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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Topamax
        
(Message started by: Purple_05 on Aug 2^nd, 2007, 9:41pm)

Title: Topamax
Post by Purple_05 on Aug 2^nd, 2007, 9:41pm

I've read all of the negative views on Topamax but if anyone has had any positive experiences with this medication please share them with me.

Title: Re: Topamax
Post by WOMANINPAIN on Aug 2^nd, 2007, 9:55pm

Hello,
I have had a good experience with topamax. I was on it for two years. My dosage was 200mg a day, I am in the process of ramping back up on it now as I just had a baby and went off it due to my pregnancy. I did have some short term memory loss, minor pins and needles once in awhile, but overall my clusters were greatly reduced. I really like the drug, it helps me a lot. Not every drug works for everybody, we all respond differently to meds. Don't get scared off by things you read, it might be the one thing that helps you. I had tried dozens of other drugs before this one....
hope this helps a little
alicia

Title: Re: Topamax
Post by Purple_05 on Aug 2^nd, 2007, 9:58pm

on 08/02/07 at 21:55:54, WOMANINPAIN wrote:

Thanks for your reply. :) Did you take your dose all in the morning, night, or a mixture of both? My doc has me taking all of mine at night. I don't know if it makes a difference but I was just wondering.

Title: Re: Topamax
Post by WOMANINPAIN on Aug 2^nd, 2007, 10:02pm

Last year I had a different doc and he had me split the dosage, morn and night. This new guy has me taking all at night he says it can be sedating...I just ramped up to 50mg tonight. I never felt tired before, but I am taking it at night. I think it is a personal preference. So far so good.

alicia

Title: Re: Topamax
Post by medicjeff505 on Aug 3^rd, 2007, 11:51am

hi there, i just started topamax on tuesday. i started getting my therapeutic levels up with 25 mgs in the a.m. and 25 mgs p.m. for 2 days and am now taking 50 mgs in the a.m. and 50 mgs p.m. for 2 days. i am supposed to work myself up to 100 mgs twice a day by next week. i can tell you i went headache free yesterday when i have been getting hit two to three times a day consistently for the past two weeks since this cycle kicked off. i have never been on a preventative as i have only just finally been accurately dignosed after 15 years of on and off headaches. i am hopeful topamax is the answer for me as well. i will keep you posted though. good luck... jeff

Title: Re: Topamax
Post by rolo65 on Aug 4^th, 2007, 10:34am

The only thing I’ve noticed is that it seems to be tolerated better by women than men.

“Positives” was the day I quit taking it because it was making my life (PF time) hell. For me the con’s outweighed the pro’s (if there are any) but it goes on an individual basis.

PF wishes,

Rolo..

Title: Re: Topamax
Post by cash5542 on Aug 4^th, 2007, 10:46pm

My daughter is on 200 mg, half morning and half night. It has done wonders for any weight issues although she needs to stay right where she's at now. She also has migraines as well as ch and it has stopped most all of them. She is in a bad cycle now but for the most part has been very happy with it. She felt a very slow increase was why she didn't have side effects. She finished her senior year in college in History (Lots of research and writing) and did fine, no memory loss or energy issues. Good luck!

Title: Re: Topamax
Post by hikerguy on Aug 6^th, 2007, 1:26pm

I had great results with dopamax for 3 cycles 1st time it was a silver bullet it has now lost its effectiveness and I think it actually extends my cycle but for awhile it was great even with being stupid while on it...Better than getting hit...
PFDAN to all....Chris

Title: Re: Topamax
Post by Gator on Aug 6^th, 2007, 3:24pm

on 08/03/07 at 11:51:45, medicjeff505 wrote:

I'm glad the Topamax is working for you. It really is an individual thing as to how it affects people. Your doc seems to be ramping you up really fast, though. The recommended schedule, per Dr Todd Rozen, is to increase 25mg every 5 days to 75mg and then stay there for several weeks before deciding to go higher. You have to have time to know if a certain dosage is working before going higher. It's always best to stay at the lowest effective dosage of any medication. Topamax also seems to have a therapeutic window. To little and it doesn't work - too much and it could make things worse. If 100mg is keeping you pain free, why go higher and subject yourself to a higher chance of worse side effects? Discuss this with your doctor, of course. Maybe print out this and show it to your doc if you haven't done so already:

http://www.plainboard.com/ch/chtherapy.pdf

Again, I'm glad you are finding some relief from the Topamax. I hope it continues to get even better.

Title: Re: Topamax
Post by TomM on Aug 13^th, 2007, 5:19pm

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: Topamax
Post by brauer100 on Aug 13^th, 2007, 6:04pm

It's the only preventive that's worked for me so far...I find splitting the dose to take most of it at night works best for me. I've taken it for two years. I have chronic clusters. I take 300mg (which is really high--most people stop at 200mg, but it's the only thing that really worked for me, so my doc bumped me up to see if 300mg helped any more).

I take 200mg at night and 100mg in the morning. These days the only problems I have are ocassional pins and needles and I can't remember phone numbers now and then, but I couldn't remember phone numbers before, so I think that's just me!

I love Topamax. I couldn't imagine life without it. I went off it once and my clusters went crazy.

The worst thing that happened when I first went on it was my feet were asleep all the time and I lost 15 pounds, but eventually those side effects subsided. No big deal, in exchange for the benefits, in my book.

Like everyone says, different meds work for different people. See what works for you, is my opinion.

Kate

Title: Re: Topamax
Post by UN solved on Aug 13^th, 2007, 6:24pm

on 08/02/07 at 21:41:13, Purple_05 wrote:

I've read all of the negative views on Topamax but if anyone has had any positive experiences with this medication please share them with me.

I think some of us may have misread the first post. It seems like (for some reason) the 'purple' poster only wants to hear about Topo success stories. Therefor, I have absolutley nothing else to add to this thread !

Goodluck All ...

UNsolved