A Migraine Sufferer’s Year Long Journey on Aimovig
In October 2018, I signed up for the Bridge to Commercial Coverage program for Aimovig. It offered twelve free doses until my insurance carrier approved. My neurologist started me off with one 70mg dose. The program even offered a nurse to come to my home to help me with the injection. Even though I’m a wimp when it comes to shots, it wasn’t that bad.
That first month, I didn’t notice much difference. But by the second dose in November, my migraines reduced from 6 to 2.
My last migraine on record was November 27, 2018. After that, they disappeared completely. It was a miracle. Since I started getting migraines eight years ago, this was my first ray of hope.
My neurologist was amazed. He said most of his patients reported a significant decrease in the number of migraine days, but I was one of the few who actually had no migraines at all.
Fast forward to October 2019.
I continued to be migraine free but I started noticing things. I didn’t connect it with Aimovig. Not at first.
My hair started shedding in clumps. I had no idea why since I hadn't changed anything in my diet. I wasn’t on any other medications.
I also noticed my gut was bothering me. Every time I ate something, I felt bloated. I kept waiting for these issues to subside but they only worsened. The hair loss continued to my dismay. I was constantly bloated with severe constipation. I was miserable.
When I told my neurologist my symptoms, he said he had a patient who complained of the exact same things: hair loss and severe bloating and constipation. I was relieved. I feared he’d say “it’s all in your head.” He suggested taking Aimovig every other month.
Stopping my Aimovig treatments
After much back and forth, I decided to stop the medication altogether. My neurologist reassured me that I can always go back on if my migraines return. I can take naratriptan if I do get a migraine as that usually helped in the past. He was understanding and compassionate. I’m very grateful that he’s on my side and supportive of my decision.
Am I scared to stop Aimovig and risk the return of the debilitating migraines? Absolutely. I finally had my life back. I no longer had to worry about booking trips with the fear of “what if I get a migraine?” taunting me. I was able to stick to the plans I made with friends. I had returned to work and was able to write more regularly.
Now that’s all up in the air. It’s almost worse than if I hadn't ever started Aimovig. I had a taste of what my life could be. A “normal” life and now it might be taken away again.
But I’m tired of feeling like my gut is in knots all the time. It’s brought on other issues like fatigue and loss of appetite. I don’t want all my hair to fall out.
I realize it’s not a choice everyone would make. My mom doesn’t understand it. She’s doing quite well on Aimovig. She started the medication at the same time as me and has no side effects. Her migraines haven’t disappeared completely but she’s able to manage them better.
I will continue yoga, meditation, and acupuncture. I will wait and see if my hair stops shedding and for my stomach pains to subside. I can’t let my anxiety take over or dwell on “what if?” There really is no other way to be on this journey other than hopeful and positive. It’s up to each one of us to make the best choice for ourselves and only we can decide what that choice is.
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