"My disorder may be invisible, however, I refuse to be."

599023_4609087228932_1897370752_nMy name is Joddie. I am a 47 yr old wife, mother of 3 and grandmother of 3. In November of 2011, I drove from my home in Houston, Texas to Duncan, Oklahoma (a 6 hour drive) to visit a sick relative. Upon arriving in Oklahoma, I felt off, not my normal self. I thought that maybe the stress of the visit had me feeling down. The first night there, I felt as though I was sleeping with my feet above my head, and that was just the beginning. After 4 days I drove back to Houston and have never been the same.

Once I arrived home, I was grabbing walls and furniture to walk. It felt as though I was going to fall over at any second. I had to hold on to the shower walls just to try and shower.

Then came the doctor appointments. I started with the cardiologist, who then sent me to an ENT. The ENT had no clue as to what was wrong, even after doing an MRI. He then sent me to my GP who said he thought it was BPPV. After the Epley maneuver was performed and the symptoms did not go away, he said I needed to live at a higher elevation. Ok, so the husband and I packed up and moved to Arizona (which by the way made me have leave my children and grandchildren). Once there, I found a neurologist who sent me to the Werner Institute for balance disorders in Las Vegas. This was a full year after the initial onset. Within 5 minutes of being at the Werner Institute, a definite MdDS diagnosis was given.

I have tried every medication; some have had lasting side effects which to this day I still get, some have done nothing and some have helped a little.

I am no longer able to work in my profession, my days are a wait and see game. I cannot make plans for anything because I never know how I will wake up or how my day will go. It could start off great with minimal rocking and end up with me in bed by 10 am just trying to maintain.

It has now been 2 years 8 months and 7 days. This is my new normal, my family’s new normal, and it’s horrifying for all of us.

My disorder may be invisible, however, I refuse to be. I want people to know as much as possible about Mal de Debarquement and how those of us who have it are affected. I want them to know that it doesn’t just affect me, but that my entire family suffers because I do.

Knowledge is power. We have to keep searching for that cure, not just for ourselves, but for future sufferers of this rare, not so known disorder.

Sincerely,
Joddie P.


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"My disorder may be invisible, however, I refuse to be." was last modified: August 11th, 2017 by MdDS Foundation

12 comments

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  1. sheila

    Thank you so much I thought I was out of my mind:) I have had this since 2007 when we took a ferry for a week from dutch harbor alaska to homer alaska it was the most extreme boat ride I have been on. It took me until 2011 to find out what I had. I just went to a chiropractor last week and got ujusted and he also did my ears I truly regret it cause it made it worse.gonna wait it out and see if it gets back to the way it was cause I do not like this feeling at all.. Im so glad Im not the only one..

  2. Denise Martin

    I’m reading this and thinking I may have this MdDS. I seem to have had these symptoms on and off since I went on a cruise liner at the age of fourteen, and now I’m in my fifties. I also went on a cruise in the 90s and I was great going though the Bay of Biscay, but once I set foot in Gibraltar I could hardly stand up. I remember the captain saying it sometimes happens to people. That’s why sailors walk with a sway. Do any of you have the symptoms when working on a computer?

    1. Denise,

      On the Foundation’s main website, you will find a list of symptoms frequently reported. There you will see that symptoms are often increased after working on a computer. Familiarizing yourself with this list may help you cope with the symptoms you are having. And if you suspect that you do have MdDS, please join one of our support groups for personal advice. Links to the groups are at the bottom right of this page.

  3. Lisa

    Desperate to find a treatment or cure: My name is Lisa and I went on a cruise in 2009. I was fine when I first got off the ship, the air travel home and that evening. The next morning when I woke up I felt like I was moving even while laying in bed. I thought it would just “go away” but it didn’t. I went to my family Doc. and spent the next month running tests. Brain MRI’s, blood tests, physical therapy, E.N.T’s, you name it, I did it. The diagnosis came after all this proved normal. Mal de Debarquement. What? I started to try to research it but there isn’t much out there. My family Doc put me on Clanazapam. I think I spelled it right….whatever… It did take the symptoms away. I was happy, but feared what would happen if I went of the meds. Every now and then I would experience symptoms. After about 6 months I weaned myself off the medication and to my surprise I was fine. I was completely Asymptomatic for almost a year. Then one day in an older hospital I rode an elevator. The elevator would jump up slightly before passing a floor. When I got to the ground floor and stepped off the elevator….WHAM… all my symptoms returned, and have never left me again. UGH…..That was in 2011. I tried the Clanazapam again and some days I feel better and others are my new typical. My left foot usually feels like it sinks into the floor and my right usually feels like the floor comes up to meet it. I always feel like I am standing on a raft on the ocean and just trying to keep my balance. I recently went to a new neurologist and they look at me like I’m crazy. Let’s try Cymbalta she says. It’s worth a shot. Ok…fine with me. I will try just about anything… I took it for 5 days and had zero effect. It did make me nervous, anxious, upset stomach, headache, and blur my vision periodically, but didn’t touch the motion sensation I feel. So I went off it for a day. That day my body relaxed a little from the anxiety, but I felt like I rocked more than ever. The following day I thought I am going to take a Dramamine if for nothing else. Shits and giggles. I took one Dramamine in the morning and drove to work. About an hour later I noticed that my vision felt better, and that my feel felt heavy. My stomach felt weighty and I didn’t feel like I was dropping down a roller-coaster. I was NORMAL…OMG…then my fear was would it last…One o,clock rolled around and I took a second Dramamine. I felt fine the rest of the entire evening. I got in bed and felt like I was laying on a solid surface. Something I have not felt in such a long time. I prayed it would last as I fell asleep. I awoke to…. MOTION. I almost started to cry. I got up and took another Dramamine, but this time had NO result. I am back to square one again, and went online to see if any new information was out there when I found this blog. I thought if nothing else I would share my story. Tomorrow if I wake up rocking I think I am going to try the Clanazapam again. I don’t know what else to do. I have a message into my Neurologist, but have not heard back as yet. Deep breath…..and lots of prayers for recovery… I just wish I could wish it away.

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  5. stacy hurt

    What is MdDs? I am sorry you must endure this condition ( I will go look it up) but maybe explaining what it is for others would be helpful.

  6. amy

    thanks for sharing. Well said.

  7. pollymoyer

    Joddie, thank you so much for sharing your experiences of MdDS. I hope clinicians will become more aware of MdDS and take note that it is not always triggered by ship travel. I have had MdDS on and off since the end of the 90s and this episode has lasted over 19 months – the longest by far. My sister had (undiagnosed) MdDS for two years and has made a full recovery – which always gives me hope. Sending you all best wishes and ‘calm seas’, Polly

  8. Marla Cruise

    Thanks for sharing your story Joddie. I shared it on Facebook and have had 2 others share it too so far.

  9. Susie

    Joddie
    Thank you for your story. There are many of us that understand how you feel. This is a very Scary & tough especially when people are looking at you like you’re crazy and you don’t have a diagnosis. I have a great Neurologist and her and her PA have helped me through this rough time. My days are more manageable now and I am able to look forward to things which for a while I didn’t. I know what the triggers are that aggravate my symptoms and try my best not to let it take over my entire life. I have just adjusted and learned to live with as many others have.

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