1. < Epilepsy & Seizures

Any experience w/ med: Oxcarbazepine (Oxtellar XR, Trileptal)?

Posted by debirwin @debirwin, Nov 12, 2019

I saw my doctor today. After continued seizures my doctor want to change my medicine from Vimpat 10mg x2 to Oxcarbazepine 600mg x2. Does anyone have experience with Oxcarbazepine? What are your pros and cons. Any side effects?

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mopedmolly | @mopedmolly | May 19, 2020

Daughter 12yo has switched over To trileptal, after topamax & keppra. Very little side effects—longest she went seizure free! We do have to bump up meds, now to 1200. Best wishes!

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Lisa | @mamaofiii | Jun 3, 2020

My doctor put me on oxycarbenzapine years ago after a car wreck and neck surgery for migraines. I wasn't having seizures. I asked if it was ok to take it if I didn't have seizures--would it make me have them? He said no. So I took it for several years (5 I think). I decided since the headaches had stopped I'd just quit taking it. BAD MISTAKE. I woke up one night with my husband and daughter standing over me. My husband was covered in blood. I had a grand-mal seizure. I bit my tongue so bad. Before I could get back in to see the doctor for that, my memory quit working. We'd went on huge family vacation and when we got back, I couldn't remember anything about it. Of course I was told I shouldn't have just quit taking it. I had to be weaned off gradually. Of course they put me back on it. I've actually been taking it for 16 years. My memory didn't improve and got to the point when we'd watch a tv show and it would go to a commercial, I forgot what we were watching. 90% of my seizures were in my sleep, but the doctors said that was actually good because I was safe at home in bed. I went to Mayo a few years back and they actually told me I was probably starting early onset dementia and the seizures were from the car wreck and a swimming accident when I was 15 and had a concussion. I'm not going to tell all that went on but I do want to say, DON'T stop taking it suddenly. BTW praise the Lord, I know it was Him, because they is no explanation for why but my memory has came back. I only have a few things I don't remember, but nothing like I was back in 2010.

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Teresa, Volunteer Mentor | @hopeful33250 | Jun 3, 2020
In reply to @mamaofiii "My doctor put me on oxycarbenzapine years ago after a car wreck and neck surgery for..." + (show)
@mamaofiii

My doctor put me on oxycarbenzapine years ago after a car wreck and neck surgery for migraines. I wasn't having seizures. I asked if it was ok to take it if I didn't have seizures--would it make me have them? He said no. So I took it for several years (5 I think). I decided since the headaches had stopped I'd just quit taking it. BAD MISTAKE. I woke up one night with my husband and daughter standing over me. My husband was covered in blood. I had a grand-mal seizure. I bit my tongue so bad. Before I could get back in to see the doctor for that, my memory quit working. We'd went on huge family vacation and when we got back, I couldn't remember anything about it. Of course I was told I shouldn't have just quit taking it. I had to be weaned off gradually. Of course they put me back on it. I've actually been taking it for 16 years. My memory didn't improve and got to the point when we'd watch a tv show and it would go to a commercial, I forgot what we were watching. 90% of my seizures were in my sleep, but the doctors said that was actually good because I was safe at home in bed. I went to Mayo a few years back and they actually told me I was probably starting early onset dementia and the seizures were from the car wreck and a swimming accident when I was 15 and had a concussion. I'm not going to tell all that went on but I do want to say, DON'T stop taking it suddenly. BTW praise the Lord, I know it was Him, because they is no explanation for why but my memory has came back. I only have a few things I don't remember, but nothing like I was back in 2010.

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Hello @mamaofiii,

I see that you just started posting on Mayo Connect, welcome! I appreciate you sharing your story with epilepsy and meds. Your experience may help others.

It sounds like you have a long history with epilepsy. What has helped you the most to adjust to this very unpredictable disorder?

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