1. < Ear, Nose & Throat (ENT)

mal disembarkment syndrome (MdDS or MDD)

Posted by nitalisa @nitalisa, Oct 7, 2019

My partner was diagnosed with this back in 2014. Trying to find more info. Have started to research again after it came back in September 2017 and has been permanent condition since. Am in the process of submitting to Mayo Clinic – ENT for research status.

Interested in more discussions like this? Go to the Ear, Nose & Throat (ENT) Support Group.

Lisa Lucier | @lisalucier | Oct 7, 2019

Hi, @nitalisa – it makes sense to read up and find all the pertinent information you can on mal de debarquement (MDD), One resource you might check out if you've not already is https://rarediseases.org/rare-diseases/mal-de-debarquement/.

I'd like to introduce you to @hopeful33250, who has a movement disorder and may be familiar with this disease. @johnbishop may also have heard of it and/or may have some resources on where he looks for high quality medical information.

What symptoms or challenges has your partner faced with (MDD)?

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 7, 2019

Hi @nitalisa, I would like to add my welcome along with @lisalucier. I'm not sure if you are aware of or have used Google Scholar (https://scholar.google.com/). I've found it useful to find research type information. This is a recent article but seems like it might help provide more information and may help.

Occipital and Cerebellar Theta Burst Stimulation for Mal De Debarquement Syndrome
— https://journals.lww.com/otology-neurotology/Abstract/2019/10000/Occipital_and_Cerebellar_Theta_Burst_Stimulation.29.aspx

REPLY
1 reply
nitalisa | @nitalisa | Oct 13, 2019
In reply to @lisalucier "Hi, @nitalisa - it makes sense to read up and find all the pertinent information you..." + (show)
@lisalucier

Hi, @nitalisa – it makes sense to read up and find all the pertinent information you can on mal de debarquement (MDD), One resource you might check out if you've not already is https://rarediseases.org/rare-diseases/mal-de-debarquement/.

I'd like to introduce you to @hopeful33250, who has a movement disorder and may be familiar with this disease. @johnbishop may also have heard of it and/or may have some resources on where he looks for high quality medical information.

What symptoms or challenges has your partner faced with (MDD)?

Jump to this post

Sorry, I had/have to leave this project and work on another project of assisting another group of people. I won't be able to come back to this until end of November. His MDDS has been going on now for 6 years. It's not a life threatening situation, just now getting into the realm of realizing that it has and is inferring with future life plans. I'll be back and we will see if he is ready to peruse this venue of search and research. Thank you for the help so far.

REPLY
nitalisa | @nitalisa | Oct 15, 2019
In reply to @johnbishop "Hi @nitalisa, I would like to add my welcome along with @lisalucier. I'm not sure if..." + (show)
@johnbishop

Hi @nitalisa, I would like to add my welcome along with @lisalucier. I'm not sure if you are aware of or have used Google Scholar (https://scholar.google.com/). I've found it useful to find research type information. This is a recent article but seems like it might help provide more information and may help.

Occipital and Cerebellar Theta Burst Stimulation for Mal De Debarquement Syndrome
— https://journals.lww.com/otology-neurotology/Abstract/2019/10000/Occipital_and_Cerebellar_Theta_Burst_Stimulation.29.aspx

Jump to this post

Hey John, thanks for the articles. I have to stop working on this project for a bit. Will pursue in November, when my time alllows. Soney is too overwhelmed to do any of this himself.

REPLY
Please sign in or register to post a reply.