The wheels of medicine move slowly. My doctor finally called back with results after 2 weeks of waiting. The spinal tap was completely clear, and CF pressure was normal - so that ruled out all sorts of things including infections, MS, etc.
The CT angio also didn't show anything particular that caught my doctor's interest but he is still leaning towards a GN diagnosis. He sent me to an ENT for a second opinion. I guess that ENT's often do diagnosis of this?
Went to the ENT and what he saw from the MRI is that the only place where my glossopharyngeal nerve shows as inflamed is right behind my left tonsil. He looks at my tonsil - which is greatly swollen. I tell him that it has been that way my entire adult life. He insists on a course of antibiotics, which I just finished - and surprise, surprise - my tonsil is exactly the same shape it has always been.
Next I have to go to an audiologist to have a balance test for my vertigo to see if it is because of my ears (peripheral) or brain (central). I will be interested to get the results - but this guy thinks that I happened to have a bunch of small things happen to me at the same time that has culminated in where I am (yeah right). He even went so far as to say that TMJ could be causing my headaches. I actually stopped him and said, I've had TMJ and you are telling me that the debilitating, room spinning, nauseating, can't get out of bed headaches could be caused by TMJ. "Yes, we see it all the time." Umm - I'm calling BS on that one. Clearly his definition of a "bad" headache and mine are not in the same universe.
I'll go one more time to my Headache neurologist and see if he gives me a definitive opinion of GN and then I will go find a GN specialist - this is ridiculous.
ENT was the first to bring up GPN with me -- I don't know if I have it or not. Now I mostly have pain with talking, and pain in my neck. Maybe I'm just in denial. I'm also suffering from odd headaches, at the base of my skull occipital in nature that Have come on over the last 2 weeks. I feel like I could cope better if I just had the throat pain or just had the headaches. Honestly the posterior headaches/neckaches are more debilitating than the possible GPN at the moment. I can't tell if they are related or not. Early on I went down the TMJ route too. I had never had really bad headaches prior to all these episodes. I'm barely scraping by at work and with my family. Prior to all this happening I became really ill with what I think was viral meningitis, it had me out of work for almost two months.
Did you discuss the possibility of botox for your headaches with the neurologist? I just had this done on wednesday, not sure if it is helping yet, neurologist said it could take up to 2 weeks to see benefit.
Yesterday my 3 year old daughter opened up a box of memorabilia -- I was feeling really down about the headaches and pain -- in it she found a note one of my former players had written to me (I was a soccer coach for a few years). She reminded me of some of my frequent "sayings", one of which was "never give up". It definitely struck me, so right now I'm trying not to give up -- on finding a doctor that will listen, on finding relief from pain, on not letting this overtake my life, and keeping up hope.
Just for the possibility for some, I switched from Trileptal to Tegretol, an older drug in the same class, and quit the Topomax, it wasn't doing anything anyway. I take Tegretol at max 1800mg per day, never pain free but some days better than others. I had one MVD, not sure about getting others. Looking into "focused radiation" at UCLA, has anyone had experience with that?