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        Cluster Headache Help and Support >> Cluster Headache Specific >> topomax side effects
        
(Message started by: clusterkat on Jun 25^th, 2006, 2:53pm)

Title: topomax side effects
Post by clusterkat on Jun 25^th, 2006, 2:53pm

summer time greetings,
the only adverse side effects im having to topomax
are weird.
cant drink anything thats carbonated,
it taste like turpintine (blah).
no soda, no beer,
no mixed yummy summer drinks.
any ones eles experience this on topomax?
my headaches have gone, so the trade off,
is like, who cares!
but just wondered cause im a big fan,
of a cold one when not on a cycle,
im hopin that it will pass but i can stand the taste
of beer or soda since i started takin topomax.
*southern smiles & well wishes to all*
Kat

Title: Re: topomax side effects
Post by Jasmyn on Jun 25^th, 2006, 3:48pm

Hi Kat, I know BarbaraD is on Topomax, she might be able to answer.

It just made me more insane and senile. I am glad though that it is working for you. :)

Title: Re: topomax side effects
Post by Katherinecm on Jun 25^th, 2006, 11:31pm

I took it for 4 or 5 months. I'd have to check with my neuro for exact dates. The carbonated drinks tasting bad thing never went away for me. If anything, it got worse. All I wanted was lots and lots of ice water.

I had other side effects too but I don't think you're asking about those.

The best thing about Topa for me was the ability to sleep through the night attack free again. Sure, eventually the attacks moved to the daytime, but just the ability to sleep soundly after months and months of deprivation (3-4 hours of sleep a night solely attributable to narcotics or benadryl does NOT a happy Katy make). It didn't help daytime attacks so now I am exploring other options, but if I ever start having more than 1 or 2 attacks a night again you can bet I will be back on it!

Title: Re: topomax side effects
Post by BarbaraD on Jun 26^th, 2006, 6:00am

I never had a problem with drinks tasting bad, but I mostly drink tea and not carbonated stuff (except Red Bull).

Topamax was my wonder drug. Right now I'm off everything (well almost -- still do melatonin) and drying out.

If topamax is working for you - keep it up. It's the only thing that helped me in all these years.

Hugs BD

Title: Re: topomax side effects
Post by ShaneM on Jun 26^th, 2006, 9:45am

Kat,
How much dopeymax are you on? That has not been my side effect. I am on 100mg and have tingles in the toes and drop a word or two on occasion. Doesn't seem to be helping with the pain at all. Glad that it helps you though.

Shane

Title: Re: topomax side effects
Post by BarbaraD on Jun 27^th, 2006, 5:45am

Shane - how long have you been taking it? 100mg was my maiantenance dose. When I was getting hit really hard I would up it to 200mg and if that didn't work I'd up it to 300mg. (taken at night only). It held the pain at bay - then when I got better, I'd lower it back to 100mg. (I'm chronic and have high and low cycles).

You might talk to your neuro about that. Mine let me regulate it cause he said I knew when I needed it.

Loosing words is a normal side effect. (Of course I blame it on OLD age and just laugh about it - beats the damn pain).

Good luck and PFDAN

Hugs BD

Title: Re: topomax side effects
Post by ShaneM on Jun 27^th, 2006, 9:18am

BD,
I have been on it for 3 months and just increased from 75 mg to 100 about 1 month ago. I go to Doc in the mornin' and will talk to him about the higher levels of topomax. It must take a long time for you to come back down, the doc has me come off 25 mg a week. I hoping that I am reaching the end of this cycle soon (maybe 2-3 more weeks). You wouldn't happen to be on verapamil too?

Shane

Title: Re: topomax side effects
Post by unsolved1 on Jun 27^th, 2006, 11:56am

kidney stones :-X

UNsolved

Title: Re: topomax side effects
Post by thenucman on Jun 28^th, 2006, 2:56pm

Kidney stones are a possible side effect. You can drink juices to reduce the risk.
I, too, have found that Topamax alters the taste of some drinks. I also used to love drinks with ice. Now I am not so keen on Iced drinks of any kind which I find strange.
Topamax has been a real mixed bag for me. I am at 75mg per night. No CH's at all since going from 50 to 75 mg per day 2 months ago. I sleep 10 hours a day. I have lost 15 lbs. in the past 4 months. My body temp is at 99.7 (which accounts for the weight loss). I have occasional abdominal pain.
The worst has been a mental trip. A feeling of worthlessness. Its this feeling that has made me decide to lower my dose back to 50mg starting yesterday.
All in all, though, I have to say that Topamax works for me, so far.

Title: Re: topomax side effects
Post by clusterkat on Jul 3^rd, 2006, 5:15pm

hay everybody,
thanx for all the updates.
my 100 mg daily 50 am/ 50pm,
has seemed to tamed the beast.
it is my wonder drug too!
the trade off:
dont care much for carbonated or iced drinks,
tingling & numbness in
toes, fingers & various joint pain,
bp is stable,
these are all minor trade offs,
compared to the inconsolable suffering,
that fractured my soul & spirit.
topomax has givin me my life back.
*blue eyes smile*
(((hugs)))
kat

Title: Re: topomax side effects
Post by lashultz on Jul 4^th, 2006, 8:23pm

I was on it for few months. It always seemed to mess me up in the head. It was like my body was in one place and my mind was a few steps behind.

lashultz

Title: Re: topomax side effects
Post by She-ra_mommy on Jul 4^th, 2006, 9:25pm

for me it makes every thing taste bad! but definatly drinks with carbination.

Title: Re: topomax side effects
Post by BarbaraD on Jul 5^th, 2006, 6:49am

Guess it affects everyone differently. I got totally Hyper on it (was already pretty hyper). Weight loss is one of the side effects. Never gripped about hat one... :D

No, I couldn't take verap. Lowered my already low blood pressure too much. And I was on a low dose to start with.

Hope your cycle ends soon.

Hugs BD

Title: Re: topomax side effects
Post by shabada on Sep 4^th, 2006, 2:59pm

I have been on topamax for 5 months now. Was on verapamil for 1 and a half with success and then side effects. Started on 50 mg to 75 to 100 mg. Medication worked great when on 50 and 75, but I moved to 100 mg because clusters were breaking through like crazy. Don't know if it is peak season or my body is getting used to the medication. Got to love CH. People have definitely had different side effects to this drug. The best thing you can do with anything that you are prescribed is monitor yourself the best you can. If you do that there is not much more you can worry about. Good luck and best regards.

Title: Re: topomax side effects
Post by inyoureye on Sep 5^th, 2006, 6:22am

I was told to take 25mg for 5 days and then go to 50 mg. After 3 days of the 25 mg, I stopped getting hit. Never went to 50mg. 7 days in now and still no attacks. Tingles in left foot and left hand. (i get hit in right side, don't know if there is a relation there)

So far everything tastes fine.

Havn't forgotton anything but I'm a pothead so who knows if anything is different on that one.

Havn't lost weight, thank God, I'm a twig to begin with.

Will re-post when I get further into it.

Good luck, and PF days to all.