Glossopharyngeal neuralgia

Could anyone help with info/advice on my problem.  

A am 44yrs female with MS approx 12yrs,  recorded lesions for 10yrs with neruo doctor saying ‘it may be MS we’ll wait and see’. Sent to physician who couldn’t believe I’d been left so long without diagnosis and treatment.  Now been treated MS meds 2yrs.  I am mobile, using crutches occasionally.  I have had TN & glossopharyngeal neuralgia for about 8yrs mostly controlled, but have now developed  glossopharyngeal neuralgia spreading through my torso and if it lasts long enough and severe enough I get TN with it.  Used to only occur 1 every few weeks but now increased many daily with long duration hrs if not controlled by extra doses of Gabapentin.  Longest I've had it before treated at hospital 2hrs of wavelike spasms lasting 1min to 5min.  I became all bent sideways and just able to stand.  Pain in throut. tongue, soft palate, ear and down front back torso, arms and top of legs.  Left with hangover pain in those areas for hrs (hurts to touch areas).  Can recurr constantly for hours or a couple of attacks a day.  The worst pain I've experienced.  Equal to OP childbirth with only gas for pain as labour only 1hr.  It is very scary.  On Gabapenton 300mg (900mg 3 times/day) with extra 600mg for attacks which I can do twice but then I have to go to Hosp.  Does anyone know the long term outcome of this condition.  Have read on net articles that it can be life threatning as the nerves involved, Glossopharyngeal and Vagus control the heart and breathing.

Can you help with any info.

[Quixotic1]

Oh my!  I am so sorry for what you are going through!  I just remitted from a 6 month bout of TN,  

I also want to offer our services in roasting the neuro who kept you from diagnosis for 10 years!  That is lazy and CRIMINAL!

It is probably a stupid question, but have you tried carbamezepine (brand Tegretol) for the glossopharyngeal neuralgia?  It has been the standard treatment for TN for decades and took my pain away very quickly.  I believe it can be added to the gabapentin for added effect.

Have you been seen by a Pain Clinic specializing in Neurologic pain?

I wish I knew more.

Quix

[kreshbuck]

Been suffering from GN for 12 years too. Let me know if we can discuss