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DiscussionFocal awareness seizures or auras?
Epilepsy & Seizures | Last Active: Oct 22 10:00am | Replies (54)Comment receiving replies
Replies to "I have focal aware seizures in my right temporl lobe. I have tried the following medications:..."
Hi @lzbthtyler
I also have temporal lobe epilepsy, but on the left side of my brain. My seizures are mostly focal - either auras or impaired awareness seizures - though I've also had a few tonic-clonic ones.
I've tried many different medications that either didn't control my seizures or had terrible side effects: Lacosamide, Lamotrigine, Carbamazepine, Gabapentin, Oxcarbazepine, and full CBD. Later, I was diagnosed with mesial sclerosis in my temporal lobe, which is a type of temporal lobe epilepsy that's more resistant to medications - which explained my struggles with finding effective treatment. Surgery was even considered, but unlike you, who has already had LITT surgery, it was ruled out for me since the left side is my dominant brain hemisphere.
Today, I'm on Keppra and have been seizure-free for 7 months - the longest period since my diagnosis in 2019! I'm definitely celebrating that achievement! I started on 500 mg twice daily and experienced some very difficult side effects initially. However, through my doctor's careful dose adjustments and my own patience with the process, my side effects became manageable, and the benefits now far outweigh the drawbacks. Please don't lose hope - finding the right medication and dose can take time, but it's possible!
How long have you been on Xcopri, and how long at each dose (300 mg and 250 mg)?
Your mention of seizures occurring in the first or last week of each month is really interesting. Have you noticed any patterns or changes during those specific times? Many women experience catamenial seizures, which are triggered by hormonal fluctuations during their menstrual cycle.
Chris
I tried several different seizures drugs with little or no relief. I went though 6 neurologists until one suggested I try using both lamicatal and trileptal. They are similar but not identical drugs and, for whatever reason, the combination of the two worked for me.
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Hi, @lzbthtyler - I moved your post here so that you could chat with others talking about focal awareness seizures, such as @santosha @methel @kelspal @adoptivemother and others.
You mentioned upping your dose of cenobamate (Xcopri) but that it made you extremely sleepy and that you felt unwell. Is the 250 mg of helpful to you at all? When were you originally diagnosed?