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!!!

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 ?

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

hi painintheneck,

I hope you are indeed in remission. While i have had this condition for a relatively short while, i do remember the anxiety assocoiated with the symptoms going away. i amost felt suspicious initially - that i was being lulled into a false sense of security

Once in remission it was hard to believe the condition was really there! my last period of remission was for 5 months and when it started gradually returning, i actally thought it was a throat infection. I'll be more aware now of the patterns.

My previous remission after a relatively short and undiagnosed period of GN was for a year. So certainly long periods of remission seem to be part of the beast - I think i might have read that it might go away for good sometimes, not sure. nothing about it makes sense to me so hopefully it could disappear!

I'm not sure if i have experienced the metallic taste - i remember being convinced, before diagnosis, that it was a horrible infection because of a 'poisonous' (v hard to describe!) taste or sensation in the back of my throat. of course there was no infection there to account for it. The best way i can describe it now that the meds are muffling the worst of the pain is a burning sensaton.

I would also love to hear about any long term remissions.

all the best - I hope you can relax and enjoy the break - which will hopefully be a very long one or for good!

mrs_bennet

Hi, Mrs. Bennet. Sorry I'm so slow getting back to this thread. Busy witht he holidays and all.

I hope your meds have gotten worked out. Today is my second day off meds since August. So far... okay. We'll see. I know what you mean about doctors thinking you're being a drama queen- it's impossible to convince doctors that you're in pain at age 14! I was once sent home from an after-hours clinic with some Motrin and some suckers. Seriously.

I think it's interesting that you have a problem lying on your right hand side. For me, that's the better way to go. IIRC, we both have pain on the left. Quirky.

Maybe you can find some fun non-alcoholic beverages for over Christmas. I have a non-alcoholic wassail recipe if you're interested.

Hey, painintheneck! I'm glad you've found us! My situation was a lot like yours, at first. I've had it 10 years, and wasn't diagnosed for the first five. They also took my tonsils out, hoping to fix the problem. (Though I certainly needed them out, anyway. The ENT said they were rotting. Ew.) I don't think getting them taken out made my pain worse, though.

I have never heard of GN going away for good, though my neurologist did express a hope that I might grow out of it. Until a few months ago, it seemed like I might. I'm almost completely in remission, now, and hope to stay that way for a loooong time. We'll see what happens.

I don't have any strange taste where my pain is, but my pain is more the back of the throat, so I don't associate it with tasting anyway. I have noticed that the whole area of my throat flushes when I have a pain attack. Very odd.

Are you considering MVD? It sounds like yours is definitely from a compression! I've never had an MRI for my GN, only for headaches, and that was several years ago, now. Typically, those documents are kept only 7 years, so I'm sure it's long gone.

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.

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?

Hi semcsquared,

I made it! I posted a bit about my journey to GN in the forum for newbies. I'm at work now, so I've got to get to work. More later.

arachne

Hi, arachne! I'm glad you made it! We move pretty slowly around here, but not as slowly as that yahoo group. Discussion is more lively on the Trigeminal Neuralgia board if you want more folks to talk to. They have many of the same experiences as we do- especially with medications.

I read your introductory post, so I will share my stats, too. I'm a 24 year old woman, also married, but no kids. I'm currently unemployed, but I'm educated as a medical physicist and am looking for a job. I also like to knit, but I confess I'm not very good at it and have never made up my own pattern. (I go by this name on Ravelry, too. If you're on there, you should look up the neuralgia group.) More than knitting, I enjoy baking! (And, of course, chocolate. )

This month marks my 10 year anniversary for having GN, though I went undiagnosed for the first five years. No one, it seems, expects neuralgia in a teenager. I was in remission all through December, but three days ago it came back with a vengeance, so now I'm back on the meds. I'm just so glad to have them at all, and it's reasonably well under control for the moment.

I hope that you're having a good day. Welcome to the boards!