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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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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@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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I have been on keppra for four years and I think it is time to change meds.Any suggestions,a couple people said to try dilantin or depakote has anyone tried either.Thank you for any information on these drugs or any other drug anyone would recommend

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@1710dave

I have been on keppra for four years and I think it is time to change meds.Any suggestions,a couple people said to try dilantin or depakote has anyone tried either.Thank you for any information on these drugs or any other drug anyone would recommend

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I was only on Keppra for 5-6 months and had a bad rage episode at work. Made Dr. switch meds ….. Put me on Ozcarbezapine (Trileptal). Very low dose at first but just upped after a partial seizure 3 months ago. Fewer side effects and no more anger/rage.

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I was reading up on phenobarbitol,has anyone used it all the things I found people say it is really good and no side effects like all the other meds.This keppra is doing a lot of damage to my muscles and who knows what else very bad drug,so if anyone has used phenobarbitol would love to hear your experience with it. Thank you Dave

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@rtwoody300

I was only on Keppra for 5-6 months and had a bad rage episode at work. Made Dr. switch meds ….. Put me on Ozcarbezapine (Trileptal). Very low dose at first but just upped after a partial seizure 3 months ago. Fewer side effects and no more anger/rage.

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My son had similar response to keppra and was not ever able to get to therapeutic dose because of side effects. We transition to trileptal and worked great for mood & seizures. No side effects for him.

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@1710dave

I have been on keppra for four years and I think it is time to change meds.Any suggestions,a couple people said to try dilantin or depakote has anyone tried either.Thank you for any information on these drugs or any other drug anyone would recommend

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@1710david
Hello David,
I have been on Dilantin for 25 years, Phenobarbital for 53 years and Depakote not sure how long I took that. The only one of these drugs that was effective for me was the Phenobarbital. It stopped my Focal Aware seizures but had no effect on the Tonic-Clonic or Focal Impaired seizures. My neurologist believes that it was the Dilantin that caused my peripheral neuropathy. Dilantin is a nonlinear drug and for me it became unstable regardless of the dose I took what day or time my blood level was either low or toxic, it was never in the normal 10 to 20 range and I had to discontinue it. In a linear drug if you’re taking two pills and have a blood level of five and the doctor wanted it at 10 you simply double the number of pills you’re taking but in nonlinear drugs it doesn’t necessarily work that way. Even if you increase the dose your blood level can decrease or go to extreme levels and vice versa. If you start taking Dilantin you’ll need to go to the lab and have your blood levels checked and don’t let any doctor tell you that you only need it checked once a year after that is absolutely and categorically incorrect. I once had a neurologist who told me that and refused to give me a lab slip so I went to my primary care doctor and on the way home I had a seizure. My blood level should have been 14 but it was 2.9. so much for once a year testing.

As you’re probably well aware epilepsy is a very individualized condition and obviously what works for one doesn’t work for another.

A man’s fiancé from Africa once wrote to me asking if I had any suggestions on medications to control her fiancé‘s seizures. I suggested that her fiancé ask his Neurologist about using phenobarbital as monotherapy or as a second line medication. That gentleman I am happy to report has been seizure free since his doctor started him on the Phenobarbital.

One thing you might suggest to your Neurologist is Pharmacogenomic testing. Here is a short video link from Mayo Clinic,

Good luck with finding the correct medication and the correct dose to control your seizures.
Jake

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I was on Dilantin for many years until I found out it could cause osteopenia and osteoporosis. I then switched to Lamictal. Both have never brought my seizures under control. One doctor said there that would probably not be a drug to help me as my problem was caused by hitting my head. Another said I didn't have vertigo (mine was positional vertigo) but peripheral neuropathy caused by my taking the drugs. I don't think so.

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