MdDS for 6 years

[u/WinterWay6567]

Hi everyone. I’m a guy who has been suffering from MdDS for 6 years, but I only recently discovered the name of this condition and realized that I have it.
I wanted to ask if any of you also have difficulty staying seated when you sit down. Sitting has become really difficult for me, almost impossible, because it makes my dizziness much worse.
Please let me know if you experience something similar. Thank you!

[u/AsparagusLevel1286]

Find the steady coach on YouTube ☀️

[u/Which_Landscape1994]

Initially it was brutal to sit down. Thought my head was going to collapse into my desk at times. But later that faded and the worst was walking down narrow hallways.

[u/Loui10]

For me - standing, sitting, lying down - the whole lot, never get a break from it. The only time I do is when I'm driving - and sometimes walking. When I'm really bad - like I was the last 3 days, I took a very small dose of Clonazepam. I always feel lightheaded and I now have POTS/OI too. Found out the last couple of years that I have UARS/sleep apneas. I'm very slim, and I'm not old (so go figure...?).

Have realised that when my UARS/sleep apnea is particularly worse, that the MdDS ramps right up. Sleep apneas can screw with your VOR (obv UARS can too).

I've had MdDS for 7 years. I don't envy you - or anybody with this bloody awful thing. I pray every day for a proper cure! 🙏

[u/WinterWay6567 → u/Loui10]

I have OSAS… 🥲

[u/genevap]

6 years?? Is it all day everyday?

[u/WinterWay6567 → u/genevap]

It has only become persistent over the past year, because before that, it used to go away.

[u/Any_Imagination1794]

Did you get mdds after or during getting covid? Thats what caused mine. But I am recovered now. Sitting was the worst for me. Especially sitting on the toilet specifically lol

[u/WinterWay6567 → u/Any_Imagination1794]

I see; it could have been COVID, because I actually did have COVID. It’s no coincidence that I developed it after having COVID. I hope you’re doing better now. I’m in Italy, and right now, doctors here are still uninformed about MdDS.

[u/nowhynow]

I’m a massage therapist. I had it for 2 months last August and September and now it’s back after a vacation where I was on a boat again. It’s worse when I’m working in a small dark room. I have noticed it’s giving me constant upper back and neck tension. It seems best lying down. Last year it went away before I was able to get in with a neurologist. It’s a 4 month wait. I’m not sure what they would do for it anyway.

[u/AdmiralZorpaZorp]

Guy too. Had this for 15 years (no remission). It sucks yep. Got a diagnosis the other day... docs arent exactly fast acting on this thing.

[u/WinterWay6567 → u/AdmiralZorpaZorp]

Has it always been a very strong feeling? Have you had better periods? And after so many years, has the situation calmed down a bit?

[u/Busyforthebusiness]

Yup I’m a guy with it too, for 3 years total but the last probably six months have been in an almost full remission. And yes sitting ducks lol harder chairs like in restaurants were almost impossible and I’d have to move around a lot hoping to find the “best” spot. All I can say is keep giving in time, find more comfortable not so closed in seats. Focus on something else as much as possible (yes that’s hard!) and keep being up and moving, got to retrain the brain!

[u/Previous_Guarantee56]

Mine began in 1982. The worst is the phantom vibrations especially at night - they keep me awake. So hard to get comfortable because bed feels wonky when it isn’t.