Miss Migraine Runs: Part Two

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The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine. June is National Migraine and Headache Awareness Month. Help me raise $300 to support migraine research and awareness!

Despite my runner’s knee not really being cleared up, we decided to wake up at 5 a.m. and resume our 5k training program this morning.

Despite painful knees, I’ve tried to still do some form of exercise 5 days a week, whether it’s going for a walk or using the elliptical.

I am not a morning person. Never have been, probably never will be. I’d much rather run at 8 or 9 p.m. than wake up before the freaking sun rises. But, I’m getting ready for a monologue show in a few weeks, and I’ve got evening rehearsals all this week and next week. Early morning is the only time we could run, so that’s what we did.

And hey–it wasn’t as awful as I expected it to be! Waking up was easy enough. I laid my running clothes out last night, so all I had to do was pull them on. I ate an apple, leashed up the dog, and off we went.

Over the past three months, I’ve increased my overall activity level. Each bar represents a week’s worth of steps.

This week the program has us running varying intervals of 90 seconds and 3 minutes. The first set of runs were fine. My knees ached a little but it wasn’t bad. But then we did the second set, and I definitely should have stopped because it felt like my knees were on fire. But I am stubborn as fuck, so I finished the workout and then spent a good long while icing my knees. Surprisingly now they feel pretty okay, which means I’ll probably be stupid and run again Wednesday morning.

Running and walking has also been helping me with the grief of losing my corgi dog Lexi–it’s not that I miss her less or feel less sad, it’s just that being outside and working my body provides a good expression for those emotions. I think it’s helping Jaina cope, as well.

Now I just need my knees to stop hurting!

 

Miss Migraine in the Pittsburgh Post-Gazette

Banner that says "The Adventures of Miss Migraine"

The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine.

After my last post about Aimovig, the first-ever drug designed specifically to prevent migraines, the Pittsburgh Post-Gazette contacted me about doing an interview with them. You can read the full story on the P-G’s website! Here’s a snippet:

“I can’t even conceptualize what’s it like to not be in constant pain,” said Kelly Lynn Thomas, a patient at UPMC. “So, the possibility of having time where I’m not in any pain is mind-blowing.”

For years, Ms. Thomas, 31, of Spring Hill-City View, has written a blog “The Adventures of Miss Migraine.” The most recent post features the new drug. “Guys. This is huge,” she begins.

I was thrilled to be able to help shed some light on this important issue, and am so glad Aimovig is getting so much press.

Now, I have an ask. Help me raise $300 to support migraine research and awareness!

Last week I started the Couch 2 5K running program. Exercise is a good tool in the migraine management tool box, but it is unfortunately also difficult to get started because, well–migraines sap your energy and suck the life out of you, and exercise tends to trigger them. So far I like the C25K program because it starts out slow and alternates running with walking for the first few weeks.

While I am already feeling the benefits of regular exercise (I really do have more energy!), I’m not just doing this for me. I’m running to raise funds for migraine research as part of migraine advocacy organization Miles for Migraine’s June Virtual Challenge.

I won’t be ready to run a full 5k by the end of June, but I’ll be halfway there. I’ll continue running in July and hope to run my first 5K in August or September. Throughout June, on non-running days, my goal is to at least go for a 30-minute walk and/or attend a yoga class. Starting June 1st, I’ll post weekly updates here about my progress.

Here’s how you can help this June and beyond:

  1. Make a donation through my fundraising page.
  2. Share my page with your social networks.
  3. Reach out to someone living with chronic migraine and let them know you care. If you’re able, offer to do something nice for them, or send an encouragement card or small token (just lay off smelly lotion or candles, as perfume can trigger migraines).
  4. Share the Post-Gazette article with your networks to help spread awareness of how difficult, isolating, and depressing chronic migraine can be.
  5. Ask your health insurance provider if they plan to cover Aimovig, and when. If they say no, ask why not and reaffirm how important this drug is to migraine patients.

I’m also working on some gift ideas for anyone who pledges a certain amount of money, so stay tuned for more on that!

 

Miss Migraine: FDA approves first true migraine preventive

Banner that says "The Adventures of Miss Migraine"

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.