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        New Message Board Archives >> Medications, Treatments, Therapies 2004 >> Topamax
        
(Message started by: barbee on Feb 10^th, 2004, 12:32pm)

Title: Topamax
Post by barbee on Feb 10^th, 2004, 12:32pm

I'm chronic for 14 years, and have tried just about everything. Most preventives knock me out for too long. Can't tolerate any of them. Just got a scrip for Topamax, and can't find, in the archives, anything later than 1999. Anyone tried it lately?

My neuro says it may make you drowsy, dizzy, and forgetful. In other words, you will be 10 years older in 1 week. Great! I'm already drowsy, dizzy and forgetful. Where is Dr. Kavorkian when you need him?

Title: Re: Topamax
Post by henzey on Feb 10^th, 2004, 12:53pm

There have been several threads on Topamax in the past month.....I started one of them on side effects, so keep looking. It does work well for some and not well for others. In my case, a fairly low does did prevent the headaches but created other outcomes that were really bad. Some side effects did get better over time, but others did not. I strongly urge you to slowly start out with small dose (no more than 25 mg per day) for several days and taper up.....even though that means waiting for it to kick in. I paid a HUGE price for listerning to a doctor who did not tell me to do this. Drink LOTS Of water...like 64 oz a day or more if you do take it.

Title: Re: Topamax
Post by PatFan on Feb 10^th, 2004, 12:55pm

I have episodic CH and have not tried Topomax, but my wife has Epilepsy and does take Topomax. The dose she takes is only 100mg total per day and she has no ill effects. I suspect the CH dosage needs to be higher than this though, which would increase the side effects. We were at her neuro yesterday and the doc said that topomax has been around since ~1996 or so. The true effects of the drug long term are really just not known. There is a small percentage of folks who have gotten kidney stones that have been attributed to Topomax. Then there's the Dopeymax part of it.....A lot of people have had topomax effective thier cognitive functions as well. My two cents for what it's worth.

Title: Re: Topamax
Post by Edski_1 on Feb 10^th, 2004, 1:43pm

Actually the doseage for headache releif is in general less for topamax than for epilepsy treatment. Here's a link to look at:

http://www.future-drugs.com/Iparticle.asp?publicationid=4&articleid=286

I've been taking it for about a month and it's been pretty effective. Except for the 2nd day I've not needed to take anything for a headache other than a few ibuprofen here and there...

Side effects have been a little loopiness, loss of words. I take a potassium supplement to combat the tingles in my feet and fingers...basically the dopey feelings have gone away. I can't taste carbonated beverages the same however...and a single beer will give me a significant buzz.

The cluster cycle is STILL there though. Sometimes the beer I drink will give me a slight HA...so I can still tell there's something going on there. But it's much less. The first couple of weeks I was having a single HA about 12-16 hours after taking my dose, lasting about 1/2 an hour and getting up to a K3 or K4...but not requiring any intervention...

But as I said, I appear to be a lucky one who can tolerate the side effects. As for the doseing schedule, I was on 25 mg for a few days, 50 mg for about 9 days, and been on 100 mg a day since. Some recommend spliting the does up; my neuro says to take the dose at bed time all at once. It does seem important to ramp up rather than start at a hight dose...

Title: Re: Topamax
Post by UN_SOLVED on Feb 10^th, 2004, 2:25pm

My topomax side effects included kidney stones :o

:( TWICE :(

Title: Re: Topamax
Post by 357Mag on Feb 10^th, 2004, 2:43pm

Hi Barbee,

Here is my experience with Topomax as an episodic...

Neuro had me on 25mg x2...did nothing to prevent an attack when in cycle [cycle every 13 months for last 3 yrs]. This yr., the Beast hit with a vengance. I had no other meds., abortive or preventive.

After coming real close to puling the trigger, hence my handle [357Mag], I found CH.com and read and read and read. Seeing other on 100 and 200mg x1 or x2 I decided that experimenting was better than death.

I took myself up to 100mg x2. I have been PF for 24 days now!!!! There are side effects.....memory is effected remarkedly.....but i did not ramp up! Lips and throat seem dry, but that is good cus i drink lots of water and it is needed to prevent stones.

Went to a new Nuero about 1 week after doing this and she concurred with what i had done. When i go out of cycle, I am dropping to 50mg x2. Next cycle, we will start with a Prednisone taper and ramp up on the Topomax back to 100mg x2.

Here is the site I found that provides much info on all drugs and gives warning, contraindications, what contidtions the meds are usually used for, etc.
http://www.rxlist.com/cgi/generic/brand.htm

Hope this helps.

Wishing you the best and may you find many PFDAN's,
-dan