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Surviving Life with Intractable Migraine

Living with intractable migraine is likely one of the hardest things you’ll ever have to do. The pain is constant; the isolation is intense. You’re fatigued, and you’ve had to give up at least some of the things you once loved: sports, work, foods, favorite activities, etc. You’re also probably experiencing some level of anxiety and/or depression.

This isn’t to say, however, that it’s hopeless or that you can’t get through it. You can. I know, because I did – twice.

There isn’t one key to survival. I wish there were. I wish I could tell you to do X and all your problems will be solved. Sadly, I can’t. I can, however, give you some tips on things you can do to make life easier during this time.

Make lifestyle changes. Now is the time to figure out how to best take care of you. Whether this helps break your migraine cycle or not, it will certainly help you feel better in the meantime. Eat in the way that feels best to you and doesn’t trigger a migraine. Optimize your sleep schedule. Engage in activities you enjoy. Start meditating. Practice yoga (if it helps). Do what feels physically and emotionally good to you, and put your health and happiness above everything else.

Find something you love to do that you’re still capable of doing, and do it. We have to give up so much when we’re in the midst of an intractable attack. Ward off despair by ensuring you have something to embrace in the place of all you’ve lost.

Find a pain management doctor. Your neurologist, headache specialist, or primary care doctor is likely focused most on breaking the cycle of your attack. This is important, but often isn’t enough to cope with the day-to-day realities of living with chronic pain. A pain management doctor can help you minimize the agony. Just remember: management isn’t elimination. Don’t expect to get rid of the pain entirely. A few degrees of relief may be all you get, but believe me, every bit helps.

See a therapist. Depression and anxiety disorders commonly occur with migraine. This is particularly true in intractable cases. Seeing a therapist, especially one who specializes in chronic pain patients, can help you manage the emotional roller coaster you’re likely experiencing.

Find something that serves as a distraction during your worst moments. When we think of recovering from migraine, we normally think of lying in a dark, quiet room and trying to sleep. For me, this was almost impossible during my intractable periods, especially on the very bad days. The pain was simply too intense, and lying still with no noise and no distraction was almost unbearable. So, I set the brightness to the lowest level it would go and watched a lot of House, M.D. on my computer. It was the perfect show for me: few flashing lights, very little yelling or loud noises, and it was formulaic enough that my pain raddled brain could follow it but interesting enough to still serve as a distraction. Find something that works for you.

Practice acceptance. It is so easy to feel negative and fearful during this time. While it is understandable, I highly advise against it. It will only make you feel worse. Try to approach your life from a place of acceptance. I bet it will make you feel better. (Read “Shift Your Perspective, Change Your Life?” and my book, Finding Happiness with Migraines: A Do It Yourself Guide, for more on this.)

 

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.

Comments

  • Stasialen
    2 years ago

    This was a great article. Unlike a number of people on this site, I had migraines in my 20’s nothing for 20 years, then a bizzar stroke like attack that has now resulted in what they think is an intractable migraine, or new daily persistent headache, or ?? I am just wondering if anyone else had this happen after not having been suffered from migraines previously? Has anyone else had this coincide with menopause? I am 48, I am on day 120 on this wierd headache. I am fortunate to have been seen by 2 amazing headache specialist I have had IV infusions, occipital block, CT, MRI, and a host of other drugs tried. On the plus side, I have not been a long time sufferer with a history of medication overuse so not sure there. BUT like unstable girl my trigger is pressure change, pain is always there, but will be much worse if pressure is rising or falling. Nice to know we are not alone. But would be nicer for all of us to get some answers. Also I have notice issue with brain function, forgetting words, speech issues (aphasia that is what started all of this) forgetting how to spell things, or remembering how to get places I have driven to a number of times before. I am wondering if my brain after 120 days is just super fatigued. I don’t want to stop working, I love my job, so most days just push through, and come home and become a zombie on the couch. Glad to know there are more of us. As we talk, and raise awareness, that it how $$$ are allocated for research. It is important to comment, post and let your story be heard.

  • Sarah Hackley moderator author
    2 years ago

    Sharing our stories is so important. Thank you for sharing yours. I don’t have any experience with the presentation you’ve described, but I know my grandmother’s were horrible in her 20s and early 30s, got better for a little while, and then returned with a vengence after menopause. Like you, I do experience some significant cognitive deficits at times and aphasia is a regular occurrence. Again, thank you for commenting. It’s so nice to know we aren’t alone!

  • unstablegirl
    4 years ago

    Thank you SO much for this article, and to everyone who has commented. My first intractable migraine lasted 9 months and was broken with a medication suggested by a neurologist. Unfortunately, two years later I once again found myself with an intractable migraine and am currently in my 4th year. I am in constant pain with zero pain free days. I have gone from productive and independent to almost totally bedridden. The isolation and depression are profound. I have tried everything and anything to try and break this migraine with no success. My only known trigger is weather changes. Many thanks to the author and other commenters for letting me know I’m not alone, and for suggesting different distractions. I use simple computer games on my tablet to distract myself (I have adjusted the brightness level) and have an immediate family member who does not agree with this and believes the migraine is due to using my tablet! This is a constant cause of guilt and shame for me because this method of distraction has gotten me though my worst days. I’m unable to watch tv or read due to severe light & sound sensitivity, nausea, vertigo and vision changes. Thanks for the much needed hope and support everyone has provided on a day that I desperately need it.

  • Teresa
    4 years ago

    I also use computer games as a distraction from the pain, usually solitaire. Initially, my husband did not understand how I can play games when I am in so much pain. He is now in constant pain as well from a failed back surgery, so he understands better now that we do anything we can to think about anything other than the pain.

  • unstablegirl
    4 years ago

    Thank you so much, Holly, for your wonderful advice and support. Your words touched me, and I will instead concentrate on being kinder to myself. Thank you!!!

  • Holly H.
    4 years ago

    You are not alone, sweet girl. As an older person with years of intractable migraines, 24/7 aura on most days, and past stroke-like neurological events from migraines, I have years of experience that this is just too outside the box for most people — and some of those people just are not going to react graciously to what is outside their box of understanding. I encourage you to “speak” kindly, gently, and with understanding in your inner thought-life because migraine is by its nature isolating… and you are your best advocate to find what works for you in your level of functionality in a moment-in-time.

  • Holly H.
    4 years ago

    Two years into this intractable migraine with aura, I agree that distraction is an absolute must for me as well; 24/7 of aura on most days demands some “relief” with distractions. Perhaps someone might find useful from a few that I use: Our library has a wonderful “books by mail” program and I order large print books, Kindle’s adjustable to large font (books are free to fairly inexpensive from time to time), Netflix movies or TV shows, trying to find such that do not overwhelm (mostly Netflix because flashing lights and pictures on regular TV and commercials just make matters worse), and one of my favorites when my eyes are not working well is the library’s books on CD; also I enjoy a few simple computer games, and Pandora One has built some quiet or mellow stations. I do like to do simple crafts, but eyesight and concentration are just not consistent enough for any period of time right now; but I look forward to doing these again at some future time.

  • not another headache
    4 years ago

    Thank you for sharing this. I am coming off of a terrible migraine that started with extreme pain, nausea, and I’ll omit the rest. I remember hearing people say they had migraines that lasted three or four days. Now, I believe them because this is day four and it is not the first 4-day attack I’ve had. Now, my head only hurts mildly, but I am so exhausted following a visit to the neurologist for an infusion of medications to stop the pain. It is my spring break that I have looked so forward to, now I’m just sitting at home. I cannot lay quietly, and I have to have the tv to help mellow me out. Since I do not hurt, I “should be” well and ready to go, but my body and head says, “REST.” This disappoints my family. I plan to search out for a pain specialist and therapist. I need help! Thanks for the information and support!

  • Sandy
    4 years ago

    thank you for validating my need for distractions from the pain. when i can not sleep, it is very hard to sit or lay in cold, dark, quiet room and do nothing, especially when breathing hurts. I try to pray or mediate, but with for 6-12 hrs of intense pain of level 6, it is hard to pray/mediate for that long. I don’t think nuns pray for 6-12 hrs straight without a break. so many people do not understand this. Even if I can not hear all the words, it is ok, I get the general idea.

  • labwhisperer
    4 years ago

    Thank you for this timely article. I have had 14 migraine days in the last 17 days. I’m exhausted-physically and mentally. I too, have had to try meditation, lots of ice and trying to find ways to distract myself from the pain. Lying in one place makes it worse. I now see a therapist to work on the chronic pain issue and the despair I feel when going through theses tough times. My migraines got worse after a head and back injury. Trying to live as normal a life as possible is tough during these times. People don’t always believe you still have a migraine if you are still working or out and about.

  • Sarah Hackley moderator author
    4 years ago

    I run into that all the time: the idea that if you’re out and still functioning, you must not be in that much pain. In reality, sometimes we have to push through it, no matter how badly we feel and how much we’d rather be lying down. I’ve had times when I really shouldn’t have been out at all (too dizzy, etc.), and yet I had to be. Life doesn’t always stop when we need it to. As I say in my book, just remember: You are the expert of your body. Try not to pay attention to negative people or people who question you and your feelings.

  • Jessica Madore
    4 years ago

    This is probably the most helpful article I have read so far on your site in the time I’ve been a member and it’s been quite a long time I’m sorry to say. I’m a chronic migraineur and often have periods of intractable migraine lasting days and weeks at a time. I can relate to every point in this article and the suggestions are great and I’ve found most of them I currently find myself doing and will be trying the new ones. Thank you so very much for sharing your insight. Often times so many people offer advice that’s so run of the mill and well let’s be honest, just plain useless for most that I hardly take the time to entertain them, but these suggestions are spot on, at least for my particular migraine situation. I often can’t lay down, sit still or be in silence. I need a tv or computer dimly lit just to draw my focus off the pain. I’ve also learned to find several hobbies I enjoy that take different levels of dexterity depending on the severity of the pain I have I can find which craft/hobby I am currently able to do without aggravating my symptoms.

  • Sarah Hackley moderator author
    4 years ago

    Jessica, I am so glad the article helped. It’s so nice when we find a new perspective or something helpful, especially when we really need it. And, I thank you for your comments. It’s nice to know I’m helping. 🙂

    Sorry for the late response. Life gets crazy sometimes, as I’m sure you understand.

    – Sarah

  • Jessica Madore
    4 years ago

    This is probably the most helpful article I have read so far on your site in the time I’ve been a member and it’s been quite a long time I’m sorry to say. I’m a chronic migraineur and often have periods of intractable migraine lasting days and weeks at a time. I can relate to every point in this article and the suggestions are great and I’ve found most of them I currently find myself doing and will be trying the new ones. Thank you so very much for sharing your insight. Often times so many people offer advice that’s so run of the mill and well let’s be honest, just plain useless for most that I hardly take the time to entertain them, but these suggestions are spot on, at least for my particular migraine situation. I often can’t lay down, sit still or be in silence. I need a tv or computer dimly lit just to draw my focus off the pain. I’ve also learned to find several hobbies I enjoy that take different levels of dexterity depending on the severity of the pain I have I can find which craft/hobby I am currently able to do without aggravating my symptoms. There is just one thing I have yet to conquer and that is letting myself actually rest after the migraine finally breaks. In my head I know I should but I’m always so glad the pain is finally down that I want to get up and go. If I could just master that self control a little bit better my migraine tool kit and routine would finally be perfectly in place.

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