I have seizures sometimes none for a few months and then I can have 4

Rusty, have you had an EEG study? If you say "Yes", did the EEG study show nothing wrong or something wrong?

I did have an EEG, and nothing showed up. I also had an MRI AND nothing showed there except for my meningioma. They said that had nothing to do with the seizures. They now want to do a 48-hour EEG at my home.
They have put me on 2 meds which are Xcopri and the other one is Levetiracetam. They seem to have cut down on the amount of seizures but I still have them

Hi @rustyjones,
Welcome to our Epilepsy group here at Connect!
I can really relate to what you're going through. For decades, I lived with undiagnosed epilepsy — like you, my EEGs and MRIs also showed nothing. But then, in 2019, I was asked to do an EEG with sleep deprivation, which finally showed epileptiform activity in my left temporal lobe. I was then asked to do a specific MRI, which showed a small sclerosis in my left hippocampus.
One thing that stood out to me in your post: you mentioned feeling alert during your seizures, but your wife has seen you lose consciousness. Reading your description — that sense of something "coming on" while you're still fully conscious, needing to find a chair right away, your legs bouncing, then the fall — it sounds like you may be experiencing an aura, when one is still aware and responsive, evolving to a stronger seizure when awareness gets impaired. That's just an observation from my own experience, since my seizures always start with an aura, evolving to stronger seizures, and it might be worth describing your experience in exactly those terms to your doctor, if you haven't already.
If it's ever possible, having your wife film your seizures — even just with a phone — can be incredibly helpful for your doctor. It could help clarify exactly what's happening during the episode, including that gap between what you feel and what your wife observes.
I'm also glad Xcopri and Levetiracetam have already cut down your seizure frequency, even if they haven't stopped them completely. Getting a clearer diagnosis will help your doctor find an adequate treatment that hopefully stops them for good.
In your previous EEGs, were you asked to stay awake the night before, since sleep deprivation is actually one of the most common seizure triggers? Do you know if sleep deprivation will be part of this upcoming 48-hour EEG at home? And I'm also curious, which kind of doctor has been helping you so far, a general neurologist or someone who specializes specifically in epilepsy?
Looking forward to hearing from you about your 48-hour EEG experience.
Chris

@rustyjones
There's actually an interesting interview with a doctor whose epilepsy went undiagnosed for a decade. Here's the link if you're interested:
- Despite Medical Training, A Young Doctor’s Epilepsy Goes Undiagnosed for a Decade
Cure Epilepsy

Hi @rustyjones
Just checking in to know how you have been doing. Were you able to do your 48-hour EEG at home? If so, I'd love to hear how it went.
Chris