In September of 2010, my life at 46 was chugging along at a fine pace. My family is lucky enough to take an annual trip to Lake Powell, Utah but the one in 2010 changed my life forever. This particular trip was our 13th and nothing was out of the ordinary, except prior to going I was riding my mountain bike and took a spill going over the handle bars. At first, I thought, “Wow, there goes hundreds of dollars for a chiropractor!” I didn’t think much else of it, got back on my bike and was happily “off to the lake” for a week.
Upon arrival back home from lake trips, I have always experienced “sea legs” for a while. This time, though, a week went by and then another and then another. After about five weeks, the symptoms list kept growing. I felt an almost-constant rocking and swaying, dizziness, and I had “fuzzy” thinking. I would lose my balance easily, including falling down twice in the middle of busy city streets. I couldn’t vacuum or rake leaves. I couldn’t read newspapers. I was a complete space cadet, and I would do weird things like get up every morning at 3:30 a.m. on the dot, forget to turn lights off when leaving a room, forget to rinse my hair, forget names of friends, etc.
After about six weeks I went to see an acupuncturist, who treated me for “motion sickness.” That helped for a few days. I then went to a chiropractor and was diagnosed with a C-6 vertebrae problem (likely has nothing to do with MdDS). I then went to a naturopath that practices cranial sacral therapy. These alternative treatments helped but unfortunately relief was short-lived.
My primary care physician said I likely had a concussion. This doctor did test after test after test, including an EKG, blood panel, and an MRI – all came back normal. He then concluded: I cannot figure you out so I’m sending you to a neurologist. On my own self-referral, I went to an ENT. He diagnosed me as having Postural Tachycardia Syndrome (blood pressure drops upon standing up from a lying-down position). After telling me it was the most dramatic case he’d seen in three years, he tersely noted, “I cannot do anything for you. This isn’t my area. Go back to a primary care doctor.” I decided unwillingly, due to mounting expenses, to take my primary care MD’s advice and go to a neurologist. I did and… more tests. She backed up what my primary doctor said, that I had a concussion. She did do treatments of “Frequency Specific Microcurrent” (electricity zapping the brain in small doses). She said, with urgency, when I wasn’t getting better, “If you are not better by December, I am sending you to the Mayo Clinic.”
All the while, it now being the third month mark, I was incredibly fatigued. I have my own business and work many nights. I am a meeting facilitator and it was all I could do to make it through a meeting. In writing participants’ feedback on a flip chart, I would forget what someone just said, misspell words, and always I was rocking and swaying. I had to sit down a lot, only being able to stand about 20 minutes. My friends would make fun of me (not trying to be mean) and say things like, “How is that ‘head thing’ going for you?” “Fun that you have an excuse to be a space cadet…” “Isn’t menopause fun!” I gained weight, and I felt crippled, depressed, old, weak and debilitated.
Well December came around and I was not better. I called the neurologist based on her urgency that this is resolved or I was off to the Mayo Clinic, but she didn’t return my call. I called again and her office manager said something such as, “We cannot get you in until February.” I decided right then that I had to figure this out myself. I decided the health care system here in my local community had completely failed me either out of omission or commission. I decided not to be a victim anymore.
So, I started surfing the Internet. I researched “concussions” (my diagnosis at that time) and realized that in the vast majority of situations, concussions subside – patients get better. I wasn’t getting better. I also read more closely the symptoms of concussion at onset, and I had none of them notably losing consciousness. Through some quirky function in Google (and probably via the grace of “The Universe”) I literally stumbled upon Mal de Débarquement Syndrome (MdDS). I knew this is what I had. I thank the MdDS Foundation because it is their site I eventually found.
And, by the grace of God, I have a friend in Denver who is a lobbyist in Colorado’s Legislature. She has lobbied for health care organizations. She referred me to a fellow lobbyist at the University of Colorado Health Sciences Center (UCHSC) in Denver. That lobbyist helped me get an appointment at the UCHSC Otolaryngology Department in January. I would note that this clinic is seven hours from where I live. I saw Dr. Carol Foster who is a neurologist and ENT. I was in her clinic four minutes while she read my chart and heard my story, which I told quickly through clenched teeth and while fighting back tears. When she said, “You have Mal de Débarquement Syndrome.” The relief of being both diagnosed and validated is beyond belief! I then went through many tests at her clinic for balance, to test my vestibular system (inner ear) and took tests to gauge eye movement. Interestingly, I have an imbalance in the function of my right ear compared to the left possibly due to a tear.
Dr. Foster told me that MdDS affects mostly women, many who are in perimenopause, and describing me to a tee, who tend to be a little on the OCD side of things. I believe she told me that some medical professionals believe this is a form of migraine but she herself wasn’t sure on this point. (While I am not a heath care provider, I think the links between female hormones and MdDS need more study and consideration.) She prescribed Paxil. After taking it initially, I felt relief in five days. She also said to do things such as walking or racquet ball, and also gave me a “Half Somersault” maneuver to do for another diagnosis: Benign Paroxysmal Positional Vertigo (BPPV). I have been on the meds ever since in varying degrees. When I am not episodic, I take half-doses 3x/week.
I have had three episodes of MdDS since my initial onset. Being a Westerner and ranch girl, I was taught to always “get back on the horse” so went to Lake Powell in 2011 and 2012. Both times I had symptoms upon return but not nearly as severe as the first. This year I went to the US Virgin Islands, where I snorkeled, played in the ocean, rode a ferry, rode a Hobby Cat sail boat and endured many winding roads in a taxi. Each time I felt symptoms coming on, I used electronic “relief bands” which help me. I did come back with a fairly bad case of MdDS, although not as acute as the first one. Progress. This episode lasted two months and only recently really went away.
Because this occurred, I took it as a sign that I needed to overhaul my health. I have lost 10 pounds, gone on a gluten- and sugar-free healthy eating program, and reduced stress. I mediate when I can. While costly, I eat organic when possible and only eat dairy and meat that has no hormones, added chemicals, etc. I truly believe all this has helped but very clearly, without medication, I would not be where I am today.
I refuse to be a victim either of the syndrome or the health care system. I am essentially an OK person; I acknowledge that others suffer much more from this mysterious condition, and my prayers go out to all. I would also like to note that I wonder what would have happened to me had I not had “the right connections” to get into an expert or even know about such a person? What if I could not have traveled to Denver or couldn’t pay for the many tests (all of them added up to $6,000 paid out-of-pocket because we have catastrophic health insurance)? I’m lucky. Many are not so lucky, which is why more education of all health care providers is needed, including within the marine and boating industries.
I will close with a saying that I saw in my neurologist’s office. “When you cannot find solid ground beneath your feet, it is because you are being taught to fly.” Indeed.
M. Norton, Western US
Lake vacation 2010
I have suffered from similar symptoms for 4 years following a stroke that left me blind for 4 days and left me with only 55% vision in both eyes ,the vision in the right hemisphere in both eyes has gone. I have trouble sleeping and have this constant feeling of dizziness 24/7.I also feel in total space and isolation.I always need someone or something to hold onto.Physiotherapy exercises did not help.I am so happy to have found this site as I am sure people think that I am pulling afast one!
My wife suffers from this and I just stumbled upon this possible solution.
Thank you for sharing this information. This PR circulated widely across the Internet following the publication of a research article titled, “Readaptation of the vestibulo-ocular reflex relieves the mal de debarquement syndrome” in July 2014. The article can be found in the links to Biomedical Literature on our website http://www.mddsfoundation.org/professionals/literature/.
The Foundation continues to work with Dr. Dai and we are re-posting the following information on behalf of the Mt. Sinai team: A formal input procedure has been put in place. People who have or may have MdDS and are interested in having a consultation and/or possibly treatment should contact Zelinette La Paz (212) 241-2179 to start the input process.
my wife not walk properly. mrs Singhal is suffering from cerebullar Ataxia from last 20 years. She can not walk properly, 50 percent memory loss. She is 66 year old. Suggest any treatment.
While ataxia is a reported symptom of Mal de Débarquement Syndrome, cerebellar damage is generally not found in MdDS patients.Hain If your wife has a history of migraine, recalls a motion trigger, feels relief of symptoms while in passive motion such as while driving, or for some other reason suspects that she may have MdDS, we invite you/her to join one of our online Support Groups. Some members have improved their balance through vestibular therapy. Once you are a member, you can search through the message archives or ask others for advice.
I have been diagnosed with MdDS as well. I was on a floating dock for 1 day at the beginning of July. It’s now mid September and it’s like I never left the dock! I only feel relief while driving, sleeping or rowing at the gym. I am seeing a physiotherapist and they have me doing vestibular exercises, and bouncing up and down, side to side, and forward and back on an exercise ball to recalibrate the system. I was wondering what kind of medication you take 3x a week? Is it anti-anxiety medication?
Thank you for sharing your story. I too suffer from many of the same symptoms as you did and had the same reaction the day my ENT said “you have MdDS”. As the tears rolled down my face, it was a relief to know that I wasn’t just crazy and that someone finally believed in me and concurred with what I thought was wrong. It’s been almost 6 years since contracting this awful condition and it has affected my life every summer since then. It is miserable and debilitating at times. My shortest affliction has been 3 weeks and the longest 3 months. I am currently on day 3 of my most recent episode with no relief in sight. I have tried Klonopin and Meclazine with no relief. I just push through each day and wait for that morning that I wake up symptom free. Good luck to all of the sufferers of MdDs. Nobody can understand the awfulness of this syndrome without experiencing it first hand…which I wish upon no one.
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