Hi all,
How I didn’t find this forum in the last three years I don’t know.
4 years ago I was at my desk at work and I started feeling really sick. I went home and half way home (I walk) I lost bits of my eyesight and realised I was in for a migraine. My play station arrived that day, and I never played it, as it just made me too sick. It’s gone now!
Anyway. I went through a year of being fobbed off by my GP ‘it’s just a headache’ and trying the things for labrynthitis etc. Nothing worked. I read around a lot, and finally came upon an MAV article. I recalled that as a child I had been prescribed Pitzotifen for migraines, so I went back to my GP and demanded those. I also managed to get a neuro appt at the same time, and he OKed me up to 3mg Pitzotifen.
I went from being barely able to function, to being mostly ok. I still woke up with a ‘hangover’ every day, and would have relapses about once a month, but I could function mostly, but I still couldn’t work sitting at a desk, and I couldn’t do groups of people. I work from home lying down. I’m a student right now, but my PhD will finish in a year and I’ll need a job.
I decided to get a new referral and went back to the headache clinic where I was seen once and discharged (I’ve gone back!) but he told me to cut out caffeine, which I have, and it’s got rid of the ‘hangover’, and I’ve only had two relapses in a year, but i STILL can’t work sitting up. Nor apparently, can I watch Star Trek in 2D (went to see it Friday, felt very sick).
I am still on 3mg Pitzotifen (going up to 4.5 didn’t improve anything) and have tried Topamax, which made me forget words and didn’t provide anything extra over the Pitzotifen. I also tried nortryptiline, also nothing. I’m currently on Propanolol at 160mg a day. It’s also not giving me anything over the Pitzotifen, but I only upped from 120 to 160 a week ago, but it is meaning that I am struggling to run so I’m not the happiest about that. Next on the list to try is Gabapentin according to my headache clinic letter.
I’ve also got tinnitus, and over the last year have had several ‘drop attacks’ the last 12 months haven’t been so bad, but the previous six were worse, where gravity’s centre moved and I ended up on the floor as everything was set to 45 degrees. This last 12 months I’ve just had attacks where i WANT to sit. But I’ve lost my driving license as a result I’m on serc now. it’s been 6 weeks since my last drop attack.
Aside from this, I’ve got ‘basic functioning’ down, but i need to be able to sit at a desk. Does anyone have any thoughts?
LJ