Hello.

I am new to this forum but I am hoping to find support in people who understand what I am going through. I am 29 years old. When I was 27, I was diagnosed with Occipital Neuralgia. I went 19 months with out an attack. They have done multiple tests and don't see anything that would be causing the problem. As my neurologist started to dig further into the issue and my symptoms, she discovered that I in fact have glossopharyngeal neuralgia instead. It is excruciatingly painful, and my attacks come on without any warning. No one understands what I am going through and because it isn't something they can "see" I have some that feel that I over-exaggerate my pain. I know I will most likely have to deal with this for the rest of my life, but please someone tells me this gets easier.

Hi baa137

Welcome to NeuroTalk .

The sticky thread in the neuralgia forum (https://www.neurotalk.org/forum105/) is worth looking at and the Search command (https://www.neurotalk.org/search.php) could retrieve other topics which might help you.

Best wishes.

Hi,
I was visiting my daughter in Zurich when l started getting very painful sharp electric type stabs in the throat when swallowing or coughing. These stabs progressed to incredibly painful debilitating attacks where sometimes l seized and my heart would stop.
The hospital was convinced l was a heart patient and l woke in surgery as they put in a temporary pace maker. I was in hospital for 3 weeks before lyrica worked on stopping the stabs and the attacks. I found a fabulous Neurological surgeon back home in Melbourne who will perform Microvascular Decompression surgery and place a piece of teflon sponge between the artery and the 9th cranial nerve. I am very apprehensive but for me as a person living alone l think it is a sensible way to go.I fully understand your pain. It is absolutely intollerable. I hope you get the right help fast.
Helen Aden Melbourne Victoria Australia.

Hi Helen

Welcome to NeuroTalk .

I hope that the surgery works out well for you.

Best wishes.

Hi, I have had it for 24 years. I have it unilaterally, left side. Most people have it on the left. I also have trigeminal neuralgia and have that bilaterally. When you have GN, and TN the TN is usually bilateral. It is very difficult, and the pain is great. Seizures and heart stopping are part of it.
I get bradycardia after pain but my heart has not stopped yet.
What is there to say?
Vaughn

This is part of MS sometimes. It is the "Oh my God what next!?", and then you deal with it. Glossopharngeal neuralgia, and I have had it for decades is under represented. In the USA the Facial Pain Center only has a pamphlet they give out on it while they have tons on trigeminal neuralgia. Try drinking alcohol? Chances are you will throw it up! Done it many times. Coffee too. I would be interested talking with anyone who has had bradycardia with the pain. We know your heart can stop, anyone have a pacemaker for it?
Have a safe day.
Vaughn1

Hi, I think we just get used to it. Hopefully you are on medication? Vaughn1

I choked and had the food lodged behind my tongue or at the base of my tongue over 3 months ago. I’ve had issues ever since. Can choking cause Glossopharyngeal neuralgia?

Hi Courtney

Welcome to NeuroTalk .

I know very little about glossopharyngeal neuralgia but if you have a look at this forum https://www.neurotalk.org/forum105/ and/or post there I am sure that will be helpful for you.

Best wishes.

Ive been dealing with GN for about 2 years now and ive even been to the mayo clinic, all my dr wants to do is give me triliptal(which depletes my sodium), and gabapentin. the "tongue stingers" as I call them are getting worse. I know they come in phases but this one seems to be lasting forever.
Does anyone else get bumps on there tongue where the stinger hit?
Also what else is out there to take?
Anyone ever try the gamma knife?

Hi gailmelissa42

Welcome to NeuroTalk .

If you describe your experiences in the GN forum (https://www.neurotalk.org/forum105/) I am sure that you will get lots of support and good ideas from members there.

Best wishes.