More than 90% of my seizure happened when I was sleep

Hi @Igu
In your recent post in another discussion - https://connect.mayoclinic.org/comment/1331610/- you mentioned having normal MRI and EEG results, despite experiencing 3-4 seizures during your 72-hour EEG monitoring. You also said that Keppra hasn't been effective in reducing your seizures.
This makes me wonder if you are not experiencing PNES Seizures (Psychogenic Non-Epileptic Seizures). PNES episodes can look very similar to epileptic seizures, but don't show the typical electrical brain activity on EEG, which could explain why your EEGs appeared normal even during your seizures. Additionally, PNES typically don't respond to traditional anti-epileptic medications like Keppra.
I'm sharing some resources that might be helpful:
From the Epilepsy Foundation:
https://www.epilepsy.com/diagnosis/imitators-epilepsy/psychogenic-nonepileptic-seizures
Current PNES discussion in our group:
https://connect.mayoclinic.org/comment/1288235/
Of course, I'm not a medical professional, but I just thought these resources might give you some additional information to discuss with your epileptologist.
After reviewing those resources, do any of the PNES symptoms or descriptions match what you've been experiencing?
Wishing you a nice weekend!
Chris

Hi Chris,
Thanks again for your suggestions. Most of my seizures happened during my sleep - eye closed. The three ones that happened when I was awake - my eyes were opened. Also the seizures were fairly short - less than 1 min. I do not have much body jerking, just cream, my heart rate goes up to more than 100 beats/min, and my blood oxygen level goes down - less than 95%. I knew these because initially we thought my symptum is due to the the sleep apnea. Till the same symptum happened when I was a wake. I will ask my doctor about PNES in my next appointment. Thank you again.
Jgu

Hi James,
Sorry that I did not see your posting till today. All the notices went to my spam folder. To answer your questions, my seizures happens mostly when I was sleeping - seems tha time when I about to wake up. My wife told me that I normally will turn, then start scream, my body does not move much - no jerking. This is very short - less than 1 min, then I open my eyes, confused, then went back to sleep. Since these symptum, my short-term memory declined. Initialy we thought it was sleep apnea.

@jgu
Good Morning Igu,
In a great post of @jakedduck1, he mentions some differences between PNES and epileptic seizures that I copy here:
Typically, patients with epilepsy have their eyes open during a seizure; in contrast, those having psychogenic episodes usually have their eyes closed.
Patients experiencing psychogenic seizures often deal with negative emotions before and during the episode, finding it challenging to process their feelings, which can lead to crying
The shaking movements in epileptic seizures are generally synchronous, whereas psychogenic episodes often lack this synchronization.
https://connect.mayoclinic.org/comment/1328829/
Please do check this possibility with your doctor in your next appointment. Do you already have a date set for this appointment in July?
All my best to you!
Chris

@jakedduck1 @santosha I use the StressWatch app and it showed what I already knew. While I have daytime seizures, I have always suspected I have far more seizures at night. The StressWatch app showed me that I have high stress events happening nearly every night between midnight till around 3:00 AM. What is interesting is I oftentimes wake up sweating profusely around 2-3 AM, but I had no idea that it might be from seizure activity. The StressWatch app isn't an EEG, but it's interesting nonetheless. I go to Mayo in August for my 5-day EEG, which hopefully will give them more data to analyze.

@dannoyes
Do you ever bite your tongue at night or during the day. Does anyone witness your seizures?
Take care,
Jake

I do bite my tongue and the sides of my mouth. My nighttime seizures have awakened my wife at times, and I have fallen out of bed. My Mayo neurologists want videos, but by time my wife wakes up and gets out of bed they are over.

@dannoyes
Hi dan,
After you bite your tongue and cheek/s can you take your pills or eat? I had to use lidocaine spray to numb the area before I could take my pills. The lidocaine sure helps but it doesn't last long. My doctor said “use it sparingly” which was hard to do.
Take care,
Jake

@dannoyes
Hi Dan,
It's incredible how technology can help validate some of our instincts about what's happening with our bodies. While those watches don't replace tests and/or medical guidance, they can provide insights into our condition and give our doctors additional data to work with. I'm so glad to hear that your StressWatch has given you this important insight!!!
I use a Garmin watch that monitors my sleep, heart rate, stress levels, and other metrics. I'm still learning to use all its features, but it has already provided both my doctor and me with valuable data and has been helping me with my trigger management. For instance, when my watch shows I had poor deep sleep – a well-known trigger for my seizures – I take extra precautions.
Your message actually reminded me that I need to update my Excel spreadsheet with recent sleep data from my watch. I have a doctor's appointment next week and want to show him how my sleep has improved since some changes in my medication. Thank you for this reminder!!!
What type of seizures do you think you're having during sleep? Are you able to fall back asleep easily after these nocturnal seizures? Have you noticed any heart rate changes during those nighttime episodes, or do you see patterns with higher stress levels during the day before those night seizures occur?
I hope your upcoming 5-day EEG at Mayo provides you and your doctor with comprehensive answers! You might want to share your StressWatch findings with the EEG team
Best of luck with your Mayo EEG in August!!!
Chris

@santosha - you mentioned that as an example of your use of your smart watch, when it shows you had poor deep sleep – a well-known trigger for your seizures – you take extra precautions.

Will you share more about what extra precautions you take in those instances?