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 !

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!