← Return to Any experience w/ med: Oxcarbazepine (Oxtellar XR, Trileptal)?
DiscussionAny experience w/ med: Oxcarbazepine (Oxtellar XR, Trileptal)?
Epilepsy & Seizures | Last Active: Jun 3, 2020 | Replies (33)Comment receiving replies
Replies to "I have been on keppra for four years and I think it is time to change..."
@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
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.