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Topic: Topamax bites the dust... (Read 352 times) |
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Jim R
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Topamax bites the dust...
« on: Sep 1st, 2002, 8:10am » |
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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...
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"Hammer of the Gods..." (pounding on my head...) and isn't Bowie great?!
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jonny
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Re: Topamax bites the dust...
« Reply #1 on: Sep 1st, 2002, 9:02am » |
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I would rather dance than put up with all those sides.
Hang tough, Bro.
.................jonny
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2late
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Re: Topamax bites the dust...
« Reply #2 on: Sep 1st, 2002, 9:13am » |
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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
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Jim R
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Re: Topamax bites the dust...
« Reply #3 on: Sep 2nd, 2002, 1:39pm » |
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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  - 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
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"Hammer of the Gods..." (pounding on my head...) and isn't Bowie great?!
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Jim R
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Re: Topamax bites the dust...
« Reply #4 on: Sep 2nd, 2002, 1:42pm » |
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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
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"Hammer of the Gods..." (pounding on my head...) and isn't Bowie great?!
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Charlie
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Re: Topamax bites the dust...
« Reply #5 on: Sep 2nd, 2002, 4:49pm » |
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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
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Jabeen
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What doesn't kill you, makes you stronger.
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Re: Topamax bites the dust...
« Reply #6 on: Sep 3rd, 2002, 5:52pm » |
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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 
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NotH20
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Re: Topamax bites the dust...
« Reply #7 on: Sep 4th, 2002, 2:07pm » |
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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
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Jim R
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Re: Topamax bites the dust...
« Reply #8 on: Sep 4th, 2002, 2:30pm » |
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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
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"Hammer of the Gods..." (pounding on my head...) and isn't Bowie great?!
Proud member of OUCH
Episodic Clusterhead since 1978
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