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        New Message Board Archives >> 2002 Posts >> Topamax bites the dust...
        
(Message started by: Jim R on Sep 1^st, 2002, 8:10am)

Title: Topamax bites the dust...
Post by Jim R on Sep 1^st, 2002, 8:10am

three CH's is five days. Topamax is history. Besides all the side effects, e.g. vortex driving, nasty taste in mouth, terrible taste of carbonated drinks, spaced-out feeling, etc. etc. ad nauseum - it doesn't work! What's next? I've tried about everything short of steroids and I don't want to go there...should be an interesting neuro appointment... :'( PS I'm trying, Charlie...

Title: Re: Topamax bites the dust...
Post by jonny on Sep 1^st, 2002, 9:02am

I would rather dance than put up with all those sides.

Hang tough, Bro.

.................jonny

Title: Re: Topamax bites the dust...
Post by 2late on Sep 1^st, 2002, 9:13am

I'll take anything over the dance, have u tried neurontin,it seemed to help me thru my last cycle with minimal sides good luck jim ............2late

Title: Re: Topamax bites the dust...
Post by Jim R on Sep 2^nd, 2002, 1:39pm

Even getting hit, I feel sooooo much better off the Topamx. And the O2 seems to be taking care of the CH for the most part ;D - they seem somewhat milder - maybe because of the increased verapamil ??? - whtever - I'll take it for now until the neuro can come up with something else to try. PFDAN's to y'all Jim R

Title: Re: Topamax bites the dust...
Post by Jim R on Sep 2^nd, 2002, 1:42pm

Whoops - thanks guys. 2late - no, I haven't tried neurontin. Maybe the neuro will suggest this when I go tomorrow. I might bring a list of the meds. from OUCH to him and see what he says... Jim R

Title: Re: Topamax bites the dust...
Post by Charlie on Sep 2^nd, 2002, 4:49pm

I can't take the stuff either. It's the best anti-seizure drug I ever used. It stopped them cold. I was seizure free as long as I took it. Naturally, the only drug that has ever done this made me nuts and my ears ring LOUD all the time.

I understand Jim.

Charlie

Title: Re: Topamax bites the dust...
Post by Jabeen on Sep 3^rd, 2002, 5:52pm

There are skeptics out there-but Wellbutrin worked for me. I don't know if you've tried it or not, it is technically an anti-depressant, but it is an SSRI which can help. Some have used it successfully, others have not...but thats the nature of this thing. When I started up again after 4-5 years of no CH, I immediately went back on them figuring that was the best place to start. It took a while to get to the max dose, but since then I go days with nothing and the ones I do get (1-2 a night at most) are 2's or 3's...very tolerable. Inly my 2 cents, but when I was trying to find something that worked for me-this is what worked. Good luck-Jabeen :)

Title: Re: Topamax bites the dust...
Post by NotH20 on Sep 4^th, 2002, 2:07pm

Hey Jim - sorry the Topomax didn't work for you....it sure is depressing sometimes when we look at all the meds we've taken and the list just keeps getting longer and longer of those that don't work.......I'm glad to hear that the O2 is giving you some relief though.

Have you tried DHE at all? It does have some "crazy in the head" side effects...but it may be worth a shot...

Good luck to you,
NotH20

Title: Re: Topamax bites the dust...
Post by Jim R on Sep 4^th, 2002, 2:30pm

NotH2O,

Yeah, especially when the list of "tried" is much long er than the list left! :( I did bring DHE up with my neuro the other day as I had the OUCH medication list with me and all he said was, "you don't want to go there...", so I did not pursue it. Thanks for your support and PFDAN's to ya. - Jim R