Tell me your experiences with Topamax

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momof3boys

momof3boys

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Im kind of nervous with starting a 'add on" medication. Ive been taking Keppra XR alone now, since May 2011. My neuro thinks Topamax will be good to add with the Keppra xr. Im nervous because even though two pharmacies has told me that taking the Topamax with the Glucophage xr Ive been taking since the age of 18, wont interact, Im still nervous about trying it.

I just wanted to see if anyone else here has taken Topamax and what was your outcome? Good? Bad? Share your outcomes with me please! :)
 
The very 1st day I had my first pill, I felt such clarity. I thought it would be a great fit. As I got closer to the dose my dr wanted me at, I began losing a lot of hair. This is kind of hard to explain, but long vetical lines like doors and corners along walls I started to see double of. It was very strange. Also, things began to taste very weird- carbonated sodas tasted very flat. I think I was on topamax for about 2 months before I had enough. It took a good 6 months for my hair to stop falling out and for the super fuzzy head to get back to semi-normal.

Everyone reacts differently to medicine. I hope it's a good fit for you. :)
 
Oh gosh! That scares me about the hair falling out! Dang.. I thought Keppra was bad... well I shouldnt say bad.. but Ive noticed that I have lost a fair amount of hair since starting the Keppra XR since November 2010. Not alot, but enough to notice. I hope it works for me. Im sorry you had such a bad experience. :(
 
Hi Kristin,

Currently I'm on 200 mgs. of Topomax and I can handle the side effects. Back in the '90's I was on a higher dosage- 400 mgs. and it made me anorexic. I had absolutely No appetite. I lost 25 lbs. and it made me very forgetful and difficult to find words (aphasia). I had no energy. I didn't experience the hair loss.
 
Thanks Cint! :) I dont know the actual dose that my neuro is wanting me to get to... but as far as I can understand thats written on the prescription he gave me.. its for 25mg tablets. Says to take 1 at night for the first 7 days... the other stuff after that I cant read! his handwriting is terriable! but it does say at the top of the area.. #60
Im assuming that means 60 tablets? Then he has 12 refills added onto it. So I guess I will find out more after I start it.
 
I was on Topamax from 2006 - 2008 which was an add on to the Tegretol. The main side effect I had from the Topamax was that I didn't have much appetite & lost a lot about 20kg (approx 44 lbs) over the 2 years. Before I started on the Topamax I was overweight weighing about 90kg (approx 198 lbs) & got down to 70kg (154 lbs). When my Neurologist took me of the Topamax he replaced it with Keppra.
 
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Well, I started it last night. So far, so good. I just hope I dont run into problems with it. Keeping my fingers crossed it does the trick for the auras and seizures!
 
Good to hear its starting well for you!

I took it for awhile, and first thing I noticed was loss of taste (things tasted diff), fuzzy headed and word loss like cint mentioned, I lost alot of weight on it, fingers would stay numb (eat a banana and it would lessen), and after a few months things tasted normal again the side effects for me would start to go away until i had to take the next step of meds till i got to the dose i was suppossed to be on and then things would go mostly back to normal, if they ever tell you to stop taking it please do it slowly, I had a few things go on when coming off it slowly that were not normal for me.
Hope it helps and works well for you my friend,

mike
 
sure am thinking of u Kirstin...let us know how it all goes...

my CWE family are always in my prayers...
 
hi kristin,
was on topamax for over two years, went off b/c it wasn't working anymore. my feelings on it are so mixed.

E wise: i went 10 months without a partial when i started it. could not believe it, that had never come close to happening. then, when they came back, they CAME BACK. lambasted me from the first day and had partials after that like i had before. after the first grand mal on it my neuro doubled the dose - made me a mental mess for a few months, couldn't think straight, put sentences together (not 24/7 but a lot of the time). but after that my head cleared and i stayed on it until we started talking surgery and changing drugs, topamax was the one i chose to go off of.
physically: i lost a few pounds, but better than anything it kept my weight stable. i stayed at 135 pounds for a few years - very nice and very healthy for a person. i never had any issues with my hair or skin, but did with my digestive system for the first year, to the point i was so worried i had a colonoscopy. it was clear and i did get better.
topamax was weird for me like that - was so great or so bad, never just 'good.'
 
Thank you all for telling me your experiences with Topamax and wishing me the best! It means alot to me. I took my first dose of topamax last night. I feel fine today, but the only weird thing I found kind of odd was that normally Id be hungry through out the day, where as today Im not hungry, but thirsty. If its from the Topamax, i didnt expect it to kick in this fast. But for the time being, Im handling it ok. :)
 
could just be you being 'off' b/c you're carrying so much stress about starting a new drug. i can't see (and just my two cents) one dose (and that small) starting to kick in, in that way anyway, already. give it a few days and see if anything changes, getting hungry, even peckish. it may even take until the stress diminishes for you to get back to your old self. try to take it easy hun, it's worth it ;)
 
I am on it. I was up to 100mg a day but my neurologist lowered it back down to 50 mg a day. At the higher dosage I was really spacey. One thing I found that helped lessen some of the side effects was to eat before I took my AM dose. If I ate half a banana or a bowl of cereal or something I usually felt "more normal".
 
Thanks everyone for your feedback.

Today is my 4th day on it and so far Ive noticed that when I do drink a diet soda, it does taste different, but nothing that i cant handle by not drinking it. My appetite has been affected. Im trying my hardest to eat more, little things through out the day, buts its been hard to even get the smallest of things down. Other than that, Im doing ok so far.
 
Topamax is often nickamed dopamax, made me cognitively slow, and frustrated coworkers when they would ask me a simple question and it took me forever to respond, I ate well but still lost weight and soda tasted not as good but I still drank it. I got off it because it didnt do anything for seizures and made it hard to get an erection.
 
I can agree with you on the soda taste. Today I was drinking a diet coke and it tasted so different. Like there was no taste to it, but it didnt taste completely awful like I had to spit it out. I hope it works for my seizures, so far things have been going good.
 
well I hope it works for you, it has low amount of side effects compared to other AED's and I looked good after I lost some weight.
 
Our Jonathan was on Topomax from age 2 to age 6. It stopped all his seizures immediately, and he had great seizure control for about 3 1/2 years (only ONE seizure that whole time) but then it stopped working. The last year he would have a seizure every few months, and then they started getting closer and closer together until he was having several seizures a week, even when the dose was increased to really high levels.

On the low dose, the only side effect that Jon had was that he didn't sweat, so we had to be careful that he didn't get overheated. Other than that, he did great. He never lost his appetite, had a good energy level, and made excellent developmental progress...

...UNTIL that last year when the dosage was increased. Then he gradually began losing his spoken language until he was almost non-verbal. His speech therapist thought it was the seizures causing the language loss, but in the year that he lost most of his language he only had about 4 seizures (tonic-clonic, but still...).

When you take Topomax make SURE you drink lots of water every day, and you should have your electrolytes checked now and then because it's easy to develop acidosis on this med.
 
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