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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Has anyone got hit harder on Topamax?
        
(Message started by: Samiam on Mar 30^th, 2007, 9:38am)

Title: Has anyone got hit harder on Topamax?
Post by Samiam on Mar 30^th, 2007, 9:38am

I'm just wondering if anyone starting on topamax got hit harder on it then if they just stuct to what use to work for them.

I use to use just imitrex and was getting by.

O2 by day with 5 mg of Cortef and armour. 100 mg of Imitrex pill @ night & 1 mg of Klonopin and was sleeping. I should be winding down but instead I seem to be getting hits again. I'm in week 5 and since I have went on topamax this seems to be the case now I don't know what to think. Could this just be the beast ( this hasn't changed in 26 yrs and this is a new drug for me) or is this just an adjustment phase?

Sami

Title: Re: Has anyone got hit harder on Topamax?
Post by Gator on Mar 30^th, 2007, 10:35am

Yepper! Besides the Dopeymax Syndrome, Topamax increased the frequency and severity of my attacks. It also gave me terrible and vivid nightmares.

Topamax is one of two drugs I will NEVER take again. The other is Tegretol (carbamazepine). I developed a ringing in my ears while taking that and even now, two years after stopping it, I have the ringing. Sometimes it gets so loud, it near maddening.

Title: Re: Has anyone got hit harder on Topamax?
Post by ClusterChuck on Mar 30^th, 2007, 12:23pm

on 03/30/07 at 09:38:51, Samiam wrote:

( this hasn't changed in 26 yrs and this is a new drug for me)

I am very suprised that it hasn't changed over the years. This is one of the traits of the beast, to morph slightly each cycle ... Mine is VERY different than it was when I first started, 28 years ago.

Several have complained of this problem with dopymax.

Chuck

Title: Re: Has anyone got hit harder on Topamax?
Post by Samiam on Mar 30^th, 2007, 1:43pm

Hi Guys,

The only change is once they figured out that I had cluster and I stopped taking firoinal years ago and was put on better drugs I went from a 4 month cycle to a 6 week cycle. That lasted for 10 yrs. I didn't begin to skip years until I had my second child but when they did re appear all hell broke lose. They hit fast and harder then ever before like they had to make up for lost time. I went from one a day at the same time to several a day and from kip 5-6's to 8-10's this was the time that I was really going to do myself in. This was in 98. In 2002 again the same thing came fast and hard different month different season nothing controled them. lasted 6 weeks then went away. Now we come to 2007 Jan different month seems a bit milder with a few kip 10's thrown in for good measure but the 02 is helping. I'm in week 5 Sat will start week 6 and I should be winding down if all goes to plan but we adding in the topamax last thursday so now I don't know. I had a constant pressure in my head like I'm walking on egg shells. I do have a call into the neuro to see if we can ween off of this and just see if we can ride this out and see if it's the beast changing or if it's the meds doing this. I'm so praying it's the meds.

Sami

Title: Re: Has anyone got hit harder on Topamax?
Post by ndshrubs on Mar 31^st, 2007, 8:07pm

It seemed to increase the frequency of my headaches, but the intensity actually decreased (from 8-10 to 6-7). I had previously only had 1-3 headaches a day and with topamax had up to six. Plus there was the added problem of diet coke tasting absolutely disgusting for days.

Good luck!

-Scott

Title: Re: Has anyone got hit harder on Topamax?
Post by brian trudeau on Apr 2^nd, 2007, 4:27pm

I found that topamax made me #1 retarted, #2 made me loose alot of weight, and #3 also screwed up my cycle and hit levels as well. Did not actually prevent the cycle-Although my regular nightime hits were less severe at first i started geting afternoon ones as well and then would get a doozy 9-10 kip by the end of the week (I think just so the demon could say nice try #@!*%)
Got off it, and am sticking with coffee, o2, and when in a cycle
BT

Title: Re: Has anyone got hit harder on Topamax?
Post by Samiam on Apr 2^nd, 2007, 9:46pm

Sorry Topamax but I'm not going to play with something this far into my cycle. I have about 3 more days and I'm off of it. I was only on it about 15 days low dose. Today taking only 25 mgs @ bedtime. My hits were all over the place and O2 wasn't holding me very long and for the first time ever in my cycle I had to use Imitrex 2 times in 24 hrs while on topamax. I'm in my final week. I'm keeping my fingers crossed that this is so. If so then I hope I go back into remission.

What works for me is now O2.
Imitrex everyday
Klonopin 1 mg

This is my preventive and has been for the last 4-5 cycles minus the O2. I do have to say the O2 has made this cycle a bit more bareable.

Sami

Title: Re: Has anyone got hit harder on Topamax?
Post by sandie99 on Apr 3^rd, 2007, 2:47am

Oh yes! More attacks, a lot more pain, a lot less memory and I turned into a zombie. There's no way I would go back on it, never.

Sanna

Title: Re: Has anyone got hit harder on Topamax?
Post by swimchica623 on Apr 3^rd, 2007, 8:01pm

I've heard that Topamax has a sort of a therapeutic window...you have to take enough of it to work but if you take too much, it can make things worse...generally if you go over about 200mg for clusters it can make things worse, not better. I can't site where I read that exactly, I can dig around a bit if you really wanna know....
It seems that Topamax is picky who it decides to work for, miracle drug for half (or less) and a nightmare for the rest. I actually went on it mostly for the migraines that I get too (and oh yeah this can help the clusters too) For me it seems to make hits less severe, did nothing with frequency, got rid of this strange intesne light that came in my cluster eye every single morning...I've been fine with side effects, very minimal to none. And they've eliminated my migraines, which is the reason I went on it anyway. I was on Depakote before, which made me gain about a pound a day despite being a competitive swimmer and very careful about what I ate, and I couldn't stay awake! Maybe try that if you want to try something else in this catagory.....maybe you'll be luckier with the side effects than I was.
Lisa

Title: Re: Has anyone got hit harder on Topamax?
Post by UN solved on Apr 5^th, 2007, 12:39am

I was gettin slammed while on dopeymax. The only thing I got out of it was kidney stones !! :-/

UNsolved

Title: Re: Has anyone got hit harder on Topamax?
Post by marlinsfan on Apr 5^th, 2007, 11:55am

on 03/30/07 at 10:35:25, Gator wrote:

Yepper! Besides the Dopeymax Syndrome, Topamax increased the frequency and severity of my attacks.

Topamax is one of two drugs I will NEVER take again.

Ditto for me too! Exactly my experience. I took it for 5-6 days then stopped.

Title: Re: Has anyone got hit harder on Topamax?
Post by Kirk on Apr 6^th, 2007, 4:44am

Dopeymax never did a good thing for me. That I can recall.

[smiley=smokin.gif]

Title: Re: Has anyone got hit harder on Topamax?
Post by LeLimey on Apr 6^th, 2007, 4:50am

Topomax was the single worst experience of my life. It works for some people, it doesn't work but doesn't seem to affect others too badly and then it destroys some of us.

The thing to remember though is there ARE people it has helped. Its not front line in the treatment of CH but its on the list of things to try for sure.

Overall in spite of how terribly it affected me I'm not sorry I tried it as it COULD have been my silver bullet and beats the hell out of surgery in my book!

Helen

Title: Re: Has anyone got hit harder on Topamax?
Post by hikerguy on Apr 6^th, 2007, 9:25am

I've taken topa for 3 cycles 1st time was silver bullet second time took it as prevent when cycle should start aborted cycle totally...this cycle not so much....but it still is keeping the beast at bay somewhat...but I am getting more and more breakthrough ha's and it does make me very stupid and not really keen on the side effects but it sure beats the kip 10's
pfdan to all....Chris

Title: Re: Has anyone got hit harder on Topamax?
Post by Cincycluster on Apr 11^th, 2007, 10:29pm

[b]Beware Topamax!!!![\b] Not only did it cause me extreme kidney stones, it also gave me awful nightmare and then cause introversion and a diagnosed case of clinical depression. The depression was directly linked to the depression and once off I returned to my normally outgoing self.