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        New Message Board Archives >> Medications, Treatments, Therapies 2003 >> Topamax
        
(Message started by: snuffster on Apr 14^th, 2003, 8:35pm)

Title: Topamax
Post by snuffster on Apr 14^th, 2003, 8:35pm

Went to the Neuro for the first time on Friday. He took me off of Verap and put me on Topamax.

Anyone else here on it? He says it supposed to break the cycle quicker then verapamil. I was just happy to finally see a doctor that knew what a CH was.

He also put me on a 6-day stereroid pack, and gave me every Imitrex inhaler sample he had.

It still won't be enough though (insert rant about insurance company here).

Just wanted to see if anyone here was on it. Thanks a ton!

Title: Re: Topamax
Post by cluster0557 on Apr 15^th, 2003, 12:00am

Lot's of people have been or are on topomax.

Hopefully he has you building dosage in your system slowly or you will call it Dopomax.

For those that I know who can tolerate it it helps them.

For me even with a slow dosage build up I landed in Zombie ville.

Could not think straight and was very unaware and dizzy all the time.

Good luck with it I hope you have better luck than I did.

Title: Re: Topamax
Post by Bob P on Apr 15^th, 2003, 8:17am

Tried it last cluster. 125 mg / day. Didn't do anything for my attacks. I quit using it around week 6 or 7 of the cluster and went back to verap.

Title: Re: Topamax
Post by Roxy on Apr 15^th, 2003, 9:25am

snuffster, hope it works for you.

The first neuro I every saw misdiagnosed me with tension headaches, and put me on topomax. Stayed on it about 5-6 months, and it never changed the frequency or intensity of the ch's. But, all meds do work differently for different people. Maybe this will do it for you...I hope so.

PFDAN,
Tracey

Title: Re: Topamax
Post by Lenny on Apr 15^th, 2003, 9:42am

I agree 100% with cluster0557, the only thing that i can remember posative with that med., i lost alot of weight ( actually too much ) absolutely no help whatsoever, as far as clusters go ( this is my exp.with topamax ). Hopefully you will have better results with it.

Title: Re: Topamax
Post by snuffster on Apr 15^th, 2003, 3:49pm

Thanks for the info guys. Yeha, the Dr. told me I might lose some wiught which botherd me since I've already lost 15 pounds in the 6 weeks since my cycle started.

My HAs always seem to come when I'm about to eat...

I started with one pill per day for a week then I will be increasing by a pill each week until I get to four.

I have noticed a difference, I shadow almost all day, but the beast only hits normally once a day. This could be from the stereroid pack that I'm on though.

Thanks again.

Kris

Title: Re: Topamax
Post by Frank on Apr 15^th, 2003, 7:40pm

I have been takin Topamax for five weeks... now up to 75mg since yesterday. I am still having moderate to moderately severe attacks this week... but not every day. No Kip-10s for three days, and no Imitrex or O2 for two days. But I'm at about Kip-5 right now. I feel like I'm sitting on a fence... don't know which way I'm going to fall.

So far it's too early to tell... I'm not giving Topamax credit for anything yet.

Title: Re: Topamax
Post by beach954 on Apr 15^th, 2003, 8:10pm

I was on Topamax for 4 months. Up to 400mg per day. It seemed to help for awhile but then the effects wore off. Unfortunatly ins was lost but may try again when ins is active. The only side effects I noticed were tingling in my feet which wasnt to bad.

Title: Re: Topamax
Post by Ueli on Apr 15^th, 2003, 9:12pm

I have great success with Verapamil and I have never tried Topamax.

But I'd like to remark here that neither Verapamil nor Topamax can shorten a cycle. All they do (if they work) is to dampen down the attacks and ideally suppress them altogether; but that is not bad either. ;D

So if you stop these meds too early, before the end of the cycle, the attacks are likely to come back in full force.

PFNADs
Ueli

Title: Re: Topamax
Post by Riccardo on Apr 16^th, 2003, 12:40am

We already did this discussion one time.

As UELI said, Verapamil and Topamax and ...I think.... nothing.... SHORTEN the cycle!!!!!

This is a thing that MANY NEUROS BELIEVE (don't know why) and somtimes tell also to the patients.

I could imagine that the break of pain may be called a cycle shortened, but is not so! If you stop the Verapamil, the cycle returns (return is not correct... it is never gone!).

Let's try to make a bit of information with our docs about this.

Another thing: HOW MUCH verapamil have you taken?
Some of us have to use it at 1000 and more mg/day to have a good effect. If you have taken 240 or 360 per day, may be that it wasn't enough!

Ciao

Title: Re: Topamax
Post by clavers on Apr 16^th, 2003, 8:16am

It is the stuff of hell. It made me insane for three days, then destroyed my short term memory, and my sense of taste. It made me feel and behave awful. Also, it didn't do a thing for my CH.

Title: Re: Topamax
Post by Mark C on Apr 16^th, 2003, 9:07am

on 04/16/03 at 08:16:27, clavers wrote:

It is the stuff of hell. It made me insane for three days, then destroyed my short term memory, and my sense of taste. It made me feel and behave awful. Also, it didn't do a thing for my CH.

Me too.....took about a month after stopping it before anything carbonated tasted normal again. Made me stranger that I already am !

Title: Re: Topamax
Post by Frank on Apr 16^th, 2003, 9:46pm

Just told my wife I took my "stupid pills". She wanted to know what "stupid pills" are? I told her Topamax... but I have been taking them at bedtime and so far seem to be able to function ok during the daytime.

Title: Re: Topamax
Post by cluster0557 on Apr 16^th, 2003, 11:13pm

I hope the Topomax keeps working for you. When I got near your dosage I went into zombie mode and bounce off the walls stage.

Scared the hell out a guy at work when walking down the hall and I just walked smack dab into the wall across from his office.

End of topomax for me that week. Had to work even though bouncing off walls was fun for a couple of days. ::)

Title: Re: Topamax
Post by Frank on Apr 16^th, 2003, 11:39pm

I'll try to watch out for zombie mode. I'm an electrical engineer... it's what I do for work. So, I work on lots of 28 volt and 120 volt stuff while it's opened and powered up.

I got zapped by 120 volts just yesterday. No big deal... it has happened several times before... but it pissed me off anyway. And it wasn't as bad as a cluster attack.

If it happens again in the next week or two, I'll take a closer look at Topamax vs. work safety.

Title: Re: Topamax
Post by cluster0557 on Apr 16^th, 2003, 11:53pm

Well you can say when your hit by the 120 volts that it will wake you up but still not a good idea.

The 28vdc is more dangerous cause of what it can do to heartbeat. I got nailed by it when younger. Woke up in hospital.
I was an Electronics Engineer working with low anh high dc voltages. Nothing like 1kv jumps starts in the morning.

-0Be safe and take care.

Title: Re: Topamax
Post by snuffster on Apr 17^th, 2003, 8:37am

Thanks for all of the replys guys. My nuero is slowly ramping me up to 100mg so hopefully the side effects won't be too bad.

Altough I did notice yesterday for the first time that soda does not tast the same. Damn these HA's they take away drinking and now soda. What the hell do I have left?