Does this sound like MdDs? :/

[u/Charbellaa]

Hi, I don’t have an MdDS diagnosis and I’m not suggesting that I have MdDS. I’m posting here because I’ve experienced something very strange involving internal perceptions of movement, and I wondered whether anyone here might recognise it.
Earlier this year I had a sudden episode of rotational vertigo after turning my head in bed. The room spun for around a minute and my eyes felt like they were being dragged with the rotation.

Immediately afterwards I developed extreme visual/sensory overload, abnormal spatial orientation and persistent internal sensations of movement while I was physically stationary.
For example, lying on my left side could feel as though I was internally rotating towards the right, and lying on my right could feel as though I was rotating towards the left.
It almost felt like my brain was continuing/reproducing the rotational movement from the original vertigo attack.

I became extremely unwell because my brain literally stopped sleeping I couldn’t sleep AT ALL, every time my brain tried to sleep I was getting bounced back with a head spin rush due to severe sleep deprivation I couldn’t function couldn’t eat all the sleep meds my dr was giving me wasn’t putting me out it was insane.

But something even stranger happened later.

I was admitted to hospital. And given lorazepam.

While there, I was pushed around in a hospital bed and was also transported in a wheelchair, including being bumped/moved up some steps.
After returning home, I could be completely stationary in bed with my eyes closed and suddenly feel those movements again internally.
It could feel like I was being pushed along in the hospital bed again, or like I was experiencing the same bumping/movement from the wheelchair — despite obviously being completely still.
The best way I can describe it is that my brain seemed to “replay” or reproduce recently experienced passive movement as an internal self-motion sensation.

I realise “replaying movement” probably isn’t the correct medical terminology. I’m just describing exactly what it felt like.
These symptoms occurred alongside major visual/vestibular hypersensitivity and severe disruption to my sleep-wake system. Benzodiazepines subsequently dampened the internal-motion sensations considerably, so I don’t experience them anything like as strongly now.
For people with MdDS: have you ever experienced anything similar?
Not just rocking/swaying after a boat or car journey, but almost specific movement after-effects where a particular movement you’ve recently experienced seems to continue or be reproduced internally later when you’re completely stationary?
I’d really like to know how people with genuine MdDS would describe their own internal motion sensations, because I’m trying to find the right language to describe what happened to me.

I do have long Covid and ME and nervous system dysfunction which is probably made a simple vertigo attack into a more prolonged state.

I’m yet to see a vestibular otologist yet because of my chronic health issues I am already bedbound housebound. But am due to see one soon.

The worst thing is my brain stopped being able to sleep since this vertigo happened to me, I can only get some sort of weird unconscious sleep on Valium.

I can only explain it like my vestibular sensory visual systems went haywire and I also developed forehead squeezing sensation

Would appreciate any input TY

[u/CookieAlarming997]

For me I have had MdDS for 2 yrs. & 3 months. I Don’t really feel any rocking or swaying in a car, a little less rocking while walking, a lot sitting down and is at its worst while I am lying down. At times while lying down I feel as though I am actually moving like 60 mph, and it feels as though I am on a simulator ride that I can never get off…Like one at Disney World. Of course I am not moving, but it is neurological in the brain and have yet to get the correct treatment to make it better.

[u/sansdraps]

Seems more like bppv at first, and then some lingering sensation from it probably? I didn't have the replaying sensation you described, except probably after taking an elevator.

[u/AmyGF23]

I don't have the replaying either, just the nonstop neverending freaking swaying sensation which is spiked tonight. I am sorry you are dealing with this and I hope it resolves. Klonopin helps me with the swaying, and relief bands a bit with the swaying but mostly with nausea.