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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Anyone who is on Topamax pls tell me
        
(Message started by: WOMANINPAIN on Aug 1^st, 2007, 12:41pm)

Title: Anyone who is on Topamax pls tell me
Post by WOMANINPAIN on Aug 1^st, 2007, 12:41pm

I am just starting to ramp up on Topamax again. I wanted to know....cause I can't remember...LOL...Is really bad diarrhea a side effect? I did lose weight last time, but not like this...anyone who knows, please give me a clue. How long should I expect this to last? This sux. I am only on 25 mg at night and am supposed to slowly ramp it up every 4 days or so by 25mg until I get to 200mg which was my therapeutic dose before baby. I feel crappy....LOL....literaly... :(

Title: Re: Anyone who is on Topamax pls tell me
Post by SoCal on Aug 1^st, 2007, 2:13pm

Never had that problem with Topamax. Was on 25mg as a prophylaxis for three years and just ramped up to 150mg/day over the last couple of weeks as I started a new CH cycle w/o any gastrointestinal side-effects. Only problems have been the expected word-choice/cognitive issues and some additional weight loss but no diarrhea.

Title: Re: Anyone who is on Topamax pls tell me
Post by WOMANINPAIN on Aug 1^st, 2007, 2:21pm

ok thanks. how fast did you ramp up? maybe it is just from the pain.... :(

Title: Re: Anyone who is on Topamax pls tell me
Post by SoCal on Aug 1^st, 2007, 3:05pm

Ramped-up in 25mg increments every five days. That may have been a bit quicker than what's normally recommended. I'd check with your MD. For comparison purposes, I'm a 205 lb. 54 yr. old. male in pretty good shape.

Title: Re: Anyone who is on Topamax pls tell me
Post by WOMANINPAIN on Aug 1^st, 2007, 3:11pm

thanks, he told me I could ramp up every 4 days by 25mg until I hit 200mg. I was on 200mg. before with much relief. I just never had this side effect, I will just chaulk it up to the pain I am in now.

Thanks

alicia

Title: Re: Anyone who is on Topamax pls tell me
Post by billyjoe on Aug 1^st, 2007, 4:55pm

I had the shits pretty good, too. When I was looking for a preventative after the prednisone, it was between Topomax and Verapamil. I chose the topmax, cause I was constipated from the Prednisone and was looking forward to diarrhea :)

Anyways, I didn't like the tingling feeling and cognitive issues that come on pretty significantly at 75mg. I went to a 50mg topo/ Verapimil mix for a while and it was ok. Finially, I went to all Verapamil.

The doc had me taper up the topo 25mg per 5 days.

Title: Re: Anyone who is on Topamax pls tell me
Post by UN solved on Aug 1^st, 2007, 7:12pm

I used to take it ... but I never had those side effects. If it continues much longer or gets worse, you'll have to stop the drug or risk dehydrating. I'd be calling the doc asap if I were you. :-/

Topo gave me kidney stones twice, the first time requiring immediate surgery. I stopped taking the drug after the second stone and I haven't had one since (5 yrs). BTW, stones hurt like a B&*%^ too !!
And oh yea, one other side effect, brain activity ::) ( It'll dip to an all time low! ) [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif]

Goodluck

UNsolved 8)

Title: Re: Anyone who is on Topamax pls tell me
Post by WOMANINPAIN on Aug 2^nd, 2007, 11:28am

Thanks BillyJoe and UN solved.....
I know all about the decrease in brain activity....been there done that......getting ready for it now...I already forgot my phone number....just kidding...we'll see how it goes today with the GI distress.....wish me luck!

alicia

Title: Re: Anyone who is on Topamax pls tell me
Post by Purple_05 on Aug 2^nd, 2007, 9:52pm

I just started taking this for the first time but I haven't noticed that side effect yet. Right now I'm only on 25mg at night.

Title: Re: Anyone who is on Topamax pls tell me
Post by WOMANINPAIN on Aug 2^nd, 2007, 9:58pm

no, i don't think it is from topamax either. I feel better and am still taking it..

Title: Re: Anyone who is on Topamax pls tell me
Post by brauer100 on Aug 12^th, 2007, 10:56am

I think your diarrhea is something to talk to the doc about. I am on 300 mg and have been for a long time. I've had every other side effect known to man, but not the runs. I don't recall ever reading that in the patient info. But then again, my memory is shot from this stuff. Good luck. :)

Title: Re: Anyone who is on Topamax pls tell me a
Post by medicjeff505 on Aug 12^th, 2007, 4:12pm

hey there, i am on 100 in the morning and 100 at night. i ramped up rather quickly and yes gi upset.... diarrhea is a side affect of topamax and yes i did experience a few wonderful days of this :o fortunately they were days off. so far it seems to have passed. it came on when i made the jump from 50 mgs to 100 mgs. btw have been h/a free for a week now :D good luck... jeff

Title: Re: Anyone who is on Topamax pls tell me
Post by BMoneeTheMoneeMan on Aug 12^th, 2007, 4:29pm

My doc was really pushing me to take Topomax, but i said i cant afford to be stupid. He said getting stupid is a side effect in a very small % of people, but just about everyone i talk to says it made their IQ drop by 50 points.

Whats the real deal?

Title: Re: Anyone who is on Topamax pls tell me
Post by rolo65 on Aug 12^th, 2007, 6:01pm

on 08/12/07 at 16:29:01, BMoneeTheMoneeMan wrote:

Great stuff if you want to forget your X wife, where you parked the car, and how to get to work in the morning!

Title: Re: Anyone who is on Topamax pls tell me
Post by medicjeff505 on Aug 13^th, 2007, 10:21am

the real deal for me has been a truly noticeable affect in very short term memory. i.e. just put car keys down now where the hell are they.... get up to get a diet coke from the firidge but end up in the laundry room wondering why i am in the laundry room craving a diet coke. i have read some real horror stories and i personally have not experienced anything to that extreme. meds affect everyone differently... that said i also have not suffered a single headache since i have reached my dose of 100 mgs in the morning and 100 mgs at night. good luck. cheers... jeff

Title: Re: Anyone who is on Topamax pls tell me
Post by TomM on Aug 13^th, 2007, 12:53pm

on 08/01/07 at 16:55:02, billyjoe wrote:

Anyways, I didn't like the tingling feeling and cognitive issues that come on pretty significantly at 75mg.

That sounds familiar. I am tapering down from 100mg/day. Presently @ 50mg.
Never got the squirts, thank God.
Edit to note: I got all the typical side effects from Topamax: tingling in hands and feet; soda taste wierd; weight loss; CRS (can't remember shit!) and NO MORE HEADACHES! I tapered upto 100mg/day and now am tapering down. Currently @ 50 mg/day. This is the best I have felt in months. Give and take, baby! Give and take. I'll take the CRS and give up the CH anytime.
TomM

Title: Re: Anyone who is on Topamax pls tell me
Post by marlinsfan on Aug 15^th, 2007, 8:25am

on 08/01/07 at 12:41:08, WOMANINPAIN wrote:

I wanted to know....cause I can't remember...LOL

Not remembering IS a side effect of Dopeymax! No joke.

Title: Re: Anyone who is on Topamax pls tell me
Post by rbmb on Aug 15^th, 2007, 11:54am

My experience with topomax was that the CRS effect decreases with time but so does the drug's effectiveness in preventing headaches.
Rich

Title: Re: Anyone who is on Topamax pls tell me
Post by TomM on Aug 16^th, 2007, 6:23pm

OK...we're all adults here.
So...anyone notice that sex is, well, different. Does not feel as good and the climax is not as climatic? :-[ Seriously.
Edit to Add: the climax is there but feels different.
TomM

Title: Re: Anyone who is on Topamax pls tell me
Post by Saffy on Sep 19^th, 2007, 10:13am

Hello,

My Dr tells me the therapeudic dose is 50mg morning and night, it must be expensive! ;) Welsh NHS.

I have found it + Dixarit wonderful.

No runs, no loss of the blubber sadly.

But headaches are MUCH improved which is absolutely great.

Memory was really bad at first but is improving now, I can live with it!

My advice is, when you think of it - write it down STRAIGHT away!!!

Saffy ;;D

Lists - lists - more lists

Title: Re: Anyone who is on Topamax pls tell me
Post by UN solved on Sep 19^th, 2007, 11:59am

on 08/16/07 at 18:23:38, TomM wrote:

I would say that Dopeymax numbs more than just your brain !

Goodluck to all that's on it !!

UNsolved

BTW, while I was on it, I went from college algebra to business statistics and economics to symbolic logic then back to 4th grade math :-/ That's when I knew I had to quit. And did I mention stones ? :P

Title: Re: Anyone who is on Topamax pls tell me
Post by sandie99 on Sep 20^th, 2007, 12:02pm

Dopeymax is one treatment I will not want to repeat... ever! It's bad enough that you go into places and have absolutely no idea why, but try to write academic essays on the same time. And it gave me basically 24/7 mild ch and then, in less than a week, I got hit 11 times a day. Didn't work... oh no.

Sanna

Title: Re: Anyone who is on Topamax pls tell me
Post by cash5542 on Sep 20^th, 2007, 5:22pm

My daughter has been on 200 mg of topomax for almost a year. She has increased the doses very slow. I think she is one of the blessed few. It has totally halted her migraines, she lost 25 pounds over the year, and another side effect was a speech issue. She has always had stuttering problems on and off and that's gone! Between the weight and the stuttering, she doesn't ever want to stop. Last year was her senior year of college and she completed it by writing a 90 page paper on the Holocaust. Her CH seems to be better but it's hard to tell if that's the verapamil or topomax. I hope it never stops working!

Title: Re: Anyone who is on Topamax pls tell me
Post by Wayne on Sep 20^th, 2007, 5:24pm

Memory loss yes, the runs no.

Title: Re: Anyone who is on Topamax pls tell me
Post by Portland_kait on Oct 7^th, 2007, 3:23pm

Topamax gave me GI problems and brain slowing to the point of thinking I am forever damaged. I am tapering off now. Wondering if my headaches are coming back too. I see to be a seasonal sufferer combined with stress and alc.l