Newbie on the medi-go-round with questions

Information about how to manage or reduce the severity of BFS symptoms

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Newbie on the medi-go-round with questions

Postby jorjandu on April 3rd, 2006, 11:18 pm

Hi-

I'm a 36 yr old women who was diagnosed with BCFS in December 2005. After a year of doctor visits and diagnostic tests to rule out other conditions, it was a relief to find a doctor (neuro) listen to my symptoms and even better yet have experience treating patients with this condition. In his initial consult, he informed me that he has empirical data that suggest patients with BCFS treated with anti-seizure drugs can have pain/cramping/twitching go into permanent remission. So in December, I naively climbed on the medi-go-round......1 month of Lyrica (I was dizzy and catatonic)followed by 1 month of Lamictal (limited side effects but no pain relief) followed by 1 month of Topimax (there isn't enough time to list all the horrible side effects I experienced....but was the most effective and made the muscle pain and twitching go away). So now, I am taking 1 month off meds before my next consult. After I've swallowed them down, now I'm researching the epilepsy drugs and well I'm not liking what I've found. So, I need to consider how I feel and what to do next? The neuro has offered up a few untried meds like Neurontin and Trileptal but they will likely have same side effects. Has anyone used anti-seizure drugs with any success?????? Also, I've read posts here about reducing stress and overall I feel I could improve here (win the lotto quit my job :lol: ) But seriously, I'm curious to understand how people deal with the exercise intolerance and continous pain? Ok, the twitches while atfirst bizarre I can live with. But losing the ability to be active or to pay for activity (grocery shopping, day at the park with my toddler son) with pain afterward.....well while a benign condition.....it doesn't feel that way :cry: Also, I am severly overweight so being physically unable to tolerate exercise is dampening my weight loss efforts. I'm leaning towards one more trip on the medi-go-round but I'll be interested to learn what the neuro suggests and I'll be surfing these boards to learn from others.

Appreciate your thoughts or advice!
Georgeann
jorjandu
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Joined: April 3rd, 2006, 9:59 pm

Newbie on the medi-go-round with questions

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