Hi, everyone. I'd like to post my story in the hope that someone here may have heard or experienced something similar and may have some advice to offer.

In January I rented a car for a week that had a very stiff tilt-wheel release lever that had to be pushed down with the left thumb. This put extreme pressure on the thumb joint.

After the first few days I started to feel strange, fleeting sensations in the thumb joint. It felt as if a very thin needle was stuck in there. Movement and manipulation had no effect on the sensation, but it was always fleeting. It faded after 20 or 30 seconds.

A couple of weeks later it started to get considerably worse. I began to experience episodes of intense, shooting, pulsating pain centered in the thumb joint. As if that needle had become electrified and heated. Each episode lasted a multiple of six seconds, usually 12 seconds or 24 seconds. The frequency of episodes was every two or three minutes on the worst days, and less frequent on better days.

First I went to an orthopedist specializing in hands and shoulders. He took a few xrays to rule out arthritis, and he diagnosed "trigger thumb" because he thought he detected a small click as the thumb was flexed and extended. He gave me a cortisone injection near the base of the thumb. The only result was a distinct intensification of the symptoms for the next few days.

No pain medication had any effect at all. Not NSAIDs and not Percocet.

(Trigger thumb is characterized by locking of the thumb in the flexed position and by inflammatory pain. I don't have either one.)

Next I went to my PCP, who ordered nerve conduction tests. The tests were performed by a neurologist, and the results were entirely negative. No abnormalities of any kind were detected. The neurologist said my episodes were almost certainly neuralgia. He advised starting Neurontin and seeing whether that would control the pain. If so, then it was definitely neuralgia. He also said that the cause might never be found but that it was possible that after taking Neurontin for three to six months, I could stop taking it and the pain might not return.

I started with Neurontin and found that the pain was totally controlled with a dose of 300 mg per day. I continued this for about 6 weeks. At that point I was increasingly bothered by side effects, like drowsiness and loss of equilibrium, so I decided to stop and see what happened.

For two weeks after discontinuing the Neurontin, there was no pain whatsoever. I really thought I was done. Then it returned, but it was somewhat different in character. It wasn't quite as sharp, a bit more achy. And it wasn't quite as localized. But it still came in episodes of 12 or 24 seconds.

So I restarted the Neurontin and built up this time to 900 mg per day without getting complete relief. Kind of strange, I thought. Naturally the side effects were worse, and since I didn't have complete relief anyway I decided to taper down to zero once again.

Oddly enough, the pain episodes actually got better as I was tapering off the dosage. And by the time I got to zero the pain had stopped.

But two days later it started again. And this time it was much more like the original version, very sharp, intense, and localized.

So I started Neurontin again and tapered up to 400 mg per day before achieving pain control. I've been stable at that dosage for over a week, and once again not enjoying the side effects.

My PCP advised me to see a different orthopedic specialist, and I have an appointment tomorrow. But I'm not sure what he's going to be able to tell me. I don't know that there's any way to tell whether or not there's a detectable neuropathy that could be helped by surgery. The nerve studies suggest that there isn't a neuropathy. But I suppose they aren't totally conclusive.

I think the most conservative course at this point would be to follow the neurologist's advice and stay on Neurontin for at least another three months before trying to taper off again, assuming that the situation remains stable for that long.

Anyway, thanks for reading this long story (if anyone made it to the end). Is there someone there who knows of something similar? I know there are various idiopathic neuralgias that behave somewhat similarly, like trigeminal neuralgia. But I haven't been able to find any reference to anything that sounds like my problem.

Thanks for any responses.

Hi, I can't speak for your situation but I do know that when you treat with anticonvulsants(neurontin), once you reach a therapeutic level of pain control, and you stop, you quite often have to increase the meds the next time you use them, as is illustrated in your case, to achieve the same pain control. I have trigeminal neuralgia and sadly I have experience with this. If it were me, I think I'd stick to the six months, even though the side effects really @^&#, and then try going off of them. I'd be interested to hear what happens if you are still inclined to post your experience.

Take care