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.

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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)?

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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

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@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)?

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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.

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@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

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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.

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Hi, Does the Mayo Clinic provide treatment for MDDS? Who can I talk to about treatments and diagnosis?

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@kimrichards463

Hi, Does the Mayo Clinic provide treatment for MDDS? Who can I talk to about treatments and diagnosis?

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Hello @kimrichards463, Welcome to Connect. This is an older discussion but I'm hoping @nitalisa will be able to share some information on MDDS with you. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Mayo Clinic does have some related information on diagnosing and treating balance problems related to vestibular disorders here - https://www.mayoclinic.org/diseases-conditions/balance-problems/diagnosis-treatment/drc-20350477.

I also found these references that might be helpful:
--- Vestibular Disorders Association - Mal de Débarquement: https://vestibular.org/article/diagnosis-treatment/types-of-vestibular-disorders/mal-de-debarquement/
--- Dizziness and Balance Testing - Mayo Clinic (YouTube video): https://www.youtube.com/watch?v=gk6oGF7AVGI

Can you share what your symptoms are?

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@johnbishop

Hello @kimrichards463, Welcome to Connect. This is an older discussion but I'm hoping @nitalisa will be able to share some information on MDDS with you. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Mayo Clinic does have some related information on diagnosing and treating balance problems related to vestibular disorders here - https://www.mayoclinic.org/diseases-conditions/balance-problems/diagnosis-treatment/drc-20350477.

I also found these references that might be helpful:
--- Vestibular Disorders Association - Mal de Débarquement: https://vestibular.org/article/diagnosis-treatment/types-of-vestibular-disorders/mal-de-debarquement/
--- Dizziness and Balance Testing - Mayo Clinic (YouTube video): https://www.youtube.com/watch?v=gk6oGF7AVGI

Can you share what your symptoms are?

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Hi John,
I haven't spent any time with this Mal de Débarquement since I last posted, 2019.
It is a condition my spouse has and he has no interest in pursuing treatment or reasons of it for himself.
I have my own theories about his condition. I believe he has "it" and he uses the condition as a way for him to avoid moving forward in his life.
This journey is now his to pursue.
Good luck and Best wishes to All as you figure it out for each and All.

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