Glossopharyngeal Neuralgia
 

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

Glossopharyngeal neuralgia
 

I don't have this condition but I 'know' somebody I met over the Internet, who does. It's one of the rarer symptoms of MS, which this person has.

I did a search here on NeuroTalk for you and there have been quite a few postings about GN. Here's the link for you to read through at your leisure.
http://neurotalk.psychcentral.com/se...geal+neuralgia

I Have Glossopharyngeal Neuralgia Too
 

I would love to talk to anyone about this condition. I have had it for 2 years. Please email me if possible,**.

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?

Hi - I have it too - I already posted in reply to semcsquared but i am a newby at using forums and so i dont know if you would see that. Anyway I would love to link up with others with similar experiences and would be happy to share mine. Just starting on Neurontin after only having partial success with Tegretol on 1200 mg.

Its not working yet but i am hopeful!

Blast. I hope kotter hasn't vanished yet- I had given up hope of anyone responding. Unfortunately, the forum won't let you send e-mails through it until you have 20 posts, so I'll have to try a private message. We'll see.

Mrs_Bennet, your reply to me on this thread is visible to everyone. :) I see that you're switching from tegretol to neurontin. I hope you can get to a dose that will control the pain, soon. If I may ask, do you know how yours got started? I've not really gotten to speak with anyone else about their experience before.

I've had glossopharyngeal neuralgia for 10 years, now. The first pain attack I had while having a very violent coughing attack. I'm not sure if it was to blame, or my impressive track record with strep throat as a kid. Regardless, here I am.

I'm in the process of tapering off my meds (going into remission, I hope!) but have had a bit of a set-back these past few days. Still, I'm doing much better than this time last month.

Let me know how you're doing. I hope you're feeling better than when you posted last!

Hi, great to hear from you.

I am much better thanks. The frequency of the attacks and the intensity is much reduced so that although i am still getting attacks, they are no longer distressing - more like having an annoying toothache level of pain to a little greater, especially if i have been late with the medications. I find i can now continue speaking through most but not all attacks. At least i can keep my face looking normal! so back to work on Monday after a week working from home.

I am taking 600 mg now 3xday. I think that's about the most my neurologist has said i can take so i will have to make a decision about whether to live with what might be a relatively manageable level of pain or to try something else to get to a state of no pain. I'll just see how i go. I find that Neurontin has less side effects for me than Tegretol, though on good days tegrotol stopped the attacks altogether. Tegretol just seemed so sensitive, i would have no pain for a few days and then have a really bad day for no apparent reason (ie i had not forgotten any medications) and then if for some reason the dose was a bit high, for example when i took one lot of tablets late and then the others as usual, I ended up getting very dizzy and nauseous.

I would be interested in hearing about your experiences with medications - and what sort of outcome you were able to achieve. I really hope you are going into a period of remission! one benefit of taking medications that only tone down the attacks is that i will know if i am entering remission.

i think my GPN started, though i didnt know it at the time, after a nasty sore throat where i ended up with a lump on the left hand side of my throat. I went to a EN&T specialist in case it was something nasty. By the time i got in to see him the lump had disappeared! But around that time I experienced a weird feeling on the left hand side of my throat from time to time that would result in a horrible cough-gag reaction. I probably had this for a couple of weeks and then it went away for probably a year. Then I started getting the terrible pain in the lhs of my throat - finally got it diagnosed, and then I had it on and off for a few months after which i went into about 6 months remission. It started again in August this year, gradually getting worse until i decided i would need to consider medication. i did try acupuncture until fairly recently when my acupuncturist moved to a difficult spot fro me to get to, but its impossible to say whether the acupuncture helped or whether i naturally went into periods of remission.

I find a number of things cause an attack, the usuals, but also if i talk with my neck turned to the left. This makes me think there is a physical reason that is aggravated by movement. I did have a MRI scan which showed a possible blood vessel around about where the 9th cranial nerve lives but it was inconclusive.

What a mystery though - why go into remission at all if there is a physical cause??

I'd be very interested in knowing the pattern your condition has followed, especially around remissions.

Sorry about the brain dump :) you are the first person i have communicated with who also has the condition.

I hope all goes well re going off your medications!

All the best

Yes, a lot of people find that neurontin has fewer side effects than tegretol. (I've read and posted on the Trigeminal Neuralgia forum off and on for years under different names.) I outlined my medication history in a poem, actually, which can be seen here:
http://neurotalk.psychcentral.com/thread101428.html

My pain started at age 14, but I wasn't properly diagnosed until 19. Of everything I've taken, Carbatrol (which is just extended release Tegretol) was most effective in taking away the pain. Side effects were more severe, but I adjusted to a certain extent. I did sleep walk while on it, though. Also, it interferes with hormonal birth control, and I got married a few years ago, so I switched back to neurontin.

My periods of remission and exacerbation are pretty closely related to three things:stress, allergies, and colds. The first two especially. I moved twice in high school, and didn't care for school, so I spent most of each school year in pain. :( However, once I got to college, I was much happier, and even spent nearly all of my freshman year in remission.

Throughout college I spent much more time in remission, though I typically had exacerbations for a few weeks around finals, and a few weeks mid-spring semester from pollen and such. Except for one of those times, I was able to control the pain completely with medication. (Sophomore year of college I finally got neurontin and tegretol.)

I spent August 07 - May 09 in graduate school. I spent probably 9 months total not in remission spread out over that time period. I was always able to control it with pretty low doses of neurontin (usually 600 mg)

However, this past August, it came out of remission (I'd been fine since April) and it was the worst it's been since I was in high school. I wound up on 1800 mg of neurontin, like you, and have dealt with pretty bad nausea this time around. I did try lyrica for a while, but it actually made the pain worse! Anyway, since late October, I started tapering off my neurontin and was down to 300 mg (YAY!) but have bumped back up to 600 mg. We'll see what happens. I'd really like to spend the holidays in remission.

I think that some of the Trigeminal Neuralgia folk take neurontin and tegretol together. It might be worth talking to you neurologist about.

Do your pain attacks every cause you to cough? Mine do, and sometimes to the point that I throw up. :( Fortunately, that doesn't happen very often.

I've had speaking as a trigger for a long time, and know what you mean about sometimes not being able to talk through them. I did have a new trigger this time around though. Simply bending over to pick something up on the floor (putting my head below my heart, essentially) would trigger an attack. It was pretty annoying.

I also have pain on my left hand side, but have never had an MRI to check for vascular compression of the cranial nerve. Brain surgery seems pretty extreme, especially when I can get meds to work. I don't think it's a compression in my brain, though I do think there is sometimes a compression somewhere, because occasionally I get this annoying throbbing when my nerve is extra sensitive. I'm not sure how to describe it, exactly.

I've always found drinking to be more dangerous than eating. How about you? I've also noticed that more acidic drinks are more likely to trigger an attack. (ie, water is better than soda, milk is better than water.)

How about you? My husband has just really gotten acquainted with the foibles of this... disease? this time around, and I've never really had anyone to compare notes with. I'm sorry this is so long. Like you, I'm also doing a brain dump. ;)

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 !

Nine Years with GN
 

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.

GN
 

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!

so sorry to hear you have the pain back Semcsquared, let's hope it will only be a short time before you have another break. do your meds take the pain away completely? I am on 1800mg neurontin a day and have had dull pain all the time i have been on them - better that the stabbing pain though. Seems to be getting a bit worse lately.

I have two questions for anyone who has had any experience with neurontin... firstly is it worth trying higher doses? I have read that 1800mg is probably the optimum amount and that not much improvement is likely by taking more, but it always better to hear from the experts!

Secondly, does anyone know if alcolhol can reduce the effectiveness of the medication? I have read that you need to be a bit careful 'operating machinery' but i havent read whether it has other impacts on the efficacy of the drug. I am just trying to work out if i can do anything to get more out of what i am taking in terms of pain relief.

Otherwise happy new year to you all - hope it going to be a good one!

welcome arachne - glad to have someone else to add to our collective knowledge (not glad that you have been affected on and off for 12 years though!). The first dr i saw about the condition, when i was feeling quite frightened about the pain, acted like i was over dramatising a sore throat. I couldnt get him to understand.

I saw a different dr at the same community clinic who luckily had come across the condition before and nailed it! so it was a relatively short time until i had a proper diagnosis. I tried tegretol but couldnt cope with the dizziness thatt happended from time to time. Neurontin is great in that it has very few side effects but only dulls the pain.

I am a 48 year old woman (more the typical age for it to hit than you semcsquared!) and work as a policy officer for the goverment. I am not very domesticly inclined so my new years resolution is to bake something! I do a lot of reading and like socialising with friends so it is very frustrating when my ability to speak is affected!! looking forward to continued information sharing with you all!

I have GN too!
 

I was happy to read about at least a few others that have GN...there just isn't that much information out there about it.

I had my first episode with my second preganancy (about 6 years ago), which lasted about 6 weeks. It was more annonying and strange than anything. I completely forgot about it until my third pregnancy (about 2 1/2 years ago) when it came back, worse this time. It went away and then came back again toward the end of that pregnancy. The pain was so bad my eyes would tear up, my nose would run, and sometimes I would throw up. I can only relate the pain to being tasered. The pain relented within about one or two weeks of giving birth. My doctor hoped it was related only to my pregnancies and I hoped that it was...but it wasn't.

In the last 18 months or so since giving birth, I have had multiple episodes. One lasted 7 months. I have tried tegretol, lyrica, gabapenton, and several others. I talk myself through each episode, hoping this will be the last. I tell myself it is going to go away...but it doesn't. After my last episode, I decided to consult with a nuerosurgeon. At that visit, I was on the tail end of the episode. I got the information on the surgery. I asked if stress played a factor and the doctor assured me it didn't. In the end, I told the doctor I was in the process of losing weight. He said even 5 pounds can change body composition and since GN is linked to increased blood levels, etc it might help. I decided to go off my meds and have lost 25 pounds to test this theory. Well, about 2 weeks ago another episode started. I have my 3 month follow with the neurosurgeon this week and I am going to do the surgery. Some of the meds will work for a while but then I get break through pain, so we have to either increase the dose, or add another. Other meds make me non-functional or sick.

I am 34 and have decided I am not going to live the rest of my life like this. I have 3 young kids. In 10 years I don't want to look back and remember being miserable. I have a high pain tolerance but this is too much for me.

Interesting, I read that others get that metallic taste with an episode. I get it in the very beginning of the episode...it is one of the first things that tells me it is coming back. Drinking is one of the first triggers, followed by talking and eating. With the high level of pain, combined by the talking trigger as well as the vomiting episodes, I decided enough is enough.

Anyone out there had surgery?

Hi - i havent had surgery but i'm also interested in hearing from anyone who has. I have an appointment with my neurologist in Feb and will ask about options and risks. I have just increased my dose of neurontin and seemm to be getting some better results - but who knows it's such a changing thing!

Not sure
 

I never heard of Glossopharyngeal Neuralgia until yesterday. A few days ago I had dull pain in the back left portion of my tongue. Then suddenly yesterday morning I felt a stabbing pain when I swallowed, right where the hard palate and soft palate meet (also on the left side). The pain shoots to my left ear. When pressure is put on the area it automatically causes a shooting pain (so I try to not touch the area). The same thing happens when a q-tip is pressed lightly to the back of my throat. If I grin or yawn it also happens. I tried Tylenol with absolutely no relief.
The shooting pain made me feel like I was going to pass out so I went to the on-call doctor at my clinic. He checked me out, didn't find any signs of viral or bacterial infection. He said it seems like GN. I am only 27.
Looking back I have had excruciating shooting pains in my left ear on and off (about 4-6 times a year, lasting 1-2 weeks) for the last 3 years. It was always localized to my ear and throat. It never involved this mouth and tongue pain. I had gone to my doctor, an allergist, and an ENT, but they always just prescribed antibiotics and sent me on my way. I did read on some sites that GN is progressive. Could my previous ear/throat pain be related to my current pain? Does this all seem similar to anyone else's experience? Does this sound nothing like how GN happens?

Thanks!

Hi Nemily,

I had a couple of short term experiences maybe a year apart before GN became more prominant in my life. I assumed that it was linked to throat infections and I was only diagnosed with GN about 2 years ago. I dont seem to get pain from pressure on a certain point though i have heard that this happens with some people. Mine is triggered by swallowing, yawning, laughing, sneezing and more lately the most common trigger is talking. I am currently pretty much pain free with my current medication (Neurontin) and have been for about 6 weeks now. Though i have been feeling a bit of an irritated feeling in the back left side of my throat a bit lately and am a bit freaked that it might be coming back.

I had episodes on an off for some time before I went down the medication path.

I have also had periods where i have had more of a chronic ache rather than the spikey pain. All sorts of effects! but always on the left side in a similar spot to you.

So your symptons do sound consisent with a GN diagnosis, but if that is what it turns out to be dont panic. There are medications that seem to work and many people have significant periods of being pain free even without medication. My neurologist (who hasnt actually come across someone with GN before me) has done some research on surgical interventions and says that this is successful for many people. I am keeping that one up my sleeve in case the meds stop working.

Good luck! it has helped me to know that others have had a similar experience as it is pretty hard to explain to someone who hasnt been there. I hope it helps you too.

I have had GN a long time.
 

Hi there,

I have had GN for 17 years.I have been on 1200mg of Carbatrol for nine years and have developed more side effects and pain in spite of it. Now I am faced with the surgery. My question is about the results of the surgery. At Mayo Clinic, they plan to decompress and sever the nerve. I am concerned about what I will lose besides the pain. Has anyone had this surgery with the nerve being severed? As far as I have learned in reading, the nerve goes to the tympanum, controls the bitter taste buds at the back of the tongue, and goes to the pharynx that aids in swallowing. The taste buds will die, and I don't know what else will happen. Will I no longer be able to swallow? I have the surgery scheduled for next month, but need more answers.
Thank you,
Tammy

Well, it looks as though this forum has been dead for a few months. I hope that means that everyone is in remission.

I am a 43 year old male who was diagnosed with GN 5 years ago. When I first felt it, I thought I simply had a sore throat. Although I could tell there was something different about it. It went away for a few weeks and then came back and was very painful. I feel fortunate that it was diagnosed quickly. I tried several meds but none were really helpful. After a couple of months it went away. I thought it was over. But about 7 or 8 months later it came back. This time, although painful, I was able to control it with both Neurontin and Trileptal. I don't remember the exact dosages, but for the most part the combination of both seemed to work. Again, it went away after a few months only to return the following spring. As before, the meds did a decent job of keeping it at bay. It was just a pain in the rear having to take all of this medication, but it was certainly better than the alternative. My neurologist had mentioned a surgery in which they cut the nerve and was actually pushing me to do this. I wanted no part that and switched neurologist. Again...remission. Last year when it came back it seemed as if it was either worse, or the medication was losing its effectiveness. My neurologist suggested a steroid pack. His basis for this was that his mother had TN when he was young, and she would always do this when it started and it seemed to help a lot. It didn't help me. One Sunday afternoon I was on the couch with my kids, reading them a story, when I had one of the most painful attacks of pain I had ever had. Now I am a 43 year old man. I've never considered myself to be an overly tough guy, but I'm not a wuss either. This attack put me in the floor screaming in pain. I don't care to tell you that there was water in my eyes. These kind of attacks continued for a few days and I decided that it was time to talk to a surgeon. Enough is enough. Being in a small town just outside of Knoxville, Tennessee, I figured that there probably wasn't many surgeons in this area that was familiar enough with GN. I asked my neurologist to refer me to one outside of the area and he did. Problem is, that by the time I met with him...you guessed it: remission. He spent a lot of time with me going over the surgery and suggested that we not do it at that time because he had seen cases where GN had went into remission and never returned. I agreed with him and decided to wait and hope that it was gone for good. Yeah, right.

Fast forward to this past spring. My GN returned. I don't know how it comes back for the rest of you, but in my case it always starts mild and gets worse in time. My problem was that to control my GN, I was taking a lot of medication. So much so that it was impossible to do my job and take my meds both, because I drove a company vehicle. So, like a dummy, I backed off of my medicine. On the last day of June, I was having a bad day with pain. It wasn't unbearable to this point, but I could tell it was getting worse. Toward the end of the day, I coughed and it was like a firecracker went off in my left ear. I hit the ground wrenching in pain. About 15 minutes later..another one. At this point I called my supervisor and told him I had to go home. He was aware of my situation and understood. I have not been back to work since. Once I got home and was able to start taking my full dosage of medicine every day, I was okay for a few days. On July 3rd I went to bed and stayed there until about 4 days ago. Over a month in bed due both the pain from GN and the side effects of my medication. I would take medication 4 times daily. Each dose consisting of 500 mg of Trileptal and 1200 mg of Neurontin. That's 2000 mg of Trileptal and 4800 mg of Neurontin daily. At the beginning of this stay in bed I also mixed in some Tegretol which led to a trip to the Emergency room. I already had made an appointment to once again talk to the same neurosurgeon from a year earlier. During my month of doing nothing but lying in bed, I would have liked to go and see my neurologist. But they would not see me until September (this was July), even after I told them of my trip to the emergency room. I think I am going to find a new neurologist.

SATURDAY AUGUST 7TH: As I sit and type this at 4:30 in the morning, my GN is heading fast toward remission. I now take medicine only 3 times daily (5oo mg of Trileptal and 900 mg of Neurontin). I could probably even back off of that a little more. I still feel a little something every so often, so I know it's not completely gone. But it doesn't matter. I'm not putting it off for another year. I have been a slave to this monster for five years and I refuse to do it for another. In two days I go to Vanderbilt to undergo MVD surgery. This surgery does not consist of cutting the nerve, but I told the surgeon if that is what it takes, then so be it. I'm tired of the pain, and I want my life back. I am glad that I have found other people that know what this is like. I think the worst part of this, is that no one else knows the kind of pain that we have to endure. I will check back in a few days, hopefully after a successful surgery. I wish all of you the best, and will pray for each of you.

Another poor GPN sufferer here in Denver.
 

Hi all,,, I am Tess. Newly diagnosed with GPN but have sufferered for at least 3 years with it. I am a Righty with the pain focused under my upper tongue and my back teeth and gums and right side of the throat. I kept running to the dentist thinking my teeth had cracks in them. Spent more money than I care to recall getting unneeded dental work done. Finally went to a root canal specialist who tentatively diagnosed it and recommended an MRI and a trip to the Neurologist. Geez,,, guess what happened? I went into remission for a year. I nearly forgot about it. Met the love of my life, had a beautiful Grandaughter. Many blessings! Now I have been in hell for 2 months. My PCP was beside himself and clueless. It took a month to get in to see a Neurologist and she said "You have a very rare disorder and there isn't a whole lot to be done other than medications." <Yes, I waited a month for that.> I will have an MRI on Monday. Very low dose Tegretol because it makes me very tired and dumb and I am trying to keep my job. What a life! I have had a few good days in a row and am praying for remission.

Tess, check into Surgery. I fought this thing with medication for 5 years. I just had my surgery and will write about it a little later. But do not be a slave to this disorder, take your life back.

Why are they severing the nerve?

Tammy,,,,,
 

The nerve does not, should not, be severed. They need to place a teflon sponge in between the artert and the nerve. Boom. You are fixed. No severing.

My thoughts exactly.

Just diagnosed with G.N...looking for any infomation
 

:confused:Diagnosed few days ago... pain has been on and off for several years.. followed typical pattern. treatment for sore throats,,T&A age 40, metal taste in mouth,,dental work,acid reflux, the last year has been 50% full of pain... just started triliptal and tapering up to 2400mg over next month with nuerologist orders... day three and nausea begins... Any how any informations will be helpful!... tips for pain releif,,,, work,,,dealing with focusing,, i seem to have short term memory issues,,

Unfortunately, the only tips I can give for pain relief is the medication. I was taking a ton of it before I finally decided to have the surgery. It got to the point that the pain from the GN, and the side effects from the medication were both equally bad. I like not having the pain now. But I am also thrilled to not be taking a ton of medicine. I never had the taste problem that others seem to have. If the pain is that bad, I would strongly consider surgery.

McLovin
 

I find it quite difficult to navigate this forum. Please **message me** and I will tell you of my happy news !!

Tess

McLovin
 

I got my PCP to send me to a Neurosurgeon. Prolly cause I was writhing on his floor crying. Neurosurgeon is doing a full scar MVD this Monday. He thinks there may be trigeminal involvement as well. Wish me luck!

Tess

cant get enough sleep!
 

day 7 in my ramping up of triliptal and I am so drowsy!!! I am afraid to drive. only go to grocery and bank.. i feel like i am a hundred..:(

Hi Katie!
 

Sorry about your diagnosis. I have been living with GN for 3.5 years. Had a one year remission but when it came back in June, it came back in a big way. I am lucky enough to get surgery on Monday and hopefully, I will be a good statistic. As in cured. I can't live on the meds and they really don't work well anyway. Right now I am on tegretol 800mg and lyrica 300 mg. I haven't raised the dosage in 2 weeks so the effects are nearly gone and I am going on my 3rd really bad day in a row. I feel like I am at toxic levels already with double vision, balance problems, and difficulty finding words. It is difficult to drive and basically to live a normal life. I have been off work since the 16th of August. Surgery is my only choice.

Anyway, welcome and I hope for luck with the meds.

Tess

good luck to you
 

good luck hop all goes well keep us updated!!!:hug:

Hoping and praying that all went well today. Hopefully your recovery goes better than mine. Since my MVD I have had trouble swallowing food and have had considerable voice loss. Found out that I have a paralyzed left vocal chord. I have a follow up appointment next week and will go from there. I couldn't eat in the hospital following my surgery and could barely drink anything. I think this made my recovery much harder. It wasn't until the last day in the hospital that I was able to take any pills. The good thing is that I have felt no pain from GN or TN.

In a couple more days I will be completely off of my medication, which is just about as good as being pain free. I have been out of work since the end of June, but will return in two weeks.

Let us know how you are doing. Good luck!!

End of June, my boss pretty much told me that I could not work until I was off the meds. The Trileptal was really rocking my world - worse than it ever had. Fortunately I had already started planning for surgery. With me, it got to the point that the meds were almost as bad as the pain. What was weird was that they messed me up more physically than they ever had. I simply could not function in a normal manner with them anymore. But, they were much less effective in controlling the pain. I always said that I would fight it with the pills as long as I could so that I could avoid surgery. But now that I have had the surgery, I look forward to not having to take the medicine almost as much as I look forward to being pain free. That's saying a lot because the pain that I had was unlike anything that I have ever experienced. How much meds are you taking? I was 2400mg Trileptal / 4800mg Neurontin per day. Hopefully you don't have to approach those levels. Good luck.

meds
 

i am to work my way u to 2400 of triliptal... the side effects are slowing me down so i am at a stand still till my stomache settles,,, i am now being worked up tfor M.S. also.. scary *****.. i am not at work but hopeing to get back as soon as i have some relief.. so far not working. at he end of the day it is excrutiating pain and through out the day if triggered same results... Doc has considered adding another drug but will not discuss it until we are up to full dose of tripiptal... hope you are felling welll could yo discuss more about the surgery and the recovery time you expect...:hug:

question about cognitive issues and meds
 

I have also been having cognitive issues with the start of meds... no short term memory.. hard time with word recall and speech is stumbling often.... anyone else have these issue....? i am in healthcare with high stress and high need for in depth cognition.. this is scaring me for my future employment issues...

I had trouble with speech when I was on the medication. My MVD was on August 9th. I was in pain for a few days afterward with some headaches. But, that was expected and paled in comparison to the pain I had before the surgery. I am fully recovered from the MVD. I have no pain and will return to work next week. I had a misconception that I would feel great immediately after the surgery. It wasn't as easy as I thought, but again, well worth it.

GN
 

i have had this condition for 2 plus years and would love to talk if you would