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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Can I hear good topamax stories?
        
(Message started by: ShaneM on Sep 26^th, 2006, 2:47pm)

Title: Can I hear good topamax stories?
Post by ShaneM on Sep 26^th, 2006, 2:47pm

Does anyone have anything good to say about topamax. I am up to 200 mg a day total. I have been on it awhile and have experienced many of the classic side effects. I think that it has killed everything but one of my nightime attacks and even that is mild. I can usually get rid of it with just a squirt from an injection of trex. Is anyone else getting major or total relief?

Thanks

Shane :P

Title: Re: Can I hear good topamax stories?
Post by rbmb on Sep 26^th, 2006, 5:00pm

Well, I've been on a cycle that started about a month ago and when it started I began a prednisone taper and started taking topomax at 50mg, working up to 200mg. The HAs were mostly real mild with a few intense ones here and there and I even had a few nights with no HAs. 5 or 6 days after the taper ended and still taking the topomax, the HAs started in for real, every night and its been that way since. That has been my experience in the past.....the prednisone/topomax combo works for a while, than it doesn't work anymore.
Rich

Title: Re: Can I hear good topamax stories?
Post by marlinsfan on Sep 26^th, 2006, 5:32pm

Best part of my dopeymax experience was when I stopped. While on it, my attacks got worse, and I felt very confused all the time.

Title: Re: Can I hear good topamax stories?
Post by E-Double on Sep 26^th, 2006, 6:39pm

on 09/26/06 at 17:32:13, marlinsfan wrote:

Best part of my dopeymax experience was when I stopped. While on it, my attacks got worse, and I felt very confused all the time.

Sorry dude, but that sums it up for me too

Title: Re: Can I hear good topamax stories?
Post by eyepopper on Sep 26^th, 2006, 9:56pm

Gee, I guess we're supposed to be telling good Topamax stories, but I can't resist telling mine funny trial.

The Dopymax made me just that - Dopey. I was often confused and unable to think of the name of common words immediately. Also, the medicine didn't seem to help the CH.

Then the side effects started. My hands and feet felt numb and began to get that "needle-y" feeling.

When I was at my highest dose (I forget what that was -- remember, I was on dopeymax!) my tongue began to get that same numb, needle-y feeling in it.

I was just great to deal with at the time. I couldn't think of words. Then, once I thought of them, I couldn't say them because my tongue was numb!!!!!!! [smiley=laugh.gif]

Deb

Title: Re: Can I hear good topamax stories?
Post by Giovanni on Sep 29^th, 2006, 6:55am

Think I had good results, but I don't remember. ;;D

John

Seriously, I had to quit before any possible results could be calculated.

Title: Re: Can I hear good topamax stories?
Post by unsolved1 on Sep 29^th, 2006, 7:35am

No, I haven't got any good Topamax stories. >:(

It just plain SUCKED !! So did the kidney stones I got from using it .... (Twice) >:(

Goodluck

UNsolved

Title: Re: Can I hear good topamax stories?
Post by Ozark_E on Oct 6^th, 2006, 12:23pm

I JUST POSTED THIS IN THE WELCOME SECTION, BUT IT RELATES TO TOPAMAX. Perhaps its too soon to tell for me, but so far so good, in combination with Prednisone.

Hello, I am the newest of Newbies.

But I am not new to Clusters. I am in my 6th cycle since 1993. From onset they had generally recurred every 24 to 28 months, with cycles lasting 5-8 weeks. This past time, I had a 36-moth reprieve. I thought I was in the clear. Then about 3 weeks ago I started getting (non cluster) headaches every other day for about a week. And finally, the tell-tale red-eye, sinus-drain, cluster.

The doctors have been great so far. I got in to GP and the Neuro within a few days. That was all about 8 days ago. They started me on 60mg prednisone per day. I start tapering by 5mg per day today. They also started me on 50mg Topamax per day then. I start ramping up on it today. Within the first few days of the Clusters return, I successfully aborted a few onsets with Imatrex shots (full 6ml, perhaps overkill), and even with 25ml Imitrex pills. For the past 5 or 6 days, the prednisone and topamax have kept CH in complete check. I have had a few minor tinges in my temple, but have not needed imetrex at all.

Of course, as I taper off prednisone, I am concerned that CH will sneak back in. And as I ramp up on Topamax, well, I am concerned about the side-affects. But that is my boat for the moment. I just wanted to say hello, let folks know that I am managing ok, and that perhaps Topamax is doing some good for someone. We'll have to see. Hang in there.

Title: Re: Can I hear good topamax stories?
Post by FramCire on Oct 6^th, 2006, 1:11pm

2 straight posts from the Ozarks... wow.

Dopey did effect my mind but my cycle did get broke while on it, but I was taking 3 differernt things and it was past 8 weeks so I have no idea if it was the Dopey or something else or just the end of the cycle.

I have had kidney stones since i was on it, so I will not return to it. Stupid, HAs, and kidney stones are no way to go through life for me.

Title: Re: Can I hear good topamax stories?
Post by roy21302 on Oct 10^th, 2006, 12:08pm

I have just had to stop taking this stuff, it did seem to be helping with my CH, but when I got up to the dose suggested I suffered a severe reaction to it and had to get off quickly. The coming off was horrendous, won't be trying it again Cheers Roy :)

Title: Re: Can I hear good topamax stories?
Post by Ozark_E on Oct 11^th, 2006, 10:35am

Can you describe the symptoms of coming off of topomax? Also, did the doctor have you taper off or just go off cold turkey? I have not talked with my doctor about getting off of it yet, but I will next week. How would I know if I have kidney stones? I assume it would be pretty obvious, right?

Title: Re: Can I hear good topamax stories?
Post by roy21302 on Oct 11^th, 2006, 11:10am

Ozark, don't panic mate I had to come off them because I came out in a terrible rash and started twitching badly, The Doctor stopped me taking the pills and the come down was really bad, continuous CH pain and no sleep for some time. If you come off them only do it as a Doctor tells you I think it would be very slowly opposite to going on them Cheers Roy :)