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.
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.
@@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.
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.
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.
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.
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.
@@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.
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.
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.
Gosh, I wish it would stop for one second. So much suffering.
My neurologist is trying to contact Dr. Cha. She practices in Charlotte, NC.
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.
Could this happen after snorkeling for 2 hours 🤔 been in a real flare pretty much immediately after