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?

Welcome to Connect, @jo1016. Thank you for sharing your son’s history – he’s so young, and I can imagine it must be quite scary and stressful! Oxcarbazepine is in a class of medications called anticonvulsants. It works by decreasing abnormal electrical activity in the brain. You may also appreciate this additional information about Trileptal: https://medlineplus.gov/druginfo/meds/a601245.html

May I ask if your son is ‘aware’ when he has an episode? I read that there are 2 types of focal seizures: simple partial and complex partial seizures. Is this something that he may outgrow with age, and with the help of medications?

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@kanaazpereira

Welcome to Connect, @jo1016. Thank you for sharing your son’s history – he’s so young, and I can imagine it must be quite scary and stressful! Oxcarbazepine is in a class of medications called anticonvulsants. It works by decreasing abnormal electrical activity in the brain. You may also appreciate this additional information about Trileptal: https://medlineplus.gov/druginfo/meds/a601245.html

May I ask if your son is ‘aware’ when he has an episode? I read that there are 2 types of focal seizures: simple partial and complex partial seizures. Is this something that he may outgrow with age, and with the help of medications?

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I am aware of how the medication works as I am in the healthcare field myself. They are complex partial and they say he can outgrow them.

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oxcarbazepine caused my sodium level to drop to 118, I had to be admitted. It took two days of continuous IV to bring the sodium level back tk normal. The ER and neurologist explained this is a likely side effect of Oxcarb.

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My husband is prescibed Clonazapam .5 sublingual for a rescue med. So far he has dodged 2 seizures with it. Before he was to take .5 Ativan, one or two tabs. That worked once, and later was replaced by the newer Clonzapam. I have been listening to webinars by Epilepsy Foundation. They had an excellent one that was about rescue medications. It is available to view after the webinar too. Google Epilepsy.com webinars. The rescue med was October 11,2019

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I was just diagnosed with epilepsy last year. I was first prescribed Keppra. While it kept my seizures from happening it made me extremely irratable….so bad I blew up at work. My Dr. quickly changed me to Oxcarbenzapine…….huge change for me. And still no !it's seizures so far. People have told me the difference the new meds have made on my attitude. Wish they would have started me on this to begin with!!!! Good luck.

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@rtwoody300

I was just diagnosed with epilepsy last year. I was first prescribed Keppra. While it kept my seizures from happening it made me extremely irratable….so bad I blew up at work. My Dr. quickly changed me to Oxcarbenzapine…….huge change for me. And still no !it's seizures so far. People have told me the difference the new meds have made on my attitude. Wish they would have started me on this to begin with!!!! Good luck.

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@rtwoody300
Hi there,
Welcome to Connect. I assume you have Focal Epilepsy? Keppra is notorious for causing mood issues. Did your Zeeg show any activity? Did you have the usual side effects of fatigue and memory problems or any other side effects? Do you have any side effects currently? Oxcarbazepine may cause low sodium. Did your doctor mention that? Did he order a sodium level or a metabolic panel or suggest how often it should be done. You need to be mindful of this because the effects of low sodium can be extremely serious. Oxcarbazepine is metabolized in the liver so you should have a liver panel done at least once a year. Numerous anticonvulsants lower vitamin D levels, Oxcarbazepine among them, I’d suggest you have your vitamin D level checked and ask your doctor about taking a supplement.I’ve taken seizure meds for 52 years and now take 2,000Iu of Vit D, down from 6 000. It's great to hear someone's seizures are controlled, especially with monotherapy.
take care,
Jake

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@jakedduck1

@rtwoody300
Hi there,
Welcome to Connect. I assume you have Focal Epilepsy? Keppra is notorious for causing mood issues. Did your Zeeg show any activity? Did you have the usual side effects of fatigue and memory problems or any other side effects? Do you have any side effects currently? Oxcarbazepine may cause low sodium. Did your doctor mention that? Did he order a sodium level or a metabolic panel or suggest how often it should be done. You need to be mindful of this because the effects of low sodium can be extremely serious. Oxcarbazepine is metabolized in the liver so you should have a liver panel done at least once a year. Numerous anticonvulsants lower vitamin D levels, Oxcarbazepine among them, I’d suggest you have your vitamin D level checked and ask your doctor about taking a supplement.I’ve taken seizure meds for 52 years and now take 2,000Iu of Vit D, down from 6 000. It's great to hear someone's seizures are controlled, especially with monotherapy.
take care,
Jake

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Only had 3 seizures. First I had know idea…..woke up in the middle of the night and every muscle in my body was cramped. Second seizure wife actually thought I was having a stroke…..ambulance ride to hospital and 8 hours in E.R. ….. Dr. decided it may have just been exhaustion. Third seizure was full tonic clonic….threw myself out of bed…..another ambulance ride and better E.R. Dr. who realized right away what happened. That's when I was out on Keppra.

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@rtwoody300
Hi again,
Good quality sleep is absolutely essential in people with epilepsy. If the only symptom you told the doctor about where the cramps I would be leery of that diagnosis. People with nocturnal seizures often wake up at night or in the morning, Sometimes their body aches and they have cramps, or various other symptoms which are a pretty good indication that a seizure occurred that night.Are your seizures still controlled with one medication. You might want to get a Medic-Alert bracelet just in case here’s their website,
https://www.medicalert.org/
Take care of yourself,
Jake

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HI, @debirwin – wondering about whether you ended up changing to the oxcarbazepine from the vimpat?

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@lisalucier

HI, @debirwin – wondering about whether you ended up changing to the oxcarbazepine from the vimpat?

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Never on Vimpat. Just the Keppra. Never even saw Dr. about switching. Called office and told him about side effect symptoms I was having and they immediately switched to Oxcarbenzapine. Only been about 6 months but so far so good. Very pleased with results and no side effects.

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My daughter (7) takes the oxtellar which is the extended release. I found that she has less highs and lows w the extended compared to when she took trileptal 2x’s a day.

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@mmas

My daughter (7) takes the oxtellar which is the extended release. I found that she has less highs and lows w the extended compared to when she took trileptal 2x’s a day.

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My son started focal seizures at 17 yrs. He started on keppra & was bad side effects. We transition to trileptal and it worked for him.
Best of luck,
Jennifer

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