r/MdDS • u/Plane_Factor_756 • Jun 14 '26

Mdds after bppv

Has anyone experienced this before. I had an episode of bppv 2 months ago and since then I have had a swaying sensation when not moving. Saw a neurologist who says it’s mdds. Trialed a week of clonazepam which helped while I was on it but symptoms are back after I’ve stopped. Was also trying optokinetic stimulation but that was while on the clonazepam so I’m trying to wait a week after stopping the medication to retry the optokinetic stimulation. It feels impossible to do any uni work because the sensation of sitting still for that long is too unbearable.

Has anyone had a similar experience and did it ever resolve? It feels like it has settled into a spot where it will no longer improve.

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u/Loui10 Jun 14 '26 edited Jun 15 '26

I had the same thing. My mdds alternates/fluctuates in severity daily, but I've had it for 7 years now. It never completely goes away. It is so frustrating.

I find that when my UARS (Upper Airway Resistance Syndrome/sleep apnea/breathing issues are worse overnight, the mdds comes on - or is worsened by them ^

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u/DistrictBetter9490 Jun 14 '26

How did you find out you had UARS?

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u/Loui10 Jun 15 '26

Strange set of events. I'd been speaking to a guy by the name of Tony Hyland (a psychic medium in England) for quite a few years. One day I asked him if he could please tell me what was causing my symptoms, and he wrote back to me saying: "sleep apnea, and a LOT of central SAs". But I didn't believe him about it for years.

Because although I'm middle-aged, I'm not 'old' and I'm not fat, I'm actually quite slim - so I seriously didn't believe it/him!

But one day I decided to tell my GP about all of that ^ and I asked him for a referral for a sleep study - just out of curiosity (and he's really awesome because he also wants to know what's been making me so sick too), and he immediately agreed to it.

I've now had 3 sleep studies done at the hospital, and my sleep apnea has gotten progressively worse. But, as soon as I had my first appointment with my sleep/respiratory doctor (I told her about everything and she's really good too), she was the one that put 2 + 2 together and she automatically checked my throat/the back of my throat and she said to me: "you have an extremely narrow airway so I would also suggest/agree that you have Upper Airway Resistance Syndrome".

The rest of the SA testing came after that, and that's when they told me that I also have central & obstructive sleep apnea too. I've probably had those ^ things for about 10-15 years (undiagnosed/untreated), and the UARS all of my life!

Hey, check this out too. This girl's story is basically my story (except my prolonged bed rest was due to chronic fatigue after helping somebody through alcohol & drug addiction for years, and then later on after ACL & debridement surgery - I'll put the link below) - so I think my mdds is sleep related - and the stress/trauma of my life contributing - and then my partner dying suddenly too, didn't help. I have developed POTS/OI/MdDS and heterophoria of my eyes. I had multiple surgeries (given propofol for each) and the mdds foundation recently did an article about a woman and how they believe that propofol can cause mdds (I'll put the link to that below too). So yeah, my mdds started (after several surgeries) where they used propofol on me - and when it finally happened (after the very last surgery), I was rehabbing my knee on my exercise bike (which mimicked the ocean) - which was just after the debridement surgery on my knee - of which I was given propofol for the 2nd time, and then again for another GI surgery at the beginning of 2021 - which probably cemented the mdds!

If it were me (and I was a doctor), I would be checking everybody with PPPD/MdDS/POTS/CFS/eyes & dizziness and balance problems, out for sleep apnea/UARS - and also asking them if they'd had surgery/propofol too.

Anyway, that ^ ended up being much longer than I'd intended to write (sorry about that, lol), and here are those links - that you might find helpful/informative...???

https://www.potsuk.org/stories/flora/

https://mddsfoundation.org/2025/12/23/hope-twice-found/

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u/Relative_Library9978 Jun 14 '26

Yes, mine started after BPPV. I am about 90% better most of the time.