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 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!

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.

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.

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.