Brandy’s Not-from-a-Cruise MdDS Story

MdDS has been the most challenging thing for me both physically and emotionally, and it has stripped me of most of my independence as well as my self-esteem. It has completely changed my life.
MdDS… stripped me of most of my independence as well as my self-esteem. It has completely changed my life.

My MdDS began in December 2012. I didn’t know what it was and kept getting misdiagnosed. My instinct was that it could have been brought on by playing for long periods of time on the Nintendo Wii with my kids. I knew that playing some of those games tricked my brain into thinking I was actually participating in those activities for real. Often I would feel motion sickness and need a break, but would get right back to playing. My instinct proved correct when I was officially diagnosed during intervention treatment in New York in May 2015.

MdDS has taken away so many joys in my life. I was an avid hiker and enjoyed Zumba, but with symptoms at the higher levels almost every day, it is not possible for me to exercise like I used to because some days simply walking through my house takes all the energy and balancing skills that I can muster.

My children have had to miss out on many things because of me or had to go places and not have me with them because doing so would heighten my symptoms. It has also been stressful on my marriage as my husband has to do the things he usually does as well as take over many things I once did with ease. Household chores like vacuuming and cleaning counters is out of the question because I feel I will fall and actually have fallen from time to time. Home-schooling my boys is very important to me, so even though it is really difficult, I manage because it is necessary.

Shopping is a two-person event now because I can’t go alone. Simple things like taking a shower or having a bath are now something I dread because I feel the shower stall is rocking back and forth while I am in it. The bath water moving makes me feel like I am on a raft in the middle of the ocean and it doesn’t feel good. I’ve learned that I need to depend on a cane or a wheelchair in order to take part in things I love. It was a very, very difficult thing for me to accept that.

MdDS has been the most challenging thing for me both physically and emotionally, and it has stripped me of most of my independence as well as my self-esteem. It has completely changed my life.

Because I was dismissed by many in the medical field, I feel it is key to spread awareness about this illness. I believe all doctors should be made aware of it and for those who are aware, they should understand that MdDS is not always caused by being on a cruise or a boat. That is one of the reasons why I was misdiagnosed so often.

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I had to stop working as a Boudoir photographer because I was afraid I’d fall over on a client, but I still do nature photography. My kids and my husband have been wonderful and supportive to me and without their help I feel I would be in a much darker place.

Brandy
Age 37 at onset
Trigger: Nintendo Wii?

37 comments

Discussion Policy
  1. Cynthia Michaud

    I was on a benzo drug for insomnia. After two years, I decided to stop taking the medication. I asked my doctor, who was new to the practice, to help me with the process. I was told it was best to just stop taking it. After three days of almost no sleep and horrible “vertigo”, I did call back to this doctor’s office and still no help. The “vertigo”, I’m now completely sure is MDDS. It’s a horrible way to live but like the rest of you, I muddle through it.

    1. MdDS Foundation

      Cynthia, you don’t have to muddle through it alone. You may be interested in joining one of our support groups. There are others who have shared stories like yours. Learn more on our Find Support page.

  2. Teresa

    I went on a cruise, felt crappy for 6 weeks. A year later went to Hawaii, its been nearly 3 years ago, i felt horrible, my eyes go blurry, get tired, feel like im standing on a dock, no doctors knew what it was. Its alot better now, when i finally read MDDS, I cried, im not crazy. When my neck hurts or feel stressed it gets worse.

  3. javaria

    hey i am from pakistan.. i am writing for the first time somewhere..after searching so much regarding whats wrong with me i came up with this web site..
    i want to describe my condition to you so that u may be able to conclude if i have this MDDS issue aswell..
    since 3 years almost whenever there is a change in weather i start to feel dizzy, lazy, tired, depressed and my eyes are under pressure.. it feels difficult to open them.. now as summers are going and winters are coming here..i ferl headache and irritated..last year once i almost fainted and the year before last year too.. i fainted..it seems my mind is revolving.. i feel weak and sleepy all day.
    please telme if i am suffering from this issue as well.

    1. MdDS Foundation

      The Foundation does not diagnose or offer medical advice. If you suspect that you have Mal de Débarquement Syndrome, please consult with your doctor to develop a plan of action. Your doctor may be interested in the most current research findings (Biomedical Literature). We also highly recommend providing them with our informational brochure. You may request a printed brochure by emailing your complete mailing address to brochures@mddsfoundation.org.

    2. Have you looked into Vestibular Migraines? The reason I ask is your symptoms are similar. Obviously you must seek medical advice.

  4. Tara

    I’ve was diagnosed in 2014 after many brain scans, too many doctor visits to count and after going from doctor to doctor. I believe mine started after a flight because once I got off the plane I knew something wasn’t right. Since then I have been diagnosed with Fibromyalgia, which I believe is a result of MDDS. It has definitely changed my life and made things much more difficult. I am a single mother and I have been working 2 jobs for 14 years to support my family. Everyday is a challenge but I have to keep going for my child. I hope someday a cure will be found.

  5. Nancy Tapee

    I have had MdDS since 1995 it gets better and worse. I am never without the rocking. I believe I may have been one of the first to tell my story here. I have learned to fight the rocking but my muscles are always tight and if I relax I will fall over.
    I am encouraged by the things I have read that they are actually working on a cure for this orphan disease. Dr. Dai sounds especially encouraging.
    Just checking back to see what is new.
    Nancy Tapee-Frowiss.

    1. MdDS Foundation

      Nancy, we found your story on etete.com, the pioneering website on MdDS built by Evan Torrie in the 90s. We’d love to publish an update from you. Would you like to retell you story including what you have learned since 1995? Coping strategies are always appreciated.

      Please send us a picture, whether of yourself or something meaningful to your story. Email your story to mddsfoundation@yahoo.com. Thanks for your consideration.

  6. Anne smith

    I have been like this for nearly 3 years had a eye op for thyroid problems decompression and now they say its not eye related at end of my tether I’ll all the time can’t go out on my own can’t go upstairs

  7. Lynn

    Does MdDS accompany or cause Tinnitus? I have occasional dizziness when I move my head from side to side or sleep on my right side – and I have now got ringing in my right ear.

    1. Some MdDS patients have similar complaints but a causal connection has not been proven. Are you a member of one of our Support Groups? Links to them can be found at the bottom of this page.

  8. Hi.
    I too have had 6 months of misdiagnosis, anxiety attacks, lack of self confidence. My kids and husband have picked up a lot of slack too. As I put it – I’ve been existing not living.
    Until, that is, I found a functional neurological chiropractor who had studied at the Carrick brain centres in America. I have had 3 lots of 3 day treatments and can now do the washing, drive, wipe down bench tops etc.
    If you would like any info post a comment and I’ll get an email update
    Jody

    1. regs castro

      what did the chiropractor did with your problem?

      1. He uses up to date research and gyrostim.
        If you have a private email address I can send you some video footage of the exercises I do and the treatment I get.

        1. Cindy Reck

          Would love some information as well.

        2. Mrs.Khan

          Many thanks, I am suffering from a similar condition & any info shared by you will really help.
          Looking forward.

          1. MdDS Foundation

            Mrs. Khan, you may be interested in our support groups. Our members are from almost 60 countries; many suffer with multiple conditions and can offer much advice and support. Learn more on our Find Support page.

    2. John

      Hi Jody,

      My girlfriend is suffering badly from MdDS. Lately she can’t even get out of bed. Can you provide more information on your neurological chiropractor ? This sounds encouraging and if it can relieve some of her symptoms it will be well worth it.

      Thanks!
      John

      1. Hi John,
        I’m having a bad day today so tell her she’s not alone and it sucks!
        Dr Stephanos Kassabalis is in Croydon park, Sydney. Inner west family chiropractic. Google the number and give him or Theo (his off sider) a call.
        Hope this helps.

    3. Olga Mainieri

      Hi, Jodi. Can you, please, share excersises for this condition that heloped you. I would greatly appreciated it. My email [redacted].
      Moderator Note: the email address was deleted per our Discussion Policy. Your request for exercises has been forwarded to Jody.

  9. Jean

    Brandy,
    I know exactly what you’re talking about because I feel that even though the doctors have not diagnosed me with mal Débarquement syndrome and that is exactly what I have had for the last 15 years.
    I tip for taking a shower and that I have found helps me is that I have grab rails on both sides of my shower stall and I have a shower chair that I sit in when I am in the shower and it helps quite a bit especially when I have to wash my hair which is a big big chore for me because I have to be careful not to get the soap in my eyes and try to hold my balance at the same time. When I close my eyes I lose my balance and get very very dizzy and I need help with taking a shower. I have a caregiver that stays with me and she helps with me in the shower as I cannot get in and out of the bathtub any longer…I miss the soaking part of being in the tub. There are many things in my life that are chaneed now that I missed terribly and it’s very very difficult to cope with this terrible disorder. I like you was never on a cruise when this started so you do not have to be on a cruise or on an airplane to get this disorder. I really have never identified what caused this but I know it happened after I had a severe viral infection upper respiratory and soon after that I started feeling off balance.
    I was on a long period dose of antibiotics and maybe the viral infection lodged somewhere within my brain and never actually went away..who knows it’s just an assumption?
    Thanks for sharing your story..I hope you get better as I do hope for myself also. But I don’t see how that can happen unless I have some sort of intervention in the way of therapy or any medications or treatment because it is not getting any better just left alone.
    Jean

  10. ShannaBug

    I just found a new forum for Mal de Debarquement Syndrome (MdDS) mddsforums.org.

    1. Thank you for sharing. New forums appear periodically. They usually are designed to meet a specific need, such a local meetups. Discussing and organizing a meetup can get lost in the Foundation-managed support groups, which are international in scope and many conversations take place at once.

      We don’t discourage anyone from joining new groups, but we encourage people to become and stay members of the Foundation-managed support groups for access to the archive of knowledge which goes back more than a decade. There is information in our archives that cannot be found anywhere else.

  11. Cristina

    My MDdS started after a cruise one month ago, so I still have hope thatt may just vo away….
    On the other side I am afraid that it will stay forever!
    Reading your stories I wonder if anyone knows a doctor expert in MDdS in Europe. I live in Germany and would not be able to travel to the US just for a doctor appointment.
    Thanks to anyone who may help with any reference.

    1. Constance

      Christina, were you ever able to get help in Germany? I am in the same situation and am looking for a doctor with any experience.

  12. Micah

    So I just got diagnosed with MdDS today and wow it was an amazing feeling to finally get a clear cut diagnosis. As some of you mentioned its extremely hard to find out about problem. I actually showed an article to my doctor, who knew what it was and then after i showed him the article was like yeah, that is what you are having(it only took like 3 stinken months). For me it was caused by an ear irrigation [sic]. After about 2 months of SEVERE vertigo/disequilibrium and other balance problems they finally started to subside. But what got progressively worse, and what is ALWAYS there for me now, is the problem with my vision. My vision problems were there from the get go, but as I understand it my brain learned to compensate for the vertigo by becoming more reliant on your vision. But with your vision already messed up it just makes it that much worse. So now instead of being DIZZY, I have terrible spatial disorientation along with horrible brain fog, confusion, anxiety, depression pretty much the list goes on for general cognitive dysfunction.

    Has any one here taken any Rehab for it? My doctor just prescribed that and acts like it should fade away in time.

    I sure hope to God it does or at least gets a little better so i can have some normal function again. I’m only 24 years old and this is definately a quality of life ruiner. I also farm which is an extremely stressful job and am around heavy equipment a lot. I almost don’t even feel comfortable being around stuff i’ve been around all my life solely because of this.

    If any of you guys have any comments or anything i’d appreciate it cause i’m just now learning about this very rare condition. I’ll try not to be a debby downer but man not a lot of positive stuff floating around on the internet about it.

  13. Jeanette

    What is Eftor Tapping

  14. Jeanette

    Gail, I’ve not heard of video games giving someone MDDS but it does make since. I got MDDS by riding on a pontoon boat for a couple of hours. It will get better for a time but I have been on plane rides that bother me some. At this time I am in remission. I do take Inderal and Lamictal twice a day. My ENT doctor has suggested that MDDS can be brought on by migraines. I have been taking both medicines now for a couple of years. I was on my treadmill yesterday and felt a little dizzy but it did not last long. Do not give up on trying things to give you relief. I hope you are feeling better soon. I have experienced all your symptoms and it is no fun at all.

    1. Jeanette

      Sorry Brandy I called you the wrong name.

  15. I have trouble getting dizzy at movies and even our big screen tv and watching movies on the computer. Maybe something about high definition tricks the brain or even the size of the screen. My MDDS started after a long flight. I got better after four years but too much movie watching will cause problems and I am afraid to travel again. Tough this time of year when so many people are talking about their trips. I hope you will find your self-esteem again. We are not what ails us.

  16. Tod

    Great to hear your story, I am sure you’ll feel much better now you’ve found this group of like minded wobblers! Like Sascha Miller says, It does definitely get More manageable with time, and after a while you just kinda forget about it in a way. It seems to move back to the subconscious, but it IS there all the time for everyone.

    we all have the same symptoms and stress and anxiety bring symptoms on in a big way.

    You will LEARN to live with it, and just try to think about how it can POSITIVELY influence your life. It’s not going to kill you and it will never get any worse.

    For me it has actually cured a lot of the anxiety issues I had.

    I know you have fallen, but like a great DJ once said:

    ‘The turntables may wobble, but they don’t fall down!’

    You can still be a super human being and 100% healthy and have mdds

    Good luck!

    Tom

  17. Gail Hamilton

    I have found when showering, sometimes, anchoring my hands on wall or handicapped bars and closing my eyes will help. Try it, Gail

  18. ros rawson

    I FIND THAT EFTOR TAPPING HELPS

  19. sascha miller

    So sorry Brandy…. with time it does get better and more manageable. Like you, mine started on a brain tricking piece of equipment, a treadmill…. its now been 26 years but I can do most of the activities I love, I just need to sit down sometimes. However, I will never get on a boat, snorkle, go on mind altering rides– play video games or get back on a treadmill ever again. With walking and hiking I find looking down makes me feel less tipsy than looking out ahead. Good luck!

  20. Eulalee Hubble

    Thank you for sharing your story. The path my MDDS is very similar to yours. Mine started with a couple of plane trips and was mild at first too. Like you, showering is exhausting. I am in a better situation than you because I’m older & my children are grown. I’m wishing the best for you in finding treatment that works.

  21. Thanks for sharing Brandy. My MDDS started without benefit of a cruise. I began my adventure four years ago. The beginning, in comparison, was easy. I was a 1-2 back then. Each day got a little wose. I am lucky that I topped at 3-4. I can get around but am limited in what I can do. It is physically frustrating. Good luck to you and all of us.

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