Neurontin experience

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Posted by CharlesM ( on July 08, 2001 at 19:11:50:

In Reply to: Neurontin Blues posted by Tim M on July 08, 2001 at 12:27:01:

I just turned 60 and have had clusters since high school. I had my worst cycle last year, having been free for 4 years prior. Before that, I had always had one to two cycles every year. To get to the point . . . I tried a Headache and Pain center here in the KC area last year. When they refused Imatrex or any form of narcotic I learned that their primary purpose for existence is to first, get you in their on-premise MRI (like you don't know what a cluster is and you've never had an MRI), then do the Nasal anesthetics at $400 a pop, every day until it's clear that won't work.
Meantime, clusters persist. Now comes, "Let's try Neurontin." Okay, we'll try anything.
Manufacturer information says it's for seizures, but they don't know how or why it works. But, what do I know. Started at 800mg/day. A week later, we increased to 1200. I don't remeber how high we went, but I can tell you that after 3 weeks, I was having the very worst clusters ever, and now 3 to 5 times a day. Getting worse as the dosage increased. They wouldn't consider Imatrex, although if you took it that often it would probably kill you. I researched Neuronten thoroughly and could find no reason on earth why I should think it would have any effect on a cluster. One morning, in desperation, I just refused to take any more of it. Cold turkey. I had one headache that day. I have not had a headache since, almost a year later.
My main opinion and message here is that these so called "Headache and Pain" centers have no clue as to treatment for a Cluster. They are staffed by anesthesiologists who spend their day pumping cortisone into spines and lining people up for MRI's, mostly unnessary, but highly profitable. They have two goals - make money and get themselves out of the OR routine.
If you want medical help, my opinion is that you are better off with your long standing GP
(assuming you have one) and the NEUROLOGIST he sends you to. Make sure he really understands clusters, though.
Sorry, didn't mean to write a book (although I could), it's just that the thought or site of Neurontin really sets me off . . . . don't get me started on Prednisone either . .

I'm so sorry about your agony. My heart goes out to you.

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