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

Posted by jgu @jgu, May 25, 2025

Does anyone have the same thing? My wife told me that I scream, then open my eyes, I then went back to sleep. 5-10 minutes later, I woke up - not remember anything just happened 5-10 min ago. My Neurologist told us this is might be forcal seizure. He gave me the Levetiracetam. It has been more than 20 days after I took the medication. No reduction in my seizure events. Does anyone experience the same? What medication you take? My Neurologist ordered the 72-hour EEG, and MRI for the brain with, and without contrast. The tests will be done in two weeks.

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Profile picture for Lisa Lucier, Moderator @lisalucier

@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?

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My pleasure @lisalucier !
When my smartwatch shows I didn't get enough deep sleep, I often take my morning medication and return to bed for a 30-minute yoga nidra practice, which can provide the restorative benefits of up to 3 hours of deep sleep. Yoga nidra is wonderfully simple – you just have to lie on your back and listen to guidance while focusing on different parts of your body. This practice gives me deep relaxation and leaves me feeling energized afterward. On those days, I usually also take a good nap after lunch.
When I notice my stress levels rising on my watch, I stop what I'm doing and either practice yoga nidra or do some yoga breathing exercises to calm myself down. Exercise is also fantastic for stress relief! However, when I don't have someone with me and feel uncertain about my seizure control, I prefer staying home with practices I can do safely there rather than going out to exercise.
Lisa, as you know by now, I'm a big fan of yoga. But this is certainly not the only way to manage stress, find relaxation, and compensate for insufficient deep sleep – everyone finds their effective methods that work best for them. If anyone is curious about yoga nidra or would like to know more about my preferred practices, I'm happy to share more details.
I'd love to hear from other members about their strategies for managing seizure triggers. What precautions or techniques work best for you?
Thank you!
Chris

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Hi @jgu
I haven't heard from you in a while – hope all is well! How have you been?
Chris

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Profile picture for Chris Gautier, Volunteer Mentor @santosha

Hi @jgu
I haven't heard from you in a while – hope all is well! How have you been?
Chris

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Hi Chris,

Thanks so much for your care! I am doing much better. Though my MRI, and EEG did not show what cause my epilepsy, after change the medication to Zonisamide, for about a month, I only had one seizure. And the side effects are managable. Before was almost once a day. Hopefully I can slowly get back to my normal life.
Thanks so much for this group - You have provided a lot of thoughtful information. Now reading the posts on this group become my routine. I learned a lot from you all. I am not cured, but I see hope. Thank you all!

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Profile picture for jgu @jgu

Hi Chris,

Thanks so much for your care! I am doing much better. Though my MRI, and EEG did not show what cause my epilepsy, after change the medication to Zonisamide, for about a month, I only had one seizure. And the side effects are managable. Before was almost once a day. Hopefully I can slowly get back to my normal life.
Thanks so much for this group - You have provided a lot of thoughtful information. Now reading the posts on this group become my routine. I learned a lot from you all. I am not cured, but I see hope. Thank you all!

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Hi @jgu
What wonderful news! I'm so happy to hear about your significant seizure reduction - a victory and something to celebrate.
It sounds like Zonisamide is proving much more effective than Keppra was for you. I'm hopeful that you'll soon achieve complete seizure control.
I'm also delighted to hear that reading our group's posts has become part of your routine. Connecting with others who truly understand the epilepsy journey is so meaningful and has been incredibly helpful for me as well.
Has your doctor scheduled any follow-up tests or monitoring?
Chris

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Profile picture for Chris Gautier, Volunteer Mentor @santosha

Hi @jgu
What wonderful news! I'm so happy to hear about your significant seizure reduction - a victory and something to celebrate.
It sounds like Zonisamide is proving much more effective than Keppra was for you. I'm hopeful that you'll soon achieve complete seizure control.
I'm also delighted to hear that reading our group's posts has become part of your routine. Connecting with others who truly understand the epilepsy journey is so meaningful and has been incredibly helpful for me as well.
Has your doctor scheduled any follow-up tests or monitoring?
Chris

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Hi Chris,
I have monthly apportments with my doctor. I will ask for follow-up tests or monitor in the next visit. Thanks for reminding me :-)!

Jgu

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Profile picture for jgu @jgu

Hi Chris,
I have monthly apportments with my doctor. I will ask for follow-up tests or monitor in the next visit. Thanks for reminding me :-)!

Jgu

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Hi @jgun
My pleasure!
It's nice to hear that your doctor is available to see you monthly at this stage of your treatment. That kind of regular monitoring shows your doctor's care for you.
Chris

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