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egg CH.com Newbie Offline I Love CH.com! Posts: 1	topamax Oct 10^th, 2009 at 11:46am has anyone taken topamax and can you give me any good advise on it someone told me to drink a alot of oj ??? did any one hear of this and anything else i should i know thanks egg pfd ta
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Callico

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Re: topamax
Reply #1 - Oct 10^th, 2009 at 2:17pm

Sorry, but I cannot use it. Hang around, there will be someone who can advise you I'm sure.

On the Meds and Treatments board there will be numerous mentions. I would suggest you do a search there and see what you find in the meantime. You can also go the the "old m-board" button to the left and check out some of the archived posts from the previous message board. You will find a tremendous amount of info. It will just take you a bit of time to dig it all out.

Sorry I can't help any further, but welcome to the family.

Jerry

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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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Weatherman CH.com Veteran Offline Beat the Beast! Posts: 159 Charlotte, NC Gender:	Re: topamax Reply #2 - Oct 10^th, 2009 at 5:59pm Sorry egg, don't know. Good advice from Jerry. Welcome to the board! Stick around. There is much help here!!
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Iddy CH.com Alumnus Offline Smile Posts: 486 Toronto,Canada Gender:	Re: topamax Reply #3 - Oct 10^th, 2009 at 8:38pm Topamax,mmmmmmm now I remember. Works for some, it also makes others feel a little dopey. I did not like the side affects. Where was I? Oh, Different strokes for different folks. All the best.
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Joni CH.com Old Timer Offline Knowledge is Power Posts: 476 Gender:	Re: topamax Reply #4 - Oct 10^th, 2009 at 11:36pm I tried it for a very short time and couldn't stand the side effects of feeling drugged and impaired thinking. My niece takes it for hers and it works at a high dose for her, but everyone teases her that she is out of it. She says she has a hard time retrieving words to speak. That's all I know. Joni
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E-Double CH.com Alumnus Offline Are we ourselves? Posts: 6948 Commack,New_York Gender:	Re: topamax Reply #5 - Oct 11^th, 2009 at 3:59am A few report good results. Many more seem to report not so good. As for me, it made me DUMB AS A ROCK! Dopemax haha
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DetroitDrillSGT

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Re: topamax
Reply #6 - Oct 11^th, 2009 at 8:20am

Yea, right on with the Dopamax!!! Im in the Army and they gave me that. I had real bad issues with making bad decisions. I woke up one morning and forgot how to tie my boots. LOL. Very bad, family members were afraid to drive in the same vehicle as me.

I went back to the doc and told him what was going on and he upped the dose!!! Last time I saw that guy.

Mike

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Guiseppi

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Re: topamax
Reply #7 - Oct 11^th, 2009 at 8:39am

I never tried topomax. I tried verapamil..at a dose I now know was way too low, and ended up using lithium as my primary prevent. It's worked forever so I haven't tried anything else.

There are a few on the board who swear by it, hopefully they'll be along. I remmeber one of them said she takes her dose at night and that helped her reduce the "Dopey-Max" effect! Grin

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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JHK07 CH.com Junior Offline I Love CH.com! Posts: 98 Gender:	Re: topamax Reply #8 - Oct 11^th, 2009 at 5:43pm topomax has worked great for me so far. 50 mg at night. i thought i was a lil dopey at first, but not now as much. tingling went away. i feel good. it has taken ALOT of stress away. I also quit caffeine at same time. I'd give it awhile to take hold. I had some clusters during the first week of taking it. good luck
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Kilroy 2.0 CH.com Sponsor Offline Kilroy 2. is Here! Kilroy 2. is Everywhere! Posts: 1637 Madison,WI Gender:	Re: topamax Reply #9 - Oct 11^th, 2009 at 8:01pm I am on topamax for the 2nd time. I was unable to work through the side effects last time. This time the topamax is working just fine. Crazy thing about CH what works or does not work one time may or may not the next.
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Marc

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Re: topamax
Reply #10 - Oct 11^th, 2009 at 8:35pm

I gave it a try for seven or eight weeks, many years ago. The first two weeks at high doses caused some really strange short term memory problems, but that went away after the third week.

When I bumped up against the maximum dose limits with no improvement in CH's, I gave up on it.

Several people have told me it worked, but that they were walking zombies. YMMV

Marc

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« Last Edit: Oct 11^th, 2009 at 8:36pm by Marc »

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FramCire CH.com Alumnus Offline Life like a froward child must be humored a little Posts: 1710 Bolivar, MO USA Gender:	Re: topamax Reply #11 - Oct 14^th, 2009 at 12:06pm E-Double wrote on Oct 11^th, 2009 at 3:59am: A few report good results. Many more seem to report not so good. As for me, it made me DUMB AS A ROCK! Dopemax haha I started out dumb as a rock and topemax made me even dumber..... now that's bad!!!!!
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Chad CH.com Hall of Famer Offline Posts: 738 Emmaus, PA Gender:	Re: topamax Reply #12 - Oct 14^th, 2009 at 12:28pm E-Double wrote on Oct 11^th, 2009 at 3:59am: As for me, it made me DUMB AS A ROCK! This is the #1 reason I turned it down.
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BarbaraD

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Re: topamax
Reply #13 - Oct 14^th, 2009 at 6:21pm

It's been my miracle drug. I've been on it for over 10 years now and really can't see much difference in anything. I was writing myself notes before I got on it.

I've been up on high doses (up to 400mg), but am on 100mg now. I've always taken the whole dose at night (not like they tell you to), so if there's any dopey side effects I've always slept them off.

I'm chronic and have headaches still, but nothing like I was having when I found topamax. I mostly get to the shadows (under a 5 for me) with O2 and usually not too many of them in a day.

I got real smart a couple of years back and decided I didn't need topamax any more and for a couple of months that worked just fine for me and then.... and then.... well let's say that now my neuro has a written consent form from me to use a baseball bat on me if I ever think I'm "superwoman" in the future.

Topamax does not work for a lot of people, but those it does work for - it's wonderful. There are side effects, but, in my case, I've found that taking the whole dose at night eliminates most, if not all, of those.

BUT and I emphasize the BUT... don't expect any drug to totally eliminate the CH completely... you will still get headaches - the demon will see to that no matter what you do (or at least that's the experience around here). We can eliminate a lot of them and make a lot of them less painful or shorter, but we haven't found the cure yet or the magic pill to stop them.

Hope this helps a little.

Welcome to Clusterville and our little family. Keep us up to date on how you're doing. We do CARE.

Hugs BD Kiss

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What don't kill ya, Makes ya stronger!

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dj51

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Re: topamax
Reply #14 - Oct 16^th, 2009 at 11:53pm

egg wrote on Oct 10^th, 2009 at 11:46am:

has anyone taken topamax and can you give me any good advise on it someone told me to drink a alot of oj ??? did any one hear of this and anything else i should i know thanks egg

pfd ta Cheesy

I was on it for a few months...As you get up to the higher doses you can get spacy and get word search. You will see...You will search for a word in your mind in mid sentence but can't find it. The fatigue will go away after a while but in the begining it can be tough. The really sick thing is...When I got up to 100mg (one month) my CH went away completely. I was only a few months into my CH so I thought I was cured. I never had a two week break before. Then it just stopped working after the first two weeks of full dosage. I think it did lessen them a little but the side effects weren't worth the side effects. If I had gotten relief like some have I would stay on it and deal with the side effects. OJ doesn't make a difference though. I hope it works for you!

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