Random questions about GPN

General General TN & GPN (Old Site)
1

Hell everybody,

I'm new to this website, but I've been using it as a tool to help answer my questions about Glossophranygeal Neuralgia for a while now. About time I joined, hey! Okay so I've done extensive research on GPN and have been seeing a Neurosurgeon who has had a lot of his works about Glossophranyngeal Neuralgia published in medical journals. He has helped answer a lot of my questions, but now I need your input. So here we go, random questions

Has/Had anyone every had the following:

--Chest pain

---Strange smell/taste in tonsil area that no one else can smell. not even the ENT haha.

----Pain when sitting a certain way. i.e. in bed. i.e. slouching.

----- Horribleeeeeeeeeeeeeee hangovers (even before you started taking any medicine for the pain).

------ pain in the lower molar area

I am pretty positive, and so are numerous Neurologists, Neurosurgeons and ENTS that I have GPN. But! The things I mention above don't really match with what I've read about GPN. I never had any of the above symptoms, until I got the pain two and a half years ago. Most of them, besides the molar pain, have come gradually over the past year.

Also, I hear/read about people being woken up from have a pain attack. The only time I don't have pain is when I sleep. Sometimes it's hard to get to bed if the pain is strong, but when I'm sleeping, I never wake up. Maybe once or twice it's happened.

I also have a window of 10-15 minutes when i get up in the morning where I don't have any pain. Like the nightmare's over, and then it all comes back. It gets worse throughout the day.

I'd love to hear what everyone has to say about the above things.

I really enjoy reading the discussions on this website. Extremely helpful and encouraging.

2

My symptoms are so similar. My pain is in my ears. I have had some of the above mentioned symptoms. I have never associated those with GPN. I too feel NO pain when sleeping. It use to wake me up years ago. I thought I had ear aches. Once it came on strong and never left me, I never wake up because of it. I am still taking the medicines for GPN. I am currently waiting for the neurosurgeon from MUSC to read my ctscan. He seems to think that it's not GPN but that it is Eagle's Syndrome. I am waiting to go back to him for shots in my ears. Welcome!

3

Jade,
The molar pain could be trigeminal which I had. I also had some uncontrolled hiccuping which I think may have been part of my vagal nerve involvement which lies adjacent to the GN. My surgeon said that the oftentimes the same artery presses on both the GN and vagal. See my comments to Chris. Read" Striking Back" by Dr. Kenneth Casey for a better understandng of all these nerves and associated fascial, neck pain. I hope you are able to enjoy your Christmas. It’s a blessing to be able to swallow! I was always able to sleep at night and that too was a blessing!

4

It sounds like your degree of symptoms is a little different from mine. I sleep great at night but only have throat constriction feelings before sleeping. I get chest pains and become short of breath to varying degrees throughout the day. That's why all the doctors kept thinking I had anxiety. Anyway, while I'm at a state of rest, all seems to relax causing the heart rate to slow and my GPN to ease up. I'm most affected when I'm trying to exercise. I can't seem to talk due to being out of breathe. My speech is somewhat compromised throughout the day. It gets worse later in the day though. I'm looking into having the surgery but am nervous about the potential risks. I'll report back with my progress as I move towards surgery.

5

ive generally had mine reoccur when im in bed.. like if im laying down and try to sit up.. and the other time was streching in the car. the last episode lasted 4 hours.. the worst part was they gave me 2 doses of dalodid.. and it doesn't help with nerve pain. i was just really relaxed and in severe pain all at the same time. My pain is more of a softball full of nails in the left side of my throat, excessive salivation and severe pain running from my tonsils and throat to my jaw and ear.. Im only 20 years old. I dont understand why i would have something like this so young. However i had extensice mri's and cat scans done. Neurologists dont have a clue why it happens there is not any blood vessels or tumors pressing on it so i just have to be medicated for a while. I wish all of you the best of luck with surgery. I hope it does the trick!

6

Hi Jade,

I am more likely to get an attack when swallowing if i have my head turning lightly toward the right or if i am slouching. My attacks occur on the right side of my head/throat.

Until recently my GPN has been well managed through meds but recently it's all stirring up again. I notice that when i wake up I feel like it's gone somehow... but then it comes back as the day continues. Mine is mainly triggered these days by talking. Bit tricky at work!

take care and good luck! Clare

7

In terms of location of pain, I used to have (I underwent surgery this summer; so far so good) the majority of the pain in my throat, maybe about 85% of the time. The rest of the pain would either be in my ear area like i had a horrible ear ache, or the lower molars like i had a horrible tooth ache. If you read up about the GPN, it does split into three branches, with one going towards the ear, the other the lower jaw/tongue area, and the main one behind the throat, so having pain in the other two regions can be had.

8

Hey Ron,

Thanks for posting. I have horrible pain in my lower right molars.
This is actually how everything started. Then the horrible stabbing feel in my
Ear and tonsil came. Along with a burning feeling along the side and base
Of my tongue. Im getting MVD surgery/rhizotomy in a month.
Was your artery hitting your nerve, or was there no
Explination for the pain?

Jade


Ron Hammond said:

In terms of location of pain, I used to have (I underwent surgery this summer; so far so good) the majority of the pain in my throat, maybe about 85% of the time. The rest of the pain would either be in my ear area like i had a horrible ear ache, or the lower molars like i had a horrible tooth ache. If you read up about the GPN, it does split into three branches, with one going towards the ear, the other the lower jaw/tongue area, and the main one behind the throat, so having pain in the other two regions can be had.

9

According to the MRI's and other things done, it was apparent that the artery was not aligned as it was supposed to be. Doctors had no problem seeing it and doubting that was the cause. However, my surgeon does not do MVD for GPN (although he does use it for TN). He feels GPN rhizotomy/neurotomy is a better way to go with GPN. This is discussed in the GPN Rhizoctomy/Neurotomy discussion on the web site. Good luck. I came out of it all great!

10

Hello Samantha,

Its really bad to hear that you suffer from GPN. My wife is suffering from the same and she is 27 years. She had few symptoms similar to yours. But when she is in sleeping position, she really does not get any pain or electric shock. Whenever she gets the pain / electric shocks behind her ears, near TMJ area, she sleeps and feels relaxed.

I would suggest you to go to some good doctor and get advice on Pulse Radiofrequency. But one advice, go to doctor who has performed Pulse Radiofrequency on GPN. My wife had gone under Conventional Radiofrequency treatment, and the thing got worst. So if you want to try, go for Pulsed Radiofrequency and not Conventional Radiofrequency.

I hope you find some other alternate treatment and you get pain free for rest of your life.

Regards.

SamanthaMoench said:

ive generally had mine reoccur when im in bed.. like if im laying down and try to sit up.. and the other time was streching in the car. the last episode lasted 4 hours.. the worst part was they gave me 2 doses of dalodid.. and it doesn't help with nerve pain. i was just really relaxed and in severe pain all at the same time. My pain is more of a softball full of nails in the left side of my throat, excessive salivation and severe pain running from my tonsils and throat to my jaw and ear.. Im only 20 years old. I dont understand why i would have something like this so young. However i had extensice mri's and cat scans done. Neurologists dont have a clue why it happens there is not any blood vessels or tumors pressing on it so i just have to be medicated for a while. I wish all of you the best of luck with surgery. I hope it does the trick!