Oh Please describe your experiences with Trileptal

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Blonde Angel

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My Daughter is now being weaned off Keppra as its not doing her good.. so just wanted some feed back on people's experiences .

.weight
.behaviour
.sleeping
.moods
Pill usage

All feedback appreciated.:rock:
 
My daughter had been on a fairly low dose of trileptal for about 7 years now and says that she has no problems at all with it. I was on it a year or so ago for about 5 months and was nauseated a lot, had stomach pains, and didn't feel like eating. Keppra and zonegran both made me feel like I wanted to jump off a bridge oar something, so I wasn't on those for long, either. I'm back on good old Lamictal now. Since I increased from 400mg per day (200 in morning and 200 at night) to 650 mg per day spread out over 4 doses about 6 weeks ago, I've had no bad side-effects and no seizures. That's the longest I've been seizure-free for over 30 years.
 
I took Trileptal for several years but eventually had to be taken off because one of the side effects of Trileptal is low sodium. But it is also used as a mood stabilizer. Other than the low sodium problem, I felt good while taking Trileptal.
Now I take Keppra and Topomax.
 
arnie said:
My daughter had been on a fairly low dose of trileptal for about 7 years now and says that she has no problems at all with it. I was on it a year or so ago for about 5 months and was nauseated a lot, had stomach pains, and didn't feel like eating. Keppra and zonegran both made me feel like I wanted to jump off a bridge oar something, so I wasn't on those for long, either. I'm back on good old Lamictal now. Since I increased from 400mg per day (200 in morning and 200 at night) to 650 mg per day spread out over 4 doses about 6 weeks ago, I've had no bad side-effects and no seizures. That's the longest I've been seizure-free for over 30 years.
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Six weeks seizure free?! Congratulations, arnie!!
 
@ Arnie
It seems the Trileptal varies in symptoms between you & your Daughter...what's works for one may not work for another.
I will see how it goes... Great to see some relief from the seizure stuff.

That's the ultimate aim for all.
 
@Cint
I was told by the Paediatric Neuro that the sodium depletion occurs more in older people thn kids, that I shouldn't be concerned with that.

My biggest issues is to find meds thats going to not need blood tests..as it causes too much distress for my girl.

I've read up that it may interfere with the pill effectiveness , but if I find her seizures are controlled & she has no drama with behaviour issues/sleeping problems .. I may have to look into something else.

So time will tell.

The next step is either Lamictal or Topamax , but I don't like the sound of potential mental instability with Topamax.
But I've got to be flexible & give something a go.

I just get so frightened reading side effects like "suicidal thoughts, depression".

What's that saying?
"You dont know if you don't try"
 
I feel like I've got to learn pharmacology.. Ha ha.

I had pages of Topamax Lamictal, Zarontin, Zonegran, ,Clarazepate & Trileptal, going through side effects when I saw the Neuro.

I felt empowered for a little while. :)
 
I've been on Trileptal for over ten years combined with other AEDs and alone.

Of all the possible Trileptal side effects I could have, I only suffer from one. That one
isn't dangerous, it is just annoying. It's "Severe dry scalp".

Basically all the hair located on my head builds up yellow chunks of dry skin. The worst areas include my scalp, eyebrows, mustache, beard. I also have areas around my nose and ears. After washing these areas the dryness comes back in minutes. It doesn't matter what soap, shampoo, lotion, or whatever I use, it keeps coming back. I've been to dermatologists and they couldn't help me.

This problem will only go away once I stop taking Trileptal.
 
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Blonde Angel said:
@Cint

I just get so frightened reading side effects like "suicidal thoughts, depression".

What's that saying?
"You dont know if you don't try"
Click to expand...

Every single AED now has a black box warning about suicidal thoughts and depression, so don't let that automatically scare you off. That being said, some medications have more of a mood-stabilizing effect, and some have more a of mood-destabilizing effect.

Trileptal and Lamictal are two drugs that tend to be mood-stabilizers. We loved Trileptal for the 8 days my daughter was on it before she developed an allergic reaction (head to toe hives) and had to be taken off of it 8) .

Best of luck to you!
 
Kgartner said:
Trileptal and Lamictal are two drugs that tend to be mood-stabilizers.
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I was originally put on Trileptal by a psychiatrist for my depression, but had to be taken off. Topamax is also used as a mood stabilizer and for migraines. Older AEDs like Tegretol and Depakote are also used as mood stabilizers.
 
@Bigman weird you got the dry skin stuff as the listed side effects state hair loss... Better than that.

It must stuff do negative stuff to some peoples skin it seems.
 
@Kgartner..
Interesting you refer to the skin drama your daughter had experienced as, my girl still has the Pityriasis Rosea from the Keppra.. Am slowing weaning that off. The Neurologist was not keen to give the Lamactil due to the current rash.

See how it goes..
 
Yes, better than hair loss. :)

I do get some of the basic side effects like drowsiness, tired feeling, and headaches.
But that is very common for all AEDs. Those don't really bother me.

Others could get side effects much worse. :(
 
@Bigman
I am noticing that my daughter is getting lots of dandruff on her scalp, but it's not bothering her.
What's bothering her is this pityriasis rosea rash that persists I've been using the Nizoral 2% cream to make her comfortable.

Not sure if you've tried Nizoral 2% anti dandruff treatment it's supposed to help treat seborrhoecic dermatitis
 
Blonde Angel said:
Not sure if you've tried Nizoral 2% anti dandruff treatment it's supposed to help treat seborrhoecic dermatitis
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That's one of many treatments I had Rx from dermatologists. It didn't help any. :(

Blonde Angel said:
Has anyone had loose bowels with this drug?
My daughters got this.
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It is a side effect of Trileptal. But it's one of the rarer ones. You could try to adjust your daughters diet. Eliminate some of the greasier and fried foods from her diet. Try adding some more Fiber to her diet. This will be easier on the digestive system.

Always check with your daughters doctor(s) to make sure nothing else is wrong.
 
We all have mostly a healthy diet with occassional treats.

Stool specimen on 23rd July was negative for any gastro bugs..she has a history of Giardiasis ..so just to make sure.
The watery stools are alternating between pasty & watery, it seems to have started with increase to 1 tablet twice daily.

The drs said to keep it going to let her adjust..if it persists then she's going to need another med review.

The next plan is Topamax.

It's getting soo frustrating... But not much to do but continue to find a drug that's works for her.

Behaviour..is up & down she still has this pityriasis rosea rash that's drives her nuts despite antihistamines & steroid creams applied..not a happy girl .

Took ages to settle to sleep last night (1am)..something was bugging her, she seemed to b in pain (?headache, abdo pain ..who knows /she can't tell me) crying & distressed awful to experience.

Can only try & eliminate the meds that don't work..a very long process that I will have be patient..
 
Blonde Angel said:
We all have mostly a healthy diet with occassional treats.

Stool specimen on 23rd July was negative for any gastro bugs..she has a history of Giardiasis ..so just to make sure. The watery stools are alternating between pasty & watery, it seems to have started with increase to 1 tablet twice daily.

The drs said to keep it going to let her adjust..if it persists then she's going to need another med review.
Click to expand...

Her body does need time to adjust to the new med. It may take a while, but if it's too much her inform her Drs. Some people can't handle different meds.

Blonde Angel said:
Can only try & eliminate the meds that don't work..a very long process that I will have be patient..
Click to expand...

That's the real problem we all have do deal with. The rolling cycle of AEDs, eliminating the meds that don't work. Hopefully the cycle doesn't need to go on for too long.

You need to have some patience with each med. Some may cause more harm at first like loose bowels. Others may experience constipation. You just need to keep a sharp eye on these side effects. Some will go away with time, while others could be worse.


I hope you are able to find an AED that helps your daughter without any side effects.
 
My experience with Trileptal was that the higher it went above 300mg daily, the worse the side effects were and the less control of seizures and mood. Your daughter's experience may be different.

I have found that Miralax is awesome for constipation! Nice, gentle and gets the job done! :D
 
Thanks :)
She's had never ever trouble with constipation stuff..but good to know..she had an an absent seizure on Saturday night, recovered quick..Sunday afternoon doing a catnap..even though Im sure she slept ok that night.

Don't want this stuff bombing her out.

She's on 400mg twice daily as of Saturday..want to try & keep it at that...dr wants 2 tablets if seizures continue but I don't really want to.....

Time will tell.
:)
 
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