Topamax and side effects?

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

LJ-Bain

New
Messages
1,054
Reaction score
0
Points
0
Topamax has been kind to me...it has been making me a little sleepy and my word recall has been a little creative but I can handle it! It does take away my appetite but I can handle this as well.
The tingling of the hands and feet is a little interesting.
I was wondering if anyone has ever had the sensation that their toes were cold and wet when they weren't? This seems a little odd to me and a little different.
The meds are working for me so I would hate to have a negative side effect!
But if it remains just in my toes then I can handle this too.

I love sleeping through the night.
There was a thunderstorm the other night and I slept right through it!
Sweet sweet sleep!
And someone startled me the other day with a loud noise right behind me and no seizure! Awesome. Just awesome.

Feeling pretty normal and positive.
 
My neurologist has told me that AEDs can cause neuropathic symptoms. I've had the whole gamut, from being stabbed with pins, crawled over by bugs, dipped in water, to being burned with cigarettes. For me, the beginning was pretty shocking and annoying, but after a year or two, I barely notice. Well, except for the painful ones, which make me jump but they go away really quickly so I'm okay with it.
 
Topamax is one of few drugs that actually helps my seizures.
After about a year onTopamax I lost 30-35 pounds.It It use to make me irritable when I was first on it.
 
I just started Topamax last week & am having no side effects so far. Oh, except sodas taste horrible LOL. I was having terrible side effects from Keppra. I know Keppra's supposed to have the least amount of side effects but it made me feel terrible.
 
I had a lot of side effects with Topamax initially, but did learn that drinking lots of water really helps with a lot of them, as well as having a very healthy diet (seems like one of those obvious comments but vitamins and electrolytes like potassium are super helpful). I swear I must be the only person who never had the slighest change in the taste of diet soda. No difference, whatsoever.
 
Last edited:
Thanks for all of the helpful comments everyone! I too hated Keppra but am loving Topamax! I will have to try the extra water trick. Thanks!
 
I second the drink lots of water comment. Most of the side effects have diminished for me, though I'm only on 250 mg/day. However, beware of the sun and heat. I over heat very, very quickly still - whether it's when exercising or just out in the hot sunshine. I'm not sure if that's common with Topamax or one of those "lucky" rare side effects, but it's something to keep in mind - shade and cold water are your friends in the heat. :) Good luck!
 
Thanks for all of the helpful comments everyone! I too hated Keppra but am loving Topamax!

That is the combination of meds I'm currently taking. When Topomax first came out, my neuro had me on a much higher dosage and I was SOOO spacey and was really having a hard time finding words and staying awake, thus the name-Dopemax. It also made me anemic.

I do much better on Keppra + Topomax than I did when I was on Topomax with other meds. Keppra controls my seizures much better.
 
Cint...I am glad that Keppra and Topamax works for you! Isn't it interesting how what works for one person is different for another? My own sister loves her Keppra for herself but it is something that doesn't work for me! Go figure! I am sorry though that it made you anemic and super spacey...hopefully the dose you are on now works better. Good to know of all of these side effects.
 
I've been on Topamax for over a year and the first few months building up the dosage was quite difficult for me. I was very lethargic, bad tempered & drowsy. I can only tolerate 75mg and not the usual 100mg but that works for me. I'm fine with it now. I did lose a ton of weight too which was fabulous! Lol
 
My daughter has just added Topamax to Keppra, Keppra on it's own wasn't controlling the seizures. The specialist said to make sure she drinks 1.5 litres of water per day.
 
Back
Top Bottom