Nine things people with chronic migraine want you to know.

9 Things People With Chronic Migraine Want You to Know

1. Chronic migraine is not the same as chronic pain. Migraine is known for causing severe head pain, but it also causes a constellation of other neurological symptoms that can be felt throughout the body. For some people, these non-pain symptoms, like severe nausea and vomiting, cognitive dysfunction, and fatigue, are more disabling than the pain. Even though the pain is usually bad (though some of us have no pain at all), it’s likely not the only disabling symptom a person with chronic migraine has.

2. Chronic migraine may not mean a person has a migraine every day, but some of us do. The official definition of chronic migraine is 15 headache days a month, at least eight of which are migraine. Someone with chronic migraine is lucky to get a week between attacks, usually it’s a day or two. Some people with chronic migraine get no break at all—either they have a never-ending migraine attack or attacks are triggered so frequently that they stack up on top of each other.


3. Chronic migraine is one of the most disabling of all medical conditions. No, I didn’t make that up. The World Health Organization analyzed the burden of 135 diseases worldwide. Of these diseases, migraine ranks in the top 20 of most years lost to disability.1 Researchers ranked severity of disability in seven levels. Diseases that exemplify the highest level include active psychosis, severe depression, severe migraine, quadriplegia, terminal stage cancer.2

4. Being out of the house doesn’t necessarily mean that a chronic migraineur feels OK. Research shows that people with more migraine days a month report less migraine-related impairment than those with fewer days a month.3 This may seem counterintuitive, but it makes sense when you know how hard people with chronic migraine push themselves during migraine attacks. It’s not that people with chronic migraine have less painful attacks than those with episodic migraine. It’s because if we don’t push ourselves, we’ll rarely leave the house. We often exceed our bodies’ limits so we can earn a living, go to our kids’ soccer games, or have some semblance of a social life. And we often pay the price with a horrendous migraine attack.

5. When we stay in bed, it’s because we have to. People with chronic migraine can sometimes push through attacks and sometimes can’t. When we can’t, it’s because we are physically incapable of doing anything else. This doesn’t mean we’re “giving in” to migraine or letting it control our lives. This is not a function of mind over matter. If we could push through the migraine attack, we would. If we could live normal lives, we would. Healthy people with hectic lives sometimes say that lying in bed most of the time would be a luxury. I’m not sure how spending day after day in horrible pain, barely able to move, unable to think, too nauseated to eat, and vomiting one’s guts up could ever be thought of as a treat.

6. The sensory overload associated with chronic migraine means we may not be able to go to a concert or a bar or an NFL game with you. All five senses that you learned about in elementary school—sight, sound, touch, taste, smell—are heightened during a migraine attack. For people with episodic migraine, these senses settle down between attacks. That’s not the case for people with chronic migraine.4 Not only are we hyperaware of sensory input, our brains are so hyperreactive to it that odors, lights, and noise can trigger more migraine attacks.

7. Finding an effective medication is not the same as being cured. There is no cure for migraine. There are effective treatments, but it can be hard to find the best treatment for each individual. Even then, treatments often provide a small amount of relief, requiring a combination of multiple medications, supplements and/or therapies to provide substantial relief. Someone with chronic migraine can be over the moon about finding an effective medication—even when “effective” means that it reduces the pain one notch on a 0-10 scale. This tiny bit of relief can feel miraculous, but it doesn’t necessarily translate into increased functionality.

8. Chronic migraine is exhausting. Imagine a job that you could never leave, not even for a short vacation. A job that is on your mind every moment of every day. A job that wakes you up in the middle of the night demanding attention. A job that causes severe physical and mental anguish, wreaking havoc on your body and your life. Now imagine having to do another job on top of that, like raising children or holding down a paying job. And add another job on top of that, one that requires hours of doctor’s appointments and treatments, pharmacy trips, fighting with health insurance companies, and research each week. The physical symptoms are enough to cause exhaustion, add all the other responsibilities on top of it and we’re pretty well wrecked.

9. Having chronic migraine is not a choice. We do not have chronic migraine to shirk responsibilities or get attention. We don’t spend our days eating bon-bons and mucking around on Facebook. We can’t think or pray our way out of chronic migraine. All the positive thoughts in the world will not make chronic migraine go away. You have no idea how much we wish they could.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
  1. Leonardi, M., Steiner, T. J., Scher, A. T., & Lipton, R. B. (2005). The global burden of migraine: measuring disability in headache disorders with WHO's Classification of Functioning, Disability and Health (ICF). The journal of Headache and Pain, 6(6), 429-440.
  2. Mathers, C., Fat, D. M., & Boerma, J. T. (2008). The global burden of disease: 2004 update. World Health Organization.
  3. Lipton, R. B., Bigal, M. E., Diamond, M., Freitag, F., Reed, M. L., & Stewart, W. F. (2007). Migraine prevalence, disease burden, and the need for preventive therapy. Neurology, 68(5), 343-349.
  4. Cady, R. K., Schreiber, C. P., & Farmer, K. U. (2004). Understanding the patient with migraine: the evolution from episodic headache to chronic neurologic disease. A proposed classification of patients with headache.Headache: The Journal of Head and Face Pain, 44(5), 426-435.

Comments

View Comments (25)
  • Deb
    11 months ago

    Good article. Thanks for publishing it. Like many if you, chronic migraine rules my life. I am grateful to have a terrific headache specialist who has me on a regimen including botox every 12 weeks that has provided a few headache free days in a month. Nevertheless, it seems the headache syndrome with pre and post symptoms is never ending. One attack runs into the start of another. 15 migraine headache free days in a month is highest number achieved in years a couple of times for me. I’ve learned to live with the conditiion and continue to pursue leading edge and alternative solutions. Once a high energy, succesful business woman, I am now a shell of what I used to be. Yet, I am grateful for every day I am able to function and interact with others at all. And I am grateful to learn from others in this forum. Thanks to all who share. It helps to know I am far from alone in this. And may you all enjoy a headache free day soon. Regards, Gubs

  • wappaw
    12 months ago

    I would say this article hits the nail on the head, no pun intended. I am currently in a 4 day running episode of my chronic migraines. My Botox injections are two weeks away, and I am extremely concerned I am slipping back into a bout with rebound / medicine overuse headaches. I look at my monthly migraine record logs and just shake my head. I can’t even imagine what it would be like to go 4 or 5 days in a row without a migraine. Hardly any day passes without the tail-tell twinge of pain indicating the beginning of the next bout. Migraines truly dictate my life…

  • rgmcrae
    12 months ago

    Thank you for writing this article to bring awareness to this disorder. I am a chronic daily migraine sufferer and I think it’s important that people understand a bit about the differences in migraine disorders. I share and read these articles often.

  • ctaylor
    2 years ago

    First, what a wonderful article. I am seriously considering copying it off to give to people who don’t get it. I have just retired from my job due to the disabling effects of my condition, but now I have to explain that this is a real live disability. Just because I am able to collect my pension at 58 doesn’t mean I am not just as disabled as someone who has to go on Social Security or some other disability program for their condition. It’s like when you tell someone you suffer from chronic migraine and they respond with, “I know, I had such a migraine yesterday.” No, they don’t know!

    There is so much good research and strong data to show that this is not just a legitimate disability but a leading disability and yet it is still wrapped in the stigma of being an ailment of malingerers.

  • parmes
    12 months ago

    Honestly that is my top “never f***ing say that to me again” moment: when I’m trying to explain the disease I’ve been living with since before elementary school years, and you turn around and say you ‘had one too’ and I know you were all over Facebook talking about the great day you had at the movies? No. Nono, back on out of this here room before you start something. I get every person has different triggers, all that jazz, but come on. People just don’t get it.

  • 2 years ago

    Thank you, Kerrie. Your article was well-written and relevant.

  • mrst53
    2 years ago

    We need to take out billboards for this. I have felt guilt all my adult life for the times I could not go places or the things I could not do. I felt less of a Mom and less of a wife because of these migraines. There were weeks at a time that I lost due the migraine or getting one or getting over one. I had good doctors, but the meds just were not there. I am glad things are a little better, and my husband understands better, but I can’t go back and undo my son’s life.

  • cindyd
    2 years ago

    This article is great. This describes migraines and how we feel with chronic migraines perfectly. I have one right now and can’t stop it…I am in misery.

  • MelanieM moderator
    2 years ago

    cindyd, I am so sorry you are having a migraine. I hope it resolves quickly. Best, Melanie (Migraine.com team member)

  • Joanna Bodner moderator
    2 years ago

    Hi cindyd,
    Thank you for taking the time to comment. I happy to hear that you related well to this article. I am however, so sorry to hear that you are in the midst of a tough attack. In case this article may provide you with some tips/ideas you may not have considered on ways to help ease the pain during an attack…I thought I’d share.

    https://migraine.com/blog/go-to-essentials-during-a-migraine/

    Thinking of you & hoping you being to experience relief very soon!
    Warmly,
    Joanna (Migraine.com Team)

  • Jcs727
    4 years ago

    I find the guilt associated with telling people that you have a headache the most distressing. I almost feel like they think that I am using it as an excuse to avoid doing things. If only that were true!! I recall going out with my ex and I would be so sick but bc he did not understand migraines, he would get upset when I needed to change plans. Wish I could get rid of migraines as easily as it was to be rid of him. ☺️

  • Tracy Grant
    4 years ago

    I don’t hate many things, but I hate migraines. Thank you for sharing. Really good article.

  • Janet
    4 years ago

    Thank. you..
    Janet

  • Kim Leonoudakis
    4 years ago

    Great article!

  • bluesjr
    4 years ago

    well done Kerrie. I second what Margo said.

  • aellis
    4 years ago

    Amen!

    I’m at work huffing essential peppermint oil to help stave one off as I write this. Sometimes it works, sometimes it doesn’t. Fingers crossed.

  • MargoW
    4 years ago

    Great article! You nicely sum up all the things I’ve been trying to explain to my family and friends for years. I’ll be sharing your article with them.

  • Sylvia T
    4 years ago

    Thank you for this great article! It is so good for me to know that I am not alone! And it helps me explaining my condition to others. Wishing everybody here a day free of pain.

  • Hvkmgs
    4 years ago

    Thanks Kerrie! Amazing article that has already been shared. Thank you for putting into words what so many of us feel!

  • Linda K.
    4 years ago

    Wonderful article! At the moment, I feel pretty good, for which I’m grateful, but dealing with this every day is truly exhausting and disabling. I am thankful that on most days, I can function at some level. But as soon as I write this, it could change! This article does a great job of spelling it out without overstating it. Very helpful, both for me and to share with others.

  • Nancy Stein
    4 years ago

    This is one of the best articles I’ve read on this subject.

  • peeperview
    4 years ago

    Ditto on what Luna said, I’ll be making copies of this one. Even my most compassionate friends and family members can’t understand. This will give them some true insight. Very well written, Kerrie. Thank you!

  • RobertCan
    4 years ago

    Having chronic migraine is not a choice. Who would choose to live a life with this much pain as often as we must endure it? I do my best to carry on with life; to plow forward and pretend I’m normal. Then there are days when waving the white flag of surrender is all I can do. Today, I surrender. 🙁

    Wishing you all a pain-free day. – robert

  • Luna
    4 years ago

    That is my reality. Thanks for verbalizing it. This will definitely get printed and distributed to a few relatives and friends.

  • graham06
    4 years ago

    Amazing article.

    Linda K. I feel pretty good today, too, but even on my good days I can never fully relax and enjoy. I’m always on guard for the next sign of migraine pain… such is my life. It rules me.

    Kerrie, thank you for sharing!

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