I'm new around here. I've read alot of the discussion in the forums and can relate to a lot of your situations and can empathize with everyone. I thought I would share my story, although not much different then yours, thought I would get it out there and see if it it might help as I try to find what its going to take to fix this problem.. About 10 year ago I was eating a piece of pepperoni pizza and I felt a sharp pain in my throat almost like a pepperoni got lodged in my throat. I was like whoa, what was that, This was my first experience with GPN. I cont to eat my pizza and about the 4th bite after that it hit again and I knew something was wrong. Its been like this ever since. Like everyone has no eliquintly explained it took a year or so of going to ER and ENT and all kinds of tests, etc to determine what the issue was. Ive been on all the medicines, the topmac's the gabapentines, etc. The GPN will come and go with sometimes for months at a time, sometimes for weeks at a time. You just never know. Feel like your swallowing glass, can go into unbearable spasms for 5-15 seconds that you can literally hear your nerve sizzling in your throat.
My latest stint started back up around April 1st...i am on 400 MG of Zominiside (2x200mg daily). I cont to take this and deal with it. When I eat, I have to eat with one hand and drink with the other. I coat my throat with taking a drink before I swallow my bite of food as it seems to subside the stabing feeling. I can still feel the "loge" there when I swallow but if I am eating something soft it wont give me the stabling feeling. But you never know. At any time you swallow, it could light you like a christmas tree. So eating, swallowing is like playing russion roulette in a since. In the past week its gotten so bad then talking or sleeping it could set it off. The vibration of talking and then air coming in from snoring or breathing heavy during sleeping is setting off. So, I am sound alseep and I wake up like I am shocked by a car battery.
Anyway, One of the main reasons I wanted to post this message is I also struggle with anxiety. I failed to see my regular dr and went off all my regualar medicines that I was once on. Yesterday, I went back to the doctor and got back on my blood pressure and anxiety medicines and already feel so much better. Ironically, my throat has stopped hurting as well. So, I have no idea if somehow these are tied together or if the medicine I am taking for that helped my GPN.
I see my neorolgist at 1:30 today. I'll fill you in on what he says.
I've been battling this illness for 10 years and can completely relate to your pain. I have had two MVD surgeries and the pain came back.
Tegretol in high doses is the only medication that works for me. I was taking 1600 mg and had no sign of the illness if I took that dosage. Once the nerve calms down you can reduce. I currently take 1/2 tablet in the morning and 1/2 at night just to keep some meds in my system cuz the side effects from increasing is horrible for me until I get use to it again. I have seen numerous doctors and the only advice I can tell you that I've learned on my own is to keep your blood pressure down, don't do a lot of high intense cardio. When your getting the striking intense pain, try not to speak, just whisper when possible. Also, I use to drink water as fast as I could because it helped with the burning but that is the worst thing you can do. Drink as slow as possible. Soup use to burn horrifically but bread/sandwiches were fine for me. The nerve does calm down. Sometimes it takes months but eventually it calms down and I can reduce the Tegretol.
TNA is a GREAT support group and I continue to learn from it. (Trigeminal Neuralgia Association) I know we have Glossopharngeal but this assoc is for both.
I’ve started my gpn 12 years ago after biting the left posterior part of my tongue.
I tried all the seasure mess to no avail.
I was introduced to a physician who did accupuncture. He experimented with me and I was medication free.
Within the last two years the pain returned. I believe stress related.
I am a dentist and over the years have learned to identify the location of the pain source.
I believe it is a muscle spasm from the stylopharyngeal muscle. It is innervated by the glossopharyngeal nerve.
My neurologist has put me on a muscle relaxing medication.
baclophen. It works in relaxing the pain.
No other muscle med has ever touched it.
Only accupuncture and this new medication
Roland moore Dds
Thank you for the responses. I've been on my anxiety medicine (Sertraline and Clonazepam) now for 2 days and my GPN is nearly completely gone. Can just barley feel a small lump in my throat faintly when swallowing large amounts of water, etc. I am embarrassed to say I was an absolute mess with anxiety and stress and wondering if this is what was setting this off so bad. I asked my neurologist about this yesterday. He said it can contribute slighty to it but is not the cause of it solely. So, I don't know. He took me off the 400mg of Zonisamide and is now prescribing me 1000mg of Divalproex and if that doesn't work then bum it up to 2000mg daily.
I am really starting to wonder if this glossopharyngeal nerve is set off because of hig blood pressure, stress and anxiety.
Hi Chris, it sounds like its a bit of a catch 22 for you. Stress and anxiety are pretty normal reactions to intense pain, and if your more stressed it increases nerve pathway pain. If you think about the blood vessel impacting the nerve, if you've got increased blood pressure, probably wouldn't help.. Good to hear you're feeling a bit better :)