neuro/epileptologist won't diagnose epilepsy
Hello, all! I recently (in May) went to UCSF and had an inpatient EEG done. So, for four days, I was in the hospital as they were checking for epilepsy.
My results were abnormal. Below, is what was stated in my EEG results.
[Day 1:
There were intermittent bursts of mild slowing.
at times with
shifting emphasis to left or right, consistent with
drowsiness.
Day 3:
Intermittent excessive delta/theta, both left and right, but more often on the left Example: right sided slowing and generalized slowing better on the left
Intermittent generalized sharpened slowing, at times with an appearance of poorly formed spike wave discharges Example: generalized slowing almost with appearance of poorly formed spike wave
IMPRESSION:
This continuous Video-EEG monitoring study was abnormal. Intermittent mild/moderate slowing, generalized and lateralized to left and right, a nonspecific finding of cerebral dystunction.]
My mother and sister have struggled with seizures in the past, and it was even suspected that my sister had childhood absence seizures but they never diagnosed her or put her on medication, they put her on ADHD medication instead.
However, I was never treated for them. Mine have been difficult to catch, and you can never really tell I'm having one unless I tell you. I've also had episodes that were close to a Grand Mal type seizure in the past, but again, they've never been able to catch them.
Medication like Topamax had my seizures decently under control for a bit but I had to stop taking it due to paraesthesia. Now, I'm on Trileptal and it isn't helping as much but there's still a decrease in intensity and frequency of my focal seizures.
If anyone can give me any advice on what to do next... I really want to figure out if these are epileptic but no epileptologist will give me a definitive explanation.
I have also had an overdose (klonopin and clonidine) in 2023 that could have definitely made the seizures worse. I never went to the ER, but I was in and out of consciousness for three days.
Again, I've had these seizures for as long as I can remember. They've just gotten worse. I've also had COVID and EBV and had a really bad illness when I was younger that caused me to get a spinal tap due to my symptoms resembling meningitis. They never found out what it was. My diagnosis right now is focal seizures, but not epilepsy.
Anyway, sorry if this is all over the place. Any advice will help!
P.s. I also consume cannabis daily. CBD doesn't help as much, but I've heard good things about it for epilepsy.