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Title: Anyone Try Topamax? Post by stuey on Jul 22nd, 2003, 2:01pm My neuro (his things epilepsy) went to a headache convention and mentioned my case to a doctor there and said he was having trouble breaking my cycle. The other doc said he might try topamax which is an anti-seizure medication that covers two types of seizure and also shows promise with those who have cluster headaches. Just wondering if anyone here has tried it and with how much success. Peace. Stuey |
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Title: Re: Anyone Try Topamax? Post by FrankF on Jul 22nd, 2003, 2:07pm A few of us have tried Dopamax. Works for some but not for me. http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1053745148 |
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Title: Re: Anyone Try Topamax? Post by stuey on Jul 22nd, 2003, 2:12pm Sorry I didn't search. I see it's been covered and my apologies. |
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Title: Re: Anyone Try Topamax? Post by CJohnson on Jul 22nd, 2003, 2:16pm My new neurologist thinks it might be a good idea to try topomax when my CH strikes again. He said some people get dopey on it but some people don't. If you get dopey you stop taking it, if not, it should be a pretty effective preventative. He gave me the impression that there would be either strong side effects, or hardly any. PFDANs -Curtis |
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Title: Re: Anyone Try Topamax? Post by stuey on Jul 22nd, 2003, 2:18pm Since I seize during sleep I may go on it anyway and stop taking the trileptal i take for seizures now. thanks. |
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Title: Re: Anyone Try Topamax? Post by 2late on Jul 22nd, 2003, 5:19pm had to stop topamax @ 75mg. a day.......it made me a zombie, hope it works for you! .................Jack |
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Title: Re: Anyone Try Topamax? Post by Karla on Jul 22nd, 2003, 5:45pm I tried up to 600mg and all I got was a lousy memory out of the deal. It did nothing for my ha. |
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Title: Re: Anyone Try Topamax? Post by Danielle on Jul 22nd, 2003, 5:57pm I am taking it right now (50mg x 2 per day) along with my Verapamil (480mg x 2 per day-600mg x 2). I don't really know what to say about it...I didn't think it was doing anything but when I stopped it to start Lithium treatment, my head went nuts. But, since I am chronic, it's hard to tell because my head goes stupid all the time whenever it bloody well feels like it.... Side effects? Yes, I am noticing some memory problems, and I am apparently not even on a high dose?! On the upside....My Neuro says that Topomax helps with weight loss which can't be all bad.... |
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Title: Re: Anyone Try Topamax? Post by Charlie on Jul 22nd, 2003, 6:15pm I've used Topamax for epilepsy. It's the only drug that was 100% effective. Unfortunately, it made my ears ring LOUD all the time. No one else has mentioned that side-effect. It also made me a bit tired and forgetful as well. However, it worked and I'd like to try it again. My doctor and our convention doc says it should begin with a small dose of about 25mg and then slowly upward. It also should be tapered off slowly if you quit the stuff. The doc said he takes 100mg for his migraines, if I remember. Anyway, I did that and it killed my epileptic seizures but I'm on other stuff now. Try it, you might not have any problem. Some don't. Charlie |
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Title: Re: Anyone Try Topamax? Post by pigeon on Jul 22nd, 2003, 6:53pm I've used topamax for my last three cycles. I get hit every 12 months or so. I also use indocin along with the topamax. I think the key is to move along in slow doses, 25mg increase per week and remember to taper off the same. I tried to get off it a little too fast this year and traveled thru some deep deep fog. Good luck JoeP |
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Title: Re: Anyone Try Topamax? Post by stuey on Jul 23rd, 2003, 7:43am Charlie I was curious. Have you tried Trileptal? It's in the same family as tegrotal but has less side effects. I can't say I have any bad side effects at all. I was probably drowsy at the beginning but that passed like on other meds. Also, when you seize do you seize during awake time or while you sleep. I only seize in deep sleep for some reason and it's called nocturnal epilepsy. I used to be afraid to sleep cause I could tell during the day (bottom left lower lid would start twitching) and I would get a nasty feeling in my head like a fullness and sometimes my left pointer finger would twitch. Curious what your signs you were gonna seize were. Stuey |
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Title: Re: Anyone Try Topamax? Post by NotH20 on Jul 23rd, 2003, 1:21pm Stuey - I was on Topomax for my last cycle in late 2001 and early 2002....it does affect your memory a bit and also is a wonderful weight loss med ;D Sometimes it makes your hands and feet tingle (in my case it was the tip of my nose - go figure LOL)....also I saw "black bugs" in the outter corners of both my eyes - this happened when my dose was higher (little squiggly lines moving around). Try it and hopefully it will work for you. Just be aware of all of your symptons since it's sorta a weird med. Good luck to you, Mia PS - I agree w/ everyone that posted about slow increases and decreases - watch this carefully. |
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Title: Re: Anyone Try Topamax? Post by stuey on Jul 23rd, 2003, 1:28pm Thanks Mia and thanks everyone. I guess it will be up to my neuro anyway. I'm taking 960 verapamil and it is actually working with the 100 of elavil. I was beginning to think nothing would help cause my cycle started late april but now i am four days pain free day and night and i am happy about this. The only reason I was really thinking about Topamax was because I seize in my sleep and i know it's an anticonvulsant. So I was maybe wondering if I could know out 2 birds with one stone. i just wish more was understood and more people understood what these attacks are. there is absolutely nothing cool or hip about having to say that i suffer from clusterheadaches. it plain and simply sucks and i just hope those who are in their cycle now find relief somehow. my headache specialist said we are lucky to have triptans now cause even 25 years ago we would have been even more devastated cause triptans didn't exist. Peace to all. Stuey |
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Title: Re: Anyone Try Topamax? Post by catlind on Jul 23rd, 2003, 2:47pm Stuey, there is an article that was written up on trials done for Topomax in CH that our speakers talked about with us. Dr. Bigal said that the drug holds alot of promise, but this is where OUCH will have to go to work. If the drug is titrated slowly, starting between 15 and 25mg and titrated by 15mg each week up to 100mg then side effects should be lessened. The topomax deal is one of the projects that OUCH will get to work on as soon as I get my shit together and get the info to them :) Cat |
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Title: Re: Anyone Try Topamax? Post by Ree on Jul 23rd, 2003, 6:14pm Dave is going to try topamax as soon as I get to CVS to pick up the prescription... His Neuro says it can be combined with Neurontin anyone let me know if they havent had luck with these two... thanks ree |
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Title: Re: Anyone Try Topamax? Post by stuey on Jul 24th, 2003, 7:52am Ree I hope it works for Dave. Let us know how he is doing okay. Stuey |
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