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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Apr 25 10:43pm | Replies (5972)

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@johnmcmillan

I'm a new member of your group. I've thought a lot about trying to find others with a similar condition as mine so I don't make uninformed decisions. I am 67 now but at 18 years old I came down with Guillan Beret syndrome (sp?) so I believe my nerve system is compromised. I started getting prickly, burning, achy feelings in the feet 4 years ago that are somewhat tolerable during the day but hard to tolerate at night especially on the left foot where I had ankle surgery just prior to the diagnosis of chronic, ideopathic, peripheral neuropathy. The condition got so bad that I wasn't myself, had anxiety, depression which I've never experienced before so was told to start on gabapentin which helped a lot. Smaller doses became larger doses to keep the nerve pain at bay and get sleep. I tried to withdraw last year (by reducing by 300mgs/day per week) and came down to 600mgs/day from 3600 however the pain and loss of sleep had me bringing it back up again. I've been on gabapentin for about 4 years and am now at 2700mg/day.
My goal now is to try to withdraw from taking gabapentin entirely.
Question: Would it be better to withdraw more slowly - like by 100mgs/day and hold that for two weeks and tolerate the nerve pain and loss of sleep to get off the drug, or should I slow it down even more?
I fear the anxiety, depression, pain will be worse than the side affects of the drug, so thence the question.

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Replies to "I'm a new member of your group. I've thought a lot about trying to find others..."

Hello @johnmcmillan, welcome to Connect. I have no medical training or background but I would recommend discussing tapering off of gabapentin with your doctor. You could end up with some pretty severe side effects. Here is some information that may be helpful.

Gabapentin Withdrawal
-- https://www.recovery.org/topics/gabapentin/

John