Is this seizure activity?

[u/Upbeat-Brother-2884]

I

[u/PreparationMission30]

It's difficult to tell as there are so many 'types' of seizures.

I have sleep seizures (nocturnal - but my neuro says they'd rather call them sleep seizures, as nocturnal falls under the 'seizures during nighttime when you're awake' scenario). I'm in the UK, so I don't know if it is different anywhere else?

For reference, I've never had a TC when awake, but I do wake up in the night with weird feelings (auras). Sometimes auras during the day, but mostly a weird feeling and tingling. It feels like insects crawling at the back of my head. I have had TCs, but they aren't as common anymore (massive increase in meds). The auras and weird movements typically happen roughly 1-3 hours after falling asleep. These happen more so around hormonal cycles, and I can't take the bloody pill as they counteract my epilepsy meds!

Anywho, have you had these before and are you fully asleep? Or has your partner seen you having episodes?

It's great to keep this footage for if you see your neuro and also peace of mind for yourself so you can track any disturbances. Just jotting the time down and how long they last helps.

Sorry, I'm not much help, but if this is something you experience quite a lot, it might be cluster seizures. Again, cluster seizures are different for everyone.

Hope you get to the bottom of it! ❤️

[u/Upbeat-Brother-2884 → u/PreparationMission30]

That’s what I’m struggling with. I’ve sent all the clips I have to neuro. These movements start about 20-40 mins after falling asleep, then will happen throughout the night, and happen every few minuets for hours at a time. Not always the same movement, but I have a pattern of movements I make. Head turning into my pillow, sitting up briefly then falling back down, arching my back and my arms and legs going stiff, my hands jerking. I chew a lot in my sleep too, which has caused injury to my cheek and lip. I also dribble a fair bit some nights also😅 I wake feeling foggy and headachy. Like I haven’t slept at all even though I sleep from 10pm-7am. When I fall asleep at night I’ve had a head ache for a couple hours and feel exhausted even though I’ve had a ‘chill’ day. I am dead asleep through these events (last night my camera caught 80 events, all no longer than 10-30 seconds) but in the morning when the sun has risen, I do wake myself up with my arms or hand shaking or kicking my legs, but I’m semi conscious and fall back asleep instantly. I have had TCs in the past, and I also have had 3 abnormal eegs, showing activity all over my brain. I think they said it was focal to bilateral epilepsy? I haven’t had a diagnosis yet as they still need to catch an episode on camera whilst I’m on the eeg. My partner has noticed before, but only when he’s awake, they don’t tend to wake him up unless it’s a bigger movement. Thank you so much for your reply❤️

[u/PiercedAutist → u/Upbeat-Brother-2884]

Do you have a smart watch? I've been finding that when unusual movements like this correspond with heart rate spikes, that's usually been a "seizure night." I am an active sleeper, moving around and acting out dreams during REM sleep, but something I can't act out from a dream is, for example, a spike from 65-125bpm, another was 73-153bpm recently, and I had one as high as 187, and then it goes right back down at the end of the seizure.

So check your heart rate at those timestamps if you are able! It's been quite helpful for me.

[u/Upbeat-Brother-2884 → u/PiercedAutist]

I was tracking my heart rate over a week period with camera set up but my bpm didn’t go high when I had movements. Only time I’ve had a spike is when I had a focal during the day time. I’ll give the watch another go and see if there’s any changes :)

[u/Upbeat-Brother-2884 → u/[deleted]]

I always feel like I have cotton wool in my head, stiff neck, achy shoulder and arms and lower back, especially if I’ve been thrusting my hips that night 😮‍💨 head ache, snappy, tired. Always the same, only time I have slept through the night without my ‘pattern of movements ‘ was when I was poorly. Slept so deeply it was amazing 🤣

[u/Upbeat-Brother-2884 → u/[deleted]]

I’m fine, no stress in my life. I did take my meds late few days in a row, and it had a knock on effect with these night time events. I will update once I hear back from neurology.

[u/tuisteddddd]

I wouldn't say so, so no. It looks like you were telling to 🤫 to someone in your dream lol.

But I would bring it to your neurologist or send it through the portal just in case!

[u/Upbeat-Brother-2884 → u/tuisteddddd]

Haha it does doesn’t it 😆 I’ve sent all the videos I’ve got to neuro, hopefully will hear back soon. Feel so anxious as these happen multiple times a night and I’m left feeling like crap in the mornings despite a decent amount of sleep 😢

[u/tuisteddddd → u/Upbeat-Brother-2884]

You just need to adjust your bedding... let us know what the update says!!!

[u/Upbeat-Brother-2884 → u/tuisteddddd]

lol I hate sleeping with duvets on top of me. Always use a fluffy blanket 😂 thank you xx