Hello. I’ve had both constant pain and severe attacks at the base of my tongue for the past 8 years or so.
At it’s worst, I was a mute for at least 5 years, and on an all liquid diet as I couldn’t eat without it triggering further episodes. During severe episodes the pain is incomprehensible.
I’ve found medications that help manage it. I got a diagnosis of glossopharyngeal neuralgia from a pain specialist.
One of the medications that helps a lot is an SNRI, duloxetine. The other is a benzodiazepine. I can’t get anyone to prescribe it. Neurologist tells me to see a GP, GP tells me to see a psychiatrist, psychiatrists tell me go back to the GP, GP tells me to see pain management, pain management tells me to see a psychiatrist.
Nobody wants to prescribe controlled substances as they have a bad reputation and things have gotten really regulated. I’ve been at a loss for how to solve this. Anyone else dealing with the assumption that you’re an addict? How do you deal with this?
I’m surviving. There was a stretch there where I didn’t think I was going to make it. I can see why prior to treatment options, things were way worse. I hope everyone else is getting treatment and having good results.
Hi Kupain. I too have suffered for nearly a decade and been through the roundabout of doctors, who often treat you as a basket case. There’s nothing more sole destroying. I’ve had a failed MVD. It was only at the 8ish year mark I found a good pain management specialist. I’ve actually found that despite all the drugs I’ve tried, the only thing that works for me is Paxam/Clonazepam. It’s a benzo. Neurologist hates that I am on it, but I tell him, compared to mountains of morphine, 1mg of a benzo a day is nothing. Pain management specialist defends it - if it works then take it. I do know what you mean about being treated like an addict. I was on high doses of morphine and panadeine forte for at least 6 years and I came off them in hospital last year while undergoing an 11 day ketamine infusion for the pain. It’s totally shit being pushed from pillar to post. I know you must be totally exhausted by it all and tired of being your own advocate, but it sounds like it’s time for a new bunch of doctors. Sorry for your mountain of suffering, grief, stress and trauma. x
I have GPN and ATN and what works best for me is .25 Xanax, it will give me over 8 hours of no pain like before I got these 2 diseases. I use it once or twice a week do I don’t build up a tolerant to it. It is nice to feel good and painless like before this nightmare.
Hi everyone in the GPN thread – just thought I’d ask if you are still using benzodiazepines, and whether they are still working. I do have a prescription (in addition to many others) and have been delaying having them filled. (My atypical GPN seems to be getting a bit worse, or med effects of gabapentin and nortriptyline are wearing off, so I’m looking at additional options.) Many thanks.
Yep. I’m still on Clonazepam and it still works as well. Thank goodness. I’ve been on it since 2015. Easy to tolerate and I haven’t found that I’ve had to increase my dose. Despite being a benzo, it is also widely recognized and still used as an AED, in addition to movement disorders, anxiety, panic etc.
I discovered recently that a friend of mine takes it too. She has Burning Mouth Syndrome. She’s been on it for years. It stops all her pain and symptoms which were pretty horrendous and she manages on .05mg pd. I vary. Generally I take .05 bd. If I’m totally frank, I think I might not have been able to continue without it. Prior to being put on it, I was in and out of hospital on ketamine infusions, to name but one, to try and stop the pain.
Wow, somethingforkate, I’m very glad to read you have found this solution. Thank you so much for sharing this. I’m heartened to hear that this works for at least some people and will try it!