Miss Migraine: FDA approves first true migraine preventive

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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.

#PhotoFriday: Clematis in full bloom

Growing up, my mom had a purple clematis in our front yard. Every year it would grow up our porch railing. Along with the johnny jump-ups that popped up every spring, the clematis was my favorite flower.

When I rented my first house, I bought a clematis bulb and grew it in a pot for a few years. It did okay, and I transplanted it to my yard when we bought our house. It’s grown exponentially over the past three years! It’s now a very happy plant, and every spring when it blooms it reminds me of home.

a purple clematis vine

What flowers or plants remind you of home?

#WeekendReads: Night Beast by Ruth Joffre

The past two weeks have been a bit weird. I’ve been spending a lot of time with Lexi and out in my garden. My anxiety is high right now for a number of reasons, so I’ve also been making time to sit on my porch and read in the evenings. All of this helps, but it’s still a process. It will always be a process.

Thankfully, there are books. Reading centers me, grounds me, makes me feel connected to my innermost self (the self that I can only really express through writing fiction). Recently, I was lucky enough to receive a digital ARC (advanced reading copy) of Ruth Joffre’s debut short story collection, Night Beast and Other Stories.”

cover of Night Beast

I blew through this collection. I inhaled it as if it were air. It is so, so good. You can read my full review on the Ploughshares Blog, but here’s a snippet:

Reading this collection feels like looking at the world through water—the angles don’t quite match what you expect and the light is diffuse, except when a ripple catches it and momentarily robs you of vision. Joffre’s characters are wispy and insubstantial in the way ghosts of past selves feel when we look back through the haze of time. If you turn your head or look away, they will shift into something else, something new. Something dangerous.

Joffre is one of those writers who makes me go “I WANT TO WRITE LIKE THAT!!” I read this collection once for the journey it took me on, but I will definitely read it again for the craft lessons hiding in its pages (some of which I do address in my review).

If you like strange, queer, unnerving, mysterious fiction with a bite, you absolutely have to read Night Beast and Other Stories. That is a non-negotiable fact.