I have some good news.
Posted: Mon Feb 20, 2012 10:26 pm
Most of you know I have a brain tumour and have chronic balance / vertigo / brain fog / seizure / exhaustion problems. However, they couldn't figure out where the balance problems and vertigo were coming from as the tumour is not near the balance centers in the brain. I've been through a zillion specialists in the last year (FUCK THEM ALL - I can't stand doctors) who would rub their chins, look down on me (as my head was going round and round and round - the feeling you get coming off a merry go round) and say, 'well, some of your symptoms fit this so take this drug". Which I wouldn't cause that's bullshit. Fuck, I would be loaded up on valium and every other barbituate you could think of if I listened to them.
Anyway, my angst about doctors is coming out here. Back to the good news:
I have gluten ataxia. Which is an intolerance to gluten but instead of the antibodies created in response to seeing gluten as a foreign body and attacking my intestine, they are attacking my cerebellum/pukinje cells. The pukinje cells take all the information from your body moving through space (nerves, vestibular/occular) and compute it to help you move smoothly.
I did a gluten challenge for 7 weeks, just finishing up at the end of December and I thought I was going to die. I did die in a way. All I could do was lay on the couch. Seriously. I only washed my hair once that whole time. Didn't leave the house. Brain fog, falling over, drunken sailor walking, vertigo. Oooh. I'll never go back there again.
It's been almost two months since Ive stopped ingesting gluten and I'm starting to feel like me again. Seriously. I thought life was over. But now I can start seeing a path opening up again. After three years.
I feel great. The antibodies have a half life of three months so by the end of three months, I'll have half of them and then in another three, half of them and so on and so on. By the end of the year, if I don't accidently ingest gluten, they'll be all gone.
The damage to the cerebellum will not reverse itself but it will not worsen now. Relief from the vertigo is like the BEST THING EVER...and also not having hyper sound acuity/sound induced vertigo.
I'm very happy. Oh and I would just love to give you all a hug and a big kiss of joy and say thanks for your patience with me when my brain wouldn't think.
PS - I can now go under flourescent lights without having a seizure.
Anyway, my angst about doctors is coming out here. Back to the good news:
I have gluten ataxia. Which is an intolerance to gluten but instead of the antibodies created in response to seeing gluten as a foreign body and attacking my intestine, they are attacking my cerebellum/pukinje cells. The pukinje cells take all the information from your body moving through space (nerves, vestibular/occular) and compute it to help you move smoothly.
I did a gluten challenge for 7 weeks, just finishing up at the end of December and I thought I was going to die. I did die in a way. All I could do was lay on the couch. Seriously. I only washed my hair once that whole time. Didn't leave the house. Brain fog, falling over, drunken sailor walking, vertigo. Oooh. I'll never go back there again.
It's been almost two months since Ive stopped ingesting gluten and I'm starting to feel like me again. Seriously. I thought life was over. But now I can start seeing a path opening up again. After three years.
I feel great. The antibodies have a half life of three months so by the end of three months, I'll have half of them and then in another three, half of them and so on and so on. By the end of the year, if I don't accidently ingest gluten, they'll be all gone.
The damage to the cerebellum will not reverse itself but it will not worsen now. Relief from the vertigo is like the BEST THING EVER...and also not having hyper sound acuity/sound induced vertigo.
I'm very happy. Oh and I would just love to give you all a hug and a big kiss of joy and say thanks for your patience with me when my brain wouldn't think.
PS - I can now go under flourescent lights without having a seizure.