NeuroTalk Support Groups - Glossopharyngeal Neuralgia

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Occipital Neuralgia and other Cranial Neuralgias (https://www.neurotalk.org/occipital-neuralgia-and-other-cranial-neuralgias/)

- - Glossopharyngeal Neuralgia (https://www.neurotalk.org/occipital-neuralgia-and-other-cranial-neuralgias/103775-glossopharyngeal-neuralgia.html)

Quote:

Originally Posted by Mrs_Bennet (Post 590466)

Hi, yes it is a bit hard finding anyone else with this experience. I have had it for about 18 months but probably 9 of those months have been periods of remission. Only fairly recently have i jumped on the medication roundabout and have just transitioned from Tegretol to Neurtonin <sp>. I have had a tough 2 weeks going from horrible side effects while i was on both for a while to now having continuous attacks while hoping to get to a level of mediation that will work. Talking brings on an attack which never happened before so things are pretty quiet around our place! very frustrating!

I would be very interested in hearing how you and others are getting on, well i hope?

i take tegretol and neurontin on a daily basis while it does not work 100% of course it makes my life functionable. it is a Godsend. when i find that missed a dose i can immediately tell and it just reaffirms that they are working! i think they are the 2 common drugs they basically use. you could ask if they could keep you on both.

Quote:

Originally Posted by painintheneck1 (Post 597807)

Hi to semcsquared and anyone else who reads this and suffers from GN. I have had the GN pain for 9 years! Of course, for the first 5 years, it was not diagnosed and I even had my tonsils out at age 50 because the dr. and I were convinced that the agony was caused by by yucky tonsils. Unfortunately, that procedure made the pain much, much worse - not just during the recovery but from then on.........I have tried several anti-seizure meds, things like Cymbalta for neurological pain, and narcotic pain meds. I see a pain management dr. at this point, which is a way different bird than an ENT (they give you a tissue when you cry!). Even after a diagnosis, which was based on history - not on the numerous scans - I was deep in denial about actually having GN....I just kept thinking it was something way more evil lurking in my neck, throat, ear and tounge. Two months ago I begged my ENT to give me a final MRI and also to biopsy two little bumps in my throat - coincidentally where the pain is - those bumps turned out benign (THANK GOD) and are not related to the pain. On the request for the MRI, my dr. specifically asked the radiologist to LOOK for looping arteries in the brain stem near the root entry of the glossopharyngeal nerve........wellllllll, I'm a believer now! My dr. showed me the film and WOW, it is so very visible (a looped artery on top of the nerve) that I'm amazed that it was never seen before. I just couldn't wrap my head around a "likely GN" diagnosis, but once the dr. specified WHAT TO LOOK FOR and it was FOUND, I understand what this is all about - I had a very good visual! For my own reasons, I just NEEDED that! So if anyone is skeptical and digging for answers, maybe your dr. could be SPECIFIC......that was my 6th MRI, and the first conclusive diagnosis.....yes, the dr. had given me the "likely GN" diagnosis earlier, but I was not convinced. By the way, over the past 9 years, I've seen 12 different ENT's, and even spent a day at Barrow's in Phoenix having scans - they saw absolutely nothing remarkable.

Interestingly enough, I THINK I'M N A REMISSION - A GOOD ONE! I am slowly weaning off the meds (YAY!!). I think I read somewhere (long ago) that sometimes GN goes away without surgery FOR GOOD. I am simultaneously thrilled and fearful that this is gone.....fearful that it will return. Has anyone out there had or heard of long-term GN pain going away - FOR GOOD? It started mysteriously, stuck around for years, and now seems to have vanished.......? I would love to hear from ANYONE who can relate to this. Hope I don't have to reply, "Never mind - it's BACK!"

And last.....a question about GN, does anyone have a metalic or bitter "spot" in the back of their throat where the pain is located? I haven't read anywhere that this is a symptom, but I sure do have a weird taste in front of where my right tonsil used to be. Would love to know if this is part of the whole thing.

Thank you in advance........hope everyone is having a pain-free day!

painintheneck1

its sort of awesome that mention the bitter taste. when i first started having attacks i was also having terrible tastes. many things tasted funny and i also came to the point where i had 90% taste loss and numbness in tongues and lips. they did not find any other causes for this so associated it with GN. i wondered if anyone else had these symptoms with GN. cool to see i am not the only one!

its also really affirming to see other people with the same symptoms and problems as myself. i think if i had not gotten on any meds i would not be able to drive. simply turning around caused me to fall over. ridiculous you know? i have had multiple falls that were serious and they dont even bother to write it in my medical charts when i go in for appointments. i was so convinced i had something wrong with the back of my throat cause of the lump feeling and scratchiness that i got a throat scope and it was fine. does anyone find that they have a flareup at a certain time of the year? for some reason my GN seems to flareup in the fall/winter.

Quote:

Originally Posted by Mrs_Bennet (Post 593344)

Even though I am a relative newbie at all of this - it is really helpful to hear about your experience as certainly there are some similarities - including a slightly spooky one in that I went into remission in April this year and came out in August! must be the moon :)

I loved your poem - glad i didn't try some of your earlier meds! I hated the idea of going on medication - but in the end there didn't seem to be a choice. I tried prescribed pain killers but they don't seem to do anything. I may try acupuncture again as i reckon it helped a bit - but who can tell with remission being a feature.

I was on Tegretol and Neurontin at the same time while i was transitioning between the two and i got really quite sick - nausea, dizziness and eye twitching so i couldnt read without getting migraines. maybe it was just the amounts?

I also had the coughing and gag response - horrible. Before I was diagnosed I tried to describe the condition including the pain, eyes watering and gagging to a dr and he just looked at me as if i was a bit crazy - he could only hear the word throat and thought i was being a bit of a drama queen about a sore throat :)

A different dr in the same practice had come across it before and so recognised it as GPN.

I have had an MRI and it showed a bit of shading near where the 9th is located but it wasn't conclusive. The neurologist thought it probably was a blood vessel near the nerve but what i dont understand is why it goes into remission if that's what it is.

One of the things that seems to trigger it for me is turning to the right and talking or lying in bed on my right hand side. That makes me think it might be compression?

Got to go to work now but i really hope your progress towards remission continues. I am just thinking about a Christmas where the Dr has said I should only have one glass of wine during an evening! I am off alcohol all together at the moment while I am sorting out levels. i dont drink a lot anyway .. but only one over Christmas !! :)

Really pleased to have found someone to talk to about all of this !

Mrs. Bennet,
You are the first person that I can identify with the symptoms of glossopharyngeal neuralgia. I was put off by my primary care doctor until I insisted if she couldn't help me to find some other doctor who could. The gagging and coughing is terrible and the sensation is so difficult to explain. Thank you for sharing your experience. I have been prescribed Tegretol which does help after a few days but it does make may head feel a little strange...but it's so worth it!

I've had this nasty GN for over four years. I was on the maximum doses of Carbamenzaprine and Gabapentin. The pain would explode in my head and after the max doses, the neurologist said there was nothing else they could do and sent me to a neurosurgeon. Shortly after I was sent to an ENT doctor and had the injection done, the pain went away. That was eight months ago and the pain has come back in full force. I haven't read anywhere about the pain exploding in the head and wondered if anyone else has had this much pain. I don't know if I can take the Carbamenzaprine again. Thank you for the Neurotin information. Will see if that might be an option.

Sent from my SM-G900V using Tapatalk

Quote:

Originally Posted by semcsquared (Post 570014)

Curious if anyone else here has it? I've had difficulty finding other GN folk.

I've been diagnosed with GN for 3 months now and every morning I wake up in excrutiating pain. It feels like there are knives stabbing at my throat. It's interesting to know how everyone's GN started. I've tried everything from muscle relieving/relaxing cream on outside of my neck/throat to numbing throat sprays and naproxen-extra strength Aleve. Throughout the day it feels miserable, like there is something , a lump just sitting in the back right side of my throat. Glossopharyngeal neuralgia is a horrible feeling in the throat. Every night when I go to bed I tell myself it will be hone in the morning, but each morning so far the pain is still there. When I swallow my saliva it's the worse bit I'm ok when I eat food. I honestly hope it goes as quickly as it came.

New to GN and GPN, nedd some input

Hello All,
I am coming here with a likely suspicion of GN and GPN. Hopefully someone here can help to confirm if they have simular symptoms.

I do not have the traditional 'shock-like' pain, I have a constant burning in my ear, sore throat and tongue that fluctuates from an always present dull ache to searing debilitating 'electric fire' pain that lasts for hours even the entire day.

Additionally, I seem to have some TN symptoms of a tingling painful burning front of the mouth (teeth mostly) and jaw.
The facial pain seems to pulsate somewhat like a low 'spasm' of pain.
These symptoms aren't related to GN or GPN are they?

My 4th MRI included an AICA loop suprolivary fossette, presumably impinging on the root entry zone of the glossophararngeal nerve'

Has anyone undergone a diagnostic nerve block prior to MVD?
If so, by who? The MVD surgeon, or a pain Mgt specialist
I am having a difficult time being able to obtain a provider for what I believe is a critical step in the diagnostic process.

Glossopharangeal neuralgia

Hi I have had pain when talking for almost 4 years and have only renetly been diagnosed with Glossopharangeal neuralgia. How are you getting along now ?

Hello everyone,

I have just "kind" of been diagnosed with GN and placed on 100gm of Tegratol. I have self increased to 200mg as the initial dose was ineffective. No effect with 200 mg. My neurologist is not sure if I really have GN as my symptoms are atypical --- constant pain to throat, back of head, shoulder with sporadic tingling in throat which is very localized, lasting a few seconds. He says I should have sharp, electric pains that last a few seconds. My pain is not like this. I have been scoped, twice and there is nothing in my throat or esophagus. I am now in pain on the daily basis which feels like a hot iron on the back of my head. This all started close to 2 yrs now and I initially went through 4 months of hot flashes. They have now mostly stopped. MY MRI was negative but it was only done after reports of headaches, they did not necessarily suspect GN or have been advised of throat pain. At the time I did not connect the two and didn't report the throat pain (thinking it was gastric reflux). Could they have missed GN? is there something else I am possibly missing.

Really looking for someone with a similar experience.

Thank you!!!

treatment questions

My pain started with burning mouth-6 years ago? I was misdiagnosed with oral thrush, then trigeminal. It all could have begun after a messy wisdom tooth extraction with terrible dry socket. I've finally been diagnosed with glossal pain I have a specialist appointment in November. My nuerology RN has told me that I'm maxed out on meds, so I'm anxious about where to go from here. Does anyone know of good treatment centers?