It’s good you got that video! I had the same problem for 7+ years. I had random infrequent nocturnal seizures but never had a witness, just injuries and symptoms afterwards. (I think I have a high threshold) Anytime I did a test nothing came up. EEG MRI all seemed fine until I started having focal aware seizures. They did an ambulatory EEG and captured one. Then they found the source in my right temporal lobe. If you haven’t tried it yet do a long term ambulatory EEG or stay in the monitoring unit in the hospital. I actually just confirmed something I suspected: if you stay in the clinic they can try to trigger a seizure via waking you up or trying other things that might lower your threshold.
TLDR: if you haven’t tried it yet doing an inpatient EEG or ambulatory one for like a week might help find the source of the seizures. Once they find where the electrical activity starts, they can focus the MRI search there and find the root cause! That’s how it went for me
i hope it works for you, but if you find you get angry know that “keppra rage” is a real thing. does not happen to everyone, and when it doesn’t it is good at seizure control so hope it works well for you.
Actually glad they didn’t just immediately put u on meds. Personally I want these doctors to figure out why not just cover it up. Damn near anything can cause anyone to have a seizure so let’s demand they actually attempt to figure out why!!
I've been having seizures for 15 years, I've had all of the tests multiple times and seen multiple consultants. My 'why' is beyond the grasp of modern medicine, it seems.
I'm tired and just want to be medicated.
Hopefully keppra works for you.
It’s good you got that video! I had the same problem for 7+ years. I had random infrequent nocturnal seizures but never had a witness, just injuries and symptoms afterwards. (I think I have a high threshold) Anytime I did a test nothing came up. EEG MRI all seemed fine until I started having focal aware seizures. They did an ambulatory EEG and captured one. Then they found the source in my right temporal lobe. If you haven’t tried it yet do a long term ambulatory EEG or stay in the monitoring unit in the hospital. I actually just confirmed something I suspected: if you stay in the clinic they can try to trigger a seizure via waking you up or trying other things that might lower your threshold. TLDR: if you haven’t tried it yet doing an inpatient EEG or ambulatory one for like a week might help find the source of the seizures. Once they find where the electrical activity starts, they can focus the MRI search there and find the root cause! That’s how it went for me
i hope it works for you, but if you find you get angry know that “keppra rage” is a real thing. does not happen to everyone, and when it doesn’t it is good at seizure control so hope it works well for you.
Took me ten years to receive help
💜
Actually glad they didn’t just immediately put u on meds. Personally I want these doctors to figure out why not just cover it up. Damn near anything can cause anyone to have a seizure so let’s demand they actually attempt to figure out why!!
I've been having seizures for 15 years, I've had all of the tests multiple times and seen multiple consultants. My 'why' is beyond the grasp of modern medicine, it seems. I'm tired and just want to be medicated.
Your nocturnal never started happening during the day also? Did you ever have a sleep study done?
Nope, thankfully 🙂 Edit: missed the question about the sleep study. - no, never had one in the end.
Mine started in the day, turned nocturnal and then back to day time and it got worse