Yes, I thought it was a very weird answer for her to give me. I really don't think she knows quite what it is/was. She told me earlier she thought it was "an irritated cranial nerve," but not sure of the "mechanism" of why it was irritated, i.e., a blood vessel touching the nerve, etc. It's all strange!
But there is hope. I suffered with it for nine months and thought it would never go into a remission....I do seem think that mine was all brought on by a severe cold I had last year. Think I will go out and get a flu shot!!
Take care, and I hope today you are feeling comfortable...
How did you know when to stop taking the meds then Kara? I worry that the pain will “go away” but actually it will be the meds doing their job and if I were to stop taking them then it would come back.
I am not a really good pill taker...and I would miss a dose here or there and I would think, hey, the pain is not so bad. Then I would miss the evening dose and say, I really don't think I need to take it tonight either. When it was flaring up, I would take it.....but with the Gabapentin, I would still feel a slight pain. It only took "the edge" off of it.
I have had a few twinges in my right ear, and behind it, neawhere my hairline starts, for the past two days, but not enough to take even an Advil. It is a burning type pain. Maybe I am having a flare up?
Maybe try skipping a dose and see how long you can go without it.
This BEAST is not easy to deal with, and I am sorry that you are suffering. Write any time!!
Take care - Kara
granadam said:
How did you know when to stop taking the meds then Kara? I worry that the pain will "go away" but actually it will be the meds doing their job and if I were to stop taking them then it would come back.
Hi there you guys, I am sorry I have not been in touch and posting too much.
I have been moving through this process trying to get a diagnosis on whether I have GPN or not, and of course have seen numerous doctors and been told different things.
I did see a neurologist and she was awful. She was mean and rude. She said I did not have GPN because of my pain being all over. I basically have that constant pain in the pharynx and then it goes from right to left all in the tonsil area. If I do have GPN then I have the atypical form. Anyway, she diagnosed me with something that is like burning mouth syndrome which made no sense and think she just does not know how to deal with GPN. So, I searched around and found another neurologist who understands GPN.
Anyway, I found a new amazing ENT and he knows a lot about GPN. He first of all said that I had a lot of scar tissue and that my first surgeon who did the tonsillectomy had cut too far to the back of my throat. He thinks the scar tissue is a big problem and most likely I may need it remove it.
He also said that I may have GPN but that he was not certain. He did put lidocaine in my throat and it helped with the pain but not all the way. He said if I do have GPN he knows of the best neuro who knows about GPN.
It is so frustrating being told different things but I trust this doctor. I cannot stand this scar tissue and it drives me nuts. It has been a year since my tonsllectomy and the scar tissue should be gone by now I would think. I am also worried about making the neuralgia worse by having the scar tissue removed but it may be the next step to see if that it causing the pain. I have scar tissue on both sides.
The one neuro I saw said that I had a neuralgia affecting my throat but how can this not be GPN? She said that I did not have nerve damage and that there was nothing going on with my glosso nerve. She said she had seen patients with GPN and that is not what I had. But I have had other docs say that I could definitely have it. I have had a CT scan and was told I do not have Eagles. I just want my life back and my gut tells me that could have an atypical form of GPN.
The next step is to go back to the ENT that I love. He had me on acid reflux medicine to see if that would soften the scar tissue, He also wants me to get blood work done because he thinks I could also have allergies even though an allergist said I didn't.
My pain diminished for a few weeks so I took less Gab. Now it is much worse and I am up to 3 800 mg pills a day. It does not seem to be working and I am in a lot of pain.
I am looking at removing the scar tissue. The ENT said it was on the right side but worse on the left. He said he could make sure it did not come back but I am looking at doing a skin graph which ensures the scar tissue does not form again He may also want me to see the neurologist who know about GPN so I can get a diagnosis before we do the surgery.
I know I have a neuralgia but I don't understand what the difference is between a neuralgia and GPN. If the pain is in my throat then isn't it GPN? I also don't think I will know for sure until I get the scar tissue removed to see if that resolves the problem.
Thank you so much for all of your support. This is so hard isn't it?