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

[Lday88 in reply to cgarff]

Thank you so much for this reply. Yes they say mine is PNES too. I never even thought of the nightly eeg as that's when I also seem to come alive this is something I will mention to my neuro and hopefully get this and see what it shows. I'm so pleased you are much better it's a long fight but we got this. .... And the rail is great for stopping me falling out of bed but the bruises from bashing into it keep me wondering " how the hell" lol

[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.

[Shimmyaway in reply to Littlecook]

Neuro physios advise doing some exercise during the day, ( initially it was 5 mins every hour for me ) to use up the excess body energy before bedtime to reduce the shaking during the night. This worked for me .. and the exercise frequency is now much reduced . as is the shaking ......lots of mat exercises on youtube.. better than the benzos.

[Lday88 in reply to Shimmyaway]

This is great as I'm waiting for my appointment with the neuro physio so it's something I can bring up if they don't. Thank you

[Shimmyaway in reply to Lday88]

Two names that are worth pursuing, in terms of the right kind of exercises for this condition, are Dr Arielle Schwartz .. a clinical psychologist and yoga teacher, based in Boulder, and Rebekah, running ' Body Illumination' who gives you sessions that specifically target nerve points and the vagus nerve (important for the parasympathetic nervous system) and can include shaking exercises to get rid of the excess, often pent up energy inside us caused by our overactive/hypersensitive nervous system. The experts call these somatic exercises. I only have to hear a mobile phone ring and I shake and/ or shout out..involuntarily. FND is such a weird condition and difficult to deal with.. rapidly becoming a DIY job!!

Hoping for some progress in your situation.

[Lday88 in reply to Littlecook]

I hope it stops for you too hunni