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← Return to mal disembarkment syndrome (MdDS or MDD)
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mal disembarkment syndrome (MdDS or MDD)
Ear, Nose & Throat (ENT) | Last Active: Jan 9 1:16pm | Replies (9)Comment receiving replies
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?
Replies to "Hello @kimrichards463, Welcome to Connect. This is an older discussion but I'm hoping @nitalisa will be..."
@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.
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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.