I have seen where many talk about their inability to tolerate Neurontin due to its side effects. Would someone share their experiences with Neurontin and how it might have affected them. I really seem to have no problem with it (or maybe its at the root of all my problems and I don't know it ....but Im wondering if my sister might not have some side effects as well as my brother. Thanks for any help.

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

--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.

Hi Belinda, I think it's up to the individual really, try and see sorta thing, some tolerate it well and seems to help them and i have read others that have to keep upping the dose then want to get off it at the max dosage.

I was one that couldn't handle it, in the beggining my GP give me his sample packs to try out, 3 x 300 mg daily to start with, i took that for one day and when i woke the next day i felt like i had been hit my a Mack truck, virtually crawled to the breakfast table with like the biggest hang over i had ever experienced in my life and i have had a few , definately not for this boy but to each to their own.

Brian

Go up to the "important information/stickies" and go to post #13 or 14, which lists the various meds tried/used for neuropathies. What works well for one, mite not for another...
I did not take well myself to neurontin..that others can is a blessing for them. My issues related to the mental disconnect between brain and mouth...I could not remember the ending of the sentence I was speaking halfway thru! It occurred often, or I'd simply fall asleep mid-sentence and wake up in a half hour and, well complete it! Then I'd go WHAT? Huh?
Sleeping for 14-16 hours a day wasn't exactly 'quality of life' either. Nor were the last straws...the hallucinations. Those were NOT fun. But then, I don't take well to melatonins, serotonins or any SSRI's SNSI's or the like...
Keppre [a I believe a MOSI{ I forget exactly}] works for me, tho some experience what's called a 'Keppra Rage' - I only experienced that when going on another med for a completely different issue [which is also notorious for 'mood changes'].

Here is the 'prescribing info' for Neurontin:
http://www.pfizer.com/pfizer/downloa..._neurontin.pdf
Pay attention to other meds compatibility pgs 12-13, Charts about epilepsy trial affects pages 18-22, and neuropathy trial effects pages 22-23 - For neuropathy the trial was relatively SMALL. Be alert to the fact that the drug manufacturers often use a wide variety of Synonyms for other more commonly used medical descriptions of side effects. That makes it up to YOU to find the right/best words that match what you are experiencing to what they REPORT. Tough calls at times. BUT IF I can do it? Any one can...just takes time and lots of patience. I graphed it out on PAPER as I wasn't computer literate at the time...and, it took a long time, but I made the time and learned lots! Even in, during and despite the old medicine Brain FOG!

Hopes this helps? I don't trust those medicine on-line sites to cross check s/e's They all indicate there are absolutely NO cross issues! There are cross issues with at least 2 dozen meds if you take your calcium with either your thyroid, cancer[my case] or anti-seizure pain meds! It's in that fine, fine print!

I don't take to it well, but If I'd no other choice? I guess it's better than nothing at all. You just wouldn't want to be on a road driving near me while I'm on it? Those hallucinations just mite kick in! - Good thoughts and such - j