Please help! Does anyone have both trigeminal neuralgia and glossopharyngial neuralgia? Or understand the symptoms?

General General TN & GPN (Old Site)
1

I just met with a new neurologist and he said I may have both TN and glossopharyngeal neuralgia and something else going on maybe fibromyalgia. Lucky me. Anyway, I have been experiencing extreme pressure in my throat to the point I feel like I can not breathe and am choking. I just wondered if there is anything I can do to help this. I have tried things to reduce swelling and help with pain as well as move around in multiple positions trying to find relief. Can anyone help?

I appreciate any ideas! Thanks.

2

This maybe a long shot, but have you been evaluated for an Arnold Chiari Malformation? It is a structural abnormality of the brain stem that puts pressure on the central nervous system. Symptoms are many and varied, with fatigue, pressure, and choking in the list. My bilateral ATN is thought to be a result of this condition ( by my neurosurgeon).
It can be seen on a MRI by a neurosurgeon familiar with the disorder.
Just thought I would mention it.
Best of luck!
Christine

3

Have you had steroids to lessen the swelling of throat???

4

Thanks for your response Christine.

I've had so many MRI's but all showed nothing.

Christine said:

This maybe a long shot, but have you been evaluated for an Arnold Chiari Malformation? It is a structural abnormality of the brain stem that puts pressure on the central nervous system. Symptoms are many and varied, with fatigue, pressure, and choking in the list. My bilateral ATN is thought to be a result of this condition ( by my neurosurgeon).
It can be seen on a MRI by a neurosurgeon familiar with the disorder.
Just thought I would mention it.
Best of luck!
Christine
5

Thanks for your response Kc Dancer.

Yes I was on an extremely high dose of steroids for 5 days. It made a huge difference! The problem is lower doses don't do anything and you can only stay on such a high dose for 5 days. I've even asked my doctor can I just take them once a month. He said it would do so much damage to other organs that I can't do it that often.

Kc Dancer Kc said:

Have you had steroids to lessen the swelling of throat???