Well, I went to the neurosurgeon last week and then tried a new plain neurologist this week. My old reg neuro was okay but I was kind of telling him what meds to try and he had only seen like 3 PTC patients in his life. Now, I live outside of Kansas City so it's not like we're in the middle of nowhere here. So, I decided to try a new guy.

Basically, I'm not doing so hot. I am throwing up like 10 days a month with severe headaches that are keeping me in bed about the same maybe 10-15 days a month. I'm on 1000mg of Diamox and Topamax and Neuorontin. I dunno but I actually feel like I'm getting worse with each month. Maybe it's just me. Anyway, as some of you may have seen my prior statement that my surgeon advised me that outside of a weight issue or extenuating circumstance that 80-90% of patients self resolve in 3 years. He also considers me "well managed" because my paps are down so my vision is not in danger. However, he agreed that if I wanted the shunt for quality of life purposes, I was certainly entitled but again cautioned that my insurance would likely not even cover it because of the above. GREAT! He also told me all about the revisions and how it may not help etc. We (my hubby and I) thinking well, we can ride this out 24 more months. But, what if I never get better? I don't know. I know it's something we all deal with. What's the long-term hold for us?

So, I went to the regular neuro. I don't know what I was expecting. He is a "headache specialist" and wants me to cut out just about every food under the sun to treat me for migraines. I showed him my LP results with my high pressure and my results from my NO with my swollen discs and he says he has "lots of PTC patients who are able to have their pain controlled by diet". The day I went was a high pressure day for me so I went home and puked all night and laid in my bathroom floor. After I took my Vicodin and Phenegren I tried to imagine all of his PTC patients avoiding bananas and no longer living like this. Seems a little to simplistic for me. I eat really healthy anyway. My husband is making me try it (the crazy damn diet). I concede that caffeine maybe does cause headaches. I sure get a headache when I don't have my diet pepsi. So why stop drinking it, right?? :) Dr. also thinks ALL pain meds cause rebound headaches and wants me to stop taking mine, which I would love to if I could. I only take them like 10 nights a week when it's that or I can't take it anymore. I kind of hoped he'd send me to a pain management Dr. to HELP with the pain NOT suggest things that sound more painful!! On a positive note: he's ordering another MRI and MRV to look for blood clots.

Has anyone found major relief through diet? I know I have to watch salt, I never eat greasy of salty fried foods anyway because that would send me over the edge. I always feel best when I drink fruit smoothies and other "clean foods".

Also, you think I should go back to my old doc and just ask for a referral to a pain management doc or give this more "natural" approach a fighting chance?

Thanks for listening to my rant........