Trileptal experiences good/bad??

[Janellie8]

Hello everyone

Two weeks of topamax was not helpful. I was constantly tired ALL THE TIME! And it gave me headaches ironic that topamax is used for migranes. I still am having seizures every night- but less. No more topamax though. My doctor now perscribed me on trileptal... I think that's what it's called. Anyone have good or bad experiences with trileptal? My doc even mentioned keppra, but we are going to try these meds first! Wish me luck!

Janellie

 

[BIGMAN131307]

I've been on Trileptal for many years. Sometimes combined with other AEDs, or alone.

It never completely stopped my CPS. But it prevented me from having tonic clonic seizures.
Of all the fourteen (yes 14) different AEDs I've been on, it bothered me the least.

I experienced the usual tiredness, headaches, etc. But that's common with most AEDs. The only side effect that bothers me is severe dry scalp. It is yellowing and flaking of the skin. Somewhat like a bad sunburn that keeps peeling. You wash it away, and in twenty to thirty minutes later it comes back.

You may or may not experience it.
_______________________________________________________________________
The good thing is I'm on my way to be rid of Trileptal if my RTLS is deemed a success.
5 months down and 19 months to go, until I ween down and possibly off it.

 

[tinyfrogs]

I was on trileptal for 2 years. It didn't stop the seizures completely but I think maybe because my dose wasn't enough. It did make them happen less frequently though, and made me feel better mood wise than I had in a long time. Only reason I'm off it is because I didnt have any provider to prescribe it anymore.

 

[Tez_20]

Hello everyone

Two weeks of topamax was not helpful. I was constantly tired ALL THE TIME! And it gave me headaches ironic that topamax is used for migranes. I still am having seizures every night- but less. No more topamax though. My doctor now perscribed me on trileptal... I think that's what it's called. Anyone have good or bad experiences with trileptal? My doc even mentioned keppra, but we are going to try these meds first! Wish me luck!

Janellie

Hi Janiellie,

Sorry to hear the Topamax didn't help and regarding your seizures....finding the right combo can take years, which I myself have experienced but I do hope you benefit from the trileptal....I take keppra myself and never had no problems with the med or side affects but as we know it's down to each individual and their system to how they respond to a med.

The link below covers a lot on the med if that helps

http://www.drugs.com/trileptal.html

((Wishing you all the best of the med and keep we updated))

 

[SlimBlue]

Hi Janellie8

Met my new neurologist today for the first time. Actually seemed a decent chap for once.

He's suggested trileptal for me too, as the carb/lam/keppra combination seems to be having less effect these days and I really don't want to increase my keppra.

I was very interested as I'd do anything to reduce my current side effects, the trileptal does appear to have many similar ones- just not as many

If that goes ahead, I'll re-post here with my experiences..

 

[lostfeathers]

i've been on topamax since 2009 for migraines and it treats me just fine, small side effects that i've learned to deal with.

recently though they put me on trileptol as well to deal with a large spike in seizures, didnt agree with me at all. I lost weeks of myself on the stuff. It took away my whole ability to function. My seizure activity went through the roof, the stomach pain was unbearable, couldnt eat, sick all the time etc didnt get the vision changes normally associated with it though. I think I'm just one of those people that has that severe aversion to it though. I'm off and trying zonegran now.

I wish you the best with it, trileptol really is a hard hit or miss medication.

 

[cuppycake21]

lostfeathers - How are you doing with the zonegran? It was, at first, a God-send for me. My verbal recall came back, it totally controlled the seizures. But after time I lost all hunger and thirst. I ended up 83 lbs and in the hospital for 3 weeks. Do you notice a lack of thirst or hunger?