Oh Please describe your experiences with Trileptal

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Yippee!!!
I'm pleased to report that my Daughter is doing ok with the Trileptal ..no seizures for over 2 weeks & she is smiling & looking so healthy & happy...

She still has this Psiorius skin rash but it's fading.....the only thing is I've had 2 out of 3 drs state the rash will not come back & 1 dr states it will ...

Don't know who to believe ...sooo confusing.
 
That's great. I'm hoping your daughter stays on that good path. :)

As for the rash, I'd route for the odds on this one.

Just keep with the positives now, and everything will hopefully fall in place.
 
Thanks ..
I hope the job stuff works out for you, you seem realistic & positive minded despite all the challenges that's involved with epilepsy.

Sometimes things hAppen when you least expect it & it does fall into place...you just may not realize it at the time...
 
Hi There

Its the long summer holidays in Australia & the family have been doing the summer stuff like going to holiday house and using the pool and going to the beach.

Its all out of routine for my daughter and she gets quite stressed & I have noticed an increase in seizure activity..despite her enjoying the water activity.
My problem is I am not sure if she is experiencing the usual pre seizure yuk that some people have or is she having increases in head aches???
As sometimes she is agitated and may or may not have a seizure.

Its very hard when she cannot verbally express her feelings & thoughts.

Is there anyone having bad bad headaches & does stress this lead to seizure activity?
 
Is dandruff a side-effect of trileptal? I have dandruff issues but it never occurred to me that the trileptal could be doing it. It makes sense though because I don't remember having dandruff before I started the medication.

I've been taking trileptal for the past 2.5 years. It's the only seizure med I've ever been on. I know the original post is old, but I might as well put it out there that I had no weight gain or loss due to the drug, and mood-wise it seems to get rid of any irritability that I would normally have. As far as sleep goes, I think that the day I started trileptal (I was 21 at the time) was the first time I got a good night's sleep. I had always jerked around a lot in my sleep (my mom hadn't thought anything of it, ugh) but after I started taking trileptal I would actually wake up refreshed!

Anytime my dose gets raised though, I spend a day or two walking around like I'm drunk. It goes away quickly, though. I haven't had any other side effects. Except for maybe dandruff, now that I know that's a thing.
 
Blonde Angel said:
Hi There

Its the long summer holidays in Australia & the family have been doing the summer stuff like going to holiday house and using the pool and going to the beach.

Its all out of routine for my daughter and she gets quite stressed & I have noticed an increase in seizure activity..despite her enjoying the water activity.
My problem is I am not sure if she is experiencing the usual pre seizure yuk that some people have or is she having increases in head aches???
As sometimes she is agitated and may or may not have a seizure.

Its very hard when she cannot verbally express her feelings & thoughts.

Is there anyone having bad bad headaches & does stress this lead to seizure activity?
Click to expand...

I think stress can lead to seizure activity, and my neuro has said that headaches can actually lead to seizures, too. Make sure that agitation is not a sign of seizure activity as well. I know that if I miss a dose of my medication I will get irritated and agitated and get a bad headache before any sign of seizure activity even shows up. Although, as I've mentioned in my post above, trileptal seems to completely wipe out feelings of irritation for me but this may not be the case for your daughter. Personally, if I notice that I'm unusually irritated or agitated, I see it as a potential red flag. Usually I can sleep it off, though.
 
Thanks for your feedback..its appreciated. :)

My Daughter does get a little dandruff now but its not a drama..people with Autism are well know to have certain levels of anxiety as it is, so sometimes there is that uncertainty of whether its Autism or Epilepsy related.

Her body language does tell me she is feeling yuk and it seems like its headache related..(eg clutching at her head, rocking her body furiously). So I do give her pain relief.

WE are going for an MRI scan on the 13th Feb...she will need to be sedated..I am seriously not looking forward to it, as I will be with a very stressed out child who hates hospitals.

Yeah... not that I can blame her.
 
Another thing I have noticed..

She is taking a long time to wee these days..will sit on toilet even like 20mins+, has anyone noticed this with taking the Trileptal? Urine is more darker too.
 
You might want to make sure she's getting enough liquids with nutrients. Low urination and darker urine can be a sign of dehydration and electrolyte imbalance, and Tegretol can cause a drop in the body's sodium levels.
 
LovelyGoldfish said:
Is dandruff a side-effect of trileptal? I have dandruff issues but it never occurred to me that the trileptal could be doing it. It makes sense though because I don't remember having dandruff before I started the medication.

I've been taking trileptal for the past 2.5 years. It's the only seizure med I've ever been on. I know the original post is old, but I might as well put it out there that I had no weight gain or loss due to the drug, and mood-wise it seems to get rid of any irritability that I would normally have. As far as sleep goes, I think that the day I started trileptal (I was 21 at the time) was the first time I got a good night's sleep. I had always jerked around a lot in my sleep (my mom hadn't thought anything of it, ugh) but after I started taking trileptal I would actually wake up refreshed!

Anytime my dose gets raised though, I spend a day or two walking around like I'm drunk. It goes away quickly, though. I haven't had any other side effects. Except for maybe dandruff, now that I know that's a thing.
Click to expand...

Yes it's possible. But are you sure it is dandruff? It can also be dry scalp.

In my case it is dry scalp. Which is the only bothersome side effect I have. Regular dandruff or dry scalp shampoo provides temporary relief.

If it is dandruff, hopefully it will be easier to deal with.
 
BIGMAN131307 said:
Yes it's possible. But are you sure it is dandruff? It can also be dry scalp.

In my case it is dry scalp. Which is the only bothersome side effect I have. Regular dandruff or dry scalp shampoo provides temporary relief.

If it is dandruff, hopefully it will be easier to deal with.
Click to expand...

It didn't occur to me that it could be dry scalp. I don't think so, though, because my hair tends to be pretty oily, if anything. Dandruff shampoo does help.
 
Nakamova..
You have made a boo boo its about Trileptal not Tegretol, but I get what you are stating about the sodium levels. I cannot get my girl to cooperate with blood tests any more, so I am aiming for her electrolytes to be checked when they give her an anaesthetic for the MRI scan on the 13th Feb.

Meanwhile, I do encourage fluids.
Ta.
 
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