Re: my Neurontin experience

[Guest guest]

Hi ,

I took Neurontin for 1 year and stopped my Elavil. Before taking N. I

did tons of research. I started the dose over a weekend (3 days) to get

to my 900mg dose a day. At the time I was experiencing 'lightening

bolt-zaps' at rest going up my legs and arms. The N. took this away, it

also seemed to help me rest sounder, as I am a light sleeper by nature.

Because of the short 1/2 life of N. I had to take 3, 300 mg pills a day,

which for me was a pain in the butt afterwhile. So, then I would take 2

at night and 1 in the afternoon. That worked out better. However, I did

notice when I was at the piano, my tremors had slightly increased - just

after that first afternoon dose. My CMT tremors aggravate me to no end

and anything that aggravate them, well, out it goees.

I reported all to my Dr. and suggested since my tract record with Elavil

was so good for CMT pain, sleep, mood, tremors, balance, that I would

rather have one, 5 in 1 pill. So, went back to Elavil. Tremors subsided

and that was that.

So, yes, Neurontin worked for me, I haven't had those sparkler type

pains since; also Neurontin did give me an energy boost somewhat, but

the stuff was way to expensive....

I feel lucky I am an 'instant responder' to it; and it is there if I

need it. I responded well to it even in the first 2 days while dose

ramping. Some people it will take a few months to feel the full effect,

others do not respond at all. It does work on the brain chemistry and

yes, that first weekend, I had some minimal dizzyness. I told my close

friends I was starting a new med and begged off social stuff till I got

the med dose stable.

Once again, most of my pain I have now is in my feet - and that just

comes with CMT. Ice packs, pillows, and minimal nerve pain in that

regard helped with a small dose of Elavil help wonderfully.

I also would not recommend meds and alcohol. I did that myself for years

and was a mess.

I hope this helps you and your husband. ~ Gretchen

shelley brown wrote:

>

> Hi all, thank you so much for the warm welcome!

>

> Hearing Loss: My husband is deaf in one ear, and will attest to all the

previous comments about having to read lips, etc. I am urging him now to

contact Medicare about ability to get hearing aid. My 8 yr old son, also CMT1a,

talks loudly but currently passes hearing tests.

>

> AFO's: Husband has worn bilateral AFOs for several years. His are plastic

with velcro fasteners and some amount of padding and molding for his feet. His

braces are hinged at the ankle to allow him to bend forward, however he

complains that a ramp or slope will put his knees in a real bind. Both his

knees hyperflex or " pop out " as he says. He is so used to the dislocations of

knee cap and knees that his knee joints are very loose, so the pain is less now

when it happens. He just dislocated his elbow last April in a fall, and now it

hyperflexes as well. My son wears " off the shelf " AFOs and is currently ticked

off at me, as he pinched his leg rather badly at school while sitting down.

>

> MEDS: Husband gets strange " nerve / muscle spasms " a few times each year.

This month it has happened four times already. In previous years the MDA clinic

physician prescribed valium and vicodin. New doc recently prescribed neurontin.

Hubby says NOTHING helps, and he usually can't sleep at all. Sometimes a mix of

motrin IB and beer will put him to sleep, against my wishes. I strongly advise

NO ONE shoud try this remedy, it is a dangerous mix. Any info or experiences

with Neurontin would be helpful.

>

> Have a great weekend!

>

>

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