What Am I Missing?
I had my first migraine at age 19 and it lasted for 6 days. In a month I'll be 39. About the same time the migraines started, I had serious female issues that for a while were controlled by various BC pills for about 6 years. Then I had to start more invasive treatments/surgeries that progressed to a full hysterectomy in 2006. Never had children. We all thought that would wipe out the migraines, but no. I started Topamax which held them at bay, with a break-through migraine from time to time but nothing on a regular basis. Due to the female issues and the high amounts of pain I went through with that, my pain tolerance became extremely high, and when I did have a migraine, it took ridiculous amounts of RX/narcotic meds to bring my head down to a manageable level or make it go away.
Prior to the hysterectomy in '06, I out of the blue, started having seizures in '05 and no one ever found a cause. I went through test after test and even stayed 3 days in the UAB seizure clinic in B'ham, AL with them monitoring my seizure activity only for them to rule out what it wasn't and not determine what it was. They finally decided it was my body's reaction to the extreme pain of the female issues and my body was saying: it hurts too much I can't deal with this anymore so I'm shutting down. The seizures eventually stopped as suddenly as they came, but this was before I had the hysterectomy.
In 2008 the migraines came back in full force, with the Topamax not helping and me having to start trying all different kinds of preventatives, triptans, etc. For me, RXs are extremely difficult as most of them I am allergic to, simply do not respond to at all, or they make me violently ill. There are very few things I can take and that have an effect on me at all, and generally to get an effect, I have to take ridiculously high doses.
In 2008, the migraines hit so much I was at home more than I was at work, and was threatened and chastised constantly with my job, which of course only added to my stress, and in March of 2009 lost my job due to my illness. I've since gone on Social Security Disability but I can't find any relief at all for the migraines. For alternative methods I've tried: nerve blocks (allergic to them), Botox (highly allergic, had a reaction so bad I almost died), physcial therapy, acupuncture, MigreLief and a handful of other herbals, diet change, etc.
I have NO energy to get up and even function, I'm in the bed for 23/24 hours a day for weeks at a time. I've gained 80 lbs. Weather is my biggest trigger, which there is nothing at all I can do to change that. I've seen 12 different neuros, etc, and 2 of those are supposed to be "migraine gurus." Nothing is getting any better.
I have no "quality of life" I'm just existing. What can I do? Does anyone have anything at all they can suggest to help me? I'm tired of feeling like a "crack addict" with the insane amounts of narcotics I take, and am horrified at the long-term effects that is going to have on my liver. And I'd truly like to have a life. I'm single, used to be extremely active socially and now I spend all my time at home alone with my dog. I'm depressed, but can't take anti-depressants. Every single one we've tried makes me violently ill. It's just a vicious, vicious cycle. I'm an extremely talented writer and marketing professional who feels like my talents and skills are just waisting away. Yes, that's something I could do from home, but I can't commit to a job when I have so many headaches that I can't meet a deadline. Somebody please, help me!
Have you shared your migraine story with us yet?