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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: May 26 10:50am | Replies (6004)

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@avmcbellar

Hi @jakedduck1. I see in your post you state you have tried many anti seizure medications. I just wanted to add I was prescribed only one while I was in the ICU following my AVM(ArterioVenous Malformation). Upon discharge from the hospital, I was given a prescription to continue the same medication, Keppra. I don’t normally take medications but figured the doctor would know best. After all I had no decision making with this medication whatsoever. I was in a coma. Needless to say, I hated the effects of the medication and cringed every time I had to take a dose. I did not know how much the medication affected my body, was it me or the drug? It had awful side effects. The more I read, the more I wanted out. So on my follow up visit with my neurologist I convinced him to discontinue it. He told me “ I was right” so I was tapered off and within a few weeks done with it. I never had a seizure. It was a precautionary measure. For me, what an awful feeling taking anti seizure medications. One has to look for the benefits vs the risks in taking it. To answer your question, I saw no benefits with Keppra while I was taking it. I have been drug free for almost 4 years now and have come a long way. I started with a wheel chair because I could not ambulate at all. Wish you well in finding answers!

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Replies to "Hi @jakedduck1. I see in your post you state you have tried many anti seizure medications...."

Wow. I thought I’d tried everything. Never even heard of Keppra. So sorry for your experience

Ditto except the Gabapentin enables me to tolerate my pain most of the time. It numbs my brain to enough of it to have limited function but the side-effects are horrible!! I know this is a repeat (I'm famous for that) but know there are new kids or others in the group who may not have seen them so here goes: my senses are dulked, balance worsened, memory, focus, concentration and tracking compromised, double vision off and on throughout the day, a muted soft grayish and white pattern in
my vision field at all times, sense of time altered, etc. And, this is onky taking 300mg. AM, 300mg. afternoons and 200mg.at bedtime.

I had these side-effects when I was only taking two and three hundred mg.s although not as strong.

I still have to use 5‰ Lidocaine patches on my back and 4% Lido solution on my knees.

Yup, everything in medicine is a benefit /risk ratio.

I am grateful for the great care that I have received over the years. A lot of my doctors are as frustrated as myself bc they are so limited in what they can do for their patients and because the medications can be so toxic.

Thanks everyone for you support and kindness. It means so much to me! Warmest regards, Sunnyflower 😊