Update after visit to Vanderbilt Neurosciences Clinic

Well, my visit went better than expected. The dr I saw was Dr. Jose Valedon and he was very knowledgeable and took three hours to explain everything to me, assuring me that some of the things that I have been experiencing (such as hypersensitivity all over my body and my hair, not my scalp but my actual hair, hurting) are not uncommon and that I'm not crazy after all! Dr. Valedon also informed me that I do not have cluster headaches as I was led to believe but Chronic Paroxysmal Hemicrania, which is a much less common than cluster headaches (go figure..) He's taking me off of Topamax (thank the gods!) and putting me back on Maxalt, starting me on Magnesium, Compazine and Benadryl and when I go back in four months he's going to start me on Botox injections. Let's just hope that all of this comes to fruition and I can become a functional human being again. I hate being disabled and my main goal in life is to become well enough to be able to go back to work, if only part time. I'll keep everyone posted as I get my medication and see how it works.
Wish me luck!!

Interesting. Good luck w/ the new meds.

Thank you Platypus, my only problem right now is being able to afford the maxalt, (which even the generic is $3800.00) and finding a pharmacy that carries the Compazine. I've been weaning myself off of the Topamax, taking three this week instead of four, then two next week, then just one the following week and then completely off of them after that. I've stopped drinking diet drinks that have aspartamine in them and taking benadryl every 6 hours as well as taking 400mg of magnesium at bedtime. It's just getting the maxalt and the compazine! I found out that Merck (the manufacturer of maxalt) does do prescription assistance, so I printed off an application, filled out my portion of it and mailed the application to the doctors office at Vanderbilt as it's about 50 miles away for me and hopefully they will fill it out and mail it to Merck for me and I will get the maxalt within the next 3-4 weeks! Until then, I'm in lots of pain, the heat wave and all of the rain we have here in Tennessee right now is making the M's a lot worse and I'm in so much pain it makes it hard for me to even concentrate. Let's hope I can get the maxalt approved soon and I can get some relief soon.

Good luck with the meds. My meds are also extremely expensive. I can't work, so it's all such a struggle. I hope these meds work for you!