Does anyone have GPN on both sides? My face was in tremendous pain the other week just like the side i have GPN on. I have been having extreme headaches on the opposite side as well. Now i amstarting to have that fuzzy feeling in my throat on the opposite side which is how it started out for me. I am praying to God that this is not happening on the right side of my face now as well. Do most people only have it on one side? I dont know that i can handle it on both sides.
I do I'm afraid, and apparently it's quite uncommon to have it happen that way.The surgeon I was chatting to said he'd never met anyone that it has affected bilaterally before.
It doen't tend to hit my throat though, generally it's just deep deep in the ears ( the tegretol keeps it at bay and mostly avoids it hitting my tonsils)
I hope that this is a one off for you hun, one side is bad enough without having to deal with it on both sides.xxx
Unfortunately I do too. Unbearable a lot of the time, call it my “living death” now. No longer just my ‘grendel’.My neurosurgeon at Wash U told me I was first they’d ever seen. My hurts are neck, all over head (except cheek/chin) ears, tongue, throat, etc. i sleep sitting up a lot, but still hurts for anything to touch my head. Pain alternates or can be both at same time. I truly hope it’s not that for you! Rules out a lot of surgical options… just stole my future!
I hope it isnt but today i can tell you that my throat feels a huge strain. and this feeling of something in my throat on the opposite side is not going away! that is not good news for me as this is how it started on the other side! did both of you have both sides at the same time? or did you have it happen on one side and then other? and Joan-i hear you about sleeping. i have to sleep on my back-it really sucks not to be able to sleep on a side anymore because of things touching my face
My left side became affected just after diagnosis was made on right (I do have brain cyst on right which they say is incidental to this, but not to some other changes such as hearing loss, transient dysphagia and dysarthria.) Not sure I buy that? I’ll pray for you that it’s not billateral. I wish I had access to med library now to gather more information. (used to work in hospital)
Re sleep, I’ve tried different pillows - memory foam works if in moderate cycle, so does the ‘total pillow’ (shaped like a scalloped donut, filled with air pellets - you can mold and shape it). When in severe I just have to sit and hold up untouching anything = hunchback syndrome 
(need antigravity suspended animation haha)
Here's a link to that pillow - it is closest to helpful I've found. (Target had for $15 if you're in U.S.)
thank you i will be sure to try it!
Joan said:
Here's a link to that pillow - it is closest to helpful I've found. (Target had for $15 if you're in U.S.)
Hi there ~
I am new to this kind of pain (been experienceing for about 6 months, but just diagnosed after CATscan and MRI) and I get it in my left ear from time to time. But mainly it stays in my right ear/throat area. I hate having this pain! But neurontin seems to help a bit. I wonder what the long term side effects of it are?
Thanks, Kara