Trileptal

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!

D

DEEMO :)

Pillar
Messages
44
Reaction score
0
Points
31
I have just finished my VEEG :woot: I didn't have a seizure but my eeg showed abnormal activity in my left size of my brain the whole time. I have been diagnosed with epilepsy and suspected temporal lobe epilepsy. Bad news is it has now progressed to generalised seizures. My question is I have been on keppra, lamictal and paxam. They now want me on trileptal.

Has anyone been on this drug and any side effects experienced? I am worried as I was on tegretol last year and it almost killed me and deranged my liver so bad the thought it was going to fail. As this med is related to that one I'm a bit nervous.

Thankyou for your help you are legends :D

At the moment im back on my usual 3 meds and am experiencing double vision and unable to walk properly due to bad coordination. hopefully trileptal works a bit better :D
 
I was on Trileptal some years back, but had an allergic reaction and had to stop taking it. I was told that since I was allergic to it, and Tegretol is similar, I should never take Tegretol either. I'm guessing that maybe the reverse is true? Are you seeing the same dr. that prescribed the Tegretol before; if not, does he or she know how bad it was for you? You should probably find that out, or if it's the same dr. remind him or her about your past medication history. Sometimes they need a reminder!
 
They are going to take it really slow and ensure I don't have any reactions. I'm concerned because the tegretol was really bad. I am just going to see how it goes. It is the last medication before they consider surgery so im definitely interested in trying it :) wow I cant believe you had an allergic reaction. I hope that doesn't happen to he. although im not allergic to anything elso so fingers crossed :)

Thanks for the advice. I start taking it tomorrow :)
 
I took Trileptal about 8 years ago and had to be taken off because it lowered my sodium level (hyponatremia). That is the one side effect that one needs to beware of.
 
Well the new meds have made my coordination really bad and I can barely speak. Cant even walk up my stair without help. I am having trouble writing this due to double vision. I'm mentally slow. I have double vision and generally not feeling well. I'm hoping they start to disappear after I have finished after 8 weeks of increasing.

I am concerned about it taking 8 weeks to increase because school holidays are only 2 weeks and there is no way I can teach in this state. Hoping it will go well.

Another side effect I am very concerned about is depression. I have spent the last 3 nights crying my self to sleep. I have absolutely nothing to be crying about. I was also crying today :/ has anyone had this? geez I hope it goes away. I was buying a drink from a newsagent and started crying. Really embarrassing :roflmao:

Thanks for all the support
 
Let the doc know that you're struggling with the side effects, especially if they hang around, or get worse. If your seizures are controlled, you may not need to go all the way up to the target dose.
 
Hi Deemo! Congrats on the completion of your eeg :) I'm allergic to lamictal and can't take it but if you're having coordination problems and depression, I agree with Nak you should let your doctor know. Maybe you need to creep up even slower.
 
Hi Deemo I just read about your trying Trileptal, I've not been on here for a while, and you are probably either getting on well with it or hating the mention of it by now. I just wanted to say how much it helped me, and stopped my terrifying auras, in fact, from the day I started taking it, about eight years ago now, I never had another aura, and I did have some of the side effects that you mention when I first started taking it, but they soon wore off, and my body just got used to the drug. I take it with Keppra and Zonegran, and Clobazam for clusters. I still have complex partial and atonic seizures (not tonic clonic) but I always said that the most terrifying part of my epilepsy, were those damn auras that used to haunt me day and night!! Hope you are ok now whatever you are taking? Cheers Lainey X
 
Thanks for all the feedback.
Well I can buy a coke now without crying :D the side effects have definitely got better. I can walk, talk and double vision has gone. I have a few other things like a new rash, kind of like really bad acne but painful and itchy but it comes and goes. So much better than the crying :D
I also get a bit depressed randomly but it has improved so much. I have had 2 auras because my meds are so low. But I do have a good feeling about this medication. They are really taking it slow this time so I won’t be on my maintenance dose for 8 weeks.
Elaine I agree that the auras are the worst part. Sometimes I just want to go unconscious so they will stop.
Did you even have confusion from the medication? I have been saying the strangest things to people. I keep talking about a person who does not exist. I have to keep reminding myself that there isn’t another person involved in some events in my life. I just feel like there is always someone else. It’s not bad enough to be crazy and admitted. Just strange 
Anyway thanks for listening, well reading these posts, it always helps when others can relate and don’t think I’m insane ;)
 
Let your doctor know about that rash. It could be an allergic reaction. You may be feeling better, but rashes are a sign of allergy especially in Lamictal.
 
Our son was on Trileptal for about 3 months when he was 7 years old. It didn't help the seizures, but caused bad side effects -- most notably hyperactivity and aggression. But the reaction in children can be quite different than in adults.

I'm concerned about the rash you're mentioning, as Brandibrat noted, it can be a sign that you're allergic to the med. I can't remember with Trileptal, but with Lamictal, the rash can actually be life threatening. Call your doc immediately.
 
OK that rash was a little scary.

You were right KarenB. The rash was small for the first few days until I increased meds and I was covered head to toe in a rash that was sooooo itchy!!!!! My eyes swelled. The only part that the rash wasn't on was my throat. I went to the doctors and they have stopped the trileptal and I am just not medicating until my Epileptologist calls in a few days with to see if I have recovered. I am on prednisone for 2 weeks. This is the first night I am able to move without scratching and being in pain.
So much for a good feeling about this med :) I am staying positive though there will be another med to try. Number 8 :D

Thanks for the advice about going to the doctors. I'm the type to put up with side affects for a few months hoping they disappear. They said I was a day off my throat becoming swollen.

Hope everyone else is doing well
Thanks
Deemo :)
 
You must log in or register to reply here.
Back
Top Bottom