Elaine’s Story of Remission, Compassion and Advocacy

ES_and_ELIMy name is Elaine Schlissel. I am 65 years old and I live in Atlanta, Georgia. In June 2010, a cruise changed my life.

The cruise was a long anticipated celebration of our 40th wedding anniversary. We had a wonderful time, until shortly after the ship docked at our final port. I sensed that the boat was still moving, despite evidence to the contrary that its passengers were disembarking. Three days of dry land in Vancouver did not lessen that feeling and by the time we returned home I felt quite ill.

Alaskan cruises provide the opportunity to see amazing scenery and wildlife through a variety of motion experiences. We disembarked from the ship at several ports and went on trains, buses, seaplanes, dogsled rides, helicopters, ferries, and fishing boats. A dream come true for most passengers; a nightmare for a passenger whose souvenir is a full-blown case of MdDS.

I was fortunate that my internist quickly referred me to a neuro-otologist. Within 10 minutes, a vestibular therapist in that office diagnosed me with MdDS.

My first bout of rocking lasted five months. I know that I recovered because of early diagnosis; compliance with prescribed eye and balance exercises; medication; and sheer luck. The accompanying severe and disabling migraine headaches were much more difficult to resolve. It took 18 months of hard work, frequent office visits, and many after-hours phone calls for my very patient neurologist to come up with a combination of medications that has worked pretty well for me.

After breathing a deep sigh of relief that I finally had my life back, in the fall of 2012 I became ill with a serious bout of GastroEsophageal Reflux Disease. The stress of this illness brought on the Return of the Rock. Fortunately, the second bout of MdDS was briefer and less severe. The resolution of the GERD and another medicine change were successful in bringing round two to an end.

Because I was no longer working and my children were grown, I did not have many responsibilities. But my very pleasant life of taking adult education classes, enjoying a book group, chairing a committee for a major annual book festival, being an active member of a women’s organization, exercising at the gym, and spending time with my granddaughters seemed to vanish overnight. My time was spent at home on the couch, watching television shows that required no plot to follow, and dozing the day away. The migraine component of the illness was extremely painful and required strong medicines and even more sleeping. Instead of looking forward to my son’s wedding (during my first episode) and the birth of his son (during my second episode), I worried about not being able to enjoy his wedding and not being able to carry his baby safely.

MdDS is a particularly insidious illness. Outgoing, active, productive members of society can quickly become housebound and become a burden to others. Performing daily activities that were once automatic can become nearly impossible chores. Some of us have few outside responsibilities and are lucky to have the time to rest endlessly. Those who have jobs and/or family responsibilities have a much tougher time meeting the needs of their spouses, children, and employers.

MdDS is also an illness that is not well understood by patients and their health care providers. Appointments can be frustrating experiences for both sides. Patients expect doctors to solve medical problems and when they cannot do so, the level of frustration rises. Most doctors have little experience dealing with this rare disorder with a hard-to-pronounce name and strange symptoms. I think that some of this frustration can be lessened by relaying information that would be helpful to both groups.

Some information I think may be helpful to patients is:

  • PARTICIPATE IN THE PROCESS — Keep a complete medical journal of your health history, descriptions of your symptoms, and notes from previous appointments. Bring it to every medical appointment along with a written list of questions that occur to you between appointments. We tend to forget medical problems that have been resolved in the past but may be relevant to current problems. This is especially important if you relocate and need to change your physicians.
  • BE YOUR OWN ADVOCATE — Read the peer-reviewed studies by leading, well-respected MdDS researchers listed on the MdDS website. The Internet makes it easy to find the papers. Even if you don’t understand the hard science, you can understand the abstract and the conclusion of the study. Avoid articles about individual cases (they reek of sensationalism) and do not overwhelm the doctor with more than one or two articles at each visit. A caring and interested doctor will appreciate the information and your attempt to be a partner in your health care. And if he or she has already read the article, you’ll know you are in the right place! The National Organization for Rare Diseases states that there are over 7,000 rare diseases. No one can know about them all, but the doctor you choose should be willing to understand that you have one of the 7,000 rare diseases and be willing to learn about it. If a doctor dismisses your symptoms, do some research and find one who won’t dismiss your symptoms.

Some information that I think may be helpful to doctors is:

  • LISTEN TO US carefully and don’t dismiss our odd symptoms. We move, we tilt, we lean, we bounce, we sway, we rock and we’re dizzy. Our symptoms can change from day to day, even hour to hour. Many of us have severe migraines that add an additional dimension of misery. Our goal is not to involve you in signing forms for disability coverage; we’d much prefer to be back where we were before MdDS changed our quality of life.
  • BELIEVE US when we explain how debilitating MdDS symptoms can be and try to understand the desperation that arises from not being able to do the things we used to do easily and having an illness that is poorly understood by our families, friends, and employers.
  • DON’T GIVE UP ON US when our medical problems are not quickly and successfully treated. We wish we had a condition that required less of your time and could be resolved with a prescription for an antibiotic.

I cannot agree with those who say that everything happens for a reason. There is no rational way to understand why my life has been derailed for nearly three years. But I can say that MdDS has taught me to be more compassionate about the both the visible and the invisible handicaps that so many people face; to be grateful for the support of my friends and family; and to be amazed at the power of the Internet to bring my story to the attention of doctors and patients alike.

Elaine Schlissel
One-week Cruise
June 2010

Elaine’s Story of Remission, Compassion and Advocacy was last modified: December 19th, 2017 by MdDS Foundation

23 comments

Discussion Policy
  1. rockymama

    Elaine, are you still in remission? How much Effexor do you take? I’m on ••• mg (extended release) which may not be enough but I thought I would see what other patients are taking.

    1. Rockymama, in order to prevent detailed information such as dosages from being used as medical advice, the amount you are taking has been redacted. Your unedited question has been sent to Elaine so that she may respond to you directly. If you are not already a member of one of our online Support Groups, you may request membership. Medications and related information such as side effects, how to withdraw, etc., are often discussed there.

    2. Elaine Schlissel

      Yes! I have been in remission for over two years. I’m lucky, or respond well to meds and I work on balance and strength training. Any or all of the above has helped.

      Feel free to message me on Facebook or send email to me directly if you want to correspond further

  2. Patricia Leverick

    What kind of eye and balance exercises did you do?

    1. Elaine Schlissel

      Ocular motor, visual motor, modified Semont, Therapy ball, gaze stabilization, out of phase eye-head exercises, modified Brandt-Daroff. Get your eyes working together – nystagmus may be a big cause the problem. Then walk outside gazing straight ahead. I had friends as “walkers.” Walk three steps, lift foot. Walk three steps, turn around.

      Now I am able to do tricks on the Bosu ball (the half dome ball you see at the gym). I have been working on balance for a long time now. I credit it plus medicine with my current two year remission. Feel free to email me. [Moderator’s Note: email address has been deleted as an anti-SPAM measure for your protection.]

  3. Anne

    I have had MdDS for 3 years this Nov. I find myself crying many days and feel so alone. I have a amazing family and friends but no one can truly understand the magnitude of this ridiculous syndrome. I feel so cheated out of the fun things in life. I walk around in a state of dizziness and blurred vision (which I read some get and others do not) . I got MdDS on a college visit to see my son from SF to Boston. In three years of college I have visited one other time. It breaks my heart. I have had a run of medical issues in my life (50yrs) Ten years ago I had Guillian Barre syndrome. A rare syndrome which paralyzes your entire body for a 3 week hospital stay. Three years later, breast cancer. The week before I left for Boston I had an implant problem implant came through the skin and need 2 emergency surgeries . I believe the stress of the surgery and the 5 hr flight put me straight into MdDS. I was fortunate to be in Dr Cha’s study in Oklahoma last September . I can’t really say it worked for me but it may have. She is an amazingly, kind caring sole. I have such a need to find a person in my area with this syndrome. I live in California in the San Francisco Bay area. Thank you Elaine for your story, it gives hope and support. I’m hoping by the time I have grandchildren there will be a cure for this and I can travel the world with my family like I have always dreamed.

    1. anica

      How are you feeling now ?

      1. Elaine

        Mostly fine. I get some symptoms when I don’t get enough sleep or I am particularly stressed. I work with trainer 2 times a week on balance, strength, and flexibility. If symptoms start to reoccur, I do eye exercises religiously and slow down for a few days. I am a firm believer in nystagmus being a major cause of mdds. If your eyes do not track correctly, your balance is off

        I avoid all triggers everyone mentions– crowded places, especially malls, 3 d movies, etc. I must travel across the country and a couple of hours to see friends and family, but nothing extra.

        I still take [dosage struck] Effexor a day.

        What I believe and what I do seems to be different from what others do. But it is working for me.

        Write back if you have any questions or comments. This syndrome is so difficult to deal with.

        Elaine

      2. I’m doing very well. I’m very aggressive with working on balance exercises, strength and stamina at the gym. I continue to take medication. I avoid the obvious triggers and only take planes when I think it is important. I have grandkids that live across the country.

        If I feel as if it may rear its ugly head again, then I do nystagmus exercises religiously and rest a lot. I am not in the majority of how people treat this, but my vestibular therapist thinks that nystagmus is at the heart of this disorder. If your eyes are not working right, it affects your balance.

        Please feel free to private message me in Facebook if I can help in any way.
        I had trouble sending this, so you may get two similar messages from me

  4. Marilyn Gerard

    Hi I live in Warren MI and also have been diagnosed with MdDS. My symptoms started a few weeks after I went to France to visit my daughter Dec, 2012. I went into the emergency Feb ,2012. and they put me on an iv of benedryl for one day and this didn’t help (maybe it did my symptoms were lessened not much but I wasn’t bouncing off the walls) tried antivert (another antihistimine) no help. I went off the medicine What I think helped was (1)going to Beaumont neurology therapy (Brain Training) for 5 weeks on tuesdays and Thurs Also went to (2)Therapy for TMJ M,W,F at the same time not sure if this did any thing but I thought it might help someone with the headaches (and TMJ 🙂 ). traveled to florida 2 X since being diagnosed (my symptoms did not get any worse) You need to do the exercises. Back to my original thought with the benedryl I got a rash from (no see ums bites)while in the keys and I took Benedryl 4 to 6 hours ((2 at night) Do not do this i thought it would help me sleep but it was too much and it had the opposite effect) for 2 days and I didn’t have any of my symptoms! So I called my doctor He put me on 1 over the Counter Zyrtec at night and it’s working!

    If a medicine doesnt work for you maybe give it another try Please ask you Doctor about all meds they can help you alot On the bright side I finally got to go surfing (virtual surfing) at age 56 and a new bite guard!

  5. Jan

    what medications were given to you for MdDS or what medications or food supplements or vitamins are used to treat MdDS.

    1. Elaine Schlissel

      The first time I took nortriptylin. The second time I took Effexor. There is no one medicine that has been designed specifically for mdds. Many of us have tried many different drugs. There are a lot of posts about meds on the mdds friends website and the yahoo website. It is a guess as to what , if anything , will work for mdds.

      1. Lucy67

        My nine day cruise finished this saturday the 27th and I thought I was going crazy feeling inbalance, fatigue and lack of concentration. My husband tells me to get over my vacation funny very funny but this horrible feeling doesn’t go AWAY!!!!!!!!!!

        1. Elaine Schlissel

          Lucy– if it doesn’t go away soon, you need to see an otologist or a neurologist. If you diagnose it early and get on it, you have a better chance of getting better. Your brain is getting used to the maladaptive behavior. Make sure you look at the list of docs familiar with MdDS and see if one is in your area. That doc will be able to confirm diagnosis and suggest treatment plan. Let me know if I can help further.

  6. Margaret

    Elaine,

    I’m originally from Atlanta myself. I’m 31 years old and went on a yacht for a week in the BVI’s. I got back Saturday, March 16th. It’s now the 25th and the rocking hasn’t stopped. I feel like it’s gotten a bit better, but it is frustrating. All the stories I’ve read sound like this doesn’t go away. It’s got me a bit scared. I live in NYC right now. It’s impossible to see a doctor in a timely fashion. I can’t see one until March 4th. Easter is coming up this weekend and I am supposed to fly to Charleston. Do you suggest that I cancel my trip? I was hoping my symptons would be gone by now and I could travel, but now I’m nervous. If this could prolong my symptoms or make them worse, I would like to skip the trip all together. There isn’t enough information on the internet though for me to make an informed decison. Advice would be great appreciated. I fly out Friday in the morning and return Sunday. My flight on Sunday is a connecting flight.

    Thanks!

    Margaret

    1. mddsfoundation

      Margaret, the decision to travel or not is always a very personal decision, usually based on risks vs. benefits. While some of us are worsened by travel, others are not negatively affected. Should you decide to travel, there are some Travel Tips on the Foundation’s website http://www.mddsfoundation.org/symptoms-2/coping-with-mdds/

    2. Elaine Schlissel

      Margaret– I haven’t had a problem traveling by plane. Some MdDS docs recommend valium before a flight. So I do this, but not sure it makes a difference. I have a new grandchild in California, so I will be traveling coast to coast pretty often.

      1. Margaret

        Thanks for the response Elaine! I ended up flying. I took some anti-anxiety medicine, didn’t read (like I normally do), slept if I could, prepped in advance for the flight so I wouldn’t be stressed and it turned out ok. Congrats on the new grandchild! Margaret

  7. Terrie

    Elaine, Thanks so much for sharing your story. I am so happy that you were able to go into remission. And grateful that you are still here to support your friends that still suffer from this illiness.

  8. Gerald

    Well, Elaine, we have three things in common: our age, our city of residence, and MdDS. However, our comparative experiences with the latter have been quite different. Mine has been unrelenting for the past eight years, having been undiagnosed/misdiagnosed for the first five. The rocking sensation in my torso induced a visit to a cardiologist and angioplasty for five partially blocked arteries. (MdDS may very well have saved my life.) The unresolved rocking was misdiagnosed as a non-life threatening heart valve issue. Over the ensuing years I described the classic symptoms–standing up in a small boat, only relief was while riding in a car–to numerous medical professionals in Atlanta, none of whom, unfortunately, was a neuro-otologist, and all of whom were absolutely clueless about MdDS. The ultimate solution to my health conundrum was provided by my sister who happened to catch an airing of ‘The Lady Who Couldn’t Stop Rocking’ on Mystery Diagnosis. [By the way, after repeated unsuccessful attempts to reach the balance disorder specialist who was featured in the episode, I was finally informed by his office that he no longer accepts MdDS patients and regretted his appearance. This indicates to me that the medical community in general remain just as baffled by this malady as those suffering with it, and there is no effective treatment for PERSISTENT MdDS beyond prescription drugs for symptom suppression.]

    Thankfully, I have never suffered from migraines which afflict many with MdDS, and it is encouraging and heartening to know your migraines–as well as your other MdDS symptoms–have been remitted. But no celebratory cruises! [Speaking of which, I am fairly certain the triggering event in my case was a brief, single session on an exercise machine which moved my torso, hips and legs in a manner that produced an odd sense of unease during and for several minutes afterward. Of course, as we all know, unusual motion is only one piece of this maddening jig saw puzzle.]

    Wishing you the very best for the rest of your life, Elaine.

  9. catluvrmh

    hoo-boy, am i glad to get this email!! i’m printing it off to take to my primary care physician who knows nothing of these symptoms other than what i have described – and even then, because he’s never heard of it, i’m not too sure he places any credence in my symptoms! i shall keep reading everything i can on the subject, and hope you continue to advise those of us who are newly diagnosed (by television and our own scrutiny). thank you for taking the time to send this…

  10. stephanie

    Elaine i noticed you are from georgia and the list of doctors for official diagnosis is long. I was curious who you used for your mdds. I live in mississippi and have suffered from this for 4 yrs now after my third cruise with girlfriends. I have never had a day of motion sickness until this horrible problem invaded my life. My doctor agrees with all the data and info i have shared with him and believes it is a real disorder . I have read enough data on the internet to send anyone into overload and it is just the same basically. No one has a cure for it or really understands where it originates. I just would like talk with a specialist of some sort on this disorder. Please let me know something about your doctor.I am 53 and have been a hairdresser for 32 years and this has really changed my life.

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