Breaking Out of the Migraine Prison

Breaking Out of the Migraine Prison

“I want out” is a common mental refrain when my migraines are dragging me down. I daydream about unzipping my skin and stepping out of this body (not that ridding myself of my skin will do anything to change my nervous system, where migraine resides, but it’s a fantasy). I think of how accurate it was when a friend told me I must feel like I’m caged by migraine. And I hate that this is the body that I have, that migraine controls everything I do, that my life is so drastically diminished by an illness the majority of the population thinks is “just a headache.”

I know these thoughts aren’t helpful or productive. I know that I cope best with migraine when I accept that it’s a part of my life, one that I’m trying hard to change, but omnipresent nonetheless. Hating migraine and resisting it only get me down. And yet, sometimes I can’t help these thoughts.


I’d been mired in such thoughts for weeks, but they came on extra strong during a craniosacral therapy session that is best described as deeply meditative. Thinking “I want out” led my mind to the metaphor of migraine as a prison. I thought about how an actual inmate may want out of prison, but that thinking so doesn’t get them released any sooner. In fact, dwelling on the freedom they can’t have likely worsens the emotional turmoil. Migraine is no different in that regard. Focusing on wanting out doesn’t help me cope with this life that I have, it only makes me unhappier.

Recognizing this brought an onslaught of tears. I let the tears flow instead of trying to stop them or apologizing to the massage therapist. She responded by wiping away the tears before they pooled in my ears and stroking my face gently. It was the loving gesture of a mother to a child and made me feel worthy of love and compassion in a way I haven’t been able to accept in years. Over and over, I told myself how tough I am to live with chronic migraine and that letting another person, one I’d only met once before, see the depth of my emotional pain took tremendous strength.

What an incredible catharsis. These revelations will not be a cure-all, nor will they permanently eliminate my frustration with migraine. But they will help me move through each day more easily with a love and compassion for myself that’s been long absent. I am not a prisoner to migraine or to my thoughts. I cannot escape this illness, but I can choose to live as fully and richly as possible within it. That’s my choice.

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

View Comments (29)
  • TinaFo
    4 years ago

    Prison is a good way to describe it. I walk around with migraines alot and try to function normally. I typically do not tell the ones around me that I have yet another migraine (unless it’s an ER room visit quality one). I feel like my family and friends think I’m being ridiculous and don’t believe that I could have so many migraines all the time. One person said to me once “if you have a migraine, how can you even function right now” as if implying that I was lying? I feel the need to hide them when I can. You can’t stop being a mother, a wife, a friend, an employee etc when migraine attacks. I have a
    high pain tolerance so I do what I can for it and tough it out until I can go to
    bed and pray it’s gone by morning. My husband can now tell when I have one when I don’t tell him. He can tell by my speech. It becomes slow and I mix up words.I almost sound drunk. I would love to be migraine free. I want out of migraine prison too:(

  • Janet
    5 years ago

    Kerrie,
    I can only mirror shroomgirl’s comments.

    You write what’s on my mind and in my heart. I thank you for reaching out to me the times you have when I was desperate.

    Blessings
    Janet Jones

  • shroomgirl
    5 years ago

    I just wanted to say that everytime I click a link to an article on here that I totally relate to, it is written by Kerrie Smyres! I often don’t have the words to express the myriad of emotions that my migraines bring up and luckily I don’t have to. I have shared your articles so many times with family and friends so that they can understand a little bit more what it is like. So thank you, Kerrie, for putting my emotions into words.

  • Kerrie Smyres moderator author
    5 years ago

    Thank you for telling me that. You made my day. Best wishes on your migraine journey!

  • Jyn
    5 years ago

    There are so many words written here that resonate in my heart that they bring tears to my eyes. Only someone else who deals with chronic migraine can truly understand the pain and isolation of dealing with something that is so disabling and yet not very visible to others. We appear normal to everyone and yet struggle everyday just to exist within the parameters of what comes natural to everyone else. It is truly a “prison”.

    I have been dealing with migraines for 33 years now. They first began during my first pregnancy and started as “let down” headaches every weekend. Over the years they have increased and decreased in frequency only to cause me to lose out on the opportunity for advancement within companies and in the last ten years to lose my last two positions as a Payroll Advisor. They have been chronic now for about ten years and I finally reached the point that I could no longer battle daily against them and continue to work; so I am now on disability at age 54.

    I have tried every medication the doctor and neurologists have suggested; physiotherapy; acupuncture; chiropractic; hypnosis; botox and am now going to try intracranial nerve injections in February. I basically live on narcotics daily, starting at 5 in the morning with the first set of drugs; just to be able to get up and function by 8 or 9. I sleep nightly with ice packs and switch them out during the night as they become warm against my head and lose their effectiveness.

    My dream is a life without headache and medication. I can not believe that people choose to put drugs into their bodies when we have no choice and would do anything not to have to.

    I believe that as bad as it is, there is always someone suffering more than I am in life. I know that this is little consolation, but I try to live each day the best I can. After dealing with this disease for so many years, I am finally coming to terms with it being a constant in my life and have had to accept my own limitations and extend those limitations to what others expect from me as well.

    My love to you all. I know how alone you can feel;despite being surrounded by others. This forum lets me know that I am not alone. Thank you.

  • Kerrie Smyres moderator author
    5 years ago

    Thank you for sharing your story. I so agree with what you said about coming to terms with migraine as a constant in one’s life. Once I accepted that, it became easier to live with migraine and to create a happy life even with chronic migraine. Take care of yourself.

  • Val Frost and Bubbles
    5 years ago

    Hi everyone. At 64, and having been in “lockup” since the age of 12 with CMD, it becomes an invisible item on my daily “things to do” list. Therefore, as it is a “life sentence”, I am content to resolve myself to it, and to make my “cell” as “tranquil” as possible, my life as “stress-free” as possible, and as the choice made in the movie Shawshank Redemption – “Either get busy dying or get busy living.” I have chosen to get busy living, and so should we all. Either we have the migraine disease, or it has us. Flexibility. Fortitude. Positive thinking. Hope. God bless us, everyone. My huge Newfoundland service dog and my 4 cats, all from rescue – are my therapy clinic. Val and Bubbles, with love, respect and full support always.

  • Kerrie Smyres moderator author
    5 years ago

    Thanks for sharing your perspective, Val. I’m with you 100%. I’m so glad to hear your rescue pets are such a balm for you. Take care.

  • bluebird
    5 years ago

    I too recently visited an old friend and colleague who does cranial sacral work. I trust her completely. I took the opportunity to release feelings of guilt and remorse for things I have done and things I regret having not done….to find relief from whatever prison I may have created for myself….and that was good. I feel better for it. But my brainstem with aura chronic daily migraine syndrome is no better.
    I have moved to an island where I can occasionally drive safely and the natural environment is peaceful and not too stimulating. Now, it’s comforting, insulating location has turned into a sense of cultural deprivation. A mixed blessing. I am grateful for the nurture of Nature and enjoy it whenever I am free enough of Migraine to experience Beauty and the spark of the circle of Life. Those moments are Precious and Rare.

    I feel most in Prison when I prepare for a social event…like a book club. I struggle to read the book on time and get dressed and ready to go. I arrange for a ride, because I don’t trust myself to drive there and back safely. And by the time I am to leave, I just can’t. My face has gone all asymmetric. My speech is dysarthric. My thinking is slowed and I am not fit for a Social function.
    I know how to tell folks about my condition, gracefully. I am just tired of the whole deal. So I stay home. I can’t read. I don’t care about TV. And even meditating is too much. Taking a bath is too much.
    The drugs haven’t helped and I am have had good doctors.

    That is when I feel like I am in prison. And no version of ‘You create your own reality’ and exhortation of compassion for the self… works. Sometimes all I have is a return of Focus to the Breath. and the knowledge that the worst part will eventually change. I know I am not alone with suffering. I breath In and Out with those who are suffering and know that I am not alone. Sometimes that is the best I can do.

  • Kerrie Smyres moderator author
    5 years ago

    I definitely get what you mean that sometimes it’s just too much — too much to try to find a silver lining, too much to make future plans, too much to even remember life without debilitating migraines. I also take comfort in breathing. It’s amazing how something so simple can offer comfort when nothing else can. Sometimes there’s just this breath, then the next breath, then the next until a new day begins.

    Have you listened to or read any of Pema Chodron’s work on lovingkindness? She talks a lot about identifying with the suffering of others. I find her guidance to be insightful and even funny.

    Hang in there.

  • Mary
    5 years ago

    When my migraines are really horrible I have added “new head” on our grocery list. They make me want a new head but one that saves my good my good memories. Drugs, relaxation-imagery-meditation and my ice packs &dark room doesn’t work, a new head seems the solution!

  • Kerrie Smyres moderator author
    5 years ago

    It’s a brilliant idea, but I doubt medical science will be advanced enough for that in our lifetime!

  • TheKimberly75
    5 years ago

    You write my life.
    Every day I say all the above and end with further depression. I fight with myself over what I can and can’t do, and then I argue with myself over the word can’t.
    I just can’t see a way out and I can’t see how I can live with this for the rest of my life.
    I’ve tried it all, done it all. Nothing works but narcotics. Do I go back to living with that?
    What an F-ING choice.

  • Kerrie Smyres moderator author
    5 years ago

    Sometimes the worst part of migraine for me is how much time I spent in my head — more specifically, in my mind, obsessing over what I can or can’t do or how much migraine has taken from my life. I’m sorry to see you’re in a similar place.

    Please keep at trying new treatments. Even when it feels like you’ve run out of options, there are more treatments to try. It took more than three dozen preventives for me to finally find relief (and that doesn’t include all the complementary and alternative therapies I tried). Even better, once I had some preventives that helped, abortives became more effective. I currently feel better than I have in 15 years. There is always hope. Always.

  • marlenerossman
    5 years ago

    I feel exactly the same way. I have been cured of cancer TWICE–melanoma 35 years ago and breast cancer 12 years ago. But nothing and no one can help with my migraines. I have been to 13 doctors of every type and tried 22 medications, with no relief. The only thing that gets me out of prison are the triptans–pills and shots.

    I have a life sentence and it is killing me.

  • Kerrie Smyres moderator author
    5 years ago

    crs, I don’t think you’re doing anything wrong, but there might be a better triptan for you. There are seven different ones and a lot of people can only tolerate and find relief from one or two of them. Unless someone has “love at first sight” with one, I always recommend trying the others to see which one works best and has the fewest side effects.

    A couple more ideas have come to mind, but I can’t stress enough that you should only consider them under a doctor’s supervision.

    Since triptans are either too strong or don’t work for you, I wonder if cutting them in half might be more effective for you. You might even be able to cut some into quarters so you take a half and a quarter for a 3/4 dose. This is only speculation — PLEASE don’t cut any meds without talking to your doctor about it in detail first. Not all triptans can be cut safely.

    Another option might be to take a low dose of a triptan and add some other medications in a “cocktail.” Some doctors recommend taking caffeine (like in Excedrin migraine or a caffeinated beverage), Benadryl, or an NSAID with migraine abortives like triptans, Migranal or Midrin. Again, ask your doctor for suggestions. Mixing the wrong medications together can cause dire consequences (like stomach bleeding and liver failure), so you shouldn’t make your own cocktail.

    I hope this helps you find a more effective treatment. Best wishes.

  • Kerrie Smyres moderator author
    5 years ago

    I’m so glad your cancer treatments have been successful. The knowledge about and treatments for migraine are paltry in comparison to what’s known about cancer treatment. It’s understandable, since cancer can be fatal, but migraine can rob a person of the will to live.

    It’s great that triptans help you some. Keep at trying preventive medications. As I mentioned in an earlier comment, it took me more than three dozen medications to find an effective preventive and I feel better than I have in 15 years.

    Three years ago, I sobbed to my husband that I didn’t think I could live with chronic migraine anymore and wished I would contract a fatal illness so I didn’t have to do it anymore. It’s kind of hard to believe that person is the same as the one I am now.

  • Kerrie Smyres moderator author
    5 years ago

    I’m so glad your cancer treatments have been successful. The knowledge about and treatments for migraine are paltry in comparison to what’s known about cancer treatment. It’s understandable, since cancer can be fatal, but migraine can rob a person of the will to live.

    It’s great that triptans help you some. Keep at trying preventive medications. As I mentioned in an earlier comment, it took me more than three dozen medications to find an effective preventive and I feel better than I have in 15 years.

    Three years ago, I sobbed to my husband that I didn’t think I could live with chronic migraine anymore and wished I would contract a fatal illness so I didn’t have to do it anymore. It’s kind of hard to believe that person is the same as the one I am now.

  • crs0804@aol.com
    5 years ago

    I wish the triptans were a release from prison for me; they knock me out for the rest of the day and, then, I’m awake all night. I’ve gotten used to seeing the sunrise and watching all night TV, particularly on the weekends since I’m guaranteed to have a migraine every Saturday. That means I sleep most of Saturday, wake up by 8 p.m., then I’m awake until 6 a.m. on Sunday morning. Then sleep til at least noon on Sunday. What a fun weekend – NOT! And when I have to take a triptan during the work week – well, let’s just say it is impossible to work a normal 8-5 schedule. (Yes, I’m still trying to work; trying is the operative word there.) Either the triptans are too strong or they don’t work. What am I doing wrong?

  • crs0804@aol.com
    5 years ago

    I have to say that the columns on this website have been such a lifesaver for me. They often reflect so accurately my own feelings and provide that sense of relief that is oh so difficult to find – I realize I’m not completely alone in this battle. I have had chronic migraines since my early 20s (maybe earlier). I’ve lost so much to them and they continue to worsen daily it seems. So few understand the pain, the isolation, the fear, and the anger, including the doctors that I see. Yes, I’m angry at what they have taken from me and I’m afraid of what is yet to come. And I often describe my body as a prison for one – or perhaps as possessed by a demon, since I have no control over it, it seems. But I read these columns and they help me to have hope. I realize there are others out there who understand my struggles and, if they are coping and managing, perhaps I can as well. Thanks so much!

  • Kerrie Smyres moderator author
    5 years ago

    You’re so kind. Thank you for letting us know that the Migraine.com writers are as so helpful for you. As cliched as this may sound, there is always hope and you are definitely not alone. Take care of yourself.

  • az25blue
    5 years ago

    Thank you for sharing this! I am definitely at a point of frustration with my migraines. I finally started seeing a pain management specialist and I’m trying an elimination diet (yet again) to see if it helps. It’s hard to stay positive when you feel like you’ve run out of options. But your post has given me a much needed boost.

  • Kerrie Smyres moderator author
    5 years ago

    I’m so glad it was helpful for you. It can feel like you’re banging your head against a wall trying treatment after treatment, but there are always more options. You never know what might help, it could be reiki or Chinese herbs or an old antihistamine that’s prescribed for children with migraine.

  • simplygourdjus
    5 years ago

    UNBELIEVABLE !! I just had a visit with my Rehab Pain Doctor on Thurs (Jan 9th). I told her that I was tired of feeling like I was in prison & that I’ve decided to finally stop looking back on what I’ve lost with having Chronic Migraines. I said: It’s a new year & I have to accept that this is just another chapter of my life that I have to live through. I told her “that it was time for me to start loving myself again!”. I have a Physical Therapy session weekly ( for now ). I had never heard of Craniosacral therapy before reading your post/blog. I’m going to look into it & see if it available for me. Thank you very much for your posts containing good information & helping me know that I’m Not Alone in this fight. 🙂

  • Kerrie Smyres moderator author
    5 years ago

    slhart, not feeling qualified to make that decision doesn’t sound stupid at all. Assessing the pros and cons of a treatment, especially one with a 50% success rate, is always difficult.

    Even when it feels like you’ve run out of treatments, there’s always something new to try. I feel like I’ve hit a wall countless times, but finally find a helpful preventive and feel better than I have in 15 years. Hang in there!

  • Kerrie Smyres moderator author
    5 years ago

    I’m glad the timing was so good! Not sure if you’ve seen it yet, but I wrote more about CST: http://migraine.com/blog/craniosacral-therapy-for-migraine/. I imagine the experience has a lot to do with the practitioner, so ask around for recommendations, if possible.

    Best of luck in your next treatment pursuit. You are definitely not alone.

  • Kerrie Smyres moderator author
    5 years ago

    I’m glad the timing was so good, simplygourdjus! Not sure if you’ve seen it yet, but I wrote more about CST: http://migraine.com/blog/craniosacral-therapy-for-migraine/. I imagine the experience has a lot to do with the practitioner, so ask around for recommendations, if possible.

    Best of luck in your next treatment pursuit. You are definitely not alone.

  • Kerrie Smyres moderator author
    5 years ago

    I’m glad the timing was so good! Not sure if you’ve seen it yet, but I wrote more about CST: http://migraine.com/blog/craniosacral-therapy-for-migraine/. I imagine the experience has a lot to do with the practitioner, so ask around for recommendations, if possible.

    Best of luck in your next treatment pursuit. You are definitely not alone.

  • slhart
    5 years ago

    I’m convinced that a new head is the answer =] I am tired of feeling like a victim. I too have lavished up my cell. I’m most comfortable there as opposed to being around people and having to explain why I feel like crap. I do try to force myself into the world now and then so I don’t totally lose all sense of reality.
    I’ve tried almost everything including Craniosacral therapy and nothing helps. I’m thinking about trying Sphenopalatine nerve blocks but it looks scary on Youtube and my insurance does not cover it. I have to ask myself if $1500.00 is worth a 50% chance that it will work and consider the fact that it is an ongoing treatment plan with no end date. It may sound stupid but I don’t feel qualified to make this decision?? Thanks for sharing this post and encouraging me to make lemonade out of all the lemons being thrown at my head =]

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