raeder's syndrome sufferer

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Posted by Fox ( on March 22, 2001 at 02:31:32:

i have been watching the boards here for a while, since my first neurologist (8 months ago, after over a year of putting up with the pain) when he thought this was a horner's syndrome/cluster thing.

well, lucky me, i have the rarest form, raeder's syndrome. it has been 2 years, without remission, of level 6+ pain, constricting left pupil, and drooping eyelid, not to mention the dizziness, moodyness and the depression that has gone along with all of this.

i am asking if anyone else has been diagnosed with paratrigeminal neuralgia? i am only 22, and this started shortly after my 20th birthday (i should play the lotto, eh?) and when my 3rd specialist has given up, who is the best in the area, quite frankly, im at a loss, and i have no idea how to proceed. i dont like the idea that my life is pretty much over at such a young age, but that is all i can think of now, as the pain is so bad, that no treatment has offered any alleviation...

any ideas would be helpful, thank you...

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