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.

Miss Migraine: Migraine sun vs. migraine moon

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The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine. This post appeared first on my blog of the same name on August 11, 2012.

Migraine moon revolving around Person earth

Sketch by Kelly Lynn Thomas, 8/2012

I’ve hung this sketch on my wall, right next to my computer, to remind me that migraines don’t control my life: I do. If you’d like to repost or share it, feel free to. I only ask that you give me credit as the “artist” and post a link back to this site. And of course, if you’d like to print it out and hang it on your wall, I’d be completely flattered.

Miss Migraine: Emergency room averse

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The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine (and other crap).

Saturday I had to go to the emergency room. I’m fine now, but I experienced a sudden and extreme pain in my lower right abdomen that was anything but normal. In this situation you’d think my biggest concern would be OH GODDESS AM I GOING TO DIE THIS FUCKING HURTS, but no. My biggest fear was that they’d tell me there was nothing wrong and I was “exaggerating” my pain or something like that.

I knew something was wrong. The pain started out like a bad menstrual cramp but quickly escalated to “I cannot stand up straight my insides are on fire what is happening.” The pain was definitely in my right ovary, and I thought perhaps a cyst had burst (nope–endometriosis, but I was right about the ovary part). Probably something you should go see a doctor about, right?

But so many times I’ve seen a doctor, or gone to the ER with a severe migraine that’s lasted five days, and they’ve said “Oh, it’s just stress, here are some muscle relaxers/Vicodin.” (Muscle relaxers and narcotics, by the way, don’t help migraines. At all.).

Or I’ve gone and said, “Hey, you can look this up on your fancy computer because we live in the future and all my medical records are digital, but my migraine specialist said I should go to the ER if X happens, and X has happened, and she’d like me to get an MRI,” only to be told “Whatever, it’s just stress, but we’ll do a CT scan just to be sure!” Real helpful, doc.

Once, before I was diagnosed with chronic migraine, an ER doctor pressed so hard into the back of my neck I started crying. I went in because I’d had a headache for a month straight, and none of my regular doctors had any ideas. Urgent care wasn’t a thing yet. He was trying to “prove” I had a tension headache and just needed to “relax.” Nevermind that neck pain and soreness is often a symptom of migraine, AND ALSO he pressed so hard it would have hurt even if I didn’t have a migraine!

ER doctors, especially male ER doctors, have a history of dismissing my pain and not listening to what I say about my own body. So, you can understand why I was hesitant to go to the ER despite the awful stabby pain in my right ovary.

Thankfully, and to the credit of the staff at UPMC Shadyside, the doctors who treated me listened, were kind, and even *gasp* got me a diagnosis. So, bad news–I have endometriosis. But good news–my ER experience didn’t lead me to murder anyone! The next step is to follow up with my lady parts doctor. In the meantime, I’m still in some pain, but no where near the level I was on Saturday.

Onward, I guess?