I am a 57 Year old Married Female with Central Vestibular Disorder/Mal de Debarquement Syndrome. I was diagnosed in 2011 but have had this since 2008. MdDS is a persistent and long-lasting disorder of perceived motion and related imbalance that most often develops after an ocean cruise or other type of travel or motion experience. But, it may also develop spontaneously. In my case I have cruised on 4 occasions. My last 2 cruises I had my warning signs. I developed MdDS for a period of about 6 months after each cruise. The last 2 cruises were on rough seas. But, it was after I had surgery in 2008 and getting up for the first time that the boat was sailing again and has not stopped since. This is a debilitating disorder that affects not only me but my family and my personal life. It is difficult to function on a daily basis. Some days are better than others but some days are very rough. I worked as a Medical Practice Manager for over 20 years and my background was also Accounting. My cognitive function is poor, math skills are now poor and also my communication skills are not what they use to be. I have a problem with my short-term memory. Spell check is now my best friend. Lighting must be low, no crowds and no or very low noises please.
This is not life threatening but is certainly life altering. Doctors don’t know much about this disorder and only 3 doctors to my knowledge are doing research. It is listed as a “Rare Disease”. The last day of February is Rare Diseases Day and June is Mal de Debarquement Syndrome Awareness Month.
God led me to Lindy Marshall through a mutual friend and Lindy pointed me to Dr. Kim Fox and GyroStim therapy. I am scheduled for two weeks of therapy starting April 22, 2019. I went on my first cruise in December 2018. Through much research online, prayer and in speaking with Lindy, I know I have MdDS. I will be evaluated and tested at AVORA Health prior to therapy. Thank you for posting these blog entries. They have been a huge source of HOPE! I go expectantly. Blessings. Suz
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HI Cindy,
My name is Ashley and I have had these rocking, pulling, swaying, walking on a trampoline symptoms for almost 2 1/2 years now. I have seen every doctor on the planet and I finally had a doctor at Duke in NC to diagnose me with MdDs. He said that I also have margarine vestibulopathy, and persistent postural perceptual dizziness. I am wondering did you just have classic MdD’s? I need therapy, I just don’t know whether to go to Mount Sinai or try the Gyro stim in Asheville.
Thank you!
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Hi Ashley. You sound like you have classic MdDS and would benefit from the Gyrostim. I just returned because I decided I felt so good I would get back on a boat at my cousins this past summer. Then we had to evacuate for the hurricane and my symptoms really went from a 2 to about a 5. I wanted to get the movement back under control and achieved 100% no movement or as the joke was I’m a big fat zero now. Had a 5 hour drive home and no motion still. Now the trick is for me to stay off of a boat and avoid other triggers if I can. If you want to talk, email me at cbeagle1957@gmail.com and I’ll give you my phone number and if you would give me yours that would be good too. This is much easier to discuss over the phone. I’ll look for your email and we can talk. Let me know if I can text you as sometimes I don’t check my email like I should.
Cindy
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Ashley, I had MdDs and did the gyrostim therapy with Dr. Fox. The rocking, bobbing and swaying is completely gone. Dr. Fox felt that I also had PPPD. It is much better now. I highly recommend gyrostim. The light treatment at Mt. Sinai has not been working very well. I talked with the director of Vestibular therapy at Duke University Hospital. He said the gyrostim was the most promising therapy. I completed my gyrostim in October 2017. I am now 16 months free of symptoms. I talked with Cindy Beagle extensively prior to my treatment. She was a great source of encouragement. Lindy Marshall
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Hi,
A relief to read a blog about someone suffering from the debilitating effects of vertigo. I was diagnosed with migranous vertigo in 2012. The onset of it was actually in 2009 while I was at work. Because of inadequacy in insurance (they kept wanting me to go to in network neurologist who did not know how to treat it) I was finally allowed to see the proper otoneurologist, the only specialist who knew how to treat it. Now fast forward to today. Three weeks ago the vertigo broke through the therapeutic level of the medication after having a migraine. It basically rendered me helpless. I had to take time off from work. Well, a insurance snafu denied me seeing the otoneurologist. I couldn’t go back to work until I could see him. I had been in contact with work keeping them informed that I couldn’t go to the Dr until the insurance approved it. I informed today that I have been terminated because of not being able to show up to work. Oh the irony. I work in surgery in a hospital.
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Hi Eric. So sorry you are being treated so badly by your employer. This disorder /disease is very cruel bc people believe you can just shake it off and get better. It’s just not that simple. Many of us suffer with anxiety, depression, cognitive issues, memory problems, unable to multi-task, fatigue and the list goes on and on. I can no longer work, use a cane to help with fall prevention and touch sensory and physically rock. I feel this is progressive as I’m in my 9th year and did not start using a cane until a little over 3 years.
I pray every day for all with vestibular issues to be healed. Good luck Eric.
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