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Hanging in There: One Patient Advocate’s Story of Chronic Migraine

On January 8, 2012, I sobbed and screamed for hours. I did not know how I could continue living with the constant horrendous pain and gut-wrenching nausea. I was sick of having a life that was nothing but unending severe migraine attacks. Having moved from Boston to Phoenix for more stable weather in November 2010, the migraines were actually better than they had been two years earlier. I was no longer having daily level 8 or 9 (and sometimes 10) pain — and was devastated that I was “better” but that wasn’t good enough.

I had spent a couple days before that imagining how I would commit suicide and planning my funeral, but ultimately decided I could not take my own life. Instead, I wished for cancer that I could leave untreated, thus achieving the desired result without having to actually kill myself.

That was not the first time I’d contemplated my death as a way to escape migraine. Not even close. The thought had crossed my mind so many times in the previous nine years that at one point I practically begged a psychiatrist to put me in an in-patient unit. It is not that I didn’t want to live, but that I didn’t want to live with migraine.

I know intimately what day after day of unrelenting migraine is like. How it seems like the pain will never let up. The bleak outlook that settles in when it seems like you will never again enjoy a child’s laugh, a glance at the sky when the sun is shining, the smell of a flower. And I mean that literally, not in some poetic writer’s phrasing, as the heightened senses of migraine transform sounds, sights, and smells from ordinary experience to knife-like pain.

After 10 fruitless years of seeing countless specialists, attempting numerous conventional and alternative therapies, and trying more than three dozen preventive medications, I finally hit on something that reduces my pain. With a daily dose of 1,000 mg of magnesium and 12 mg of cyproheptadine, the daily pain went from a level 7 or 8 a year ago to a typical high of 4 or 5.

I am now 36 and, though a few years ago it seemed impossible, I can now go to yoga, meet friends for dinner, and host game nights. I still have weeks relegated to the couch, still have to cancel plans, still have to stay in bed while my husband hosts friends in our messy house. I am still not living the life I thought I would before migraine horned its way in. I don’t think I ever will, but I can live a full, rewarding life around migraine.

“I am here,” the mantra I mentioned in Showing Migraine Who’s Boss, encompasses all of it: I am here for the painful, frustrating parts of migraine and life; I am also here for the reprieves. Knowing what I do about migraine, my future likely holds more horrendously painful stretches. Nonetheless, I show up for all of it. The good parts are just too good to miss.

Please know that you are not alone in the sometimes relentless misery of chronic migraine. It may feel like you’ve tried everything, but there are always more options. Finding the right treatment can feel like endless trial and error, but hang in there. You will find something that helps. Fellow patients and patient advocates at Migraine.com can help you through the tough times. If you are considering suicide, contact the National Suicide Prevention Lifeline at (800) 273-8255.

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

  • Janet
    7 years ago

    Kerrie,
    I feel your pain literally…..I have suffered 37 years. At age 36 I was 16 years in…and now 11 years later this is the worst I’ve ever been. I’m coming up to a year since DHE treatment. What a complete and total failure, not to mention side effects I still experience today. We moved from Chicago to Las Vegas 20 years ago for our children’s health..and for a while I improved..but it was so shet lived. As you wrote…you either live around the migraines…but I’ve been in bed with the worst migraine I’ve had since DHE …going on day 3 alone…and we’ve just relocated to Atlanta to be near family. It’s been horrific since moving here 7 weeks ago. Visiting for weeks at a time in the past year I did better….

    The suicide contemplation…been there also….you get very overwhelmed with living unfulfilled days..days full of pain you can’t find a word to describe.

    Kerrie, I have shared every article you’ve ever submitted to friends and family because it sounds different coming from you…they’ve all,heard it from me…but when there is someone else just like me out there putting their life, their days to words…you’ve made many in mylife more understanding….so I humbly thank you.

    Blessings
    Janet
    Douglasville GA

  • mjsymonds
    7 years ago

    Kerrie, Thank you for sharing your story and the way you have endured in spite of migraine disease. I am so glad you have finally found something that helps reduce your pain enough that you can live your life again. If you don’t mind me asking, do you take the magnesium alone or along with other supplements (like calcium, vitamin D-3 or zinc)?

  • laalaa81
    7 years ago

    Thank you so much for sharing your story. Reading it made me cry by how closely it resembles my own, unfortunately my partner has difficulty dealing with the limitations of daily level 8-9 pain always seem to bring into my life. Most of the time I hope that this set of med’s will make things a little more bearable, keeping positive for my kids and loved ones as they try to make the best of a bad situation. I’m practically blind outside these days unless I have some heavy duty shades and a set of ear plugs close at hand in case it gets too loud. I’m constantly drained from the energy it takes just to function on a normal level. Its nice to see others find a little light in the dark, it means I will too someday 🙂

  • Jenna
    7 years ago

    I am so sorry to here about your chronic migraines. I have dealt with a similar situation for 14 years. It can be hell…a hell that most other people don’t understand at all. I have struggled with suicidal thoughts as well. You said it well: “It is not that I didn’t want to live, but that I didn’t want to live with migraine.” I can relate to this very much.

    The endless trials of different medications/approaches/interventions become exhausting and exasperating. I’m trying to keep optimistic and hopeful. I don’t want to give up. I am grateful for a website like this where we can share our stories and hopefully stumble upon a helpful tip or piece of advice.

    I hope you continue to find relief and that one day your migraines will be a thing of the past. Thank you for sharing your story.

  • body
    7 years ago

    Happy to see that you found something that helps. I have never contemplated suicide but I have prayed to God that “if he was going to take me, make it quick”. Those were the days I thought my head was going to blow apart from the retching with the vomiting. Like you I have found something that works for me and has given me back my life. In my case, acupuncture, along with a healthy diet and a change in my lifestyle to include biofeedback and meditation has been a life saver. A great story to share. Thank you.

  • thomas51
    7 years ago

    An all too familiar story and one every sufferer can empathise with, it’s good to hear that the pain intensity has been reduced in this case. Magnesium helps relax muscles, calcium helps them contract and you don’t want contraction with migraine! If you can identify specifically if there is muscle involvement in your migraine and which muscles in the face – usually temporal – chewing / bruxism and corrugator – frowning/emotional you should be able to significantly reduce the problem again just by working on keeping them relaxed by identifying what makes them contract and addressing this. You can identify if you have bruxism (triggered by stress/anxiety) by opening and closing your jaw – if you hear a clicking or grinding sound as you perform the action – that is a classic sign of bruxism, if you have this problem a search on Dr Jim Boyd – who invented a hard mouth splint specifically for the problem related to migraine – will help you.

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