Glossopharyngeal Neuralgia

[exgerv]

I am 40 years old and have been suffering from Glossopharyngeal Neuralgia for 2 years.  The pain has gotten so bad I did not eat for a month and dropped 25 pounds, basically by starving.  I am currently on 3000 mg of Neurontin and 100 mg Tegretol a day.  I feel like I am tipsy most of the day and am finding it hard to function.  I live in fear that I will have an "episode".  It is so hard on my children to watch me in pain.  Is there any specialists, any other suggestions on treatment?  I can't imagine living like this for the rest of my life.  There has got to be something else that can be done rather than continuing to up my meds.  Could this be a dental issue?  The pain is on the left side of my tongue and it is a stabbing pain that then starts to burn my jaw and up to my ear.  As time passes the pain gets more severe and lasts longer.  I would appreciate any help or suggestions or if you could just point me in a direction.  Thank you in advance.

[exgerv]

have seen this site.  my neurologists seem very reluctant to do any surgeries stating they are all too invavise and may not help.
i have an hmo and have seen 2 neurologists.  have told one that he seemed numb to the severity of my problem and cold to it.  sure that made him mad, he gave me chewable tegretol, i am guessing that is payback.  anyway, thanks for the info.  i never had any surgeries except my wisdom teeth pulled 22 years ago.  based on what i am reading looks like i need to do more research and push the dr's harder.  it is so frustrating.  when i tell people i have a tongue pain problem of course they respond with stupid jokes.  people dont get how painful this is and i am feeling like the dr's dont get it either.  thanks again and please pass on any other info you have.

[Demiguise]

I'm not sure I helped & not sure what the question is. Nothing
left to pass on. You've done the research. Gd-luck.

[Demiguise]

Boy do you have a painful problem. Your condition is very rare
& 80% go undiagnosed for yrs. yet it's so simple to do.  I had
a different condition that tripped the 9th (cranial nerve IX) to
spasm yrs ago after a surgery. I didn't have luck w/ the traditional meds used & zip w/ Neurontin except it helped deplete my bank acct & unable to think. It later went into a 6mo period of severe myoclonus (tongue yanking w/ pain). Many
neuro's/ENT's/specialists said couldn't help. I know alittle abt
physiology so I connected the dots & found out what I had. It
was a Dr. error that nicked a nerve that transmits to something else. I had a gd Int. MD I spk w/. We took me off meds you are
on & used Xanax (alprazolam) .50mg 2xday & then up to 1mg 3xday
till I was use to it. It's a sedative/helps anxiety/also smooth
muscle relaxant for spasms. For pain at night, 1 Lortab 7 would
allow me to sleep w/o groggy next day. Sometimes I'd only use a
1/2 during day. Basically these both are a hypnotics to those
nerves. It wk'd & in 3 mo. spasms stopped. I guess it was the
damage had healed or meds altered response to learn to stop.
I found a site that may help you. Google: "glossopharyngeal
neuralgial"+merck & be sure to do exact w/ quotes & +. The 1st
url should take you to a good explanation & explain a simple
surgery to help you. Don't ya' just hate the MD's that forget
the anatomy after they get their title! I had severe temple pain
like an ice-pick jab. Many times just the weather tripped it.
Still have alittle pain & can always predict the weather by it.
My throat problem is fine now. Maybe just got lucky.