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Just started the epilepsy journey this March, I’m 53. My Neuro wants me to do the inpatient 3-5 day EEG, which is fine. I’m on 1500 mg keppra 2xday, and 600mg gabapentin 3xday. I have what I’d call focal aware seizures that I get stuck in a state of staring and then my left shoulder and abdominal muscles shake / contract and release rapidly, lasting 1-3 minutes. Sometimes on bad days it can last up to 10 min. That’s rare. I have days when I have clusters of them, some days with none. I’ve only… read more
@A MyEpilepsyTeam Member, I've been having that problem since I was first diagnosed 27 years ago. When I'm not taking medications I have a full blown tonic clonic.
However, after two surgeries, I'm having focal aware seizures, but they are getting worse and starting to manifest in ways that I haven't seen before.
Keppra took my seizures away completely for two months, then they came back with a vengeance. You can only take so much Keppra, you build an immunity to it, and that's it. I don't know if everyone else has that issue, but I do, and my seizures change. They started with Gran Mals, now I have daily partial/focal seizures. It's maddening.
It’s frustrating because it seems the docs are so quick to say that if keppra isn’t fully controlling the seizures, it’s not epilepsy. It doesn’t take a medical degree to do our own research on Keppra to see that it doesn’t work for everybody, nor for every kind of seizure. Keppra reduces seizure frequency by about half in 20 to 40% of people who take it.
So for me, I take 1500mg Keppra twice a day, 200mg Vimpat twice a day, 50mg topamax once a day, and just started taking 900mg gabapentin 3 times a day,...I was originally diagnosed with epileptic seizures in 2021, but they are now trying to say they are non epileptic seizures because the keppra is not controlling them, however, the keppra WAS controlling them when I was taking 1200mg twice a day...my neurologist decided to increase my dose after I mentioned I began having absent seizures which I had never had before and I had only had maybe 4 in an entire month, now my grandmal seizures and absent seizures are totally out of control (multiple seizures daily, every single day).
Sounds very frustrating and scary. Personally I've had muscle contractions during a tonic clonic, but in tonic clonic you are never conscious so I've never seen it myself which I guess is the only silver lining.
It's definitely good to check with an in patient EEG. An EEG would be able to show abnormalities in the brain due to an epileptic seizure.
Personally, I would love to avoid drugs, not just because the nasty side effects but its potential to cause harm to the liver. I've been on AED's for 27 years and counting.
A MyEpile...
