Hi!! I’m new to this site and have some questions. First I’ll start with my history. I was diagnosed with GN in may 2010 but had been suffering with it for about 2 years prior to a diagnoses. My doctor initially had me on lyrica but I’m a paramedic and it made me so that I could hardly work with the sleepiness side effect. He switched me to neurontin and I was to 2400 mg a day when it finally started to work and was in remission by June 2010. I had not had any problems until the first week of may 2011 and I honestly thought I was having s tooth problem because the pain started around a tooth so I went to the dentist but he didn’t find anything. The pain then started only when I swallowed for a few days and was pretty tolerable. This past Saturday I got on a plane to see friends that I only get to see once a year in las Vegas to celebrate my 40th birthday. I was still just experiencing the pain on swallowing until Saturday night when I tried to sleep. I woke up with the pain excruciating down the left side of my face, I could feel it starting around my ear and down my throat and when it hit the back of my throat I was gagging and vomitting or dry heaves. Needless to say I didn’t sleep the first night and ended up taking the taxi to the ER where they gave me dilaudid Valium and a steroid which made me pain free until it all wore off. This poses my first 2 questions. How can this be GN if it responded to a pain killer? And has any one else had trouble with airline travel seeing as I was fine until after my airline travel. The doctor at the ER gave me percocet but all they do is make me extremly sleepy. I can’t do anything. When I lay down, move my head, walk, go from sitting to standing or stand to sit, everything the pain is awful. I have suffered this whole trip because it’s uncomfortable to do anything but I have tried to be trooper. This pain is constant like knives in my ear, do any of you have suggestions for anything to temporarily relieve this pain until I get home and to my own doctor??? I leave tomorrow morning. This is the worst. 
Hi Cheryl…sorry to hear about your recent flare up.
I tell you, the SEVERITY of my pain changes from day to day it seems. It always starts deep in the ear, then creeps down my neck…sometimes goes down my right arm, which is kind of new. The best med for it I have found is Neurontin…and I am going to try to go back on it…and just exercise more, I guess. Did you experience weight gain while being on it?
This is the weirdest thing I have ever experienced. I try to describe it to people and they just raise their eyebrows and say, “Wow, that is really strange.” From the outside I guess I look pretty normal. On the inside I am wondering what the heck is wrong with me, if this could be something more sinister than just GN?
Anyways, sorry this had to mess with your Vegas trip!! Nice bday present for it to raise its ugly self!!! I have never seen on this site that it was exacerbated by flying, but I have to fly to Phoenix in a couple weeks so I will let you know!
Take care and I hope by now you are feeling a little better ~ Kara
Hi Kara. Mine also seems to start deep in my ear and moves down my neck and sometimes into my shoulder. I haven’t been able to lie flat now for a few days because it flares every 2 mins so I’ve been sleeping sitting up. I know what you mean about trying to explain thus to people, they look at you like you have a third eye. My vacation to Vegas really was ruined because I don’t even think my friends understood it and they were starting to become irritable with me when I couldn’t do everything. I go to the doctor later today and I hope that she does something because this is beyond terrible!!! I also meant to mention that I didn’t seem to experience weight gain with Neurontin but all it has done for me is make me extremely tired, I want to go back to work as a Paramedic but I can’t with the pain or the tiredness. Hope your days are pain free. I’m still so glad to have found all of you that understand this horrible disorder.
•Cheri
Kara Wilson said:
Hi Cheryl…sorry to hear about your recent flare up. I tell you, the SEVERITY of my pain changes from day to day it seems. It always starts deep in the ear, then creeps down my neck…sometimes goes down my right arm, which is kind of new. The best med for it I have found is Neurontin…and I am going to try to go back on it…and just exercise more, I guess. Did you experience weight gain while being on it?
This is the weirdest thing I have ever experienced. I try to describe it to people and they just raise their eyebrows and say, “Wow, that is really strange.” From the outside I guess I look pretty normal. On the inside I am wondering what the heck is wrong with me, if this could be something more sinister than just GN?
Anyways, sorry this had to mess with your Vegas trip!! Nice bday present for it to raise its ugly self!!! I have never seen on this site that it was exacerbated by flying, but I have to fly to Phoenix in a couple weeks so I will let you know!
Take care and I hope by now you are feeling a little better ~ Kara
Hi Kara. Mine also seems to start deep in my ear and moves down my neck and sometimes into my shoulder. I haven’t been able to lie flat now for a few days because it flares every 2 mins so I’ve been sleeping sitting up. I know what you mean about trying to explain thus to people, they look at you like you have a third eye. My vacation to Vegas really was ruined because I don’t even think my friends understood it and they were starting to become irritable with me when I couldn’t do everything. I go to the doctor later today and I hope that she does something because this is beyond terrible!!! I also meant to mention that I didn’t seem to experience weight gain with Neurontin but all it has done for me is make me extremely tired, I want to go back to work as a Paramedic but I can’t with the pain or the tiredness. Hope your days are pain free. I’m still so glad to have found all of you that understand this horrible disorder.
•Cheri
Kara Wilson said:
Hi Cheryl…sorry to hear about your recent flare up. I tell you, the SEVERITY of my pain changes from day to day it seems. It always starts deep in the ear, then creeps down my neck…sometimes goes down my right arm, which is kind of new. The best med for it I have found is Neurontin…and I am going to try to go back on it…and just exercise more, I guess. Did you experience weight gain while being on it?
This is the weirdest thing I have ever experienced. I try to describe it to people and they just raise their eyebrows and say, “Wow, that is really strange.” From the outside I guess I look pretty normal. On the inside I am wondering what the heck is wrong with me, if this could be something more sinister than just GN?
Anyways, sorry this had to mess with your Vegas trip!! Nice bday present for it to raise its ugly self!!! I have never seen on this site that it was exacerbated by flying, but I have to fly to Phoenix in a couple weeks so I will let you know!
Take care and I hope by now you are feeling a little better ~ Kara
Hi Cheri, I too am a recently diagnosed sufferer. Neurontin 2400 has worked for me for the most part, along with 600 mg tegretol, at the cost of extereme drowsiness. I live in Vermont, and have noticed while driving up or down a mountain the pressure change does trigger the start of an attack. My take on this strange illness, and my neurologist agrees, is that there can be different causes and symptoms of this illness. While they know it is the 9th cranial nerve, they often times do not know the cause or the severity of damage or the exact location. In 2/3 of the cases where they locate the problem, it is an artery putting pressure on the nerve. I am the only case my neurologist has. I disagree with this notion that opiate painkillers do not help. Demerol and valium reduced my pain greatly in the ER. They are not a good long term solution because of addiction worries. I have requested five strong pills month (my number of episodes) and have to fight for it, because the feds are pressuring doctors to prescribe less. Better we suffer than an addict get his fix, and they get it anyway. good luck…Jim
James A Foster said:
Hi Cheri, I too am a recently diagnosed sufferer. Neurontin 2400 has worked for me for the most part, along with 600 mg tegretol, at the cost of extereme drowsiness. I live in Vermont, and have noticed while driving up or down a mountain the pressure change does trigger the start of an attack. My take on this strange illness, and my neurologist agrees, is that there can be different causes and symptoms of this illness. While they know it is the 9th cranial nerve, they often times do not know the cause or the severity of damage or the exact location. In 2/3 of the cases where they locate the problem, it is an artery putting pressure on the nerve. I am the only case my neurologist has. I disagree with this notion that opiate painkillers do not help. Demerol and valium reduced my pain greatly in the ER. They are not a good long term solution because of addiction worries. I have requested five strong pills month (my number of episodes) and have to fight for it, because the feds are pressuring doctors to prescribe less. Better we suffer than an addict get his fix, and they get it anyway. good luck.......Jim
Hi Jim
So glad to meet you and your name is GREAT, my Dad and step dad are Jim too :) I go to my new neurologist on June 2nd and I'm looking really forward to it so I can get this all under control and have a life again!! My pain has been pretty well under control now for a few days except for when I drove through the mountains here yesterday I had a small flare but it only lasted a few seconds after I took a drink of water. I think my elevation theory though has been proven..lol. I live in the low mountains of Arizona and that was the first time that I had been in the high mountains since this episode had started, which by the way this is the first episode that I've had since I've moved here. I also believe opiates help, Valium had helped in the past and it helped when this first started and I was having the gagging. When I got home from Las Vegas my family doctor put me on Morphine and it helped tremendously but all I did was sleep. This flare suddenly stopped about 4 days ago. I wish it had quit in Las Vegas, I cry every time I think about how my trip that I had so been looking forward to was ruined because of this stupid disorder :( I have read so many negative things about surgery but I would do anything to be rid of this stupid thing!!
Hi There,
Sounds as if you just began with these symptoms of pain. Wondering how your pain is doing, if it yet has a pattern, or if you can notice what brings the pain on first. You know they say that many of Trigeminal/Glossopharyngeal pain begins from either dental work, or problems with the teeth. Wondering if when you went to the dentist, did they ever numb any area for any work you had done? They say that those predestined for this lovely pain, can be brought on b¥ dental work, especially when a nerve is affected by a needle during numbing. I think we all try to figure out when or why this pain began. As to the pain meds helping, they definitely will help in the beginning. Once your tolerance is built up it can be more difficult to feel effects from any meds. As far all of those other meds, anti depressants, anti convulsants, and all the others, don't think they really do much for pain, they may help you cope more, but each case is different. As far treatment, cures, the main one is the micro vascular decompression of that certain nerve. Think it is difficult though to pinpoint exactly which nerve is the problem until they actually look surgically. Also this pain can be brought on by swallowing, eating, etc. It isn't a normal sore throat, more like a freezing, burning pain. There is a big difference, since eventually the pain is there regardless of the use of that nerve. As for flying that cranial nerve is next to the nerve that controls balance, therefore that is why ear pain is usually associated with the throat pain. There are more docs today that specialize in this, but it is vital that you begin with the right one. I went on for quite awhile w/o a diagnosis since there is not that many docs familiar with glosso pain. I had just turned 40 when I got my pain at first, and I knew immediately something was wrong. I think you just know. Dr. Peter Janetta out of Pittsburgh was the one who invented this surgery, and he did my surgery 3 times, but he is too old now. But the same group has earned a great name, but he had taught many others his procedure, so now there are more that can do this MVD. Find the best though! One way you know if this is nerve damage causing this pain, is when brushing the back of your throat, the affected side has much less of a gag reflex compared to the other side. Another is when they put a numbing gel on the back of your throat, it takes the pain away until the gel washes off, a few minutes later. Unfortunately though that is about the only way of clinically diagnosing, w/o surgery. I do think with this pain there is something about the 40 YO range that this pain announces itself. Hope this helps, and please let me know how the pain is, or if it has left. You may need to begin with a pain specialist, that can do blocks for diagnosing. Good luck! If you have anymore questions, please let me know.
Kim