Trileptal Experience/help Needed | MyEpilepsyTeam

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Trileptal Experience/help Needed
A MyEpilepsyTeam Member asked a question 💭

My 15 year old son has been on Trileptal (oxcarbazepine) for about 1 1/2 years. Latest dosage is 600mg AM and 900mg PM. It has worked well for controlling tonic-clonic nocturnal seizures. His pattern has been that we get his levels tested and if its below 24 or so we have to increase it because of breath-through seizures...probably due to growth. This has been going on every 4 months or so. Our latest increase was last October 2018. Levels were at 26. He was doing really well on it - not… read more

posted March 22, 2019
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A MyEpilepsyTeam Member

I had many side effects with trileptol, white spots in my mouth was one and my mouth tissue wear peeling.

posted March 24, 2019
A MyEpilepsyTeam Member

I hate when the drs. Just keep increasing the dose when he doesnt even know what causes my seizures and says that i am faking my seizures. I have been off my meds for 4 months and i now realize i am having seizures cause of lack of sleep.

posted March 24, 2019
A MyEpilepsyTeam Member

I was on trileptol, it kept me seizure free for several years. How ever I was having what I thought were dizzy spells, come to find out they were peti mal seizures. This was 4 years after being on trileptol. Finally boom, grand mal (while driving) I was switched to lamotrigon. I'm ok still getting smaller dizzy spells. God has given me this illness and I can't tell you how much it has transformed me. I have more compassion for others and I appreciate every single blessing around me. I see things from a different perspective. My eyes and my heart have opened up to so much. This is the cross God has given me and I will carry it. It's so hard but that is when I pray the hardest. I love you all and I'm praying for all of you.

posted March 23, 2019
A MyEpilepsyTeam Member

WOW! It was listed as a rare side effect. I am sorry you had that side effect but I will be glad if we can get rid of it with a med switch! He is really struggling to eat and brush his teeth. Thanks for posting.

posted March 25, 2019
A MyEpilepsyTeam Member

He may need to switch meds. Make sure that it is a gradual controlled thing though.

posted March 22, 2019

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