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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Topamax questions
        
(Message started by: alienspacebabe on Aug 12^th, 2006, 6:37pm)

Title: Topamax questions
Post by alienspacebabe on Aug 12^th, 2006, 6:37pm

I have a tiny friend who is thinking about starting Topamax. She's 5' 3" and under 100 pounds. The doc is concerned about her losing weight. Also, she's already having memory/cognitive problems due to a concussion in May.

I've gone through the topics and responses here, but still need some clarification from those who have been on it. If you have taken it and are willing to answer my questions, please answer here or IM me or email me.

Did you lose weight on it? Gain weight? How much?

What dose were you taking?

Did it cause (or worsen) depression?

How bad were the cognitive side effects?

Anything else you think is important?

Thanks,
Lizzie

Title: Re: Topamax questions
Post by unsolved1 on Aug 12^th, 2006, 9:15pm

(1) don't remember gaining or losing weight

(2) 200mg per day

(3) No depression but maybe a little paranoia

(4) at the time, I was a computer science major / math minor (3 yrs in). After taking topo, couldn't do 4th grade math [smiley=huh.gif]

(5) Everything tasted like a$$ :-X (Hey, that's probably why ppl lose weight)

And last but not least ... it caused me to have KIDNEY STONES TWICE !!! :'( :'(

UNsolved

Title: Re: Topamax questions
Post by E-Double on Aug 12^th, 2006, 10:23pm

on 08/12/06 at 18:37:41, alienspacebabe wrote:

Did you lose weight on it? Gain weight? How much?
Didn't change

What dose were you taking? 25x2

Did it cause (or worsen) depression? alost immediately

How bad were the cognitive side effects? devestating. I could not function. I could not teach. lecture, train....I did not know where I was quite a few times

Anything else you think is important? My Attacks increased......I would not tell someone to NOT try it though if they were in need.
Carbonated beverages were really odd

Thanks,
Lizzie

Eric :-*

Title: Re: Topamax questions
Post by jenrob2006 on Aug 14^th, 2006, 8:19am

I have been on it multiple times over the past 7 years and I have know people on it. I had no adverse side effects except very strong tingling of my face and hands. I did loose 7 lbs this time, but I had gained 15 from the prednisone and verapamil. I never lost weight from it before. I was taking 50mg a day.
However, I have know at least one person who could not concentrate or remember where she lived after being on it. For me it helps a lot, for her it was detrimental. I guess like everything else, it effects each person differently. Sorry I could not give you a more difinitive answer.

Title: Re: Topamax questions
Post by rickyshot on Aug 14^th, 2006, 9:23am

I can't remember my dose but it was small cause I was starting out. In two days I was changed getting depressed and not able to function well. After one week I was full blown psychotic (no history of mental illness) and tried to throw myself out the window at work. What drama. My mind went to a very very dark place and if that is what mental illness or depression is I really feel for those people. Never again. I would take a kip 10 over what I went through OK maybe the two were equal one horrible in one way and the other horrible in another.

Title: Re: Topamax questions
Post by Karla on Aug 14^th, 2006, 4:58pm

Did you lose weight on it? Gain weight? How much? I gained about 10 pounds on it.

What dose were you taking? I started at 200mg
starting at 25mg and incrimenting to 50, 100, 150, 200.
I latter did the same thing and went up to 600mg.

Did it cause (or worsen) depression? No but I was already on an antidepressant. I was told it was a mood stabalizer and would be only be good for my mental health.

How bad were the cognitive side effects? I had terrible memory problems.

Anything else you think is important? no

Title: Re: Topamax questions
Post by Cynde on Aug 14^th, 2006, 8:42pm

It did wonders for me -- I had vicious attacks for several months last year, often three and four per day. First bout I'd had in almost 17 years. Tried prednisone, calcium blockers -- no response, lots of headaches, several ER visits for oxygen, lots of Maxalt...Then I went on Topamax, which isn't called "dopamax" for nothing! Yes, it made me spaced out. Yes, my memory went to hell. It even made me have one episode of blurry vision that made me turn around at the end of my block and not be able to drive to work that day. (This was at about 200 mg.) But for my headaches, it worked marvelously. After I reached about 100 mg, I had no more headaches, then stayed on 200 mg for a month or so, then weaned off. I am pleased to say that I can even enjoy wine now (it was the single most awful trigger I had) without worrying about an attack. I've been headache-free for a year, and although I always keep Maxalt in my purse and my prescription of Topamax up-to-date, I haven't needed any of it...I know the beast can return, uninvited, at any time, but I would encourage anyone who hasn't had success with other meds to try Topamax. It helped me get my life back.

Title: Re: Topamax questions
Post by Anne_L. on Aug 14^th, 2006, 8:57pm

I took Topomax for Migraine prevention; I'd been using Depakote (helped a little and didn't have clusters on it) but I gained lots of weight. I never got up very far on the dose because I felt awful. I lost maybe 12 pounds in a month :) but that's because I couldn't swallow. I can't remember much about it except a big haze. I chose to go off it and not go back on Depakote. Maybe a bad choice as I just started a new vicious round of CH on vacation while on a plane. Right now I am sticking with abortives (Imitrex or oxygen) and not messing with anymore pills. Not much fun but I've lived with this for over 30 years guess I can make it through it again. For sure I would never, ever take Topomax again

Title: Re: Topamax questions
Post by Katherinecm on Aug 15^th, 2006, 1:46am

Topamax left me happier than before.

It allowed me to sleep better than I had since that cycle began.

It might help someone lose weight in 2 ways: it alters the taste of some foods (especially acidic things such as carbonated drinks), and if you are a food addict it stops the drive to use the object of your addiction by altering dopamine levels. It is currently in human trials for alcholism for this reason, and there have been trials discussed (although I don't know what the follow-through has been) on using it to treat other addictions b/c anecdotal evidence suggests it helps with those too.

If you are on other drugs that cause weight-gain or you're a stress-eater as opposed to a food addict you might gain weight. Most people lose.

Topamax DOES interfere with hormonal birth control in SOME women, though not all.

If she takes it, increases the does VERY SLOWLY (think 25 mg/wk), gives it at least 6-8 weeks to kick in, avoids the acidic foods and drinks that will probably tast terrible anyway, and drinks lots of water (not soda or juice), she should be fine.

Side effects are caused from increasing the dose too fast.

Title: Re: Topamax questions
Post by SophiaK on Aug 15^th, 2006, 8:33pm

I had a bad reaction to one dose of 100mg, cut it down to one dose 50 mg, wound up in the ER. If you cannot take sulfa drug do not take this drug, it's in the sulfa family of drugs. I was unable to think straight, head felt like it was vibrating, walked like I was drunk, had a llot of difficulty in trying to speak, never ever again, that stuff is rough.

Title: Re: Topamax questions
Post by alienspacebabe on Aug 16^th, 2006, 11:19pm

Thanks for all the replies. I'll pass these on to her.

Title: Re: Topamax questions
Post by sandie99 on Aug 17^th, 2006, 7:15am

Lizzie,

I'm about your friend's size. I took topamax for a while back in London in Spring 2004. It was supposed to send my ch into remission...

I have been trying to recall the dose, but I can't. Unfortunately I cannot check the matter from my CH diary, as it was destroyed with my late computer... :(

But during the short while I took it, I didn't gain nor lose weight. It did nothing to my ch either. I did get hit more frequently and the kip level was higher than I had had before topamax.

And lets not forget: during the first 3 days I had HA 24/7 on the ch place - that was horrible! And I cound not recall if I was coming or going... Truly dopeymax for me! :(

I hope it helps,
Sanna