Re: Neurontin Experience

[Guest guest]

Hi, Ron -- This is nne and I have Type 2.

When I was first diagnosed, I had just had

surgery which made the CMT really become acute. In an effort to

deal with the nerve pain and burning, my neurologist gave me

Neurontin. Over time we bumped it up to the maximum dosage and

I did have some relief of the symptoms. What I didn't realize was

that even though my escalating CMT problems increased my falls,

the neurontin was taking the edge off my ability to " catch " myself

when I stubbed my toe, or my ankle started to roll. I was asked to

stop all meds like neurontin and dilantin for some testing back at

Wayne State. Within three weeks of tapering off to no meds, the

at least weekly injury falls all but disappeared. Yes, the pain in

my feet increased again, but not " hurting " in the rest of my body

from the falls was worth the exchange.

Since then, my doctor and I have tried a number of the

antidepressents such as amitryptoline and clonapin,

looking for one I could tolerate and that would help with

the nerve burning. After much experimentation (under dr. supervision)

over about a year, I have determined that desiryl (50 mg at bedtime)

gives me the best bang with the least side effects. Each person

reacts differently to the different types of the antidepressents. So

if one type doesn't work, another might. Just make sure that your

doctor is monitoring you closely.

Sorry this response is so long, but I hope it gives you some

ideas for managing your CMT symptoms. Best of luck. nne

Neurontin

>From: rww@...

>

>I think I read that someone is using neurontin. I would like to know what

>the side affects are before I discuss this med with my Dr. and is it doing

>any good.

> Thanks Ron

>

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