Right now I should be swimming. Instead I sit here with an ice pack on my head wondering if the Sumavel injection I took over half an hour ago will even kick in. Just another day in the life of a migraneur.
Update 5/17/13: I really loathe pictures of myself, but I wanted to capture what my migraine looked like. When I showed my pcp she scoffed that I didn’t look happy and how come my face was so red. In other words, she didn’t “get it”. I decided to add a picture of myself when I’m not under migraine attack. There’s a difference. I like my pcp, but she doesn’t understand my migraines, and it hurt when she said what she did.
Last month I had 24 migraines in 30 days. By migraine I mean anything above a pain level 5 lasting for more than four hours, though for the purposes of record keeping I do count migraines that were cut off at the pass with a triptan. I only “burn” a triptan that early on if I have an important outing to attend or if I know instintively that it’s going to be a scale seven or above.
Yes, I am tired of these. I try hard not to let them define me and yet they do. They keep me from working. They prevent me from living fully. And sometimes it’s hard not to feel like a failure. When I told my doctor that Botox wasn’t working, and I had Twitter friends who had mixed results, she told me all her other patients had great success with it. Ain’t that just grand? I’m not one of them. According to a recently released study, there are other chronic migraineurs who aren’t having luck with Botox® either.
In fact, especially the first month after the injections, I feel worse if that’s possible. The Botox® seems to make the back of my neck stiffer. That generates a storm of self-generating migraines. I wasn’t even aware that having a stiff, sore neck was a side effect from Botox® until I read that study (wish I had a direct link for it; sorry). Prior to reading said article, I thought the sore neck was from pt exercises or sleeping wrong. Now that I’ve had my required second appointment of Botox® injections, I can see clearly how this neck thing plays out.
So here I go, trying to deal, playing medication roulette. Do I try one of my alloted per month triptans? If I do, did I wait too long or will it work? Do I take one of the forbidden Vicoden tablets early in the day? I can really only have one a day if even that. If I take two in one day, then I must table one on another day. No, Vicoden does not cause rebounds for me. I’ve proven that three separate times now to satisfy three diffent doctors. These migraines self-trigger no matter what I do.
And if you are reading this blog for the first time, please don’t use the comment section to tell me about Cousin Joe or Aunt Mabel’s magical cures. One well meaning doctor told me physical fitness cured one patient’s migraines. Hmmm. When I did Jazzercise® years ago I had steady migraines. When I walked all over P-Town when I worked downtown, still got ’em. In other words, I’ve tried just about everything. While I certainly don’t want to hold on to these migraines, I will be holding onto my money and not throwing it to some new cure that’s advertised via Twitter spammers or on late night infomercials (Avon Lady; true story, but I kept my $130 a month in that case).
I am on a rant. I know my fellow migraneurs can relate. We’ve been there. All I want is better pain management like I had with my former pcp. Not to take as many triptans or Vicoden, because I know that’s not the healthiest, but more than the small amount that I have to stress about getting refilled and/or go without for ten days like I did a couple of weeks ago.
That’s all I’m asking for until a real cure recommended by a real migraine specialist comes along.
Disclaimer: These are my opinions only and my personal experiences with Botox®, triptans and Vicoden. Please consult with a physician before trying any treatment for migraines.
No real doctors were harmed in the making of this blog. That is why they remain unmentioned.