Anyone take Trileptal? - Epilepsy Message Board

ChelseaMomof2 · 10-12-2005, 02:08 PM

I am currently doing research on a bunch of different anti-seizure meds so I can go in to see my neuro on the 18th armed with information since I may be going off my Topamax (due to significant hair loss). I have simple-partial seizures. I do not lose consciousness and they have been fully controlled with 200 mg of Topamax daily.

I would like to try Trileptal because I have read that it has a low amount of side effects compared with a lot of the other meds (including it's sister drug, Tegretol). Has anyone found this to be true? I would like to hear from anyone who has tried this drug. I would like to hear about the side effects.

Thank you very much.

Nella985 · 10-12-2005, 02:37 PM

I take 1200 mg/day of Trileptal and my neuro says my levels are on the low side of normal but I am usually able to control my seizures with low doses as well.

My side effects have been dizziness, thirst and slightly blurred vision. Nothing compared to the side effects that I expreienced on Lamictal. I had severe hair loss and swollen glands that have both disappeard since taking Trileptal.

I don't see very much information here on Trileptal very often but so far I have felt ok. I did have a breakthrough GM Seizure a few weeks ago but my neuro only had me on 900 mg/day then and she told me that it may happen on such a low dose so it wasn't too unexpected. You do have to watch your sodium levels on this, mine were a little low in May and that may have been a factor too. One side effect that my kids LOVED was the hiccups - I would have hiccups for about an hour after taking my pills twice a day. That only lasted for the first week or so though - kind of miss them now

I understand the hair loss, I am only 28 and my kids are so young! I just didn't want to lose my hair if it wasn't necessary, it's a real blow to your self image. I wish you the best of luck! Come back and leave a note if you do end up on Trileptal. I am interested to know what you find out about this stuff!

ChelseaMomof2 · 10-12-2005, 03:36 PM

Thanks for the quick reply. Can I ask how long you've been on Trileptal? I'm wondering if the side effects that you mentioned might go away if you haven't been on it for that long. I know that I had a lot of wicked side effects when I first started Topamax, but most of them went away with time.

Yes, I read about the low sodium thing. I guess I would just have to have my blood tested regularly for that.

Oh, the hair loss. It's just awful. Right now we aren't sure if I have a thyroid problem or if it's the Topamax (I'm seeing an endocrinologist in Nov.), but I have strong suspicions that it's the Topamax. I don't lose a lot during the day, but in the shower and when I comb it out afterwards, I lose ALOT. It's kind of scary. I am a 34 year old mom of 2 (my boys are 7 and 9).

Thanks so much for the info. on Trileptal. If I end up quitting Topamax, I am going to request Trileptal.

EthanF · 10-12-2005, 04:54 PM

I used to be on trileptol. I stopped though because for a couple hours after i took it each time i felt dizzy as if I had been spinning in circles for hours. The only way I could stop these feelings was by laying down. Since I was in college at the time it was a real bad thing. Sorry Im in a rush but if you want more details drop me a reply.

Best of luck to you
Ethan

Nella985 · 10-12-2005, 05:30 PM

I have only been on it since the beginning of the year. It took some time to come down slowly from the Lamictal but it doesn't take long to work up on Trileptal which is nice (25 mg a week for Lamictal takes forever!)
I am hoping that the side effects will go away. I can't drive again after the GM until the end of December and the dizziness is getting more manageable now so I'm not really worried about it for the time being but I can see how it might have been very difficult for Ethan to try to manage that while in college. I guess that with these meds it's trading one side effect for another but I would rather be thirsty than bald if you know what I mean!

As far as the blurred vision, it's actually better than it was on the Lamictal, I only noticed it when I increased my dose. It's more like reading black on pure white that bothers me most. Could be bad eyes I guess but I like to blame the meds for as much as I can, it makes me feel like I'm semi-normal.

The hair loss that you have sounds just like mine. I was on Lamictal ( not known for hair loss ) for about 3 years before I had any problems and it happened really fast. All of the glands in my face and neck swelled up overnight. My hair started to fall out in clumps and I started to have some issues with memory. I went to another DR while waiting for my neuro appt and they did a full blood/urine work up and couldn't find anything wrong. We decided to change meds and within about 2 weeks of lowering the dose of Lamictal I noticed an improvement with the memory and glands and after about a month on only Trileptal my hair loss slowed dramatically, it's not a problem for me now at all. I recommend taking Centrum Silver, it has extra Zinc and Selenium (SP?) they don't cause stomach upset for me and I seem to be sensitive to multivitamins.

Let me know how you are doing, I know that it scares me to have to mess with meds. I'm sure you are going to do great but it's nice to have a place to feel understood.

Good luck!