Latest Research and Treatment for Mal de Debarquement Syndrome (ICU - "I See You" podcast, Ep 21)

[@JoniRedlichPT]

As a recovered MdDS sufferer, I encourage people who have done the Mt Sinai treatment to recreate it at home. It can stop or decrease symptoms, but not prevent symptoms from being triggered. I also encourage people to keep looking for underlying causes, vestibular, visual, or otherwise.

[@pollymoyer4791]

Thanks, Joni :) The MdDS researchers in Antwerp are now offering remote treatment using a similar protocol and quite a few members of the MdDS UK group have either been to Antwerp to take part in clinical trials or have accessed this treatment. I know it doesn't work for everyone and I wish we knew why it doesn't work for some people with MdDS and what might work as an alternative. I'm hoping for some research into the haptic device I used which worked like a charm and, as a person with familial MdDS, I am also interested in the genetics/epigenetics involved.

[@JoniRedlichPT]

@@pollymoyer4791 I had to come up with my own version to make it work for me which I don’t think I could have accomplished if I wasn’t a PT myself. Just want to spread the message of hope that it can get better.

[@seeyouonthefly2024]

Sergei could not seem to get my stripes right at Mount Sinai. He tried to help me when I got home but nothing seemed to work unfortunately.

[@anneis8319]

This video is so informative. Thankyou so much for putting this up especially Dr Chas research on the vascular system. I have mild Mdds from 3 x 2 hour ferries around the Greek islands 2 months ago. It is slightly better than it was but I don't have any problems with falling over. It's mostly just a gentle rocking. But it is annoying. I also have mild POTS syndrome and I'm wondering if this can also be caused by vascular neck issues. I do spend 95% of my day in front of a computer. Can anyone share the physical exercises that Dr Cha gives her patients? I think this is definitely worth trying.

[@seeyouonthefly2024]

My neurologist is trying to contact Dr. Cha. She practices in Charlotte, NC.

[@seeyouonthefly2024]

Gosh, I wish it would stop for one second. So much suffering.

[@rosalindreay5936]

Could this happen after snorkeling for 2 hours 🤔 been in a real flare pretty much immediately after

[@rosalindreay5936]

I have vestibular migraine however after a boat ride and whale watching 2 days activities...ive been like on a boat and bouncing dloor when walking. 10 years.