Falling out of bed

[Lday88]

Hi,Does anyone else have tremors and seizures during their sleep that causes them to fall out of bed? I now have to have bed rails as I was getting really hurt from falling and wondered if anyone else has had this happen?

Thanks 😊

[cgarff]

Oh my gosh yes. This happened to me so many times for years. I was fortunate to have my husband grab me many times, but there were tons of times he wasn't there. I had to start keeping a pillow by my bed to land on.

My worst times with the movements and seizures happened right after I went to bed and in the middle of the night. I called it my nightly gymnastics. Unfortunately I ended up landing on my head, not my feet every time. Not quite the perfect 10. Lol.

I can say that finding the right meds from the right neurologist, and finding the right therapist has helped greatly. I have only had it happen once in the last few years now. Granted this has been going on for 15 3/4 years for me.

I was always told that the seizures I was having with the movements FND was only PNES even from The NIH here in the US.. till one of my neurologists actually listened to me. When they tried to monitor me during the day, I didn't have seizure issues. But at night, that's when it really came alive.

So she asked if anyone had ever done a 3 day V- EEG. I told her no. They finally did one on me at home. My answer came back, I was not only having pnes (no spikes) when I thought I was having them, epileptic seizures (spikes) other times whrn I thought I was having them, and (spikes) in the brain when I didn't know I was having them. Yet I had never had seizures before all this crap happened.

I even have dropped and fallen in the shower many, many times.

So getting the right treatment has made a world of difference. Like I said I have only had it happen once on the last few years, but this is not over yet. But I keep fighting.

Don't give up. I hope the rails help you. I truly considered it many times.

Best of luck to you, you are not alone!

C

[Littlecook]

I've had the shacking in bed but not to the point of falling out off bed not as yet , hope this stops for you quickly.