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Old 09-21-2007, 04:36 PM #1
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MelodyL MelodyL is offline
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MelodyL MelodyL is offline
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Well, I can tell you what happened to Alan (we did it twice and it happened exactly the same).

He went on the lowest dosage (this was about 4 to 4 years ago). He got deathly ill, got chills, got a fever and said "oh my god, how do I know I don't have the flu, and this might be the neurontin".

So, when he got better the very next day (no neurontin), we waited one more day, he took the neurontin, the exact same thing happened, I took the bottle away and said "enough", no more.

That was it for Alan and neurontin.

Now my Aunt Sallie, who has had a seizure disorder for years and years, well, she was on Neurontin for years. No side effects whatsoever except a little sleepiness.

She was taken off years ago. Now she is 83 and not on anything. Her last seizure was about 5 years ago.

Melody
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Old 09-21-2007, 04:55 PM #2
glenntaj glenntaj is offline
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glenntaj glenntaj is offline
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Default Neurontin has a very mixed history--

--due in part to some very bad-faith efforts by its manufacturer to market it for "off-label" uses that were supported by little or no (even anecdotal) evidence.

Nevertheless, similar to the case of Viagra--the well-known effects of which were discovered quite accidently, as it was orginally developed for other medical conditions--Neurontin was discovered to have the ability to dull or blunt nerve pain as well as suppress seizures, so many docs began to prescribe it for that, and now, even with Lyrica (Pregabalin) out there, it's probably the most often prescribed drug for nerve pain (from neuropathy of other causes.

I can truly say that it was a lifesaver for me--when my acute onset body-wide burning neuropathy hit, and the pain was so intense I couldn't eat, sleep, wear clothes (imagine body-wide sunburn rubbed raw by steel wool), my very first dose of Neurontin knocked down the pain enough for me to get some relief, and over the weeks I titred up to a high enough level to become almost fully functional again.

The highest dosage I ever took was 3000mg/day; I averaged 2400mg/day for a long time. (The neuros did give me some leeway to play with the dose when I had bad "flares"). As my skin biopsies have shown some re-enervation and my symptoms have lessened (we still think this was a one-shot molecular mimicry autoimmune phenomenon), I have lessened it over time down to 1200mg/day now. (I always lessen it slowly--couple of hundred mgs for a few weeks, than another few hundred, then I let it plateau for a few more weeks to re-adjust to the new sensations; at times, when I've gone down, I've noticed a bit of an uptick in symptoms. This is expected, as it is when one reduces the dosages of many drugs, and fades in time as the body adjusts to the homeostatic downregulation.)

It's possible that in time I may get off it completely.

I have had some side effects--a bit of tip of the tongue phenomenon, when I can't remember the right word--curiously, this happens more often when speaking than writing--a bit of fatigue at times (though my massive B12 dosage seems to make up for that) and some weight gain (about 20 lbs.--that's been the hardest to deal with--Neurontin tends to make you retain water AND crave carbs.)

I'm not a big advocate of drug-taking--Neurontin is the only pharmaceutical I take, though I take enough vitamin/mineral supplements to make people marvel at my collection of containers--but if one really needs it for pain reduction, considering how weird and intractable nerve pain can be, it's certainly worth a try.
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