache. If they say yes, I tell them to imagine that THAT PAIN goes on for hours or days. And some of those hours will be spent on their knees near a toilet. It usually shuts them up.

    Most of the younger ones have experienced a hangover, so the “get” the sensitivity to light and sound. I don’t try to explain the horrible sensitivity to touch.

    I will say that my cat, who has been with me for 11 years and always comes to me when I have a migraine (and sometimes before I realize it) has a supernatural ability to be just where I need him. If I’m having that touch sensitivity he is near enough that I hear him, and feel his body heat but he doesn’t touch me. If I’m not, he lays near me, barely touching, to let me know he’s there. And I don’t know how he does it, but his presence truly helps most migraines. I thank God every day for this cat and his amazing abilities.

  16. madihwa says:

    You people could give a person a migraine with the trouble you put one through getting a new password. And really–it’s weak? So what? This is Fort Knox?

    Anyway–just wanted to say–my pet peeve are these ridiculous excedrin commercials. If a person can take any kind of excedrin and their ‘migraine’ goes away–they DON’T have a migraine!!! They have an ordinary headache! I’m sure this annoys other people who see it too. It trivializes our pain. Oh, just take an excedrin and it will go away! Like heck!

    Wheat can also cause migraines. It’s probably because of everything they’ve done to it in the last 50 years–GMOs and everything.

  17. Luna says:

    “If a person can take any kind of excedrin and their ‘migraine’ goes away–they DON’T have a migraine!!!”
    OTC’s do work for some people and they DO have migraine. OTC’s are all that some people have left to take because nothing else works or the side effects are too horrific. Just because OTC’s don’t work for you doesn’t mean they do not work for someone else. This bias in the migraine community is irritating.

  18. Luna says:

    “You look so good/ You don’t look sick.”
    Have never had anyone say this to me. Would hope that I would have presence of mind to respond “If I looked like I feel you couldn’t handle it.”

  19. Sherri says:

    I just found this website and I’m so glad I did. This is a very good article. Most people in my life do not understand migraine headaches. I have had migraines my entire life, but in 2005 I had a bout of viral meningitis which changed everything. Now I have Migraine Associated Vertigo. The only people that understand what I go through are my husband and my manager and supervisor at work (thank goodness). Everyone else just says the above things to me like, “You just need to get some exercise” or “It’s only a headache, how bad can it be?” Bad, Bad, Bad. And, at the worst, I can get 16 migraines/month. To add to that, I have been through every test and every doctor and every medication – and I have only found two medications that work for me. None of the preventative migraine medications work – I have bad reactions to all of them. At least I have one medication for the dizziness and one for the migraine. I don’t know what I would do without them or the people that support me. Thank you for the article and this website!

  20. Kathryn says:

    I just found this website last weekend and it has been a godsend this week! I’m sitting here now pondering another ER visit….

  21. Chris says:

    I hate being called an “invalid” because I am down so many days. I understand the use of the word ‘invalid’ but I am NOT IN VALID. I am a person with a lot of head pain.

    The funniest thing said to me by a surgeon I worked with was, “Chris, I know how we can get rid of your migraines”, I laughed and said, “Yup, but with my luck I’d have phantom pain”. In case you don’t understand, he jokingly was saying he could amputate my head.

  22. Kathryn says:

    I’m glad at least you had a professional that would laugh with you about your condition instead of preach at you! I got your laugh and thank you I needed that-

  23. Kara says:

    I have been in the presence of other medical professionals that have also helped me laugh during one of my millions of attacks (I was a nurse and had to retire at the ripe old age of 35), so thank you for the 1% of the medical field that actually gets it and is able to ease the tension even if it is just for a moment. 🙂 <3

  24. DinaMay says:

    I’ve heard many of these unhelpful comments over the years. One not listed here is what a number of doctors told me — these migraines will go away once you go thru menopause. That was no comfort when I was in my 20’s and 30’s. Even worse, once I went thru menopause and continued to have migraines, I finally heard a doctor admit menopause is not a cure-all after all. What a bummer! I’d been so looking forward to it!

    But the worst was when I’d have severe migraine and have to go to bed. And my concerned hubby would come in seeking reassurance that I was okay and didn’t need to go to the ER. In the throes of migraine I could not give reassurance. It took a long time to convince him of that.

  25. Kathryn says:

    Your husband is probably related to mine, bless his heart. The question “Are you ok baby?” Is the most sweetest question but also the most hurtful when asked 1,000 times….

  26. SuzieR says:

    I never understand it when people say they go to the ER when they have a bad migraine. When I’m having one of my 3 day migraines I absolutely CANNOT imagine getting down the stairs and into the car – OMG moving my head off the pillow, are you mad? A moving car would kill me! Let me die in my pit of a bed! It’s agony, but nothing will get me to go to the ER with it’s bright lights, beeping machines and idiot doctors and nurses. My husband convinced me to go once, and I’ll never do it again – well, not unless I go to 5 days…

    I just about get to the bathroom to pee, crying from pain. I lie as still as possible, only turning over, extremely carefully, when absolutely necessary because my body is going numb on that side. 3 or 4 days of this torture when my Maxalt doesn’t work. Luckily, it’s only every 6 weeks or so that it fails totally. I usually only get 1 day of migraine pain every 2 weeks these days. But still – how do you people make it to the ER with labour pains in your brain?

  27. Yamihere says:

    The unspoken part of that is: if you’re put into immediate menopause by surgery, the migraines usually get worse.

  28. SMFG says:

    This is such a great topic – goes back a long time and so many comments! Thanks Ellen for writing it.
    I have been a migraine ‘sufferer’ since the age of 15 and that’s nearly 50 years ago!I have just found this website after researching online due to a particularly bad migraine episode in the last few days.
    I have experienced all the 12 comments at one time or another in this time. This post is phenomenal in discussing what non-migrainers say in their attempt to try to be helpful.
    Whilst it’s great to read and share comments on this platform with other migraineurs, I feel this information about migraines is vital to bring awareness of exactly what a migraine is and how it affects the people who get them.Although in todays world, most information is presented via the internet, it would also be very useful to be able to download a poster or leaflet showing these graphics and explanations. I know I could display a poster in various places and know several recipients who could benefit by reading a leaflet. Any chance of Migraine.com producing something????

  29. The Migraine Girl moderator says:

    SMFG:

    Thanks for the comments, and for the poster idea. I’ll pass the suggestion along to the amazing team at the helm of Migraine.com.

    Take care,
    Janet G., “The Migraine Girl”

  30. Kelli says:

    I have an appt at the end of the month with a NP through my neurologists office. I have been to the ER a few times due to migraines that have lasted 5 days straight bc my dr says “if the pain is that bad go to the ER”, I’ve had an ER dr threaten to red flag me as drug abuser. I’ve never abused drugs or alcohol in my life. Why do drs tell to go see another dr if the other dr isn’t going to help??

  31. The Migraine Girl moderator says:

    Some patients have had success taking a letter or prescription from their neurologist/headache specialist to the ER during emergencies. I recommend talking to the NP when you meet with him/her at the end of the month and see about that option. Some Migraine.com readers I’ve heard from have a prescription or letter they carry with them all the time so that they can provide it to the ER or urgent care center. A letter could outline your diagnosis as well as your doctor’s full contact information and recommended care regimen (what prescription drugs to administer to you in the ER and how). Best of luck to you!

    Sincerely,
    Janet G., “The Migraine Girl”

  32. Mindi says:

    I suffer from chronic migraines get them everyday. Once is while I get lucky and have a good day but that doesnt last long before the night is over i have a migraine. My bf says just about everything in this story. He thinks im lazy and tryin to get out of doing things like housework. Tried explaining to him this is a real genetic disease but he dont care just tells me to tell my dr meds r not working n do something about it. Now my 6 yr old daughter is exhibiting signs of migraines, so far she hasnt complained in about a month and half so im hoping that the headaches stay away for her. I have had migraines since i was a kid around her age. Migraines run on my moms side of the family. I have told her pedi well her old one that she was exhibiting the signs of migraines and hes like how would you know I said because I chronic migraines I know the signs I am not stupid. He goes well just give her tylenol or motrin its normal for kids her age to get headache. So yeah i switched drs real quick. She is due for her 7 yr checkup this month because she turns 7 on the 23rd. I am trying to find as much info as i can to prove to ppl I really am sick this is real im not faking it.

  33. The Migraine Girl moderator says:

    Mindi,

    First of all, kudos to you for being such a smart, thoughtful advocate for your daughter and seeking a pediatrician who knows more about this illness. You and I both know–from personal experience and from reading about research–that children most definitely can suffer from migraine disease! As far as your daughter’s health goes, here’s an article you may want to printout and keep on hand: http://migraine.com/migraines-in-children-and-teens/

    I’m concerned about the way your boyfriend is dismissing your everyday reality and doubting you. Many people with chronic migraine have done a LOT to try to lessen the frequency and severity of migraine attacks, and many cannot find relief. Your boyfriend needs to understand that bullying you is counterproductive and may be making you feel even worse (both physically and mentally). I hope you’ll read through the entirety of this article: http://migraine.com/migraine-and-mental-health/managing-migraines-and-relationships/

    While it’s possible your boyfriend is just worried about you and is inappropriately taking out his frustrations with the disease on YOU (misdirected anger is common), it remains true that you deserve to have a partner who trusts you and encourages you rather than puts you down. Will sharing this article with him be helpful? http://migraine.com/migraine-basics/

    Finally, check in with us again when you get a chance and let us know how you’re doing.

    Take care,
    Janet G., “The Migraine Girl”

  34. kateymac says:

    Mindi –

    I also had migraines since age six. They gradually worsened from teen to adulthood, to the point where I’ve had to go on disability. It wasn’t until then that my general neurologist, (whom I’d seen for five years after my g.p. finally referred me out), told me he could do nothing more for me, and informed me that there are neurologists who work ONLY with migraine/headache patients. He explained that “these are neurologists who work ONLY with migraine, and MOSTLY with people as bad off as you are; they know MUCH more than I know about migraine because it’s ALL they do.” I was thirty-six! How could no doctor have given me this recommendation before?

    Seeing a headache/migraine specialist was like a whole new world. I’m not “cured”, but I have a doc who really GETS IT, is understanding, has MUCH more knowledge about preventative meds, other types of treatment, and pain management (without all the fear of narcotics we can otherwise run into), and knows all the newest research. The difference in knowledge was astounding.

    One of the first things he said to me is that doctors will blame the patient when they don’t know how to help you, and that he will NEVER do that; and that he would never stop trying.

    I guess I’m wondering if you would consider seeing a specialist for both yourself and also one that has extra training with kids’ migraines for your daughter. Look for recommendations, as there are duds even among the “best”.

  35. rktgrl says:

    I haven’t worked because of daily migraines since 2000, but just before I gave up my job, one of the triptan commercials was playing a lot and their message was –Have a migraine? Just pop a pill and you’ll be laughing and playing with your kids in no time! So the atmosphere in the workplace was arrogant and condescending. One person even said to me “Why don’t you just go to the doctor?!” As if I hadn’t been to half a dozen or more. The drug companies have the public believing that there is a cure. But if you look at the efficacy of every single triptan on the market, the pain-free percentage in their clinical trials is never even more than 50%, and most of the time is in the 20-30% range. So unless your employer has chronic migraines, they are likely to have a serious misunderstanding propagated by the drug companies!

  36. The Migraine Girl moderator says:

    Well said, rktgrl. Sometimes drug companies’ advertising (especially for so-called “invisible illnesses” such as chronic pain syndromes, migraine disease, arthritis, and even depression) can make non-sufferers think that there’s some cure we’re all willfully refusing to try. It can take so much energy to explain that not every drug works for everyone–and, really, we shouldn’t (and I usually don’t) have to explain that to people who aren’t close to us.

    Hang in there,
    Janet G.
    “The Migraine Girl”

  37. Lue says:

    “You were absent for a HEADACHE?”

    Shut. Up. Absolutely shut. Up. I get this all the time. You don’t think I’d rather be at school than crying at home with a migraine? Hmm? Please, the next time someone is gone from school or work for a headache, just leave them alone. Say something like, “I hope you’re feeling better today!” or something nice like that. It’s a lot nicer to hear that your friends were concerned, instead of having them laugh you off for a “headache”.

  38. Kathryn says:

    I’m so sorry–I don’t think anyone should EVER try to gauge another’s level of pain or diagnosis–concern? Will take that all day–empty words? Back off & yes, please HUSH!

  39. Jules2dl says:

    I was forced to stop working in 2012, and was awarded disability this past March. After 44 years of migraines, I still try to be up and about in the house through a pain level of 7-8. When it gets up to a 9-10, I hit the bed and cuddle my ice pack. Or, if I’m having vertigo and falling, I’m in bed.
    My husband is a proponent of being active, no matter what’s ailing you. He will boast that he was in a cave-in (he’s an operating engineer) and broke his leg in 3 places, and was back operating his machine the next day with his leg in a cast up to his hip.
    He just doesn’t get the whole dark, quiet room with an ice pack protocol. He keeps telling me I’ll get pneumonia. He wants me to be up and walking, doing simple things. I tell him if I’m in bed, its because thats where I need to be, that I can’t be up doing simple things. I will go hungry, thirsty, in need of more ice, put off going to the wash room, just to avoid getting up, because getting up makes the pain so much worse. He still doesn’t get it.

  40. rktgrl says:

    I think, given the warning in #12 above, if you get up to a 9 or 10 you should probably get to a hospital. Unless your idea of a 10 isn’t the “worst possible pain you can imagine.” The whole pain number thing seems like a bad idea to me because people have such different ideas about what a 10 is. I had migraines for 15 years before I discovered the 9-10 territory. I had a really bad one that actually made me throw up, which rarely happens to me. The process made me strain all the muscles in my neck and head which amplified the migraine pain to the point that I thought about calling 911 because I thought surely I was having a stroke or an aneurysm. I finally got it under control enough (by breathing differently) to go to the emergency room, but by then none of their drugs, including morphine helped! Then the gave me a steroid and I eventually was able to fall asleep. They offered to check me in, but they didn’t have a plan. So I left. The whole thing was pretty frightening. I really thought I might die that night. I’m only 58.

  41. Kprice says:

    I know this post is old, but I’m sure others will read it. People say things like, “drink some water, it may help” as I’m trying my best not to A) pass out from the pain or B) Toss my cookies on their shoes. Also a good friend said “No guts no glory-get over it.” Another time someone said “what doesn’t kill you makes you stronger” or just anytime a teacher wouldn’t let me leave class as a kid. One particular teacher refused to let me call my mom to pick me up. The only time I’ve gotten sympathy from a teacher was when I left an all school meeting and a teacher followed me out and said “hey you need to be…you don’t look so good” well thanks! Knew that already! He sent me to the office to be sent home. I was extremely grateful. My dad has no clue-he doesn’t even get headaches. But, my mom gets migraines and he understands that she’s in pain and has learned not to say anything. He is just now getting that I too get migraines. My doc gave me imatrex. It knocks me out. Doesn’t always stop the pain but at least I’m asleep for it. I’m sure others have worse migraines than I do but I can’t imagine it.

  42. Yamihere says:

    WTH? Do they have a secret desire to emulate R.Lee Ermey as a USMC Drill Instructor in “Full Metal Jacket?” (I reference the film for those who haven’t experienced the real deal at MCRD PI or San Diego.)

  43. Jonathan says:

    1. “You are working yourself up, just calm down” my mother used to say as I was puking. Thinking that if I just calmed down I wouldn’t puke. Most of the time actually throwing up helps me feel better and know that it is almost over (usually).

    2. “I understand it’s a medical condition but on paper it looks like you’ve missed a lot of work and that you are not committed to working for this company”

  44. tiphoenix says:

    Well I usually get, “It’s so sunny outside and here you are locked up in your room with all the curtains closed. Anyone will get a headache!” And of course, “you stress out too much. Try enjoying life.”
    When are people going to understand that we do not enjoy this. This is not fun. If migraines could be cured that way,don’t you think we have perhaps already tried that and may be a hundred other things. I have changed my every routine literally…my sleeping habits, my diet…missed out so much of my social life..don’t even start me on my studies and school life! Avoid the sun, avoid the cold, the loud music,no late nights…and yet no..these haven’t helped me at all. Each day for me is either a predome,an attack or a postdrome..don’t remember the last time I was symptom free 🙁
    We never ask for anything else! maybe if you could try to understand what it was being us…or in the least please stop trying to fit in our shoes! Please stop with all the suggestions you think you’re giving us. It really doesn’t work that way!!

  45. Jwelk says:

    I wish my well intended sniper family, friends, and co-workers would have NEVER made comments or suggestion in the following blaming & shaming way:
    “MAYBE IF”…your house was cleaner, you slept more, you slept less, you ate gluten free, you cooked more and healthier food, you meditated longer, you had your allergies tested, went to a shrink to see they are real headaches, you didn’t take things so serious, you take too many pills, you take the wrong pills….and on, and on…Bottom line, most people don’t get it…
    Plus, I believe most people do not want to take the time to understand migraine, unless they are emotionally mature and happen to love and care about you…
    OR it messes up their connected to you life, so they need to figure this out which brings you back to… “MAYBE IF YOU” did this, instead of that…blame crap.

  46. Meli says:

    The bottom line is if you do not suffer from migraines you will never understand. A person cannot truly be competent because they are associating the pain with a headache. Now we know that headaches and migraines are not the same therefore I get really frustrated because they feel like we are overreacting or using this excuse to stay home in bed.

  47. Manda says:

    When people say “Do you need Tylenol/Ibuprofen?” I go NUTS!! They are just trying to help me out but they have no idea that it wouldn’t even make a dent in the pain!!

  48. Chantale says:

    I’m right there with you Manda. Tylenol would be the equivalent of putting a bandaid on a broken arm. I just stay laughing and say that it would probably take me the entire bottle to just put a dent in it.

  49. Vanessa says:

    who else got mad just reading this list? because we’ve heard them all at one time or another and multiple times from people who should “get it” by now!

  50. katy says:

    I have a problem with my boyfriend. Although I love him beyond words, he can be somewhat hurtful. I know he doesn’t completely understand what I go through, but I feel he can be more supportive at times.

    After a trip to an amusement park, where I had been fighting off a migraine for the entire day, the day ended with me hovering over a trashcan and my head throbbing from severe pain. After finally making it to bed, I told him that there was no way I would be able to be intimate. He got upset and made a comment about how I usually ruin the moment with my headaches (something of the nature).

    I was so hurt and had to fight back my tears, not to mention the added emotional stress did not help my migraine.

    I just wish he could be more loving instead of putting intimacy before my health at times.

  51. kanzz says:

    That’s just plain, old-fashioned emotional abuse. Putting his wants before your needs and then piling a heaping scoop of guilt on top of it is low and nasty – and although you were in no shape to deal with it at the time, I hope you deal with it some time when you are.

    YOU didn’t ruin anything! Migraine did… and then HE is trying to ruin your relationship by being an ass.. I hope you’ll remember that. Think long and hard about it. I don’t see it as “somewhat hurtful”. I see it as a deal-breaker. But then, I can look in my rear-view mirror.

  52. Chantale says:

    Then my question to you is…do you really want to stay with a guy like that? You’re head is over a trash can being sick and some time after just expects you to be in the mood? Who would?

    I dated a guy like that, that didn’t care about my migraines just about the fact that I would ruin things/plans by canceling our rescheduling all the time…didn’t last long…Now found a guy that will often think about some of my triggers (i.e. time to eat, make sure no 3D movies,) before my family (parents) do. That will take time off work to being me top the clinic for shots when needed. And make sure I have my meds with me when we leave on an extended trip. And my man didn’t know a thing about migraines before me. He decided to go and research it. (Going on 11 years now!)

    So just goes to say Vanessa..seems like you need to talk to him and he either need to learn or you might need to consider being selfish and take care of yourself first.

  53. The Migraine Girl moderator says:

    Katy,

    I’m sorry your boyfriend has hurt you from time to time regarding your migraine. The truth is hard to accept: very few people without migraine disease have any good clue about what it actually feels like to deal with migraine (or its threat) frequently.

    As much as others are calling for you to leave your partner, I know that sort of feedback won’t be very helpful to you if you two are very much in love. I also know that people who love each other can hurt each other deeply through harsh words and misunderstandings. Let’s face it: lots of folks (and, in my experience, a lot of those times those folks are guys) have trouble verbalizing their emotions and end up getting mad at the wrong enemy. In this case, your boyfriend spoke harshly to you when really it *could* be that he is really upset to see the person he loves be in so much pain. Maybe.

    What can you do to help him understand better? If you can communicate with him about what it’s like for you to live with migraine and talk about what ways you can enjoy time spent together during your migraine-free and migraine times, maybe there’s hope for a more positive path going forward.

    Here are some articles you might find insightful. Let us know how you’re doing.

    1. Spouses & Migraine Disease
    http://migraine.com/blog/spouses-and-migraine-disease/

    2. To share with your boyfriend: Top Ten Things You Should Know If Your Spouse Has Chronic Migraine
    http://migraine.com/blog/top-ten-things-know-spouse-chronic-migraine/

    3. Chronic Migraine’s Enormous Impact on Marriage and Parenting
    http://migraine.com/blog/chronic-migraines-impact-marriage-parenting/

    4. Managing Migraines and Relationships: http://migraine.com/migraine-and-mental-health/managing-migraines-and-relationships/

    Take care,
    Janet G.
    “The Migraine Girl”

  54. Alli says:

    I’m currently job searching after graduating & my boyfriend is always like “what are you going to do when you get a REAL job? you’re not going to be able to be sick with migraines all the time”

    if only I could help it…

  55. Valerie M says:

    This comment came from my boss when I advised once that I couldn’t come in to work; was my second day off due to migraine. “That’s one long headache!”

    In anger I wished for a moment that he would have a “headache” like we experience, just once.

    The ignorance of people when it comes to this disease amazes me, even after all these years.

  56. Vanessa says:

    they will never know unless they experience it themselves and sometimes wishing it for them might actually help them to become more compassionate understanding people

  57. Varvara says:

    I just recently went to an appointment with my neurologist (who has been a godsend!). I’ve been going to him for about 5 years now and he’s always been great (although, he’s not very informative. I’ve had to learn about this condition for myself. I suppose most doctors feel it is up to the patient to learn about it on their own; however, when you can’t even read, concentrate or move, it would be nice to have education integrated into the treatment protocol). This last appointment, though, I think he felt I should better (because I had a very bad three-week migraine that was hormonally-related, so he was convinced that the past 5 years were peri-menopausal migraines and that now I’m in true menopause, I should be fine. I told him I’m still having migraines but they have changed somewhat. I don’t have the electrified view of the world all the time; however, I have still have debilitating migraines that literally drop me to the ground – particularly before a storm. His response was that I look the best I have since he’s seen me. It just about devastated me. I thought he, of all persons, understood. At the time of the appointment, I was having a horrible migraine and could barely move. I didn’t even have the energy to tell him I’m not fine. I was in such a fog, that my only thought was ‘isn’t it nice that I look good?” with a hearty dose of sarcasm. I keep telling myself that his intentions were most likely to get me out of the depressive funk I was in. But, it felt like my only lifeline just gave up on me and doesn’t want to be my doctor, anymore. I wonder if the doctors themselves just get frustrated because they can only do so much.

  58. Wtchao says:

    My pet peeve is when people say “the only thing that works for me is Excedrin Migraine.” I want to say “if that works for you then you don’t have migraines!!”

  59. Corrie says:

    I totally, completely, 100% agree!!!! Drives me crazy but of course I don’t say anything, as bad as I want to explain to them what a real migraine feels like. Same with my friends who say they have chronic migraines and take no preventative medication, use no abortive medication, and just “wait it out”. I would not even be close to a functional human being without those. Maybe I’m some kind of migraine snob, but I just want people to understand how bad they are!!

  60. Vanessa says:

    check the ingredients, they are the same as extra strength excedrin.

  61. Manda says:

    Excedrin Migraine is all that helps me!! I have been diagnosed with tension headaches, cluster headaches, and chronic migraines(though not severe) and I am on Amitriptyline, B12, Magnesium, and I still find myself needing the Excedrin in order to get any relief at all! I have been prescribed Sumatriptan as a relief outlet but the side effects were the worst I’ve experienced in any education so I do not take it! Excedrin works the most ideally for decreasing my pain, so I am unsure what you are talking about! Everyone is different and its more of a pain relief for many on the side of taking a prescription/etc.

  62. kanzz says:

    Excedrin Migraine. Grr. Might help in the very early stages, I suppose. I really don’t know because I refuse to buy it. I have a big problem with the scam they’re pulling on the public.

    Ingredients:
    Acetaminophen 250mg, Aspirin 250mg, Caffeine 65mg

    So, yes… same exact ingredients as their “Excedrin Extra Strength”, but usually at a higher price. Really?

    And, you’re paying for the name. And packaging. And advertising. Again, Grr.

    If you’re going to use this compound, buy the generic. Show them you don’t want to fund their scam.

  63. Jules2dl says:

    I met a woman recently on a day when we both had migraines. She told me she takes 6 to 8 Excedrin Migraine tabs every day. I told her that she is in rebound (or medication overuse headache), and that Excedrin was the worst possible thing she should be taking. I also told her its the same thing as regular excedrin. She had me going in circles for probably 20 minutes before I gave up on her. She’d say its the only thing that helps her headaches. I’d say yes, because as soon as one dose wears off her body wants another dose, it’s almost like an addiction, and she needs to get off of them completely. Then she’d say but its the only thing that helps her headaches….. she just couldn’t get that the excedrin was causing her headaches, not curing them. She seemed reasonably intelligent otherwise, and the funny thing was, her hubby was a doctor (cardiologist).

  64. The Migraine Girl moderator says:

    Many people (especially those with episodic, not chronic, migraine) do find relief with Excedrin Migraine/Extra Strength Excedrin. Doctors’ opinions on these drugs’ merits in treating migraine episodes vary, but it is possible to have a “legitimate” migraine attack that is made better with Excedrin Migraine.

    If you have migraines or headaches that interrupt your quality of life and/or occur more than once a month, it’s definitely worth talking to your healthcare provider about migraine-specific treatment.

    Take care,
    Janet G.
    “The Migraine Girl”

  65. Diane says:

    The comments that bother me the most are actually from a friend of mine that also suffers from Migraine headaches. She has two school aged children. When I tell her that my headaches are so bad I am totally non-functional she always says that hers are that bad too, but with a husband and two kids she has to function so she just goes on with her day and life goes on. She also takes no preventatives or abortives. It makes me feel like she’s implying that I’m a wimp and she can work through anything. It’s frustrating coming from a best friend.

  66. Ellen Schnakenberg author says:

    Perhaps reminding her that Migraine is a spectrum disease, much like autism. What one person feels can be very different from another. Some of the worst information and worse comments come from those who experience Migraines themselves. They assume your experience must be the same as theirs, which is a mistake.

    ~Ellen Schnakenberg

  67. Corrie says:

    This would drive me mad. I’m not even sure if I could be friends with someone like that.

  68. katy says:

    It almost sounds as if she doesn’t truly suffer from migraines. I know that if I stopped taking my meds, my migraines would be much worse (even with meds, my migraines are horrible).

  69. Diane says:

    I do know that she suffers from Migraine. I’ve seen her when she has a headache, and I have had some that I can function with too, but not often. We just don’t discuss the subject much anymore.

  70. dkrt says:

    I’ve tried to tough it out a few times and ended up vomiting and almost passing out. Probably would have passed out if I didn’t realize after vomiting that willing myself to function was not going to work and I laid down, finally. I seriously doubt your friend has the same symptoms or severity that you do if that’s her response. Her remarks are ignorant, IMO.

  71. rktgrl says:

    I don’t think she really has migraines. If she does all that work, she is obviously not disabled by them. How does one cook, drive, carry kids around, clean house while there head is in the toilet, or would be if they tried to do all that. I met a nurse in the emergency room while I was in there for an intractable migraine after days of it, and she said the same thing. She had severe migraines and took nothing at all, just kept working. I think people who say this either don’t know what a migraine is or they are not being honest for some reason.

  72. kuuipoz says:

    @ rktgrl – I have had migraines for most of my life. When my kids were young, I still drove them around, cleaned, cooked, etc. most of the time, while I was in the middle of an episode. You do what you have to do. I don’t know about other people, but I have what I consider different levels of migraine. I have one right now, in fact. This one isn’t debilitating right now, thankfully, but it could change at any time. Not all migraines are debilitating every time I get one, it doesn’t mean I don’t have them.

  73. oliviaruth says:

    My step-mom keeps telling me that they’re probably not migraines just because I’m sensitive to chemicals. It’s pissing me off, but I’m not going to argue because I can take care of myself.

  74. Ellen Schnakenberg author says:

    Can you explain what a trigger is to her? Perhaps those chemicals are triggering your Migraine attacks?

    ~Ellen Schnakenberg

  75. rktgrl says:

    Chemical sensitivity IS a migraine TRIGGER for many people! It’s sort of like when you mention that your neck hurts just before a migraine, some know-it-alls conclude you JUST have a tension headache. NO, the tension headache triggers the migraine.

  76. Danielle says:

    When I mention that I’m getting a migraine, I get “Well, tell it to stop!” from certain members of my family. Thank you, oh wise one. You’ve solved all my problems. Why didn’t *I* think of that?

  77. katy says:

    I’ve had that said to me before. If those words could only stop a migraine, I’d be tattooing it on my forehead. It would be like me telling a person with a broken leg to not be broken… It doesn’t work!

  78. Malaikak says:

    “Just drink some water”

    No, just leave me alone!!! My whole body is aching and I’m on the edge of vomiting. Water is not going to cure me!!

  79. Being told its something else because you don’t respond to treatment: Ive been informed “Its sinusistis, trigmenial neuralgia, clenching my jaw/gringing my teeth/psychosomatic. I dont care what the label is just help me feel better PLEASE….

  80. oliviaruth says:

    Exactly! my step-mom is like “you know, it’s probably not migraines since you’re so allergic to all this stuff”

  81. Ellen Schnakenberg author says:

    So many potential triggers I see here. Sometimes informing people about our Migraines is more helpful if we include deeper details, such as what a trigger is and how they can make us more susceptible to a Migraine attack.

    ~Ellen Schnakenberg

  82. kuuipoz says:

    I always have to laugh when I get told to just find what triggers it and then remove it from my life. Really?? Let’s see, wind, perfume, noise, cleaners, chemicals, light, allergies, foods, the list goes on and on. The only way to remove all of the triggers from my life would be to shoot myself in the head.

  83. Krissy says:

    This is the first time I have found this site, because I haven’t been having a computer. I am in tears because there are other people out there who actually understand how I feel on an almost daily basis. I now have my own computer and I will be on here lots I hope.

  84. Vanessa says:

    My mum constantly asks how my migraines are. As though suddenly they are going to get better. When I say I’ve had 15 migraines in the previous month and 8 headaches there is no empathy or understanding( and she has occasional migraine herself). I try to carry on and try to run the house and run my own business,with a very supportive husband, but sometimes it would be lovely to have my mum say wow and you’ve done all this while coping with that number of migraine!
    Sorry I just needed a rant.

  85. Yes Vanessa, I get exactly the same. rant away x

  86. Kathryn says:

    Well, my Mom is sitting here with me on a daily basis ( I originally moved in to take care of her and the last 3 years, yes, well, that has NOT been the case so we take care of each other as best we can ) and she is hearing me read all these comments and she turns down the tv for noise level, went to the store for a mask, ear plugs, ginger ale, her and my 20 yr old son makes sure I get to and from the Dr for a shot and has sat with me in the ER for hours on end. When they can’t, my husband does. While that sounds great, she also sits and cries that she can’t do a thing about my migraines….she tries to understand and admits that she’s frustrated because she wants to make it go away….She understands when I can’t brush my hair because my head hurts, and she will eat leftovers because I can’t get in the kitchen to cook and will provide wet dishcloths for my head…..she said that she could tell some of ya’ll’s family a thing or two about support for a migraine patient, me and my sister both have them and my Dad died from complications of stroke/stomach cancer so she knows a thing or two about being a caregiver and she says that migraine people need caregivers too and are overlooked in their diagnosis….since when did my 74 year old Mom get her PHD in Migraines? Life Happens and I love her!! Rant away Vanessa my Mom says Wow for you!!

  87. Harriette says:

    “I found, it will go away in time.”

    I was in tears and had just had spinal surgery, called my neurosurgeon, who told me to go to the ER. The doctor there actually said that to me. Stating doctors discretion in treatment. He chose not to treat. Obviously, he never had one or had never been around anyone with one. I wanted to a certain part of his anatomy like a slinky at this point.

  88. caladenia says:

    oh this is magic to read this. i am so lucky a medication for bipolar II seems to have relieved me of migraines, and i am ecstatic. there are times when i still become migrainous, and this page is a wonder to find!!

  89. Wtchao says:

    Which medication? Would love to find something that works like that.

  90. Kanani says:

    As with anyone with migraine, I completely relate to this post. Things other well intended people have said, “get better and make this one your last one” yeah, I wish I had that power!! That statement eludes I have complete control over the migraine frequency which we know is not true and part of the helplessness we feel. Or how about, “do this, take that to CURE your migraine” again, showing ignorance since there is no cure. “You shouldn’t do this or you should do that..” I just want to reply, really??? I didn’t know you were an expert and know more than the experts or me researching it and experiencing it all the time!!!

  91. Yes, extremely frustrating. People seem to lose sympathy/empathy the more it goes on. I am called “sicknote” in work & the stress of having to go off sick/returning triggers more pain.

  92. Bunny says:

    Great article…. we all are actually used to with all this stuff.. those are blessed with no migraine.. have to say anything, they have the right (freak).. as per me.. just ignore them… http://www.migraineheadacherelief.org.uk

  93. Have you tried Cefaly ? I have bought so many supposed treatments that I am very reluctant now because when they don’t help, I become even more low & dis-heartened….

  94. Shanadoodles says:

    Great article, I was a abdominal migraine suffer as a child which later developed into chronic migraines in the head, at a pretty young ages, and still occasionally getting abdominal migraines to, and I remember all sorts of stuff said to me when I was back at school, beginning with when I was around 5 with abdominal migraines,

    “She’s not sick she is just faking it to miss school” and that was our family doctor..
    “She’s to young for migraines” i still get this I’m 19 now
    “You just need to go to the toilet” every dinner lady seemed to think they new my bowl movements better than me. :L

    And as I got older and developed the chronic migraines everyone seemed to have a opinion, because all these 14-15 year olds where clearly qualified doctors -.- . The most upsetting things I have heard from people was
    “It might be a brain tumour” or
    ” it’s all in your mind you’re imagining it all, you need to pull yourself together” again this was by a A&E doctor after I had palpitations, chest & stomach pain with a migraine, funnily enough she was a mind reader to after she just looked at me without even checking me over before sending me on my way. :/
    “Everything is so easy for you, you don’t even have to try” gah, no it’s a struggle to even get out of bed in the mornings let alone get to do work and live a normal life, but the difference is I want to be a normal teenager, so if I’m coming across that way, fantastic, but please don’t try and make out it’s so easy for me because it’s a daily struggle of forcing myself to drag my butt outta bed to live life as if I’m not in almost constant chronic pain.
    or when someone who are meant to be a friend see how because of the amount of pain I’m in, I’m rarely questioned if I had to leave the room ect, decides,
    “ohh I could skip school so easily if I have a”migraine” which is simply insulting to any true suffer of migraines.
    The winner of the most ridiculous thing I have heard
    “You only get migraines because you play with your hair to much!” ..o.o..

    I dunno if anyone else has experienced negative responses to saying you have chronic migraines, just because of your age or the way you look?

    Because I seem to get more often than not from people who don’t know me take one look at me, with my dark hair, dark make up and dark clothing and then look at my age and decide I’m just an attention seeker, which I most defiantly am not, I’d love to never have another migraine for the rest of my life, but that’s not gonna happen. Oh well staying strong c:

  95. Annoyingly true! It was the same for me as a child/teenager & now im almost 50 I get “it’s a funny time of life for you” etc.. “your’e on the change” I am still having regular periods but peeps can be so dismissive. Being off work “with a migraine” is a big no no for me & I work in the NHS!
    Healing thoughts sent to you, fellow sufferer x

  96. Cluster Girl says:

    Great article. I have chronic cluster headaches (left eye turns red and swells almost shut) for over 20 years. People always think I have pink eye. It is hard to explain CH, as it is so rare. Sometimes I say I have been “street fighting…and you should see the other person.” At least it gets them to laugh. Then I can say “naw…really it’s something called a cluster h…”

    Seriously, though, my vision in my left eye has deteriorated over all this time. No other explanation but the cluster. People outside don’t realize the physical damage migraines really do…

  97. smita says:

    God bless all of us ! Pray fr better health and life everyday , thats fr sure we can do. And it works ! Art of living meditation and relaxation technique helped me a lot.
    My migraine dramatically healed after practicing ily sudarshan kriya. And i count on it for lifetime, as medicine shows other side effects. Art of living is my lifeline.

  98. Marie says:

    I love knitting and reading. As a seminary student I must read out of necessity. Migraines make reading difficult and so it’s easy to fall behind. Writing is near impossible when all I feel is the ice pick in back of my right eye. Oddly enough, once the pain level gets down to manageable, I can do some simple knitting (no lace, no following charts or difficult patterns) and that is relaxing. A neck massage is also helpful; it doesn’t eliminate the pain, but gives me a few minutes respite from the discomfort. Im fortunate too that most of the time, with 50 mg Imitrex and 0.5 mg of Zanax (to offset the side effects of the Imitrex) and and hour of down time in the dark will allow me to continue with the day.

  99. oliviaruth says:

    Gosh, I miss knitting so much. I’ve had so many migraines lately. I don’t even want to knit (or do anything) with a migraine.

  100. Martica says:

    A loved one recently told me “Don’t baby it, don’t lay in bed just get up and get on with your day.” While she has never experienced a migraine and I know she didn’t mean it in a bad way, it did hurt my feelings because when I have a migraine there is nothing more that I would like than to be able to just get out of bed and get on with my day. She asked what do I do when I get a migraine at work and I said I just stick it out and take medicine. Sometimes I need to go through the battle during work because I need my job and I love my job and wouldn’t want to lose it. People need to be more considerate towards us especially those that have never experienced these awful headaches and don’t really understand what we go through. Just be compassionate and support us don’t try to tell us how we should act towards an attack or what we should do when we feel horrible.

  101. Kanani says:

    Totally agree!! Remember migraine is not a headache. Headache is a painful symptom of migraine. I think that’s where others misunderstand us. They think it’s “just a headache”. They have no idea how sick we feel, even when we tell them.

  102. Kathy says:

    the best one I’ve heard so far was just brush your teeth when you start getting a headache. It was all I could do not to laugh out loud!

  103. Jules2dl says:

    OMG!! Now that’s one I’ve never heard! That is too funny! ROFL!!!!

  104. Lseibert07 says:

    number 8,10, 11, 12 are probably the ones that just set me off and its not really my loved ones but people that find out I have migraines, especially at school when I was in high school I was bullied because everyone believed that it was all in my head and that I was faking it just to get out of school and for attention. My parents understand because my dad has them not as bad as I do but they have a deeper understanding but other people that I let in my life do this to me and in the end I just give up on having friends because they just can’t handle me being sick all the time…

  105. Kanani says:

    Me too buddy, me too!!

  106. DeeBee65 says:

    These comments are all so familiar. Suffering from migraines can be so difficult because people can’t actually SEE what is wrong with us. It’s like they think, “well, she’s not limping, I don’t see any bruises, she’s not wearing a cast,” etc. Migraine is an invisible disease, and as such it is hard for a non-sufferer to really grasp what migraine sufferers go through.

    I got my first migraine when I was 12, and I remember passing out from the pain and coming to on the kitchen floor. My mother and brother were kneeling next to me and I was already crying from the pain as I regained consciousness, only to ask for a pail because I was going to be sick. And thus started my 37 year relationship with migraines. In those early years there was very little done to treat migraine. Many days were spent lying in a dark room and vomiting through the pain until finally falling into the exhausted sleep of recovery. A kind neighbor spoke to me about coping with migraine pain, as she not only suffered chronically from them but had attempted suicide twice from the pain.

    I am thankful for my current access to preventive medication and rescue medication and the occasional occipital nerve block when the damn migraine won’t stop for five days. We have come far in treatments, but still suffer not only from this painful and debilitating disease but also from continued misunderstanding and disregard from people on the outside. I use those opportunities to educate the uninformed, and have shared information with folks in my office so they have an understanding of what migraines are and how they impact the lives of those who suffer from them. I am fortunate to have a husband who takes one look at me and says “I can tell your head is banging. Tell me what I can do for you,” and does exactly as I need, including not waking me once I fall into hard-earned sleep.

    Being on a site like this and knowing I’m not alone is a comfort to me and I hope to others as well.

    Oh, and don’t forget: Drink more water! Eat less sugar! Sleep more! Sleep less! When the pains starts, just get up and stretch and you will feel better! Stand/sit up straighter! And my favorite — Dunk your head in a pot of ice-cold water and the migraine will be shocked right out of you!

  107. PHennessey says:

    I swear it is all I can do sometimes not to throat-punch people who tell me that I must have migraines because I don’t drink enough water.

  108. ajmg says:

    I am gratefully NOT a migraine victim . I found this article very informative and interesting. I have Type 1 diabetes, neuropathic chronic pain and many other symptoms caused by this silents disease. I am sympathetic and understanding to all of the comments which I have read here. People like us, we suffer in silence on a daily basis because it is exhausting to explain to “caring” others the needs of our disease treatments and the effects of our disease on all aspects of our lives. I wish for all of you that there may some day be a blanket cure for yoyr devastating conditions. If I could relieve your pain for even just a few hours, take it as my own, I would do that for you.. all of you are brave and strong and deserve more quality of life..blessings and prayers for each and everyone of you. Thank you Ellen for helping me understand how to compassionate and helpful to those I may know that suffer from migraines.

  109. Kathryn says:

    I’ll take your comments and say back at ya…I have had migraines since I was 12 and live with a insulin dependent [husband], a heart patient [mother] and an adhd [son]. Chronic in our household is rampant and I appreciate your opened eyes and heart….Blessings back to you!

  110. Momma Doe says:

    I’ve just recollected a few more things that have been said to me over the years to add to the list in my previous comment.They are below.
    It’s been interesting to reflect on unhelpful things people have said. It really pinpoints what the myths about migraine revolve around. I have definitely grown in my ability to be compassionate with people’s ignorance. Myths and stigma abound with migraine disease. I myself have had to work to undo my own misunderstandings in order to truly honor myself and what it means to live with this disease.Good luck to all who have to deal with this disease and the stigma that compounds the difficulty of it.

    I guess you really didn’t want to come. (to an event I was incredibly sad to miss)

    Look, the letters of MIGRAINE spell “ I M ANGERI !”

    It’s probably because of the way you breathe.

    Oh, I just had a counseling client who I helped cure of migraines with therapy.

    Proper breathing can cure anything.

    Do you wear your sunglasses inside just to look cool?

    ‘A Course in Miracles’ says ‘Sickness is but another name for sin.”

  111. Kanani says:

    Unbelievable! Ugh…..sigh

  112. Momma Doe says:

    Looking back at this post of mine from a year ago with a new comment to add.
    “A really smart psychoanalyst told me once, ‘you know, migraine = perfectionist’. Said by a friend.
    Someday, this illness will be better understood and respected.

  113. Momma Doe says:

    Here are some additions to the list.

    You should drink more water.

    Are you still dealing with that?

    You should pray.

    Well, you don’t seem like the kind of person who gets migraines.

    I wouldn’t have thought you would get migraines.

    Have you thought about how it might be because you really just want some time to yourself?

    You should see a psychoanalyst.

    You were probably sexually abused and need to heal that.

    You must have a lot of repressed anger.

    Have you ever thought it might be about repressed feelings.

    What is the secret payoff of your illness?

    You must have a type A personality.

    If you’d just relax you wouldn’t have a problem.

    People who focus on themselves too much make their situation worse. (Said by a counselor when I am trying to get support for myself in sharing what having this disease is like for me.)

    It must be your karma, maybe you were Hitler in your last life. Ha ha.

    You should balance your hormones. (Said loudly by checkout person I hardly know in line at the food co-op when I have a migraine)

    It must be nice to stay home all the time.

    You must not really want to heal.

  114. Katie M. Golden moderator says:

    Momma Doe- I’ve also had someone say I must have been Hitler in a past life! People are crazy!
    Sometimes I want to say “You would never say any of this to someone who has cancer, would you? But yet, we both have a disease!”

  115. Kanani says:

    The first 3 I get as I’ve heard those too, but as the list proceeded I felt anger!! Ugh, why must we get blamed??? Why is it our fault??? Don’t they know we would do anything to avoid migraine? Migraine disrupt our lives??? And we’ve probably tried some of the stupid suggestions “just in case” it might work?!?!? Just sayin’…….

  116. Ctharp says:

    I’ve had all of these comments said to me several times throughout the 15 years I’ve been having migraines. I’ve seriously considered printing it out and mailing it with Christmas cards to family/friends. I know that seems a bit extreme and mean but I get so tired of people randomly suggesting things. I know they mean well but I’m over it. My doctor has even told me that I’m the one patient he can’t help since I’ve been on everything and this is the second doctor I’ve seen. Losing hope.

  117. Kanani says:

    Don’t lose hope:) I can only tell you what has helped me, but as you know, everyone is different. I got the heck out of Western medicine and away from all those drugs!! I identified my triggers which took a long time and I’m still identifying new ones. I visit a chiropractor practicing the Blair method(no cracking involved), I get acupressure and acupuncture, visit a nutritionist (Paleo diet minus the eggs) and Eastern medicine doctor, will begin work with a restorative exercise trainer, insisted on work accommodations (especially to remove those darn fluorescent lights!!), and do all the other stuff most of us do like sleep schedule, water, eat throughout the day, etc. it’s not a cure of course but I went from daily episodes leaving me non functional and having to go on medical leave for 6 months to back at work full-time and having about 3 episodes a month. Great improvement! Took 40 years but that’s because migraine is so misunderstood and there are so many variants. Appreciative of my team 🙂 More than I ever got from preventive drugs and clueless medical drs. Point of the story, don’t lose hope, keep searching for what helps you, it’s out there……somewhere.

  118. Yvette says:

    I still get headaches, but no more migraines!! I moved to Oregon in 2001 and had 3-4 migraines in the first 2 years here, but I haven’t had a migraine now in 12 years. They just seemed to drop from my medical situation. I am grateful! I still get some bad headaches, but not the kind where an “ice pick to the temple” would feel better than the migraine. I have had bosses talk to me because I took a day off for a ‘headache’. Trying to explain a migraine to someone who’s never had a headache is useless. I had a great job, and the best thing was that the boss also lost work time with migraines. He was the best! When I called in with a migraine, I usually spoke very softly and he immediately knew what my problem was and told me to take the time needed to feel better.
    I have a friend who tells me that she had a migraine “this morning” but is now feeling better – I want to slap her. I’ve tried explaining migraines to her, but it’s like blowing in the wind. There have probably been days when I should have gone to the ER but had no one to drive me and as you know, you can’t see, much less drive when you are in the throes of an attack. Thank you for the Dirty Dozen, I can so relate to everyone’s comments even though I don’t have migraines anymore.

  119. Ucwatuget says:

    I’ve suffered for years with migraines and have been told that having one for an entire morning or all night was incorrect and that it wasn’t a migraine then from friends who also suffer. However I have cluster type and while I wish to ram my head into a wall or blow it off during the cluster,
    It often does go away within a few hours.
    The unfortunate part of this is that it will return soon. The next day, that night,
    You just never know. I can go months without migraines only to suffer from 10 in 6 days. We are all unique.

  120. Pam says:

    I have a (former) friend who, whenever the subject of migraines would come up, would say to me, “you don’t have them anymore, do you”. To which I always responded, “yes, I do, at least once a week”. I have been a migraine sufferer since my mid 20’s. I am now in my mid 60’s. And as someone else said, I choose to suffer in silence. I do not announce it every time I have one. The medication I take works 99.9% of the time. The other .1% of the time, I head for bed and suffer for 3 days until it’s gone. I have at least one per week, sometimes more. And yes, I’ve heard suggestions for every remedy ever invented. Some people have even told me about how they had to take their daughters to the ER to get a shot for a migraine they had. If I ran to the ER everytime I had a migraine, I’d be destitute.

  121. SANG says:

    When my symptoms first started, I didn’t have a headache, just severe dizziness and sudden exhaustion. This was terrible to deal with all at once, as I’m a competitive athlete.
    Shortly after my illness set in, my husband accused me of being “on drugs”. This was the biggest, hurtful blow I’ve ever had to deal with.
    After almost 4 years since those initial symptoms, and dozens of medical tests & doctors later, I was officially diagnosed 3 months ago. Finally time to hopefully learn to manage this monster in my body.

  122. Ellen Schnakenberg author says:

    SANG – *OUCH* Hang in there. I hope you’ll be able to find good management soon!

    ~Ellen

  123. Merri says:

    “When DON’T you have a headache?”
    It’s comments like this that make me choose to suffer in silence.

  124. Kanani says:

    Ouch!!! That hurts me just reading it 🙁

  125. I really really hate being asked if I’ve tried going “wheat and gluten free.” I get asked that A LOT especially when I’m in the middle of a bad attack at work. I’ve had migraines since I was 10. (My mom wouldn’t even believe me at that age. It was tough growing up like that.) I’ve definitely tried a million different “cures” and I don’t need people suggesting new ones. Especially when they never are a migraine sufferer themselves. It’s always “a friend of mine tried xyz, and it worked for them!”

  126. Lynar42 says:

    If I had a dollar for every time someone told me I should eat gluten free, I would be rolling in it! Its so hard for people to realize that its a disease!

  127. I have had migraines since I was in my 20’s. In the beginning I only experienced them when I had a bad sinus infection. Over time I kept getting them more and more. And always on my right side causing me to violently throw up. Then for a year I was in a dry climate and the migraines disappeared. They started again when I moved back to a humid climate, but they weren’t the same. The migraines were now on my left side. Gone was the vomiting but it was replaced by difficulty in speech and focusing. Fortuneatly they did not happen often, but eventually that changed.

    They were occuring almost daily. My ENT found had a deviated septum in one nasal passage and a polyp in thye other, I also had some much mucus in my sinuses that I needed surgery, After the surgery I was headache free for a few months, but it did not last. That was when I was sent to a neurologist.
    I was given a medicine that got rid of them, but the side effect made me an emotional mess and effected my speech even more. Finally after a year I was taking medicine that helped tremendously.
    Recently, I have had some eye issues and the migraines and started again. And this time it includes occular migraines and even more sensitivity to light than I had before.
    And if bad weather or a hurricane is near, my head feels like it will explode.
    When you have had them as long as I have, you try to find ways to help with the pain and side affects of migraines. For me I keep my bedroom as cool as possible and keep the lights low whenver possible. One way that I have been able to stop the vomiting and the pain is to place ice bag on my chest and on the part of my head that is experiencing the pain.
    I think the most difficult thing is that I have a high threshold for pain. So I basically ignore it until it is unbarable and that makes it even hard to ease. I have discovered that mine can be triggered by heat (I get overheated easily), not drinking enough water, certain chemicals ( I had to stop painting with oils), illness, working long hours without a break and stressful situations.

    I think the hardest thing for me is that I used to be able to take my hyperness and use it to my best advantage. With then migraines its seems to turn it into anxiety.

  128. Ellen Schnakenberg author says:

    Frances,

    I think the most important thing I see here, is that you are trying to be stoic and ignore the pain instead of treating it. Research has shown that it is super important to treat a Migraine as soon as you know it’s coming. Waiting can actually help lead to the chronification of the problem, which is something you really want to try to avoid. The only other problem is, if you are having attacks very frequently, it’s really important how you treat them so you can avoid Medication Overuse Headache. http://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/

    Are you seeing a Migraine and Headache specialist? That might be something for you to look into. Most patients who go this route find it a life-changing experience. Here is a link that will lead you to links where you can discover if your doctor is specially trained in headache and Migraine, and where to find the nearest specialist: http://migraine.com/blog/looking-for-a-migraine-specialist/

    ~Ellen

  129. I am the mom of a teenage migraineur. I personally don’t suffer from them. But even I find that I don’t want to hear the “dirty dozen” when friends, school personnel, and others try to be helpful. My daughter and I have been in this for 3 years now, yes we, because although she is living the pain, I am her protector. I have to read her daily to help her to try to have a life. She lives with chronic daily headaches and migraine. She has not gone for one whole day without pain for three years. She is learning, we are learning. I am really proud of her. She so wants to have a life beyond this, so I know she participates in things with the pain. We have tried so many suggestions and so many medications. So there are days I want to say “shut up” to those helpful friends who say “have you tried the whatever diet” or some other suggestion. I hold my tongue, knowing they are just trying to be helpful.

  130. Ellen Schnakenberg author says:

    Marybeth, I know it’s so hard. Personally, I do still try to thank those that are trying to be helpful. There is a difference though. There are those who you can tell are so very concerned, and those that just really want to tell us to *shut up* and quit complaining. You can see they just want to say “See here, there is this great thing that works if you’d just try it.” A totally different reaction in my book. The sad thing is, most of us will try even the most bogus potential treatment simply because it’s something we haven’t tried yet. I do it myself. *sigh*

    ~Ellen

  131. Jules2dl says:

    Marybeth:
    Your daughter is very blessed to have her mother in her corner, looking out for her. You are wise to watch, listen, and keep your own counsel. Let your daughter come to you if she wants to talk things over, and let her make her own decisions, as long as those things she wants to try harbor no dangers. She needs to be active in her healthcare decisions, but while she is still a teenager, she needs to have your support as well.
    As far as participating in activities while she is in pain, she will learn what her limits are as far as that goes. I was 11 when my migraines started, and I wanted a life too. There came a point when I learned that if my head felt such and such a way, I’d better stop or I’d end up in the emergency room. I still go by that rule today. I can’t describe it, it’s just so many little nuances of the pain, and the other symptoms that go along with it that let me know Danger! Danger! Stop Now!
    I know how hard it is for you to see your daughter suffer. My own mom never had a headache a day in her life. Sometimes she’d come home and see me pounding my head against the wall and just hold me and rock me, and we’d both cry. She would so much have rather had the migraines herself than watch me have them. I thank God that my own kids have them only occasionally.
    God bless you for being the mom your daughter needs you to be

  132. I am curious as to how old you were when you had your first “real” migraine”? I am 39 and was told that I had my first this spring, with aura. It was the bizarre aura in my right eye only that drove me to the doctor immediately. Its a military hospital so I was able to get a very fast look from the ophthalmologist between his surgeries & he told me what it was, by then the aura was gone and the headache had started. I have a history of what used to be called Pseudotumor Cerebri or Benign Intracranial Hypertension. Now I think its just called Idiopathic Intracranial Hypertension & I nearly went blind.Basically, for unknown reasons, my cerebral-spinal fluid does not drain properly & it would back up into my head. I had to have optic nerve surgery to relieve the pressure.
    I found it odd that I could make it nearly 40 years, 29 years of menstrual cycles & 2 pregnancies & surgical births without migraines then BAM! I’ve always had headaches but migraines are almost as bad as the pseudotumor ones. They began to be very regular & I couldn’t identify my triggers easily. I get botox every 3 months & have maxalt for the headache. Last month, I got neck injections and 2 days later I got another aura migraine. For those with auras, do you get them every time you get a migraine? I’ve had numerous migraines but only 2 auras, one per eye so far.
    I also have 2 rather rare genetic disorders, Hereditary Angioedema (missing a component in the blood) & Ehlers Danlos Syndrome (connective tissue disorder due to faulty collagen. You know the circus guys who can stretch their skin out, bend themselves into a box, that friend that is ‘double jointed’? thats us)
    Boy that was a lot just to ask you how old you were when you started getting migraines!! lol I just found this site today & will be bookmarking

  133. Ellen Schnakenberg author says:

    Hi Lisa, I’m glad you’ve joined us!

    All Migraines are *real* so that’s a difficult question to answer. My first one-sided headache with aura happened when I was a senior in high school. My next “bonified” attack was a couple years later when I was six months pregnant. That aura lasted an entire day. As a young child, I had lots of headaches though. I didn’t think I had that many, but my friends now tell me differently as they remember me missing out on lots of things because I was “sick” for a day.

    Although I haven’t had an “official” EDS diagnosis (my rheumy called it Ehler’s Danlos but did virtually no testing), I too have hypermobility. My skin is mostly okay (except when I was pregnant I split and bled) and it is mostly my joints that are freaky flexible. As a kid I was one of those who would do a backbend and then lay on my chest to wave hello to my friends behind me. There’s so much damage to my joints now that isn’t an option, but surgery did help tighten my shoulders. My lower body is still very loose, even at age 49.

    There is a connection between hypermobility types and Migraine. Have you had an LP done? Apparently we can also have issues with this test as well, and to prove the point I ended up needing a blood patch after five days suffering due to a CSF leak.

    Something to remember about Migraine, is that we have a genetic predisposition, but that doesn’t mean we will ever suffer an attack. It’s said “The genes are the gun, but something has to pull the trigger.” Just because we have a gun doesn’t mean it will ever go off. For some, it happens much later than others. Some suffer early. My son was a baby when he began having Migraines. It was awful.

    When the first Migraine hits after age 50, it is a very good reason to see a doctor. A first Migraine when you’re older can sometimes mean something else is afoot.

    ~Ellen

  134. I have only just begun to deal with migraines, maybe less than 7 months now. Related to a diagnoses of optical neuritis just given so to have my sister tell me to try yoga, stay away from soda (which I do not even drink) is annoying. I do not even have a primary care doctor or health insurance to deal with it yet. Just shut up right now.

  135. Sarah Smith says:

    What I want to hear from ANYONE during a migraine is absolutly nothing.Any sound adds to my pain. So unless you’re saying “here is your medicine” please save even helpful words for later.

  136. Ellen, thank you for this article. Migraines became an issue for me when I entered my forties–I turn 49 in December. Prior to full-blown migraines, I got what I believed to be sinus headaches. They were easily controlled with Allegra-D and Advil. Now my doctor is trying to find a preventative that works; and I constantly fight with my insurance company to provide me with enough migraine meds.

    My migraines have evolved into monthly to bi-monthly occurances. I assume this means they are affected my hormones as my body matures into menopause.

    My mother keeps trying to give me advice. She says she suffered from migraines, so she knows what she’s talking about. She recommended I cut out the sodium in my diet. Apparently, she cut out sodium and her migraines went away. There are two major problems with the advice she gives me on migraines. 1. I’ve only seen her with two migraines ever; therefore, I doubt she actually had migraines. 2. She doesn’t know what she’s talking about; so she needs to stop trying to help!

    I love my Mom. But OMG, she makes my migraines worse.

  137. Thank you for posting this! I have had (what we always thought were “sinus headaches”) since I was about 13-14. They only intensified over the years and now I get all the symptoms in their severity. I have even thought at times of calling 911 because of the pain. So many things you point out in here hit the nail on the head. The only thing for me is if I have a migraine I don’t want you to talk to me, look at me, or even touch me because it just intensifies everything. After it is over there are still residual effects that make my head hurt for up to an entire day. If you have never had a “Grand mal” migraine before you have no right to judge what anyone is going through. I saw an article on the Mayo website that shows what the “aura” looks like so well for anyone who is not sure how to describe it. Thank you again!!!

  138. Jim Gillaspy says:

    I am male and have had migraine attacks (diagnosed) for the last fifty years, the first when I was about twenty. The one thing I would disagree with, and it may be just a personal quirk — so much about migraine seems to be — when I was in my thirties and training for a marathon, going out for a run when I first felt the symptoms (blurring vision, usually) would return me to normal. Granted, the first couple of miles were painful, especially in full sunlight, but by mile five, my head would be clear and I would have no “migraine hangover” the next day. Unfortunately, a five mile run is no longer an option.

  139. Hi, Ellen!
    This is a GOD-SEND!!!! I may print it out and hand it out to everyone who means well but starts giving me all those “This worked for me” posts!!!! (I’m on Facebook, and received the SAME post about a “migraine smoothie” from no less than 8 of my friends!!!!)

    My migraines are a little different, as they’re cause purely by weather fronts. (I’m basically a “human barometer”.) Naturally, living in Michigan, as the seasons change, particularly summer into fall, I find I can hardly cope with all the fronts that go through! I also get a lot of “Why don’t you pull up stakes and move to Arizona?” (No offense to the people of Arizona, but I’ve been there – it’s TOO FREAKING HOT!!!)

    Another thing that a lot of folks who’ve never had migraines don’t realize is that, depending on the length and the intensity of the migraine, we need at least a day to a week (in my case!) to RECUPERATE!!!! We can’t just ‘pick up where we left off’, because we’re too EXHAUSTED from hurting 24/7!!!

    It’s nice to know, though, that I’m not alone in hurting!
    Keep on keeping on!!!!
    Randy Weiser

  140. Ellen Schnakenberg author says:

    Randy, you hit the proverbial nail on the head 🙂 Thank you for sharing!

  141. Actually I still got migraines in Arizona because they still get weather changes. Especially in the Summer (July-Sept) when they have “monsoons.” 🙁

  142. Susan Carson says:

    Hi Ellen, I loved this article you shared it contains some excellent advise and information. I have had darn near everything in the book said to me over the years, but let me share my personal favorite remark. It came from my Director or Care at work. You may have guessed we are both nurses and well informed in regard to pain and disease. She was giving me a hard time regarding lost hours at work due to migraine episodes. (Like you really want a nurse on migraine meds looking after your loved one.)
    She suggested that I needed to go to my doctor and get this condition “fixed”. She gave me a one month deadline to accomplish this task. I left her office totally flabbergasted. Then I got very angry. I have suffered from migraine’s since I was 17 years old and I am now 60. I have been under a Dr.s care all of this time. I guess I should have asked my neurologist to just “fix” them for me years ago. What colossal stupidity. I did go to my Dr. as advised, but as a “fix” was not going to happen for me in one month I instead had him write a letter on my behalf. It explained the obvious situation and my lack of control as to when I get a migraine. He basically told her to back off and stop stressing me out. What a great guy. I am really lucky to have him as my Dr. The whole incident was ridiculous. As a professional you would think she would be more informed and if nothing else have a little sympathy. I have found over the years that most people just don’t get it. They don’t realise how bad it can get. Even if I could I would never try and do my job when I am suffering from a migraine. How irresponsible would that be on my part. My migrains have worsened over time and I often feel that there is not light at the end of this tunnel.
    I have incredible nausea with my migraines and just the thought of vomiting makes me feel like weeping. If I actually do vomit it feels like I’m having an aneurysim explode in my head and God forbid I find I need a trip to the ER. It’s like a trip into hell with all the bright lights and noise. OMG. Just shoot me please. My migraines are chronic in nature and have many triggers. Some of my migraines last for days at a time and are very debilitating. My family often comment that I am a human barometer and more accurate than the weather man.
    Over the years I have come to learn what works for me and what does not. My family have been really great. They all know if I am in my bedroom with the door closed and lights off they better leave me alone.
    My only advise to other sufferers is to nip it in the bud if you can. Take your preventative meds as prescribed and use your rescue meds sooner rather that later. Don’t let the migraine get ahead of you. It’s not worth the grief that it causes. I try to keep positive and never lose my sense of humour with life and its curve balls. Sometimes its really hard but just keep on going.
    I must say I loved the comment someone made about getting a new bra and a hair cut might help. LOL. And they say that kids say the darndest things. Well some adults are pretty childish or maybe just plain stupid.

  143. Ellen Schnakenberg author says:

    Susan, I’m so sorry for your experience. It’s so disappointing when those who should know better are the ones that obviously understand the least. I’m not sure why they feel so free to say and do the things they do that are so destructive to patients. I think most of the time they think they are being constructive. I guess this goes to prove just how misunderstood this disease really is, and emphasizes how important it is to spread the truth. When we allow this kind of misinformation to be spread, I’m afraid we become a part of the problem too.

    Hang in there, and thank you for reiterating the importance of getting control of those Migraines asap. I hate the idea that patients become chronic because they have simply neglected to treat their condition properly.

    ~Ellen

  144. kanzz says:

    I feel your pain. Also a nurse. 60+. Also a human barometer, although that is not the only cause of my migraines. I once had a boss (not a nurse) who gave me a deadline to get myself “fixed”. I just told him I wasn’t a dog, he didn’t know what he was talking about, and unless he wanted to find himself in legal action, he needed to back off. In the long run, that probably wasn’t the best idea, but we didn’t see eye-to-eye on many things.
    Needless to say, I don’t work there any more. I was gratified when I heard that he’d been fired a year later.

  145. Thank you Ellen for this article. I really identify with all of these but in particular the one about exercise. I am blessed that David understands but a recent close “friend” shocked me when she suggested this would decrease my migraine frequency. It does get soooo tiring trying to explain to others about this awful neurologic condition.

  146. Ellen Schnakenberg author says:

    Michele – It’s actually been shown to be true that regular exercise may – for some patients – help with frequency of Migraine attacks. However, some of us are quite disabled already, and exercise can also be a trigger. The real trick is figuring out how much to do is okay, and where that proverbial line in the sand is drawn that we step over and end up in an attack.

    Today is my first day in physical therapy. I’ve flunked it so many times before, so this time we’re doing it in the pool. I don’t know if it will be helpful or cause more problems. I’ll write about it soon. However, for me, I can’t just sit here getting weaker and weaker and worse and worse. If there’s the smallest smidgen of a chance it might help me, I’m in. It’s scary though. I am not well controlled right now, and am Migraining daily. It could also backfire terribly. I’ll let you know how it goes 😉

    In the meantime, here is a link about Migraine and exercise that might actually be helpful to you – from a Migraineur’s perspective: http://migraine.com/blog/exercise-and-migraine-part-1-what-it-is-and-what-it-isnt/

    Here is a piece written by Dr Marcus on Exercise and Migraine: http://migraine.com/blog/exercise-and-migraine/

  147. Blossom M says:

    “Maybe you should just cut your hair. All that weight must be giving you a headache.” I did try this. It didn’t work.

  148. Ellen Schnakenberg author says:

    Blossom M – I get the same thing all the time, LOL! A friend of mine was told she just needed a better bra. Oy, we should have a thread in the forum for such silliness!

    ~Ellen

  149. kanzz says:

    Yep. I heard it for years. Once had hair past my knees. Now it’s barely past my shoulders. Everybody thinks they’re a doc.

  150. Great information…I was a long time migraine sufferer…from childhood…my father had them…they also run on the maternal side of the family…I know what my main triggers are, and since moving to the PNW, I have had very few. Mine are caused by dramatic changes in barometric pressure…Imagine how horribly I suffered when I lived in Texas…Red Wine, some cheeses…lack of sleep…those are all triggers…I have lost days of work…and life…due to migraines…have actually ruptured blood vessels in my eyes from the vomiting…I have a daughter that also suffers from migraine attacks…I really enjoyed the article…

  151. Ellen Schnakenberg author says:

    Bobbie – Thank you so much for taking the time to comment! My son, like you, would rupture blood vessels in his eyes, but also his face. They would look like freckles from a distance until you got close and realized they were purpley-red. That’s only happened to me once thank goodness.

    Oh, the things we endure…

    ((Hugs))

    ~Ellen

  152. kanzz says:

    They’re called petechiae. Not uncommon. I get them almost every time I vomit.
    http://www.mayoclinic.org/symptoms/petechiae/basics/causes/sym-20050724

  153. That was a beautiful post. I have felt suicidal, I have suffered at least two strokes, and feel like my problems could be leading to my death.

  154. Ellen Schnakenberg author says:

    michael, Thank you so much for your comment.

    Living with Migraine is a challenge. If you ever feel that you are in a crisis situation, please seek help https://migraine.com/blog/migraine-crisis-help/

  155. Lynar42 says:

    Michael, you are not alone. Chronic depression is always lurking when there is chronic pain. I suffer from both as well as fibromyalgia. Its hard but always remember there is help if you need it.
    Bless you.

  156. Dizzy1i says:

    Great article.

    Having heard most of these, I learned to restrict any comment on my condition to only very close friends and family.

    #12 should also include the possibly of auto accidents caused by the rapid onset of a migraine while in fast congested traffic. (Fortunately, my drugs now prevent such fast onsets, but I did have several really scary incidents.)

  157. I had to pull over the car one time and get out and I just collapsed as it came on so fast. I was lucky I was in Queens and only going about 20 mph. If I was on the highway, who knows what would have happened?

  158. Toni Chavez says:

    That is so true about the auto accidents! I recently did swipe a parked car. I underestimated how rapid my migraine had progressed. Luckily I was only going 15 mph, though it was a curve in my neighborhood and I really thought I had missed and turned enough with the road. No damage to the parked vehicle and only superficial to mine, but needless to say everyone treated me like I was a liar and just stupid. I couldn’t even write out a statement when I was taken in for a hit and run as I didn’t process that I actually did swipe the vehicle for several minutes and was already off post when I could safely pull over. They did call the MPs so they were waiting for me. Never have I felt so stupid or humiliated in my life. Very scary to think if it had happened in faster traffic or to a car with people in either of our vehicles.

  159. Pj says:

    I think the one that is the most frustrating came from a neurologist. “There is nothing I can do for you go to someone else” do they think we just make these symptoms up for the fun of it? I started with migraines 34 years ago in college and they have progressively gotten worse and more often. How do you find someone that listens and try’s to help?

  160. Dizzy1i says:

    Fortunately, the first neurologist I saw believed in and treated vestibular migraines (VM’s) (these have almost no pain but present as extreme vertigo with certain loss of stomach contents). After 2-3 months we found a successful drug protocol.

    But then, she went on maternity leave and I had to work with another well-respected neurologist in her practice. He didn’t “believe in” vestibular migraines and he hinted that I was malingering. Fortunately, my first neurologist soon returned.

    If you are lucky enough to have insurance that allows you to switch doctors freely, start seeing other neurologists. Ask around too. My neurologist has a reputation for successfully treating VM’s. Maybe you can learn of a doctor who can handle intransigeant cases, as yours seems to be.

  161. ginnymat says:

    Try to locate a headache clinic or a neurologist that specializes in headaches. That changed my life. The first neurologist I went to was convinced I must have MS because I had a few small lesions on my MRI, but paid no attention to my vestibular symptoms. My PCP referred me to a physical therapist who specializes in headaches and vertigo; his approach is mind body skills which helped. I persisted in insisting on seeing another neurologist and my PCP referred me to the headache clinic. It took 2 1/2 months to get in but it was worth it; the specialist knew exactly what was going on and I started on a preventive med. It turns out I’ve had migraines most of my life which were never diagnosed since pain is not my main symptom. Be persistent and find the right specialist.

  162. Cece Yuhas says:

    Yes Ellen thank you, I will read it, but I already knew that you can get rebound headaches from too much of your pain medication, that is why I only take it for three days on, and three days off, I didn’t know it was because the brain pathway change though. Thank you for the info. I also hate #3 “The Pain can’t be That bad.” —-IF “THEY” only “KNEW” how bad it can get!

  163. Cece Yuhas says:

    I was diagnosed with Migraines when I was 4 years old, when I was 5 I started taking my Mom’s Narcotics, by the time I was 7, I had my own prescription of Fiornal, I am now 49, and am going to try Botox for Migraines, just went through 8 straight days a few weeks ago. Rain and my cycle always sets them off. I take Fiornal with Codine 3 days on, then E.R. for Morphine, then 3 days with Tylenol and Suffer, before going back to Fional with Codine. I am making a copy of your 12 Tings NOT to say to a migrainer.

  164. Ellen Schnakenberg author says:

    Cece – I hope this was helpful, or will be helpful for you. I’m so sorry you have suffered so. I hope you feel comfortable that at least you are not alone in your struggles <3

    I would be remiss if I didn't mention MOH to you though. This happens when the pain pathways in our brains change and medications begin to make our situations worse instead of better. It is highly under-diagnosed and contributes to the chronification of Migraine, so a very important subject to Migraine patients. https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/

  165. Ann B says:

    This probably falls under #10, but the big one for me is diet. “You just need to stop eating chocolate,” when I eat it less than once a month. “Oh, you should be vegan–it cures everything.” I actually had a FB “friend” post that migraine is all diet-related, adding “lol.” The “lol” made me mad. Nothing about migraine is “lol.” I have been on two elimination diets…once eating nothing but chicken, carrots and pears for three solid months. No chocolate, no citrus, no cheese, no MSG, no caffeine…you get the picture. I can confidently say diet makes no difference with the number or severity of my migraines. But do I need to explain all of that to every well-meaning person who comes along? Even when I try, they can be very tenacious about their beliefs. Thanks for the opportunity to rant! And keep up the great posts!

  166. Karen Rudd says:

    Wow..where to being. Get outside and get the fresh air is one I hate the most. When I’m in the middle of a bad attack (my diagnosis is chronic, intractable migraine”, even fresh air makes me sick. I can smell the ozone in the air. My sense of smell is super-heightened, and every and any smell can caused uncontrollable vomiting. Second – I get those every day, they’re sinus headaches. NO, they aren’t. I have migraines, and I have allergies that result in sinus headaches. I have different medications for each, because they are not the same thing. I worked every day of the week with migraines that don’t stop. Some are worse, but all are excruciating, no matter what I do. I would rather give birth a few more times than deal with this. I know they are well intended and meant to help, but your mother, brother, sister’s migraine is not the same as mine. What truly bugs me, treatment wise, is Excedrin marketing a pill for migraine sufferers that has the EXACT same ingredients as regular Excedrin, but at a much higher price. I know it’s hard to do, but read the labels. Don’t give in to drug companies that want to wring every dollar out of hands while touting their “new’ medicine. I’m also bothered by the sudden push of anti-depressants for pain relief. I am not depressed, I am in pain, and while some depressed people do experience pain with their depression, I think it’s a dangerous thing to mess with your emotional well being while you are in horrendous pain.

  167. iwg13 says:

    My niece was completely debilitated with migraines. In and out of the emergency room. 1 year ago her Dr. sent her to the University of Pennsylvania, to receive
    Ketamine by way of an IV. It took about a week. Her life changed enormously… For the better. Some say it wears off. Hers is still helping.

    It is very unlikely that the vast majority would prescribe this. There are, however, many trials going on. It appears to be a real possibility, in the future.

    Btw, she said it was a difficult thing to go thru, but she would do it again.

  168. iwg13 says:

    You forgot… It’s probably JUST a sinus headache.

    Just get up, take some decongestants and move around.

  169. Nancy Harris Bonk moderator says:

    That’s a good one, iwg13!

    If we could “just” take that decongestant and make a migraine go away, wouldn’t we already be doing it?

  170. Miryenne says:

    Wonderful Article!! I especially liked …well.. All of them, as I’ve heard all of them SO Many times – Even from healthcare workers and doctors who should know better (those are the saddest times of all). Love this.

  171. miaabernathy says:

    Awesome article! #10 is my favorite. I hear this all the time. New friends, old friends, family mebers, co-wokers, they all have the ‘cure’ for me. Nothing is more frustrating than to get back to work after 3 torturous days (or 1, or 2) and have a co-worker tell me “You know, my friend had migraines until she…started juicing, had her tooth pulled, had sinus surgery, etc. You should try that!”
    I know they are trying to be helpful, but don’t they think I’ve desperately tried everything?! And what it sounds like to me is – “You could fix this yourself if you put a little effort in”.
    Thanks for making it clear I’m not alone 🙂

  172. Sue Marie says:

    Thank you so much for this article! I have heard many of these things over the years. One thing not on the list, “you’re just using a headache as an excuse not to___” fill in the blank. In my case I was told my mother in law believed I was faking to get out of a family function as I was vomiting in the bathroom.

  173. Ellen Schnakenberg author says:

    This is a sad one indeed. So wish we could get rid of all the misinformation, myths and stigma!

  174. All I can say is thank you and you are so right!!!

  175. Ellen Schnakenberg author says:

    Thank you for taking the time to comment Dana! I love the feedback 😀

  176. Janet says:

    Ellen, as always your articles andbinsightbare right on the money. I always send your articles to my husband , our children and the pastors at church who,have prayed for me for years and years. My husband still I feels helpless but is my biggest advocate. My children are tired of me and my pastors keep praying. Our move is almost complete to Atlanta…awaiting closing a fad the arrival of our belongings. I hope to find support around my new home. Keep writing ..you always make me feel less alone.
    Janet jones las to atl

  177. Ellen Schnakenberg author says:

    Janet, I’m glad to hear about your move. Please keep in touch and let me know how everything is going. Maybe you’ll have some luck finding a good specialist that can help you!

  178. deafsinger says:

    Excellent article . I only WISH that we had the information available today back 24 years ago when I 1st sought treatment for chronic Daily migraines. Thank God I found the Neurologist who finally identified daily migraines along with muscular pain & TMJ pain. I know what pain is. I also know the varying degrees of pain. I am well aware of others who have no idea what the debilitating pain is like day after day & how easily a headache can be triggered. Not just a simple headache , but one that will be intense for 12 hours or more & then will hopefully subside. With numerous drug allergies & sensitivities I was limited with prescription choices. I would try each new proposed med 1 time to see if I would have a reaction . My reactions were to the point of my lips swelling , my tongue swelling so large that it would be impossible to close my teeth or lips , both eyes swelling shut & overall edema of the face. Things I HATED to Hear include: (1) It’s just mind over matter , just do not allow yourself to give in to a headache . (2) You are just too sensitive. (3) You need to get outside & enjoy it , & your headaches will stop. (4) Now I know that your pain cannot be all that bad , so stop carrying on . (5) you’ve been to the Dr & they didn’t find a physical cause so there is nothing wrong with you. (6) You spend too much time thinking about having a migraine.
    (7) I used to like being around you & we had so much fun but now you’ve changed & you just don’t care about our friendship . *** The Biggie ** (8) You take too many prescriptions, you are hooked on pain pills . You are hooked on drugs .. you don’t have pain any more , you just go to get the meds because you are addicted . You need to go into a treatment program & get you off of those drugs . ** the above is the worst thing you can say to a person suffering from the physical & emotional pain of migraines. And they also say it to others & rumors begin spreading that you are a drug addict. Well I’ll say this … During & after 48 hours of pain & nausea , if you looked at me , yes I would look like walking death & my color would be bad & I would be dizzy , my vision blurred , so I might walk funny ..all can make a person look like what others think a drug addict looks like.

  179. deafsinger says:

    Note to add : I am so Thankful that since menopause, my migraines are rare. I still have them if I eat certain foods or am around certain triggers like perfumes or scents.

  180. Ellen Schnakenberg author says:

    deafsinger: I am so very glad that menopause has helped your Migraine situation. The odds are against this being the case for most of us, but it is encouraging to hear of at least one person who found some relief!

  181. Jeannine says:

    “Oh, I thought those were gone!” In an insinuating tone. It was Friday and the aura had just started. Because I had taken the Relpax 7 times in the past two weeks, I was not allowed to take another for 15 days. I asked them why they thought they were gone.
    They said because I hadn’t had one for a month. I then explained she didn’t know because I had not complained, that I had taken all my meds allowed for the month in two weeks. That when she saw me ‘napping’ in my car, I was working thru an aura. She said it was weird because i never look sick.

    This has gone on all my life.

    I remember my first aura migraine. I was 14 and went to my teacher ” I am scared. I see colors and feel like throwing up. I can’t see and feel so woozy. Help me”.

    Her reply was ” You’re on that acid drug Jeannine. Such trash. You’ll amount to nothing!”

    The school nurse kicked me off campus to walk the mile home on 92 degree weather. I remember waking up in someone’s yard as they nudged me with their toe.

    It wasn’t until my 20s that I found out what I had.

  182. Nancy Harris Bonk moderator says:

    Now that’s pretty disturbing coming from a “medical” professional.

  183. I have had migraines for going on 30years. One year it was constant maybe with a bit of relief when I could go to sleep. I was diagnosed with Fibromyalgia in 2003 and continue to have headaches and pain through out. They are both very exhausting and there are days I cant open curtains or listen to the radio next to bed except on 3 or 4 for loudness. I take 19pills a day and thank God when I dont wake up with a headache. What gets me is sometimes is people will say did you take something for it? If they took as much medications as I do they would be able to handle it. Thanks for writing the article.

  184. they wouldnt be able to handle all of the medications that I take in a day. Not it 24hours thats just pills that I take for a period of 7am- 10pm (15hours) and extra when nothing else works.

  185. llvt says:

    My headaches began when I started puberty. I would wake up in the middle of the night with the most horrific pain, like someone taking a sledgehammer to my temple. My parents took me to the doctor who said I had a sinus infection and prescribed me an antibiotic. This continued for 3 or 4 months, with different antibiotics. My father finally got sick of this and took me to the city for a work up. The docs immediately took me off the antibiotics because I had developed a fever as a reaction to them. I was having headaches every day. They did an EEG (all that was available then, I’m 53) and told me I had some wave patterns consistent with seizures. I took Dilantin for 3 years and felt better. After that I suffered through 3 or 4 headaches a month. By the time I got engaged, I had my worst ever migraine. My fiance said “geez, they teach us about migraines in med school but I had no idea they were that bad!”. Now he knows to lie me flat in bed, darken the room, no noise and absolutely no movement of the head. I am not a candidate for Imitrex because I take an anti-depressant. I did take Inderal which worked, but made my BP so low I couldn’t tolerate it. Once when driving the kids in the car, my vision suddenly blacked out on the outer half of each visual field. No pain. I pulled over, called a friend who is an eye doctor who said I was having an ocular migraine. He said wait 15 minutes and if it doesn’t go away call someone to drive you home. After all these years I have figured out my triggers and avoid them like the plague. Lack of sleep, MSG, flourescent lights (a given), loud sustained noise, hot sunny conditions without a hat or sunglasses and hunger. This has cut down on the number of headaches quite a bit. My son, when he was 6 was playing T ball on a bright summer day and started throwing up in the outfield. He came to the bleachers screaming of a headache. Took him to the ped who said do you have migraines in your family? Yes, me and my sister. Well your son has them too. I said What?! He said oh yes, they can be genetic. He’s 22 now and still gets them, but is learning his triggers too. This is an awful, debilitating condition and since it leaves no outward scars or bodily changes, I don’t think people believe it is as bad as it is. Oh, and I drink plenty of liquids! I also notice that I have personality changes the next day; just don’t feel like myself.

  186. jgerving says:

    “You should drink more water.” That is the comment I receive more than any other…but I drink more water than most people I know anyway. It is always a non-migraine sufferer and apparently it is just that easy. My neurologist just doesn’t know yet…shh! It drives my crazy!!!!

  187. Emma81 says:

    This brings a lump to my throat. My boyfriend says all these things and more, even accuses me of being a hypercondriac and of using my migraines as a “get out of jail free card”. I tried to get him to read this but he isn’t interested as he is under the illusion that I will be magically cured when I go into hospital for drug therapy next month.

  188. Jeannine says:

    Yup! My ex used to say that too. ((( hugs))

  189. I used to frequently get migraines the first two days of any vacation. First day was full-on migraine (lie down in a dark quiet room, no eating), the second day was recovery (exhausted, could walk around slowly outside a bit). My wife would go through the entire list above and accuse me of getting the migraine just to wreck her vacation. Not very helpful. At least she said I looked green.

  190. I love this article. thank you so much.

  191. briannaduffy says:

    I love the animated faces for this slideshow. Made me chuckle a little bit. The only one I disliked was number ten. I watched the slideshow first then read the original article. After I read the article I agreed with why it was listed. But I always like to hear about treatments. There is always a chance I haven’t heard about it yet. I remain hopeful that someday I will find something that will work for me. Now ask me again next week and I’ll probably tell ya there is nothing out there. My hope definitely waxes and wanes.

  192. harv says:

    A very very good article Ellen! I’ll be sharing this with family and friends! Thank You!! What’s hurt about as much as anything over the years is- “if you can’t go to work/church/or do so and so or whatever, but you can go here or there or do this or that”. I try to tell them that every day is different, but it seems they don’t want to believe that and stick with how they think it is without ever actually experiencing it.

  193. Jeannine says:

    I can’t do certain things because perfume or fake smells are a major trigger. So I get ” you can go to Walmart, but not the mall!!?” Yup!

  194. chipdooley says:

    what really pisses me off is being called a drug addict because i take roxicodone, morphine, valuum and smoke pot legally along with other meds. The worst is when people smoke pot(illegally) do meth, coke, pop pill and drink alcohol. They want to buy my drugs or steel them and I’m the addict. So I don’t have any friends anymore. It’s just me and my kids and I am fine with that. But you call them an addict they get all bent out of shape and say i only do it on the weekends and can stop anytime I want too. Then I say quite for 1 month and I will not call you and addict like you are. I am sick and tierd of people saying stuff to me so it’s me and my kids and they understand more than anyone and their 7,8,14, how i love them

  195. I read this article with tears in my eyes! You put into words the things that I’ve wanted to say! Since my husband is not on FB, I plan to print this off. I’ve had an especially bad week. We’ve already been to the ER and I don’t feel any better. Of course, to anyone that asks, I don’t dare say that!

  196. Jerri Ross Stamps says:

    I recently lost a good friend of mine (by my choice) because he angered and hurt me so badly by telling me that he didn’t think my neurologist knew what he was doing since I was still suffering. It really hurt. I can’t describe it to my husband, and my friend doesn’t ‘get’ why that hurt me. This is such a misunderstood disease!

  197. All he was doing was trying to help. he cares about you greatly and does not want to see you suffer. All he suggested is that maybe a different doctor could help. a misunderstood comment that was said with good intensions is nothing to discontinue a friendship over. just saying………..

  198. Jerri Ross Stamps says:

    The people in my life that would take time out to understand what this is about really do care about me. If others just tell me to “eat better” and “your doctors don’t know what they’re doing” don’t fully understand that this is a DISEASE and I’m held captive to the whims and follies to the ones who control it. (Meaning: my brain). I do understand that some comments are said to be helpful, but when someone that has known me for a long time says something spiteful in haste, then, yeah, it hurts. I post individual clips from Migraine.com hoping that the people in my life would read it and gain understanding. The others, who speculate, and second guess my doctors and even ME, are the ones who hurt me. I have a team of several doctors and we’re all up to date on the latest information and medications, studies, etc. that there are out there about migraines.

  199. Jeannine says:

    I had a friend that reacted the same way but worse. She is very intelligent, highly educated, and has a chronic illness. Yet she gave me the nastiest look and sent me a link to Cleveland clinic advising me to get a ‘good’ Neuro because this is ridiculous! All while rolling her eyes like I am a faker and liar.

    I actually went to Cleveland clinic and the Neuro said “why are you here?”
    She was nice but said I was getting great care and she had nothing miraculous to add to my treatment.

    I went back to the ‘friend’ and gave her the report. Decided she is no friend and now just work with her.

  200. I think I have heard every single one of these. People who don’t have migraine, just can’t understand what happens to your whole body, you’re whole system. I’m in my 40’s now and I’ve gone through phases with my migraines since I was a VERY young child. There have been times in my life where I was sick 24, 25, 26 days a month and other times when I’ve only been affected 4-5 days a month. When I was younger, migraine related stroke was a very real concern of mine. There are many invisible illnesses out there. A little more empathy in the mouth filter would be a fine thing. I can’t count the number of times I have wished for the ability to transfer what I feel into someone else….just for a few minutes… until they throw up or fall, writhing onto the floor pulling their hair out… just saying…Migraine sucks.

  201. Rachael Bryant-Neth says:

    This is a good one.

  202. I have had several employers say “Take a pill and come in”. Oh, please! If I could come in after taking a pill, I would have already been there! I took my pill three hours before I called you!

  203. Chandee Payne says:

    ugh i hate how people don’t understand!!! They really have no idea! There are many people that no pills help and there are times when even the pill that usually helps doesn’t!

  204. Andrea Richards says:

    I have heard them all too! I have had them so long it actually broke up my relationship. That was the hardest thing for me. Everyone tries to “make me feel better”…they still come,like the one I had today and it was the worst one in a long time. I had over 15 a month….I get half of them now..but..no matter what I do, excercise,maintain my diet,stress…they still are just as intense when I get one…. and last just as long. There is no cure..

  205. Jeannine says:

    I am recently divorced after 27 years and afraid to start dating. How do you explain during dinner that you have 10 minutes to get home before your entire field of vision is gone?

  206. Carol Hayes says:

    Yes to all of the above. After 35 years, one would think I have already tried “Excedrin Migraine” but, nah, never crossed my mind….

  207. If there was a “like” button here, I would have clicked it 🙂

  208. Jeannine says:

    Haha. Or that maybe I should have an MRI. How about 4 MRIs, 2 CTs, EEGs, 3MRAs and so many blood panels I can’t count em?

  209. I am always hearing did you try this, this works for my wife or husband, yes we have tried it , it doesn’t work. I have had people tell me I think your husband is just going to have to get over it. If it was that simple.

  210. Elizabeth Brown says:

    This was very good. It makes me feel better about how I’ve felt in the past. Have your kids gotten headaches? Mine have here and there. I’m scared that I’ve passed it onto them.

  211. My oldest has had headaches, but he also has asthma and we took him off of singulair and his headaches have stop pretty much. My husband has worried about that to that he passed it on to Joseph.

  212. You get so tired of people telling you what to try, and I know they are just trying to help. but I get tired of having to go over the situation, over and over and over again.

  213. Mimi Mekhi says:

    I need my husband to read this.

  214. deafsinger says:

    Honey , hit PRINT ! And share it with him !

  215. I also enjoy “Have you tried taking Excedrin Migraine?” Yeah…ok.

  216. I use to have migraines at least 3&4 times a week. I would have to go to emergency and get shots. Finally they put me on daily dose of propananol. Rarely do I get a migraine. I also use to get clustered headaches. A friend of my husbands had them too. He would inhale oxygen to get rid of them. Talk to your doctor. Maybe they can give you the shots to give to yourself or put you on propananol. Good luck I’ve been there.

  217. I used to take propanalol as well. It mainly drooped my blood pressure and made me dizzy much of the time! Fortunately I manage OK most of the time…but I hate em!

  218. Jessica Luu says:

    Interesting… I thought I would post this because its very knowledgable info for anyone who knows a migraine sufferer or who may come across one in a time of an attack… I know for sure I have a few friends on here that do suffer from migraines… I think Ive heard every one of these at some point in time!

  219. Renee Bernau Thompson says:

    OMG! I am printing this list and posting it everywhere!

  220. Nicole Orlick says:

    soo few pppl actually understand this!

  221. I understand it 100%!!! I hate that so many people fail to realize that we do NOT have a headache, it can not be treated with advil or motrin or excedrin migraine….not even a good kick to the head will help! Why people can not fathom that the pain is nearly 24/7 and that on a good day we are lucky to be able to tell you our name without stuttering and having to think about it! And the act we put on so others do not see our misery!

  222. Kim Haug says:

    The worse comment came from my sister. She feels I have migraines to get all the attention from my mother! Now at 51 years old, I don’t think that I need to endure this horrific pain to get attention from my mom. I am married with a wonderful thoughtful husband and daughter who care about me and understand migraines. My sister and I have not spoken to each other in 5 years!

  223. OMG.. can I just wear this sign? I tell myself some of these things.. I swear there are nails in my eye today.. can it just go away already?

  224. Erika Babineau says:

    “It can’t be that bad”???? I would hit that person with my cast iron skillet and then shout in their face, “C’mon get up! It can’t hurt that bad!”

  225. you and me both… thank God my hubby knows when i’m down i’m down.. and I need italian food…

  226. Sorry to hear you’re still suffering…Hope that you have some relief soon!

  227. Shannon Ritter Coker says:

    Thank you so much for writing and sharing this! I hope that my friends and loved ones read this and understand me better for it.

  228. I think these are good points but the advices are a bit narrow-minded. I believe it’s important to always see the good in people who tries to help. If they don’t have chronic migraine, then I can’t expect them to really understand what it’s like, but I can still appreciate when someone tries to help, even if they might not say the exact right words.

  229. deafsinger says:

    Until a person has walked in the shoes of another , they cannot fully understand. All of the well intended suggestions seem to point towards blaming the victim for having the pain .

  230. Andrew Teale says:

    Just passed this one to others on my friends list…I’ve heard all of these so many times!

  231. Kate Renna says:

    I don’t like when people call it a bad headache– it’s not even close to a “bad headache” — it’s a different condition than that– don’t you think?

  232. Jennie Rudin Wallace says:

    Caffeine and migraines are closely connected. That’s why I stay away from caffeine all together. Once I stopped having it, I stopped getting migraines. Just wanted to share!

  233. Kate Renna says:

    I know– that sucks though– I’m such an addict!

  234. Kate Renna says:

    what about tea? Can I still drink tea? 🙂

  235. Emma81 says:

    tea also has caffeine and normal brands that bring out decaff products never taste right. I drink Red Bush s its naturally decaffeinated.

  236. I found coffee made me prone to migraines. I tried decaf for a while but I was still getting headaches (not migraines), so I quickly gave up that too. Now I drink lots of tea and some cokes, but I don’t get migraines :-). Your mileage might be different. I *love* coffee, but giving it up is a no-brainer if the price is migraines. I have touched a drop in years.

  237. Jenny-Rocky Koch says:

    How about “All I have to do is take some Tylenol and go lay down, why cant you do that”.

  238. Kathy Jo Horton Bishop says:

    thank you I’m posting this on my page someone who understands migraines are sooo much more especially the chronic kind..I literrally have tried everything……and am sick of people trying to fix me…years of treatments and thousands of doc haven’t how about just understanding and trying to make me more comfortable by not wearing perfume and cologne around me etcc..

  239. Kathy Jo Horton Bishop says:

    Hoping you all will read this and be more understanding to those of us who suffer (yes I said suffer) with chronic migraines…. <3

  240. Oh my gosh this is the best thing I’ve ever read….please if you have a loved one that also suffers from chronic migraine pass this one…so many people just don’t understand what its like and we get tired of trying to explain ourselves…. 🙂

  241. The one that bothers me is when I am asked why I vomit. Unfortunately I am not a “natural” purger and my fingers have to do the work but having to explain that makes me feel bad. I know why I do it, for those few moments to minutes I feel the pressure release, just like when the sky is constipated and it finally rains what relief my head feels! Trying to explain that to people who are lucky enough to have never experienced one is really hard. I just want to say leave me alone I have my methods, thanks for caring but you don’t understand so please don’t ask me questions…

  242. Gregory Joseph Gauthier says:

    I especially take offense to #5 since I am not a woman. 🙂

  243. Cindy Dalton says:

    I have heard most of these things in the 54 years I’ve suffered from Migraine with Aura and Hemiplegic Migraine disorders. The worst statements about my mental health came from neurologists who were completely ignorant of HM and knew absolutely nothing about how to treat it. A nurse practitioner at my Allergist’s office cares more about my condition than all my previous doctors combined. But then, every female health care professional I’ve seen is far more sympathetic than my male doctors. Few men have migraines so they just simply don’t know or care what we go through; that is, unless their wives have them and that’s a different subject entirely.

  244. Becky Neill Yetter says:

    To our friends and family from Jennie and myself. Please read for our sakes.

  245. Becky Neill Yetter says:

    Many of the hurtful things that are highlighted in this article apply to fibromyalgia, CFS, and many other “hidden” diseases.

  246. Jodene Rudolf says:

    what I’ve experienced is the ‘just think positive’ thoughts……which equates in my mind to ‘I must not be trying hard enough to get better’. I cannot even begin to express the grief that I feel over the loss of a more productive, more active life. For anyone to suggest that I am not trying hard enough to ‘get over’ the disease adds to the grief and gives me more work to do to try to keep my thoughts positive during a difficult time. I would hope we could be trusted to be doing the best we can under trying circumstances.

  247. Cheryl Whitford says:

    Jodene I know the struggle and pain you go through with your migraines. If only those people who aren’t compassionate enough should try a day in your shoes when you are at your worst.

  248. Elaine Axten says:

    I can’t even begin…

  249. Carol Baudat says:

    Been having migraines since I was a child, never know what it was until I told an eye Dr that I thought I was going blind. He asked what I was experiencing, bright lite in my eyes…he asked if I notice if I had a headache afterwords, thinking back I realized I had been. He says that I have migraines.. Went to Dr and have pills to take when I have an attack, then dark and quiet, a bit of throwing up and diarrhea and sleep is the only cure for me. Yes people think its just a headache. Afterwords my brain feels like ground me with pink slime.

  250. Melanie Symonds says:

    How about this one: “Maybe if you didn’t focus on them so much, you wouldn’t have so many.” Or: “Have you tried drinking more water?”

  251. deafsinger says:

    Yes , heard those a whole lot !

  252. Denita Jo Wells says:

    So true!

  253. Dominique Forti says:

    OMG; everyone of them.

  254. I’m on year 9 of having migranes and more recently have started having cluster migranes 🙁 I am only 29 I get to hear your too young to have them, your sick again, your lieing, stop making it up its just allergies but I think the best has thus far been well then if u get them why don’t I. And I cant get any help with the ss forms to top it off……

  255. Samantha, I just saw this post. I have migraines.The type I have are stroke producing. I have already had one stroke due to a migraine so I know what you are talking about. My migraines can happen with or without the pain. Those who do not have them, can not understand what you are going though. At times, you feel like your skin is crawling and you will go crazy..Your vision blurs so bad that you have to guess where you are going. And yes….I’ve heard..”your sick again??” or “it can’t be that bad”…

  256. Btw: I was around your age when I had the stroke due to my margarine. The only lasting effect is there are some words I can not pronounce now, or I’ll stutter when trying to pronounce certain words. But….I am blessed. I can walk, talk and dress myself. So, I’m not complaining.

  257. these really hit home! I want to copy and post at home, at work, anywhere and everywhere I go, tape it to myself!

  258. Roxanne Sifuentes says:

    Don’t forget “try drinking more water”.

  259. Hi, Dawn. I read through the article and I imagine you have heard ALL of those lines on too many occassions. I certainly hope those cursed migraines have been absent from your life lately.

  260. Kelly Richardson says:

    I have heard all of these. I have inherited the migraine gene from my mother. I have ended up in the hopsital several times with the intense pain and people thomk it’s still just a headache. I am lucky to have a doctor that is working with me to try to find the right “cocktail” for me. Mine are hormonal and we know that. We just have to come up with the right combination of drugs that will help me. May the people who criticize be cursed with at least one migraine in their life time! It’s only fair!

  261. I have not read every comment yet so this might be a repeat if is is I am sorry, but I have been accused a few times during the lifetime of my migaines where a few family members have said-“how come you have all these tests like a CT-scan and an MRI and they come back normal-with all your pain should have something wrong have shown up on those test?” Or another favorite of mine is a few years back I was seeing a doctor for a long time who tried everything he could think of and of course nothing was working I was once again told by my family if they can’t figure this out by now either find another doctor or get a grip on this yourself and stop with this, they are only headaches you don’t have cancer.These comments hurt just as bad as the migraines I know the family is frustrated and sick of me being sick but I just thought of these comments to add to our list. Feel good everyone if possible, Thanks Linda.

  262. Veronica Gheller says:

    Awesome list! I heard some of these last night! I understand that most people are coming from a good place. I usually just smile and nod. I’m not going to lie, it can get frustrating.

  263. I’ve heard them all! Especially from those really close to me.

  264. Amazing post; this information needs to be everywhere as far as I’m concerned – maybe even taught in the schools! I haven’t been privy to all the misconceptions that people open “say” (aka, they haven’t said too many things “to my face”), but I can tell by the way people act, what they DON’T do or say, and just general body posture when I talk about my pain or loss of function. Thank you so much for posting this!

  265. I heard all this and then some.

  266. Emmy Smith says:

    wow I loved reading this it is so true xxx.

  267. Emmy Smith says:

    paula read this Paula Borge xxx

  268. Paula Borge says:

    i have few days ago xxxx

  269. This is excellent. “It’s just a headache” is such a common misconception. when I tell people I have migraines they think it’s simply a headache, when sometimes I get only aura and no headache at all!

  270. Sharon McNeill Ingram says:

    Great article!!

  271. Our beautiful childern, I love you all

  272. Jamie Benton says:

    I am a difficult one. Migraines since I was 6 years old. Vomiting, nausea, dizzines, painful neck issues.

  273. I’m betting we have heard all or most of these. It somehow, although I don’t want anyone to suffer like I do, it’s so nice to receive this info. Thanks to all of you:)

  274. Amanda Lasky says:

    I’ve heard so many of them. Even from my fiance who has NEVER had a migraine.

  275. Would love to share this article. Is there a share button? Even though this posted to MY wall, lots of friends and family may miss it. How do I share it with others?

  276. Great article! I especially relate with #2…just because a person LOOKS well doesn’t mean that they are well! Also, insensitive comments like #11 really drive me bonkers! Don’t people think we want to do that? Migraineurs miss out on so many events that they would LOVE to attend! Migraineurs are not seeking sympathy, just understanding!

  277. I wish this had a SHARE button!!!

  278. Cathy Love says:

    Everyone has something in their life that isn’t good. I get migraine’s, but they do not define me! I agree many do not understand, I am glad they do not have to. I would not wish these on my worst enemy. I am thankful God gives me the strength to get through them, I know I can’t do it on my own!

  279. I wish everyone would read this!

  280. Jean Sullivan says:

    Most people have no idea how difficult it is to live with migraines.

  281. Also, many do to understand how we feel , after the headache is over and you are exhausted.
    Had a health care provider say to me once, why are you here, there is not cure for migraines. the

  282. Michele Carroll Rooney Hynds says:

    Very true

  283. Angel Macias-Dominguez says:

    Oh my favorites ones. Just lay down till it gets better or go to sleep so your body can rest. Little do they know I wish someone would blow my head off lol. Unfortunately I get extreme fatigue before a migraine. And unroll it heats people think I’m just lazy..ugh

  284. Gail Alison says:

    My ex told me that since I live with chronic pain everyday that I should be used to it, it should become my new “normal” and I should be able to just get on with life. Yeah, do you wonder why he is my ex?

  285. Suzanne Johnson says:

    The one(s) that trips my trigger are “It’s just a headache. I get headaches all the time. I have one every day but it doesn’t stop me. It must be nice to stay home and do nothing!”

  286. deafsinger says:

    Oh.My.God. Yes , I have heard that too . And the “It must be nice to just stay home all the time”

  287. Andrea Adler Hershman says:

    I have heard everyone of these bullet points myself. A so called family member keeps telling me that when she doesn’t feel well she can take are of everything ie. parents and family. It is so very hurtful, This same person has told m, e that my husband really wants me to go back to work (not true). LOL yes I have been offered Tylenol or Aleve too. Very funny

  288. Nadine Cohn Canter says:

    How could anyone that knows you think that you’re not doing everything you can! I hope that it’s just that they don’t realize how they come across and mean well – keep your chin up and take it that way! Lots of love to you (and Eliot and Ali too!)

  289. Andrea Adler Hershman says:

    Some people are just mean people I have been told and and narcisitic too!

  290. Nancy Haldeman Miller says:

    A well-meaning person has told me my husband wants me to go back to work. He was just chanelling his relationship, not illuminating mine. I hope you feel good all the time. I am not a migraine sufferer, just retired for the last 25 years.

  291. Andrea Adler Hershman says:

    @Nancy Thank you for the kind wishes. I have migraines daily and also have muscular dystrophy. I am blessed to have a great husband that is understanding, but ohters as you have mentioned do not. Have a good easter Nancy. say hello to Gary for me.

  292. Nancy Haldeman Miller says:

    Thank you. I guess you know I am also blessed, since you know him. Good Pesach to you. We celebrate both, so the feasting never ends here. 🙂

  293. Andrea Adler Hershman says:

    Yes Gary and went to school together from first grade-12 grade. 1st to 6th same class…….

  294. Marlisa Clark says:

    As a migraine patient, I’ve heard several of these and have heard many describe their typical headaches as such, which I do find offensive. Sometimes I just have to dismiss the ignorance

  295. Kristin Hogan says:

    AMEN!

  296. Janice Hilton says:

    For all who suffer from Migraine headaches: we do understand in a special way; its just that we don’t know how to take the pain away and struggle terribly to accept that we can’t! Please know we care.

  297. Tine Schrijvers says:

    Thanks Janice I’ve suffered with migraines since I was 18. I actually suffered stroke like symptons one day while teaching & collapsed suddenly in the hallway,taken by ambulance to the ER. They have been debilitating for me, from 1 – 3 x in a month, each lasting 2 -4 days of lying in a fetal position, no light, no sound, in excrutiating pain & vomiting every couple of hours. I think I have “lost” about 8 years of my life to migraine suffering, unable to do anything, crying in pain, questioning how I can end it. Each of the 12 points were right on. Unless you have had one you can NOT know what it is like.

  298. Danni GammaGamma says:

    My husband had never had a headache in his life, so it was extremely irritating to him when I would get a migraine and have to lay down, go to the ER for treatment, etc. That is until he got a medical condition that causes severe headaches. Not migraines, but severe headaches. He looked at me after one of these bouts and said, “I never understood how you felt when you had a migraine. This is no where near that I’m sure, and I just don’t know how you can stand it.” Since then he has been much more supportive and considerate when I get my migraines. He is the first one to tell me to take my shot, and go lay down….quite a switch. I guess unless someone really has experienced a migraine or severe headache, they have no clue.

  299. Most people do not understand what it is like to live with chronic migraines. Then there is fighting with your insurance company to get the dosaage you need approved. I have migraines more days than not. It is very difficult to manage.

  300. Great article. So true! I can think of a couple other statements I hate hearing!

  301. Judy Grimes Coale says:

    OMG I totally have gotten all these said to me and they ALL really piss me off!!!!!!!!!!

  302. Sarah Hoyte says:

    As a migraineur who also has a variety of other illnesses that are made worse by stress (but is not the sole cause), I find #1 very frustrating! If I could be less stressed, I would. Telling me that is not helpful!

  303. Nancy Marisela Kidd says:

    No one can truly understand this pain 🙁

  304. Slim Anomaly says:

    I can’t even remember how many times I have heard “you just have a low pain tollerance!” or “Have you tried Imitrex”… what haven’t I tried is a better question cause I have tried just about everything!

  305. Helena Cunningham says:

    Imitrex is useless

  306. Nan Heidt says:

    One thing they tell OTHER kinds of pain patients but NEVER tell a migraineur: “Take your pain medications on time; you HAVE to stay ahead of the pain.” I have news for them – the reason we have “rebound” pain is because they don’t give you enough pain medication to ABORT the thing!

  307. Ellen Schnakenberg says:

    There is a difference between pain medications and an abortive. Still, many chronic Migraineurs do not receive enough to abort their attacks and simply must choose which days to treat and which to suffer through. Choose wrong and you could easily end up in the ER. Yes, it sure is a slippery slope, isn’t it

  308. Jennie Hamilton says:

    Thank you for this, Ellen. I’ve shared with my family, both on and off Facebook.

  309. Mark Yoffie says:

    What a great perspective. One can never truely understand the plight of the migraineur unless they themselves are a migraineur as well.

  310. Roberta Manion Yoffie says:

    Thank you for taking the time to read this. It is important for his siblings to understand what he is going through.

  311. Katie Robinson says:

    This pretty much sums it up for me. The side of effects of one preventative are still giving me problems and I was weaned off it about 2 months ago. I go in for cognitive testing in 2 days to find out what I have of the things I used to be able to do. Today the saying ” Of all the things I’ve lost in my life….I miss my mind the most” is horribly true!

  312. Sue Ivany says:

    Great article….though I genuinely think people suggest treatment options because they care. No one else really has any way of knowing that I’ve pretty much tried it all – and then some….

  313. Katie Kirkpatrick says:

    An eye-opener, Sue – thanks for sharing this.

  314. Cary White says:

    #2 is my favourite for any kind of chronic pain and same with #9 seriously? I have extra energy to spend on a hobby? Really? I think not!! 🙂 Good article for sure 🙂

  315. Jenny Barber says:

    This is Fabulous , thank you.

  316. Ik heb ze allemaal al gehoord, en nog meer zelfs…. wie het niet heeft, weet echt niet wat migraine is …

  317. Anne Kernodle Goodman says:

    “Drink more water” That’s the one I get ALL the time. If I drank more water or avoided more nitrates or yeast or whatever……….good grief. I don’t need your help. That’s what I want to say over and over and over. Don’t you think we all haven’t tried EVERYTHING!

  318. Tricia Lee Bond says:

    I can say that you hit the nail on the head. You have said here what I have been saying to doctors and people that are unaware of just how bad some migraines can be. Thank you very much for sharing with us.

  319. Amy Warrick says:

    Wow… I’ve heard these all before. There is no cure. I have treatments that work most of the time, but it’s a moving target. Glad most people in my life understand. Hugs to them!

  320. I don’t like when the subject of food triggers come up. I’ve had people tell me that “their friend” gave up red wine, wheat, msg or soy and never had a migraine again. I’ve personally tried giving up many different foods to no effect. I avoid caffeine and alcohol because I find they add to the whole nasty headache picture, but that’s a pretty recent development, and I wouldn’t classify them as “triggers.” Nevertheless, the whole food trigger thing just feeds into the whole idea that my migraines are somehow my fault because I am eating wrong.

  321. Ellen Schnakenberg says:

    Although it is true that triggers do make our lives a challenge, sometimes they are just simply beyond our control. They do not CAUSE Migraine – Migraine is something we’re born with the genetic capacity for, so if the blame goes anywhere, it’s on those durned genes 🙂

  322. Kristen Day Powers says:

    How about….if you eat chocolate, you are going to get a migraine. If that was all I had to give up, it would be an easy decision.

  323. Great article and helpful to those who are not in that boat, thanks.

  324. Donna Espinosa says:

    Someone gave me some “HeadOn” to try!

  325. Ellen Schnakenberg says:

    I hope it was helpful to you! It’s important to remember that what works for one will be ineffective for another. We are all different and Migraine Disease really is like a spectrum disorder. Some patients do just fine on a tylenol, while others end up in the ER, or worse. I found HeadOn and other products to be nice to add to my regular regimen when they just aren’t enough. I can’t say that it does much but relax me a little, but I’ll take what I can get 🙂 Thankfully they aren’t harmful to mix with other meds.

  326. Margaret Hely Watkins says:

    I believe because I look so bad when I have a migraine people feel for me. I have had people be nothing but kind and caring when they seem me suffering. I work with the public and my regulars know if I am wearing sunglasses, its a bad migraine. My supervisors are supportive too when they see me with the sunglasses. Since my husband and members of his family also are migraineurs they are supportive too. BTW I have been suffering since I was at least 3 years old, as has one of my daughters.

  327. Meghan Zbikowski says:

    We’re missing the ultimate one! My favorite of all time…..”You’re probably dehydrated, are you drinking enough water?” Now when I hear that I laugh (even my b/f does too now because he gets it!) but I always thank the person for offering a suggestion. I could get into it with them but I just move along……sometimes when I explain I feel like a broken record! I’m going to go drink my water now. 😉

  328. Zakariah Lewis Longo says:

    Yes, I asked you about water, but that’s only because I specifically get migraines when I eat too much sodium or get dehydrated.

  329. Rae Sawyer says:

    I have posted this before… “at least you’re not at a 10 (pain scale)!” Many of my friends shake their heads up and down as if they are saying “yes” and ask if my headaches are gone. I feel so bad telling them that they are not.

  330. Lindsay Thorpe says:

    so informative, thanks for helping us understand what you’re going through Rae. We love you!

  331. Hi Rae, ali has been hit with a spate of 4 in a row over 5 days. She’s @ the docs on Monday so hopefully pinpoint where they have suddenly caused them. Log you guys.

  332. Rae Sawyer says:

    I am so sorry to hear that Paul. I will be praying for her. Migraines are the worst. So many people I know suffer with them. I trust if God does not take them away … He has a plan and He will use it for His good! Love you guys too!!!

  333. Great article and 100% correct….people that don’t get migraines really do not understand the pain.

  334. Barbara Davis says:

    I love it……not! People who know I see a neuro & a headache specialist still tell me about this cure or that. If there’s a leaf, vitamin or ridiculous thing you can somehow wear, I can count on my grandma to keep me aprised. But I’m pretty sure if it’s worth the effort, one of those neuro docs would have suggested it as well.

  335. Patricia Rawlek says:

    I have suffered from since my early teens. I was finally diagnosed when pregnant with my second son (I was 27) my personal “un”favorite line from everyone in my life was “It is just all in your head”. Even after they finally told me and some of my family members about migraines and the debilitating effects that I would be facing, any family members still thought that it was “all in my head” and that the pain couldn’t be THAT bad. I have learned over the years how to mitigate the headaches and have finally found a treatment option that works on 89% of the migraines but I sure don’t let too many people know when I have a migraine. It just isn’t worth the extra hassle.

  336. Alwa Glebe says:

    Absolutely true!

  337. Sharon Alexander says:

    Ellen, once again, you hit the nail on the head. I had to laugh. I’ve heard every one of these countless times! I’m lucky to be married to an understanding and compassionate man. It’s hearbreaking to hear about people who live with spouses who aren’t. (been there; remarried) I would strongly advise them to find a local support group and surround themselves with people who understand and validate their feelings. It makes a world of difference.

  338. Connie Davis says:

    My husband has witnessed me having TIA symptoms with migraines that have been diagnosed as basilar migraines (same symptoms). I have gone to the ER due to these symptoms because that’s what all drs will tell you to do as this is mimicking a stroke. When we get there, I’m told to have a seat in the waiting room. Because of this, he thinks I’m exagerating the whole thing (“if it was as serious as you let on, they’d take you right back”). I’ve had numbness of mouth, one side of my body weakness and inability to speak. He’s witnessed me rocking back and forth holding my head and I’ve had blood vessels bust under my eyes due to headaches & he has admitted he’s never had a headache in his life, but yet he is so quick to assume that this can’t be that bad. I’m 53 & have had them since age 18 when I started on birth control pills. I’ve had MRI’s that show I have degenerative disk disease in my neck, an “old stroke”, & have been diagnosed with fibromyalgia, TMJ and when I eat anything my temples actually swell up. Even though he knows all of this, he still has no empathy or understanding about why I feel the way I do. But let him get sick………

  339. Dawn Miller says:

    I think people mean well…most of the time!

  340. Inger Jackson says:

    This is so true. I had a former boss to sugguest that I was faking migraines so that I could be off work. That is the furthest thing from the truth. I would much rather be at work than in the throws of a 3-day migraine that it seems nothing will cure. Needless to say, I no longer work fo her.

  341. I am lucky to have support and love from family and friends. Most of us have experienced each of these “helpful” or not helpful comments at some point. I like hearing new things, though – I have been helped many times this way.

  342. and, wouldn’t you know, I had to go to the emergency room tonight for a migraine. they actually wrote me a prescription this time for something called Fiorinal. it’s supposedly is a combination drug. I hope this one works…nothing else has.

  343. Ellen Schnakenberg says:

    Just a quick warning – Fiorinal can be very helpful, but needs great care as it is notorious for creating an even worse situation – MOH (Medication Overuse Headache) aka rebound. I hope it works for you! *crosses fingers*

  344. Ellen Schnakenberg , thanks. i haven’t needed it yet, but i’m about due, and i’m always worried about the rebound headache with everything. thanks for the heads up!

  345. Carly Schaps says:

    One thing that really annoys me is when people in my family say “Well we can’t do/eat this or go here because you’ll get a headache.” It’s not like I want to ruin anyone’s fun, I’d just rather not spend the next 8 hours in pain. I have a lot of food triggers to my headaches (nitrites, sulfites, MSG, maltodextrin, malic acid, nuts, sodium benzoate – pretty much every common trigger but chocolate and caffiene) so I pretty much have to eat things that are either made from scratch or that have a low chance of having triggers. This eliminates most Chinese and friend foods. My family likes to have fried chicken and I get a guilt trip if I don’t partake. The last time that I did partake, I got a really bad migraine and spent the next 6 hours puking every half hour.

    I’ve also ran into the “Can’t you just take a pill?” Maxalt is great but it’s not 100% (what is?) It’s also $600 for 18 pills so I actually prefer to not take it if I don’t have to. My triggers that I know about are muscle aches, lack of sleep, too much sleep, irregular sleep schedule, bright lights, loud noises, strong smells, nitrites, sulfites, MSG, maltodextrin, malic acid, nuts, sodium benzoate, hormones, and weather changes. I can usually control the food triggers but the environmental ones are often beyond my control. I’m on Amitriptyline and Magnesium for preventatives and on birth control to try to regulate my cycle a bit but even with those and avoiding the dietary triggers, I still get migraines about 5-6 days out of the month.

  346. jmg says:

    I’ve been a headache sufferer all my life, but I never had a migraine until I started taking birth control in my early 20s, then I got at least one every month during my “off week”. Bright sunlight, irregular sleep schedule, irregular meal schedules and weather changes were my triggers. I took Maxalt and Amitriptyline for several years until I decided to stop the birth control. Then I weaned myself off the other drugs as well. I am now migraine-free. I will still get the occasional sinus headache when the weather changes, but no more vomiting and lying on the bathroom floor writhing in pain! I had long suspected that my migraines were a side effect of the birth control and I was beginning to experience side-effects from the other drugs as well which was scary. I feel so much healthier now that I am no longer poisoning myself.

  347. Ellen Schnakenberg author says:

    jmg – Congratulations on getting a hold of your Migraines and figuring out an important management strategy for you. 🙂 You bring up several good points here that I’d love to talk about briefly however…

    Migraine is a genetic, neurologic disease that is often un-diagnosed or mis-diagnosed. Most of the time when Migraine or headache patients feel that they are suffering “sinus headache” the reality is that they are actually suffering Migraine, often with autonomic symptoms such as running nose, sinus swelling, etc. It is far more likely that you were suffering Migraine, but less serious attacks, before you began hormonal birth control. The fact that your headaches come with weather change is a clue to this. To know for sure, I suggest that you see a headache specialist who will be the best person to help you figure out the answer to this question. It is possible that these headaches too might be controlled with good management.

    Migraine isn’t actually a side effect of the birth control method you used, but it can trigger attacks. Absolutely! Funny how for some going on hormonal birth control is helpful to their headaches, and for others it wreaks havoc. The important thing is that you figured it out and were able to fix the problem! Yay!! One person’s medicine can indeed be another person’s poison. Just remember not to lump all people or all medicines together though. Just as meds can hurt, they can also help, even saving lives.

  348. Abby says:

    Love the list. It’s so perfect. I don’t necessarily agree with #10— it is annoying, but honestly I’ll try anything. And if I’ve heard it before, oh well. Thanks for this… great to pass along to family and friends.

    The worst thing that was ever said to me was when my work partner said he felt like our team of two was really more like one and a half people (me being the “half”). It really made me feel terrible.

  349. Kate says:

    HI all…cudos to all of you. I have suffered Migraine for long as I can remember, and I salute you for your strength and determination to love and care for yourselves through many difficult and painful episodes-let alone the hurt (intentional or not) from those who simply cannot relate to what they have never experienced. I always say that Migraineurs surely mus be some of the most patient and empathetic people on the planet.
    Anybody ever get either of these hurtful comments?

    “Well, if you are as sick as all that, maybe you should give up this job to someone who really wants to work.”
    or..
    “Ahhh. Nudge, nudge, wink wink.
    Had a good time last night, eh?”
    Bleah. I am sometimes too weary to even respond.

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