The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine.
Guys. This is huge. The FDA just approved the first-ever drug designed specifically to prevent migraines! The cons are that it’s not as effective as many would prefer and it’s very, very expensive, but the pros are that we finally have a drug aimed at our actual disease instead of a bunch of drugs for other stuff that just happen to help with migraines some of the time for some people.
I have an appointment with my migraine specialist on Wednesday, and I’m definitely going to discuss this with her. Unfortunately, as mentioned, my insurance probably won’t cover it. And it’s nearly $7,000 per year. From The New York Times:
The drug, Aimovig, made by Amgen and Novartis, is a monthly injection with a device similar to an insulin pen. The list price will be $6,900 a year, and Amgen said the drug will be available to patients within a week.
Aimovig blocks a protein fragment, CGRP, that instigates and perpetuates migraines. Three other companies — Lilly, Teva and Alder — have similar medicines in the final stages of study or awaiting F.D.A. approval.
Millions of people experience severe migraines so often that they are disabled and in despair. These drugs do not prevent all migraine attacks, but can make them less severe and can reduce their frequency by 50 percent or more.
I personally have tried just about every drug used for migraine prevention, separately and in various combinations. I’ve dealt with all the side effects the Times article mentions (“mental fogginess, sedation, weight gain, sexual dysfunction and dry mouth leading to cavities”), plus many more.
Here’s a short list of treatments I’ve tried since 2008 and their side effects:
- Topamax/topiramate (anti-seizure): Aphasia (forgetting words, trouble finding words), makes soda taste bad, upset my stomach to the point I couldn’t eat, loss of potassium/eye-twitching
- Zonegran/zonisamide (anti-seizure): Aphasia, makes soda taste bad, reduced appetite causing unhealthy weight loss, made my limbs tingle and go numb, loss of potassium/eye-twitching
- Effexor/venlafaxine (anti-depressant): Major insomnia, sexual dysfunction, literally made me feel insane and like I was crawling out of my skin, heart palpitations
- Elavil/amitriptyline (anti-depressant): Dry mouth
- Neurontin/gabapentine (anti-seizure): Weight gain, swelling, drowsiness, loss of potassium/eye-twitching
- Verapamil (calcium-channel blocker for blood pressure): Dangerous swelling in joints, especially ankles and feet (to the point my shoes didn’t fit)
- Pamelor/nortriptyline (anti-depressant): Weight gain, insomnia, fatigue/drowsiness (oh, the irony!)
- Prozac/fluoxetine (anti-depressant): Weight gain, increased anxiety
All these drugs have sucked, and most have been ineffective. Prozac seems to be the most effective, but the weight gain and increased anxiety makes my life difficult in other ways. And of course, it’s not perfect. I still have around 2 severe migraines per week.
It’s likely that because I’m in a decent (for me) place with my migraines right now (only 2 severe migraines per week instead of 3-5!) and because of the cost and newness of the drug, my doctor will keep me on the treatment regimen I’m on. This consists of two anti-depressants (Prozac/fluoxetine and Pamelor/nortriptyline), a B2 supplement and Co-enzyme Q-10. As the Times article mentions, the side effects of the two anti-depressants have been 50+ pounds of weight gain, along with insomnia and increased anxiety.
But whether or not my doctor and I decide to try Aimovig, the fact that pharmaceutical companies spent money and time researching and developing a migraine preventive is fucking huge. With further research and development, I’m hopeful this class of drugs will be made more effective, that they will study long-term effects, and that people like me and 37 million other Americans might actually get a treatment that works.
Want to help make this happen? June is National Migraine and Headache Awareness Month, and I’m going to — *gulp* — run to raise funds for migraine research through Miles for Migraine. I’ll post more details about my running plans in a later post, but you can still support my efforts in the meantime through my fundraising page.