mal disembarkment syndrome (MdDS or MDD)

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)?

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

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.

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.

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

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

Can you share what your symptoms are?

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.

@johnbishop
I've had MDDS for 40 years. For the first 8, no one could diagnose me so I was sent to therapy for anxiety. I eventually learned about MDDS as info became available online. So treatment switched to finding ways to cope, as it is very distressing & for many, debilitating.
The symptoms are episodic especially in the beginning. My last episode never went away & I lost my career, home & much more due to lack of awareness by drs and ineffective treatments.
There are ways to manage MDDS that help many people but more research is needed.
If Mayo has any dr familiar with this condition, I might try again to get advice. I already go there for cancer scans.
MDDS is a real vestibular disorder that causes nonstop sense of motion, like being on a boat, not dizziness. It's weird & frightening. Also fatigue (extreme for me), head pressure & pain, & other things depending on person.
If you do have someone at Mayo who knows about MDDS, please let me know.

Welcome @amywygd, Thank you for sharing your experience with MDDS. I don't have any experience with the condition but thought you might be interested in scanning through the following discussions where a few members have mentioned the condition:
-- Body feels like it’s rocking but it’s not moving:
https://connect.mayoclinic.org/discussion/body-feels-like-its-rocking-but-its-not-moving/
-- Neuropathy and Motion Sickness: https://connect.mayoclinic.org/discussion/neuropathy-and-motion-sickness/