Gabapentins Stopped Working?

Hi all, i would like to share my story and maybe get some feedback. I am a 33 year old female who has been dealing with glossopharyngeal neuralgia for many years. I have no idea what caused it but I remember the symptoms started with small little "zaps" in my left ear here and there shortly after an "extensive" root canal in my lower left tooth back in 2004. I am not sure if its connected but in my mind, it is. The little "zaps" came and went and were not painful until they hit me like a ton of bricks in 2007. It came on in very painful, longer "zaps" that felt like an electric hot ice pick was stabbing my ear many times. I visited a few drs and an ent dr before finding a neurologist who suggested it was gpn. I had a cat scan that came back with no obvious cause of my pain. He started me on Gabapentin which I ended up increasing up to 3600 mg when the pain got bad. It eventually went away and came and went here and there for years and I would take a few Gabapentin and it would go away but the pain was never as bad as it was in 2007. This leads me to now. I went to a dentist for a little mouth discomfort about 3 weeks ago and he told me I had a small infection but would not give me antibiotics (so wrong) and shortly after that my gpn has been acting up like crazy. This time around is even more painful than it was in 2007. I have increased my Gabapentins to 3600 mg on my own. I have moved to a new city and have yet to find a new neurologist. (its so hard to find one who knows what the hell gpn even is) This time around the 3600 mg isnt cutting it. I am experiencing so much pain and im not sure what to do. Is it possible that the Gabapentin has stopped working? Has anyone else had this happen? I am sorry if this is a really long post, it just feels good to share my story with people who can actually relate to what I am going through. All thoughts and suggestions are welcome :)

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Hi Caligirl, If you checkout the Doctor's database in the "doctors' tab above, there are three GPN doctors located in California, and a few other nationally. With the Gabapentin, it seems to be pretty usual for folk to build up a degree of tolerance over a period of time to some of the meds. When this happens, seems your neuro will either up the dose, or sometimes they use a second drug to work in combination with the first. Usually, best fit is determined through trial and error. For example, I use Gab with Amitriptyline to settle down major breakouts etc. Sounds like you need to find yourself a new neuro as a first step. If you have trouble accessing the database, drop me a line and I'll copy you those listed.

Hope this helps. :)

Yes I’ve experienced it all!! I still get zapping in my ear. The meds never worked. At its worst I had a horrible upper gum infection along with all the neuralgias. Go with ur gut and see oral surgeons until you get one to stop the infection.

Gabapentin only stopped my "bonus" pain (I sometimes get extra sharp jabs when I inhale - fun times), but at the time, I had thought the rest of my pain was related to TMJ. (Turns out, it wasn't. My TMJ was all on the other side, and has been treated pretty successfully.) Tried more gabapentin, didn't help, and that's when I started getting worse, with distinctive pain with swallowing at times, too. (I used to assume that was post nasal drip - but my throat was never red with it. I have made assumptions based on most likely cause, given the frequency of things. Who thinks of a stupid rare thing like this?)

We later tried: tegretol, cymbalta, nortriptyline, amitriptyline (which was my least favorite - dry mouth all the time, grogginess, blah), and now Lyrica. Lyrica seems to be helping some, and today I will start going on a higher dose. (50 mg in the morning, 100 in the evening.) Time will tell if that gets rid of the rest of it, or at least most of it, but I have high hopes.

If you have a sign of infection on x-ray, you definitely should get some antibiotics! Dental infections aren't something to mess around with!

Good luck!

I forgot to tell u what got rid of my infection. It was so deep and left so long it caused these horrid neuralgias. I ordered pure xylitol from amazon. I brushed with it and I put it just on the infection and it sucked the infection right out!! It’s the only thing that worked!!! I was told there was an Indian blended contraption too but I didn’t need to order it. People who have used xylitol don’t go for root canals!! Also urine therapy but I did t go that far either!! Good luck!


I have read a lot of academic papers and have talked to enough neurosurgeons to know that GPN does not respond very well if at all to medications. My neurosurgeon told me GPN is particularly hard to treat because it does not respond very well to medications typically given to people with other neuralgia's. He said from his experience that patients with GPN either cannot find a medication that is effective or they find an effective medication but it eventually becomes ineffective over time. That sounds like your symptoms. The other issue to worry about is the length of time you have had GPN. The longer your wait to have an MVD the less likely a MVD of the 9th cranial nerve is either totally effective or partially effective in revealing GPN pain. Nerves can repair themselves but they can also be permanently damaged if they are pinched severely for long periods of time. Unfortunately I got my MVD too late to get total relief of my GPN pain. I have an atypical case which made it very difficult to diagnose. So it took nearly 10 years after my first symptoms before getting a proper diagnosis and then an MVD.