Hi, I was diagnosed with gpn October of last year, but have been dealing with it for about a year now. I am currently being cared for by the VA and have no other health insurance. I am currently taking gabapentin and that’s it. I’ve had brain scans and the cause of my gpn has not been found. I just recently started going to a different VA, and it seems any headway I had made with the previous VA has been lost. It was a struggle in the first place to find it and be diagnosed, but then to have my pain managed was another story…none of the doctors understood what it was or even cared, it seemed. But I was lucky enough to have a good neurologist that advocated for me and pretty much educated my other doctors about it. Now I’m back at square one again with my new doctor blowing me off when I tell her how much pain I’m in…that it is unbearable. And just to add to everything, I’ve been having more strange symptoms that are not being addressed such as losing feeling in my feet and hands. It started in my big toes and has now spread to almost an entire foot and hand…All within a month. Things seem to be getting worse and I don’t see any help anytime soon. It wouldn’t be so bad I suppose, dealing with the GPN pain if there were people (doctors, nurses, family) that actually believed you about what you’re dealing with. But there seems to be a lack of that, and it makes it so much harder.The neurologist was working on a combo of meds that would get this under control…but since I switched docs, that all stopped. The gabapentin isn’t helping much anymore and I feel like I’m talking to a wall with each of my doctor visits. Anyone else have this problem? If so, how did you deal with it? Just feeling a bit lost and overwhelmed at the moment.
Hi Cassi
Something you might consider is taking video of your face when you are having a bad attack. Lots of videos. Also learn as much as you can and take the most relevant and current information to your doctors. If you got the the NIH website and search for GPN you can get a list of all the current papers. I am traveling right now and don’t have the URL but can get back to you.
I take gabapentin too, and had to get to 3,600 before I got any relief. There are add on meds too.
This can be a long fight because of the extreme rarity of the disease. Keep your records up to date and make corrections to doctors notes when you have to.
It can be so discouraging but the hard work can pay off. It’s hard to take but in any cases we need to be our own researchers and advocates a lot of the time. And we’re the only ones who get how disabling the pain is, especially when it is prolonged.
Keep Heart
Bellalarke
Hello
First off all you are not alone 
there are many more of us suffering from this horrible condition.
The only thing that helps to control my pain is 60 drops of TRAMAL and 0,5 mg CLONAZEPAM, both in the morning before I get out of bed. I have almost no pain and sideeffects since i started taking the meds 3 months ago.
All this Neurontin, Lyrica etc. stuff made my condition a lot worse.
Please have a look at my discussion and you might find a whole lot of information about treatnet and doctors. http://www.livingwithgpn.org/forum/topics/seeking-advice-on-gp-nerv…
Also read this link below:
http://www.mayfieldclinic.com/PE-Glossopharyngeal.HTM#.U40Cytq9KSM
I made a list of some doctors that seem to be good in treating GPN, all assembled from the shared experiences from other members.
“Bellalarke” above is also a very valuable source
For any questions just contact me on a PM.
regards
Michael
http://www.ncbi.nlm.nih.gov/m/pubmed/?term=glossopharyngeal&page=2
This is the link to all the article, not that many will be helpful but they are kept up to date and I surprised one of my docs with one of the most recent ones he had not seen-
So it pays to keep on your toes!
Bellalarke
I’m so sorry you’re going though such a hard time with your doctors. My Neurologist insisted up until the point I had MVD surgery that I did not have GPN. Hinted about doing blind testing on me. Another insisted I was deaf.
Long story short - YOU are your best advocate. As Bellalarke says educate yourself, keep good records, and make corrections if needed. I would add, if at all possible find a doctor who will listen to you, even if it is only your primary care doctor. I know this might be hard without insurance, but there has to be someone out there who isn’t so jaded. Educational handouts might go a long way to help with that.
As for things not showing up on scans, that can really be dependent on the scan, how it is performed, and who is looking at it. The Neurologist who insisted that I didn’t have GPN was impressed with my ‘great vascularization.’ When I was in recovery the Neurosurgeon told me he had never seen such large arteries before!
Hmschmom