Bizarre sensation of body moving

hi everyone. I seem to be in a horrible setback. I’m wondering if anyone has had the same sensation I had last night for several hours. It is very hard to describe, there is dizziness, but also this feeling when I move any part of my body, like it just wants to keep on moving and like I don’t have control over it. It did subside, but it was terrifying. Has anyone else had this? Thank you.

Yup, the past couple weeks I've been waking up several times during the night feeling like that.  But I've assumed it is related to the vertigo spells I've been experiencing during the day.  Very disturbing, in any case!

 

clearbluesky

Clearblue,  thank you so so so much for responding! I was looking at your history, and in some ways it’s frighteningly similar to mine…

Gutsy, I see similarities regarding occasional Klonopin use, which I guess can cause tolerance.  But I had covid last fall, and that can cause neurological symptoms too, so it's hard to distinguish what's what.  Do you have vertigo spells during the day?  If not, maybe the sensations you've experienced at night aren't vertigo at all.  I was just guessing!

 

clearbluesky

It is vertigo, all of it, according to doctor.

Got it.  Did the doctor say what's causing it? 

 

For me no doctors......neurologist, ENT, cardiologist or primary......have said there could be a connection to covid or benzo WD or even the ENT's "Epley manuever" that set off the vertigo to begin with.  It's been suggested I sign up for vertigo physical therapy to improve balance and/or take an over-the-counter medication such as Dramamine.  I'd rather not do either, so I've just been gutting it out.

 

The good news is, after a month or two I have been seeing possible improvement.  (Knock on wood!)  It may be coincidence, but days of spring yardwork, with a lot of up and down movement of cutting vines off trees and clearing out leaves, seems to cause very few vertigo spells and may even be therapeutic.  Every day I stand on one foot, then the other.....but general balance has never been a problem.  Occasionally I do vertigo treatment eye movement exercises found online.  They actually feel good! 

 

I've noticed the vertigo is worse if I've been laying down......like laying on the couch scrolling through my phone or watching TV.  So maybe it's worse at night when sleeping too?  Has that been your experience?  Has your doctor given you any diagnosis?

 

clearbluesky 

Clearblue, the ENT gave me a diagnosis of benign, positional vertigo. And he gave me a bunch of exercises to do at home, where I lay down quickly from one side to the other, but I’m afraid to do them. I did have a doctor do the Epley maneuver on me a few weeks ago with no dizziness when he did it or afterward. The ENT admitted that when it comes to dizziness, it’s never black-and-white, only gray. Ironically, I don’t have this problem when I lay down. Had another spell tonight after 10 days of more minor balance problems, it wasn’t horrible, but still scary as hell.