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.
Sorry you are going through so much pain and trauma. Doctors can often be jack asses and it is devastating. We depend on them to help us and when they are unsuccessful at curing or helping us they turn it on us and blame us with stupid innuendos or outright accusations. You’re not alone.
Kathleen aka Ayah
Thanks my Ayah friend. Unfortunately most of us #spoonies have been through this song & dance with doctors all too often, haven’t we?
As sad as it is yes we have. I try to be understanding, I know they get addicted patients looking for drugs, I know they have their own life problems to deal with but they are under an obligation to us to first do no harm. Ignoring us when we are in pain and blaming us for our pain and illness is harmful! I can see the pain in your eyes. I get terrible migraines but never as frequently as do you. Can’t imagine how stressful that must be. Hoping they find a cure for you, botox seems so backwards and barbaric. A hundred years from now they will look back at it as quackery. I have high C reactive protein and my doctor was like, oh that’s not an issue or a problem even though it showed relation to heart disease a year ago! Today on the news they release findings that that level of inflammation causes most major disease. Gee, they really just figured it out?
We know more than doctors do sometimes especially when it comes to our own bodies. Sorry for what you’re going through – which I know is a lot more than me. But this isn’t about apples and oranges, I appreciate the feeling of sisterhood and support in our chronic ilnesses, Kathleen. *Hugs*
It truly amazes me how unsympathetic some doctors can be, especially when this is not a new case scenario that they are working with you on. To me it seems obvious that what they are prescribing isn’t working for you and other alternatives need to be looked at. Do doctor’s even understand that not everyone gets rebound headaches from narcotics? I am prescribed percocet and I also don’t experience rebound headaches. But an ER doctor was so kind to tell me that’s what I was experiencing when I ended up in the ER via an ambulance. Sadly, I was a bit peeved and left in as much pain as I went in with. I was saddened to hear your experiences with Botox. I am scheduled to undergo my first series of injections on Friday. Botox was never an option I was willing to entertain until I was denied by my insurance to have surgery for an occipital neurotransmitter. Maybe that is something you could look at and if really lucky, get approved for. That was the first time I had any type of hope in the last 6 years. Very crushing. Do triptans ever work for you? I have had very little success, which is very discouraging. However, I have only used them orally and have tossed around the idea of requesting them in injection form. Lori
The last time you were on, you were in severe pain and things were not working in your favor. How are you doing? I am praying this blog finds you feeling a bit better. Keep in touch.