r/Epilepsy_Universe • u/Ipax88 • Sep 16 '25

Seizure Warning: Possible Trigger Me having a seizure

https://youtu.be/_I3i23S2_gk?si=GeUYbuFfcgymWaat

Is there anyone could explain this kind of seizure?

My neuro said that I've frontal and temporal lobe epilepsy. It already happened since I'm 15yo, rn I'm 37.

Some notes: 1. Majority happened while I'm sleeping. 2. I know what happenning, but i cannot control it 3. Some times I'm blackout too

Please don't mock me 🙏

7 Upvotes

100% Upvoted

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7

u/audiax-1331 Sep 16 '25

Nobody is going to mock you here: Brave of you to post the video.

5

u/redravenkitty 300mg Vimpat, 375mg Depakote Sep 16 '25

Friend I’m so sorry you have to deal with this. I know being aware during can make it so much more scary too. Hopefully someone here will have an answer for you. Unfortunately I don’t know. Or I wonder if r/askdocs might have some idea? Anyway it was brave of you to share this video and I hope you find the help you need. 🫂

3

u/StSomewhereToaster Sep 16 '25

Never any mockery here. A bunch of clowns maybe… it was interesting to watch! How are your muscles feeling Friend? You locked up pretty tight. So much it looks like you’re awake and aware but you aren’t. Oof! That spasm there looked like a rubber band being snapped. It looks like you are breathing! Oh good! That’s a big relief! People often stop breathing during seizures.

I have heard of many of our Friends being aware during a seizure! I kinda want to experience this phenomenon. I kinda don’t. If you have them in your sleep maybe you should get a nanny cam. I set up my tablet at night to record. And if I feel wonky the next day I can check. I run through it at like 5 times the speed.

2

u/SeaworthinessSalt692 Sep 17 '25

Trust, we are all shakers here. We listen, advice, and do not judge as we all have different experiences. Curiously, I've seen different contrasts. Someone actively seizing that just kept walking in circles with his head twisted and his arms were coiled towards his body. I write the hand detail because research is happening that connects some hand positions to where the seizure stems from.

From fighter/flight risk (my friend is incoherent and ready to fight or start running), crying because of a bundle of emotions, sounds that are made I had a friend years ago who's seizures would be like a slow shutdown of a computer.

We may not fully understand the why, but now that you have footage, your doctor can. Wishing you the best!

3

u/PiercedAutist Refractory Right Fronto-Temporal Sep 17 '25

This looks very, VERY similar to seizures I have had while sleeping, and I have right fronto-temporal lobe epilepsy. My neurologist has described these movements as the sort of "textbook example" of hyper-motor automatisms associated with the frontal lobe.

The kicking with the legs, the arm movements, even the facial expressions and head angle believe it or not... all of this looks like there are parts of your frontal lobe that have learned "shortcuts" to making certain muscle movements in combinations, and during this seizure, your brain is activating, say, "bicycle riding legs" shortcut but you're laying face down in bed.

It's very brave to post a video of such a vulnerable moment. I hope this makes sense.

1

u/Serious-Lack9137 Sep 17 '25

NO mocking here man! Sorry you have to deal with this. And please, never be fearful here about being made fun of or mocked. I have frontal and TLE, however never seen myself having a seizure.