Robert’s Story: Self-Diagnosed 36 yr-old Atlantan

2013-05-12 19.22.40My name is Robert Lupo, and I live in Decatur, Georgia. I am a 36 year old male who has been experiencing Mal de Debarquement for a little over two years. I left a concert on January 1st 2013 and have been experiencing this syndrome ever since.

Throughout the first couple months of experiencing it I was thinking it would probably just go away on its own but soon realized it would not. My general practitioner recommended I see a ENT specialist; they gave me some tests and ruled out all of the stuff they could treat. Then they recommended I see a neurologist.

I began seeing a neurologist in March 2013 and got some MRIs to rule out any major issues. My neurologist did not really know what I had and had never seen anything like it before. I believe it was in between my first and second visit that I started doing a good bit of research on the Internet and came across MdDS. It sounded like exactly what I had, the symptoms and the disappearance of the symptoms when driving or riding in a car. I went back to my doctor with this information and he agreed with my self-diagnosis. I am the first person he has ever treated with this disease. He recommended I see a physiotherapist who specializes in things like this. I went to 12 sessions throughout the summer and fall of 2013. I saw very moderate improvements but nothing substantial. I admittedly could have been better about doing my “exercises” at home.

I have worked in the restaurant industry for about 20 years and have been a chef/cook for about 15 years. This industry is known for its long hours, stressful conditions and long periods of standing; these are all severe challenges for me as a sufferer of MdDS. I am currently not working full-time and have not done so since August. I am having a hard time plotting/figuring out/processing what my next career move should be partly due to the challenges MdDS presents. Because of a job change that went wrong, I currently do not have health insurance, but I am hoping to be covered with Obamacare within the next month. I have not seen my Neurologist since the beginning of the summer 2014.

Like most people’s experiences I read about, some days are better than others. Stress, standing for long periods and looking down continuously seem to aggravate my symptoms. Driving, watching TV and being on the computer* all seem to alleviate symptoms. I try not to focus on the negative, stay positive and exercise frequently.

Thank you for this site and all the information I have gotten from it. I am a member of the Yahoo Support Group, but I would like to connect with other sufferers in general and specifically the Atlanta area if possible. I have never met anyone else in person that has MdDS so that is something I would love to do. It is hard to explain to people what MdDS is and how it affects every aspect of your life… thanks for listening.

Robert Lupo
Concert, January 2013

*EDITOR’S NOTE: being on the computer is an aggravator for many with MdDS. To see a list of commonly reported symptoms and what they may be associated with, visit the Symptoms page of this website.

Robert’s Story: Self-Diagnosed 36 yr-old Atlantan was last modified: July 15th, 2017 by MdDS Foundation

30 comments

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  1. ros rawson

    try Tapping EFT it doesn’t cure [stress or anxiety] but it helps

  2. Abraham Msoloka

    I read the Robert’s story about MdMDS, am curently suffering with this disease so how can I get out of this painful suffering if some one know its treatment beg you kindly inform me. My name is Abraham Iam at Arusha Tanzania
    Thank you.

  3. Aurora Zine

    May 19 will be my third year anniversary of having MdDs. I started having symptoms after a flat water boat ride on the Circle Line in NYC. Last week, I returned to NY for the first time since that happened. I didn’t go on the Circle Line, but was very surprised that I felt symptom free during my trip. Everything that could trigger the MdDs symptoms did not (e.g., plane flight, time change, being tired after long days of visiting and activities). It was wonderful! Then I returned home and am now back to working long days on my computer. My symptoms are now back. So, I’m not sure what triggers the symptoms….. boat rides or working on my computer.

  4. Mandy Bamsey

    I feel some relief that there are others out there experiencing many of the debillitating symptoms of MdDS, it makes me feel better knowing I’m not alone.
    After a wonderful cruise in December 2014 around the Caribbean I have been struggling with balance problems, brain fog, anxiety, concentration, extreme fatigue etc. I have fought hard to try and maintain a ‘normal’ life, sometimes only just about managing to do my shift at work then straight to bed!
    Badminton has always been a huge part of my life, playing 4/5 times a week, at the very beginning I couldn’t play as I was worried I was going to fall and break a limb but slowly I managed to play again, sometimes it would make me feel very sick but I will not give into it. I had read somewhere it helps to re-train your brain. I certainly feel better for doing it.

  5. Tara

    I have been experiencing symptoms of this disorder really as long as I can remember after traveling. I generally would bounce back from it after the trip was over. However in the past 4 years I cannot seem to get away from the symptoms for more than a few days at a time. I have been from doctor to doctor since 2008. The final diagnoses was chronic migraine, however I only actually get head pain maybe once a month. The symptoms have seem to be getting worse the last year and have been really debilitating. I have tried all kinds of medications and treatments geared towards migraines and nothing seems to work. I was doing some searching myself and found this condition. This is EXACTLY how I feel. I saw a headache/dizziness specialist for the first time last year and explained to him that when I am in motion, like driving, the symptoms disappear. However he has also diagnosed chronic migraine. However I cannot go anywhere that is really busy like grocery stores without swaying or feeling wobbly. I am just curious if anyone has tried a NUCCA chiropractor that has this disorder? A few weeks ago I went to one as a last resort when someone at work told me they can help migraines (at this time migraines was what I thought I had due to my physicians not diagnosing this). However I think I still may continue some treatments to see if this helps because they apparently can help vertigo patients so maybe they can help swaying/wobbly ones too.

    1. Tara, NUCCA has been discussed in the MdDS Foundation Yahoo Support Group. I don’t recall the end result of the discussions, but if you are a member you may use the search feature and scan the messages. The “Search Conversations” box shows up if you are using a computer/laptop or a browser (not an app) on a phone/tablet.

    2. Eulalee Hubble

      Tara, I really upset my neurologist when I told him I didn’t think I had migraine induced vertigo and that’s when he referred me to UC Davis. Not being listened to by so many doctors is terribly frustrating. I printed out the MdDS Foundation checklist of symptoms when I went to UC Davis & the neurologist had no qualms about diagnosing me with MdDS. Good luck – you are not alone!

      1. Tara

        Thanks for the reply! I see in your earlier post that he feels your symptoms can get better slowly. Does he give other treatment options other than medications?

      2. Eulalee Hubble

        No, he didn’t. He seemed to want to take a wait & see stance. So I went to see my primary care doctor for and asked for a referral to an ENT doctor that is very knowledgeable in VRT. The neuro didn’t suggest I follow up with him so I will continue to seek my own solutions.

  6. Kim

    I am about to seek treatment from the Carrick Brain Center using their OVARD therapy and hope to have some great results. Have had MdMS for about 2 years now from a plane ride and will report back. Anyone been to the Carrick Brain Center for treatment?

    1. Kim, if you are not already a member, we recommend joining one of our Support Groups, where you can use the search feature to see what’s been discussed in regard to the Carrick center. You must be on a computer (or use a browser like Safari on a tablet or phone) for the search function to work properly. There are literally thousands of messages in the support group archives, and of course, you can ask questions.

  7. Eulalee Hubble

    I’m following up on my earlier post which was just before my appointment with a neurologist @ UC Davis. The doctor confirmed my self diagnosis of MdDS!! The first question he asked was if I felt normal when riding in a car. My husband & I both confirmed that we both had remarked on this in the past. I have hope now that my life may return to semi- normalcy. He was not a fan of benzo’s and prescribed Elavil (amitriptyline). The doctor said my case was very severe but he believes my symptoms can be relieved slowly. Do others notice that the wind blowing trees around makes it worse. In the past I also felt like the flooring was moving up & down after riding an escalator in the mall.

  8. Gloria Ours

    My MdDs (self diagnosis) started in a different way, and have suffered for two yrs now. I had flown and was having some stuffiness. A few days after being home I was scrolling on the computer and was suddenly hit with a horrible case of vertigo. I was down and out for about three days then gradually improved but was left with this imbalance. I have most all of the symptoms described and have flown and cruised since my “episode” with no further problems. Have seen several doctors and had many tests with no helpful results. Acupuncture did seem to relieve it somewhat. It just feels so good to read all these comments and know i’m not “crazy”….LOL

  9. Sharon Hopper

    Robert: I walked off a cruise ship in September, 2013 with the bouncing, swaying, lurching and anxiety. After six months of crying and not being able to leave my house a neighbor researched my symptoms and found MdDS. I researched and took the best articles to a YOUNG doctor in Rome, GA. He did not know about the syndrome but was willing to learn. He studied the research for a month and by that time I had suffered for seven months. He put me on generic Effexor and Klonapin. A month later he doubled the dose of both and recently he upped the Klonapin to three times a day. I was walking up to 10 miles a day but during the past month I push to get 4.5 to 5.0. I take lots of vitamins because I am on a semi vegan diet (bean soups mostly) I eat lean ground beef or lean chicken every once in a while so I take lots of B-12, selenium and vitamin c. I also give myself a B12 injection every two weeks. I am retired so when I need to rest I do. Most of the time I do ok. I hope to go to Dr. Dai one day if his statistical success warrants the expense. Right now, I am watching the results. For more information you may email me.

  10. Eulalee Hubble

    Eula Hubble
    Turlock, CA
    March 31, 2015
    This is all new information to me and after reading this I feel like a great weight has been lifted from my shoulders. I have been at the highest level of symptoms for over three years. I have seen 5 different neurologists & am scheduled to see number six tomorrow. I have also seen three separate ENT’s and had MRI’s, a lumbar puncture and been put on more medications than I can count. I have always had a problem with motion sickness and patterned carpet makes me nauseas. This episode started after a flight to Oklahoma. My mother was in the hospital & I had to ride the elevator multiple times a day & I was on the 4th floor of a hotel room. At the hospital I asked my sister if she felt like the floor was moving up and down. That was in January & in late March I had to make another trip to OK when my step-father passed away. Of course both trips were extremely stressful. After seeing a couple of local doctors for the constant bobbing feeling, I was finally referred to Stanford. The young neurologist said my vertigo (I said I didn’t have vertigo!) was caused by the medication I was on for migraines & anxiety. She referred me to a psychiatrist & told me to quit taking all the meds. So I quit taking the amitriptyline, the benzodiazepine & hydrocodone. My symptoms worsened terribly. I am now at the point where I rarely leave the house because of the fear of falling, I have depth perception problems, and anxiety. I don’t experience these symptoms when riding in the car!! When I am walking, if the color of the carpet or flooring changes, I feel like I’m stepping in a hole. I had given up hope of ever getting better or even getting a diagnosis. Now I have hope.

  11. Kim Kepner

    Robert
    I am sorry you have to go thru this.
    I live in the atlanta area and have suffered with this disease since 2008 From a fishing boat. Dr Tusa diagnosed me finally after several months of seeing other doctors. I have tried physical therapy which has helped me to cope but never get really better. I take Valium to get me thru the day. The best I feel is driving.
    I saw Elaine’s post maybe we could meet.
    Your fellow rocker
    Kim Kepner

  12. John Morris

    Anyone who is interested in talking about my last post, feel free to email me.

  13. John Morris

    Robert, I suffered 5 months of mdds in 2 episodes. 3 hour boat ride when I was 38. I feel that I may have some insights into the cause and looking for current sufferers to compare notes and maybe try some ideas.

    Email me if you are interested. I currently have no symptoms btw.

    Thx and sorry for your suffering.

    John Morris
    Seattle, WA

  14. Jean

    Robert, I also totally feel you pain. I have recovered from MDDS twice now. Both times I either got it from flying or on a boat unsure which, so I will not be doing either of those things again. The first time I got it was in 2008 I was like all of you thought it would go away once I was home and in my own environment, not so much. I went to my ENT doctor, but was seen by the physicians assistance that fortunately knew what I had. She sent me to the Hearing and Balance Center in Salt Lake City UT. They had me doing all kinds of exercises and after 6 weeks I recovered. I did everything these guys told me to do and more. This is a terrible disease. The second time I got it was 2 years ago this time it took me 17 weeks to get over it. I would be happy to post all of the exercises I did and what they had me taking if anyone is interested. I know that some of you are probably at this point say that I did not really have MDDS well I had all of the testing done by my ENT as well as a Neurologist confirm my diagnoses. I had all of the symptoms that you all have been talking about the bobbing up and down, terrible head aches, could not go to work and be around people and the movement. I could not even watch TV the movement was to much for me. Yes the only time I had a little relief was riding in a car. Let me know if you would like to know more. Good Luck….my heart goes out to you.

    1. Linda Looney

      Jean, Could you post the exercises?

      1. Jean

        Linda,
        First and foremost my doctors had me walk, especially out side. I started out that I could only walk to the mail box in front of my house and worked up from there. So get out there and walk.
        Walk down a hall with your eyes open and your feet taking like baby steps. While you are walking down the hall look straight ahead focusing on either a spot on the wall or a light socket or something. Do this multiple times. Then do the same exercise only this time you are moving your head slowly side to side. Same thing multiple times. Then the same exercise with your putting you feet one in front of the other (looking straight ahead and then moving head slowly side to side.
        Then another exercise was doing the same and to above exercise only closing your eyes looking straight head and then moving your head side to side.
        He also had me ground my self. To do this you lean your back up against the wall and make yourself feel stable/steady. Breathing and relaxing.
        Also easy neck stretching rotating around and then ear to shoulder.
        Another exercise is to sit in a swivel chair and keep you head still, focus your eyes on a spot and then swivel the chair but not your head. Slowly swivel left to right rotating your body.
        He also had me take a cushion off the couch and stand on it and rock gently side to side and forward and back. Another exercise he had me doing was we made a board with a checkered pattern on it. Then I would stand there and my husband would move the board around in front of me.
        I also took valium and at night I took like Tylenol PM. You must get your rest. I did these exercises multiple times a day and walked multiple times a day. I am convinced that you must throw yourself back into life to be better. I know this is very hard to do.
        Good Luck…Please let me know if you have any other questions.
        Is this some thing like your doctors have you doing already? I am just curious.

        1. Linda Looney

          Hey Jean,
          This was great information. Thank you so much for posting these exercises. Can’t wait to give them a try.
          I have never been given any exercises but am glad to now have some. After reading someones blog that it actually put the MdDs in remission for a while after doing exercises was encouraging.
          There is hope for us all. Even though it is worse some days than others I just try and accept it but the others days I just want to sit and be still so it stabilizes. 🙂

  15. patti

    Robert, I totally feel your pain. I was on a ferry going from Cozumel to Playa Del Carmen in 2011 and the weather was awful, many throwing up on this boat and when I got off I was bobbing up and down. I thought it would stop in a few hours as it usually does but after days, weeks and months went by I realized that something was not normal here as it wouldn’t stop. I went to an ENT, I had an MRI, I went to a Chiropractor, tried yoga (which helped a little) and my family doctor never heard of MDDS (I self-diagnosed after a lot of research) I found it very hard to concentrate at work when I’m going up and down. Walking was like I’m on one of those State fair rides when the floor moves up and down. Through the years it has gotten a little better but the big change recently for me was in December of 2014 (3.5 years of this) I was at a friends house for a Christmas party and it was real slick outside. The driveway was very icy. As I was walking down the driveway I slipped on my back and my head hit the driveway so hard you could hear it from a distance. Well, I got up – got in my car and drove (didn’t feel any different as when you drive you don’t feel it) but when I got home I told my husband that I wasn’t bobbing anymore. I couldn’t believe it! I thought it will come back but the next day but it never did. I don’t recommend doing what happened to me as I could have gotten a concussion, however, something went back into place from that fall and hit on my head. I sent an e-mail to the MDDS foundation regarding this about a month ago and never heard back (probably won’t) but I just wanted to tell my story that you just never know. Sometimes when I get real tired I feel like it comes back a little bit but it just may be in my “head” – I don’t know. Good luck to you!

    1. Patti, I vaguely recall seeing your email and I’m sorry nobody replied. I don’t think any of us knew how to reply because, as you said, falling and hitting your head isn’t a recommended plan of action. Happy you were able to achieve remission.

  16. Tod

    Hi, I have my story on here too. I’ve had it for four years now. You’ll be okay, I’m working as a delivery driver now (not sure if I would enjoy standing in one place all day) and I’m fine. I don’t really think about it at all now, although nothing has changed with regard to symptoms. In some strange way I feel I can see it as a positive thing. It s a good filter against anxiety, in that I am a much less anxious person because I know anxiety exacerbates it a lot. I read somewhere just to be happy it’s not life threatening and I’ve stuck with that. Good luck. You’ll be fine 😉

  17. Abby

    Went to an Ent yesterday which said I could MAV or Mdds. This is so frustrating I’ve been swaying/rocking since October and I wasn’t around a boat. I have all the symptoms of mdds but I have extremely bad eye sensitivity , I can hardly stand up in the check line at the grocery . was wondering if any other suffers experienced that? And I’m symptom free in a car 🙂 thanks for making the blog!

    1. Yes, Abby, unfortunately many of our members have received inconclusive diagnoses. I believe that I’ve seen some talk about eye sensitivity in our closed group on Facebook. If you join our Support Groups, you can use the search feature to see what’s been discussed. [You have to be on a computer (or use a browser like Safari on a tablet or phone) for the search function to work right.] And of course, you can ask questions — there are literally thousands of messages in the support group archives, and given your eye sensitivity that might be the way to go.

  18. Clenda

    Robert, I have MdDS for three plus years. I live in North Carolina. Heard about Dr. Ronald Tusa at Emory. He diagnosed me after seeing me only for a short period of time. Love him. He is very knowledgeable about MdDS and is on the board of the foundation. Look him up, you live close to Atlanta. Hope this helps. He has helped make my life a little better. Good luck!

  19. Elaine Schlissel

    There are several of us in the Atlanta area. We have an informal support group and meet occasionally. Please email me and I will be happy to speak with you.

    1. Linda Looney

      Linda Looney
      Atlanta, GA
      February 18, 2014
      I have had MdDs since June 2010. After visiting a friend in Philly, where we took a harbor cruise on a Saturday, I experienced the rocking the following Monday. I underwent ENT and neuroloigical testing above and beyond what was prescribed so that I would have peace of mind that I did not have an ear or brain tumor. I saw a Dizzy and Imbalance Neurologist at Emory University that diagnosed me with Mal de Debarquement. I am glad there is a support group for this syndrome. It can be annoying at times but it beats the alternative. I hope others who suffer from this and cannot find answers from their doctors, because it is such a rare disorder, will come to find peace knowing that we are going to be okay. I have been prescribed Klonopin for anxiety by my psychiatrist who also suggested that it may be MdDs which could last for weeks, months, years or forever. Also, the neurologist at Emory recommended the same medication. No one wants to take a “benzo” drug, but it does help me for panic attacks and reduces some of the floating sensation as well. Yes, riding in a car eliminates it as well as staring at TV or going to a movie. Stress and fatique definitely accentuate the symptoms.

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