Has anyone been diagnosed with MDDS? Sounds more like me

Specific Illnesses & Conditions VM/MAV
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1

I was diagnosed with MAV in January and have been struggling to combat that since then. I didn’t even know of the existence of MDDS until looking through these forums and seeing it mentioned. Surprisingly, this sounds exactly like me - the constant, relentless, 24/7 swaying/rockiness/false sense of movement, whether I’m sitting, standing, or laying down. The telltale sign of MDDS seems to be that sufferers feel better when they’re in a moving car or any vehicle, and this seems to be MY case. I don’t feel one hundred percent better, but I feel better, certainly. So I’m just wondering, could it still be MAV that I have with all the symptoms I just described, or does it sound more like I’m an MDDS case? Is anyone here a diagnosed sufferer of MDDS?

Also, all the research I’ve seen from Hain’s website and others indicates that sufferers of MDDS almost always got it after a prolonged cruise out at sea or flights. I’ve never been on a prolonged cruise out at sea, but I did go on a short three or four hour boat ride this past August. If I recall correctly, September or October is around the time my rockiness/swaying started getting extremely noticeable.

I’m certainly going to bring this up with my neurologist when I see him this upcoming Tuesday, but I’m wondering what people here in the forums think about swaying/rockiness/false sense of motion symptoms. Does it indicate MDDS, or is that still common for MAV folks?

Thanks!

2

Yes. Have heard both from my docs.

SAL

3

MDDS is rare and there are many people here who deal with constant dizziness and constant non rotational vertigo. I am one of them myself. Have you tried a benzodiazepine? These are the only meds which help me with that accursed rocking sensation.

4

It seems a lot of people with MAV do get better eventually with diet and the right meds, but there are still quite a few members of this forum who have seemingly been here for years without any relief, after trying every med and technique imaginable. Perhaps these cases are actually MdDS cases?

5

I have these symtpoms and i have migraine not mdds - i didn’t ever go on a boat or anythign which could have caused mdds. You can have these symtpoms and have migraine vertigo.

6

I would think that a 3-4 hour boat ride would be enough to set off MDDS.
Are you experiencing MDDS or MAV?
MDDS is not well understood, but some believe it is a form of vestibular migraine. Also, many MDDS patients respond well to migraine treatments.