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thingfishp

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Topromax?
Sep 15^th, 2010 at 12:51pm

Anyone taking topromax to break/prevent cycles? After 4+ months on 480 mgs of verapamil, twice cycling with prednisone, I'm still getting shadows and occassional breakthrough clusters. My new neurologist is putting me on topromax, titrating up from 1/daily (sorry don't know the dose) for a week, up to 3 daily. He'll decide whether to ween me off the verapamil in a couple weeks if the topromax seems to be doing the job. Just wondering about peoples' experiences with this stuff. After 4+ months I'm ready to try just about anything. Thanks, George

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« Last Edit: Sep 15^th, 2010 at 12:52pm by thingfishp »

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Topromax? Reply #1 - Sep 15^th, 2010 at 1:35pm It's actually called Topomax (brand name of topiramate), and it's primary use is as an anti-seizure med. Around here it's nicknamed "Dopeymax" because of it's primary side effect, memory and confusion problems. But it does work for some.
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chbob04 CH.com Junior Offline I Love CH.com! Posts: 37	Re: Topromax? Reply #2 - Sep 15^th, 2010 at 6:38pm I was prescribed Topamax 25Mg/day. It seemed to work for me. It is the only preventative I have had any experience with. I am also new to cluster headaches, just got through my second lifetime cycle (knock wood), and I never had to increase the dosage above the 25Mg. Those pills sure are small, if I remember correctly.
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boski CH.com Alumnus Offline CH'S Suck for all that Suffer / The Pain The Pain Posts: 208 NYC Gender:	Re: Topromax? Reply #3 - Sep 15^th, 2010 at 11:33pm I'm on 150mg and verap 720mg
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Kate CH.com Junior Offline I Love CH.com! Posts: 25 Gender:	Re: Topromax? Reply #4 - Sep 16^th, 2010 at 1:37am I recently stopped taking 50mg of topamax. It was dopeymax for me. I had word finding problems with it, but still took it as a preventative for over a year. I finally stopped taking it because it didn't seem to be helping me anymore.. I will say it helped me with one cycle, but that was it.
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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: Topromax? Reply #5 - Sep 16^th, 2010 at 7:08am That was my experience, too. Seemed to help for a brief time and the only good side effect (unlike other meds that are antiepileptic) was weight loss! Very effective there, but I couldn't remember what clothes I was going to wear when I went upstairs to change. Good luck with it though. Blessings. lance
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thingfishp CH.com Junior Offline Wilco Loves Ya Baby Posts: 28 Gender:	Re: Topromax? Reply #6 - Sep 16^th, 2010 at 8:14am Thanks for the info. My neuro warned me about weight loss, kidney stones, tingly fingers and memory problems. As an English teacher, I'm most concerned about the loss of memory. Knocking on 50, I already have enough problems remembering stuff. Well, we'll see how this goes for a while and assess it then. Thanks.
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Topromax? Reply #7 - Sep 16^th, 2010 at 9:00am I never tried topomax as lithium has continued to be an efective prevent over the years. Several on the board swear by topomax and don't have the dopey side effects, hoping it works as well for you. If not, talk to your doc about lithium, at 1200 mg a day blocks 60-70% of my attacks and no one can tell I'm on it. Joe
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boski

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Re: Topromax?
Reply #8 - Sep 16^th, 2010 at 10:59am

Seems as it gets better with time, the sides. Yeah, I have
lost weight. But I needed to loose a few after I quit smoking,
should have tried topomax a few years back. It worked on a
low dose the first time for me but now im on 150mg on my
way to 200mg and still getting hit. oh well what can one do,
it is what it is. The memory levels off, as does the tingles.
All very strange at first! Hope your feeling better.

Peace,

Boski

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Miklos

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Re: Topromax?
Reply #9 - Sep 16^th, 2010 at 12:16pm

The topamax works very effectively for me and does not cause anymore than my usual dopiness according to friends and colleagues. I usually take 100 mg twice per day during a cycle. The topamax knocks the CH way down so that I rarely have a headache when I am at full dose. O2 knocks down the rare 7/8 break through during the night. I can even drink alcohol if I don't over do it; however, I do not even think about alcohol while I am ramping up the topamax.

My current episode started on June 14th with really nasty 7/8/9s every 90 minutes for three days with no current 02 scrip on hand. Ugly weekend and a very unusual episode start for me. Got it under control with a 60 mg prednisone taper and O2. Once the topamax kicked in, it was a fairly mild episode.

I am currently tapering off the topamax and am at 50 mg twice per day. In a couple of weeks I should be medicine and headache free. I haven't had to use the 02 for over a month.

I hope you are one of the lucky ones for whom topamax works well. If not, you will get a ton of good solid recommendations from the experienced folks on this website.

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Robzilla CH.com Newbie Offline Posts: 13 x1\|Hawthorne\|USA\|usa\|496\|112\|NJ,New_Jersey Gender:	Re: Topromax? Reply #10 - Sep 16^th, 2010 at 1:43pm Topamax works for me I take 200 mg 100 with lunch and 100 at bed time - been on it about 2 years no major problems still get some headaches but nothing like a cluster. And the weight loss is a plus...
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Lettucehead CH.com Old Timer Offline I am very blessed... Posts: 293 Iowa Gender:	Re: Topromax? Reply #11 - Sep 16^th, 2010 at 5:15pm Good news - topomax can work wonders with headache issues - even CH... Bad news - I know lots of people who can't tolerate the memory and word finding issues... BUT, if the memory issues don't affect you or, at least, don't bother you too much, then it may be a very good med for you.
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boski CH.com Alumnus Offline CH'S Suck for all that Suffer / The Pain The Pain Posts: 208 NYC Gender:	Re: Topromax? Reply #12 - Sep 16^th, 2010 at 5:44pm So, I', tired from the verap only or topomax too? Cause I'm a walking zombie!
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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: Topromax? Reply #13 - Sep 17^th, 2010 at 8:25am Zombies don't like the sun. Or so I'm told. That alone will keep you up at night. And to be fair, the high verapamil also makes me feel like the walking dead, but it beats the high KIP attacks I was getting! lance
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boski

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Re: Topromax?
Reply #14 - Sep 17^th, 2010 at 11:22am

Guess that's another reason I'm low on D Wink

I have started with slamming a 5 hour energy right before
sleep and now I only get one hit a night. Much better for my
sleep! Finally getting some beauty rest! That is much needed!
Or so I am told!!!!!!!

Peace,

Boski

Memory loss:

I never remember anything anyway, Not sure if it is I'm
more forgetful on the topomax or not I forget haha!

Still better than the hits. I did notice that I lost interest in
learning guitar. Before taking Topomax I was playing guitar
everyday for hours now it's forced. I hope I start up again
after I stop the topomax.

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« Last Edit: Sep 17^th, 2010 at 11:37am by boski »

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