~My story~

I'll make it quick - all started with trigeminal neuralgia in 2005, & vision problems at the same time . I had an MRI and a trip to the Neuro - the Neuro didn't diagnose the TN or anything , he just said my "symptoms were caused by stressed. " ( ok?)

I changed Neuros & was diagnosed with MS in 2008. I had no more TN symptoms until 2013 , & now that has become almost constant .

This Spring I had the first GPN symptoms ... stabbing ear/throat,roof of mouth pain. Oxcarbazepine has helped but is becoming less effective. My Neuro gave me 3 days of IV steroids high dose to settle things down. So far it has helped.

I've been reading this site- educating myself . I know I can't have surgery.

I will hope for a cure.

Wishing everyone well.~TL~

H TL, Welcome to the community and thank you for sharing your story with us. Its sounds like a good strategy to settle things. I hope the pain settles down for you soon. All the best :)

I have that. I have had it for 20 years and the GN this last few months has gone into my neck. Neurontin kills it. I use it P.R.N., because the body gets used to it. Now! I get garbled speech, we can be talking and all of a sudden I say howl yarl voo?! Like my mouth is full of marbles or I will yell: YOUL VAR VOO?

I do not know how to cover it. I usually start to cough and find the bathroom....it goes away in a few minutes.

Anyone have this? And what do you VOOOOOOOO? Do.



Hi Funtsie, I kind of get that - I do spoonerisms though - get the first half of my word mixed up with the other half of the next word - so instead of saying dear queen, say quear deen.. End up with some lively conversations sometimes :)

Hi all, I don’t get spoonerisms my voice changes pitch. Sometimes it disappears all together and I have to stop and start again when it returns. I am on a high dose of drugs. Gabapenten, Tegrotrol, Epilim and then Baclofen to stop some of the jerking.
Wishing you all the best with your journey, Pam