After many years of suffering from MdDS, which was acquired after a horseback ride and associated with severe TMJ pain, Sylvie feels she is finally able to enjoy life again — all because of the vestibular therapy that she still incorporates into her life on a daily basis.
My name is Sylvie Bartels, and I have lived with Mal de Débarquement syndrome for 13 years, including while sleeping. I have felt complete remission from my symptoms during my daytime hours for the last 5 years.
It started in November of 1997 after I dismounted from my horse after an hour-long ride. Actually, it started much earlier but I was diagnosed in 2006 by Dr. Jennifer Maw from Ear Associates, in San Jose, CA. Since my diagnosis I have finally re-connected with who I am, and I credit this to the vestibular rehabilitation that I started in 2006 and that I continue to do for a total of 45 minutes each day.
I can sit still now and I can stand still now, while everything around me remains still. I can read books and computer screens without the slightest hint of nausea. It’s easy to navigate through shopping aisles. I’m able to look people in the eyes now. When I’m out walking I no longer see the horizon jumping in the distance. When I’m outdoors photographing wildlife I’m actually able to focus and connect with what I’m photographing. I especially enjoy macrophotography. I can actually observe insects again. When I had the MdDS I couldn’t even track a bird with my eyes across the sky, and I couldn’t see it when it sat still. I’m able to relax and enjoy myself throughout all hours of the day.
I am sharing my story because I want everyone else who has this disorder to know that vestibular therapy worked for me. If it has worked for me then it might work for you. Vestibular therapy took most of the dizziness away, and then after about 6 months I began to avoid all migraine trigger foods and caffeine completely. To feel my best I have to avoid chemicals and preservatives and I have had to greatly reduce my salt intake. My symptoms come right back if I eat anything containing Tyramine, like processed meats or aged cheeses. I cook everything I eat. I avoid all canned foods. After I incorporated these practices into my routine I felt the remaining dizziness vanish from my daytime hours. I’m very fortunate to have been helped by such a kind, knowledgeable, sincere and understanding health care team and I feel at peace knowing that if I ever need help again they are there.
I did the exercises for 3-4 months before I noticed any improvement at all. The therapy made me feel much worse during those first months. My balance therapist told me that this is a good sign because it means the therapy is working. I did an extra half hour each day of lying on a balance roll doing snow angels, s-curves and picking apples. The balance roll would make me feel so good while I used it, and especially after, because it would take the nausea completely away for the rest of the day. Also I had no short spins caused by my neck when I began using it. The exercises have only worked for me when the majority of them are done while standing stationary. I still experience dizziness while I’m trying to sleep, however it is to a much lesser degree since I started doing these exercises. If I skip a day or two then I can feel my symptoms coming back.
My heart goes out to each and every one of you who is suffering from this disorder. I know that vestibular therapy has worked for some and not for others. I hope that for those of you who are uncertain about trying vestibular therapy, you will give it a chance. When I’m standing with my shoes placed firmly in the sand near the ocean I look across the water and see this horizon line, this completely level horizon line. It does not blink, bob, sway, switch or move. I can’t believe my eyes. I follow the line over and over again with my eyes. I can’t believe that I’m actually able to see this. I’m actually able to notice the all of the gorgeous colors as I watch the foamy water cascade down the steep blue green walls. I can’t move. I’ll stand still for eternity. I’ll never tire of this spectacular world.
Everything feels perfect. However I know it’s not; there are others out there who can’t see this.
I hope that all of you with MdDS will give vestibular therapy a chance like I have because I feel I have my life back because of it.
When I was a kid l was really lucky in that I was completely healthy as far as I knew. I was very physically active. I felt terrific all the time. I was at the dentist a lot however. When I was between the ages of 8-15 I had a total of 20 baby teeth pulled out. My baby teeth did not fall out on their own so several dentists extracted most of them. This was the only health issue that I had ever had prior to when the dizziness had begun. In the back of my mind I had wondered if the extractions, or if the nitrous oxide had somehow caused these symptoms that I was experiencing. I had worn braces from the age of 13 to 17. My teeth were straightened and then went crooked again because my upper and lower teeth were misaligned due to a severe overbite so I wore braces for several years.
When I was 10 years old I had symptoms but the duration was shorter: lasting maybe 2 weeks after the stimuli and the symptoms were not quite as severe. Other types of symptoms occurred after swinging in a hammock and another time after standing in a swimming pool with a wave machine at a water park. After the hammock I remember it was difficult for me to walk down my long driveway that led up to my house. I usually had no problem running up and down this driveway each day. I remember that every time I looked down everything looked distorted (like looking through two parallel pieces of glass.) I could see that my leg movements looked very awkward and that I was uncontrollably taking huge steps. After the water park, as soon as I got home I sat down and I remember my upper body would do these slight jerks to the left and to the right. I couldn’t stop my body from these movements. I could not relax and I felt extremely uncomfortable. At the time I remember thinking that I knew my brain somehow thought I was still in the pool because these were the exact same movements that I had used to combat the waves at the water park.
When I was about 10 or 12 years old I had been severely injured while swimming. I dove under the water with my eyes shut. Assuming in my mind that I was in the middle of the pool I jumped up very fast. I was not in the middle of the pool; I was right under the metal ledge that lined the pool. My mom rushed me to Doctor’s on Duty after my eye socket had swollen into what resembled a golf ball. I could not see out of my eye for a few days. I wore a patch over it for a week. The ophthalmologist told me that my vision checked out fine.
When I was 13 years old my family and I went on a 2 hour whale watching boat trip in Monterey, CA. On the boat I felt very sea sick. Right after I got off the boat I noticed an odd sensation while walking. The next day I noticed that the walls and door frame would sway back and forth every time I lay down. This continued for 2 months.
When I was about 14 I was sitting next to a brushfire on a weekend controlled burn day. I was talking to my grandma. I remember the moment I moved away from the smoke I felt very sick to my stomach and completely off balance. I suggested to my grandma that we drive to the feed store, hoping that the drive would make me feel better. My mom drove us to the store which was 15 minutes away. I rode in the back seat that day. In the feed store I felt worse.
I felt dizziness and had to grip the shelves for balance. I remember trying to look at the budgerigars in the cage, but I couldn’t; they jumped around in my vision while they remained perched. The next day the dizziness was completely gone. I remember thinking that I knew the motion from the car had somehow taken it away.
During the winter and summer months, when I was about 14 years old, my best friend and I had attached a piece of plywood to one of our skateboards. I placed my snow sled on one side. She placed hers on the other. We fastened them into place. I left room in the rope so that our sleds would rise up in the air like a teeter totter. Together we had brought my idea for an exhilarating amusement park type ride to life. We would zip down the very long steep and curvy road as we took turns rocking high towards the sky. Usually the whole thing would become dismantled as we would pick up speed each time; (our favorite part) which caused us to skid in all sorts of directions. We looked forward to this and did this pretty much every day for a very long time. I always felt fine afterwards; however in later years after the dizziness had started in 1997, I would often find myself pondering these memories. The dizziness I felt did not feel anything like our skateboard ride, but it was the only rocking prior to the dizziness that I could think of that seemed to have a slight resemblance. There was the same sort of blur and tilt of the world in one’s peripheral vision.
In September and October of 1997 I noticed a frightening sensation about once or twice a week in only a certain classroom. The chalkboard would tilt back and forth like a teeter totter. I had to grip my desk. I felt that there was an uncontrollable force which was causing me to feel that I was being pulled sideways to the left and right. It was pulling my face and head the most but also my whole body. Looking back on it I remember I always felt cold in this classroom as there was a slight breeze with the windows being open. The second thing that I remember was that I would sometimes watch off and on heat waves rising outside the window. I know that since 1997, any time I feel cold and I get slightly chilled even if only for a few seconds then the dizziness will be bad and will start within a few seconds.
In November of 1997 I rode my beautiful leopard appaloosa “Dancer” bareback for an hour one afternoon. There was nothing particularly unusual about that day because I had been riding bareback/saddle for 9 years prior. The only thing different about that day that I can remember was that I was chewing a huge gumball which was causing severe jaw joint pain (otherwise known as a TMJ headache.) In the 6 months that lead up to that day I had also had jaw pain. I had chewed gum before but never while riding a horse. After the ride I knew something was massively wrong the moment my feet touched the ground. Complete dread swept over. Everything in the left and right sides of my vision was rocking from side to side which caused most of my vision to be very blurry. I felt I was in the middle of high rolling waves in a storm. I had to hold onto Dancer’s mane for several minutes until I realized that when I walked I could balance again. When I walked however, the rocking continued on the horizon in the distance.
About 2 months after this latest onset of the MdDS a loved one passed away. This was very sudden. This caused even more anxiety and depression. Around this time I noticed a massive amount of pressure on my forehead usually from early morning to mid-afternoon. I only noticed it when I sat still at my school desks. During this time I had to avoid all grocery stores. The Florescent lighting put a blinding white wash over everything and the shelves would jump out at me. I had to hold onto them for support. I avoided my full length mirror for several years. On the few occasions that I tried to look into it I’d fall after seeing my reflection move. About 6 months later I was throwing wood onto a pile during a brush burn. I stood near the fire and smoke on and off for about an hour because of its warmth. I was watching the heat waves and smoke. After I had sat down for maybe 10 minutes, I stood up, I took a few steps and realized I had to crouch down and try to hold onto the ground beneath me. This brush pile was on a very slightly graded hill about 150 feet from where I lived, but I couldn’t walk down it. The nausea was unbearable. I could not see that well at all, everything was so blurry and choppy. The best I can describe would be if you took a foggy plastic box with a few holes cut into it and moved it really fast in front of you, back and forth left and right up and down and close and far away. I could see mainly just streaks of color but a few small areas that were in focus jumped everywhere. At the time, that day was pretty much the worst day of my life. I was completely devastated. I did not know what I had done that had caused this. I went to several ophthalmologists thinking I had somehow “melted” my eyes. My eyes felt fine and all of the ophthalmologists told me after numerous tests that my vision and everything else checked out fine. The years following this incident were much worse from then on.
For the next 8 years I had to stay in constant motion in order to see the world around me as motionless. If riding Dancer was my main relief then swimming underwater was next in line. After that I would have to say running, then bicycling then walking and then driving. I used a rocking chair when I had to sit still and I rocked back and forth on regular chairs .When I had to sit still every moment was used up praying for whatever it was that would cause this feeling to stop. I felt the best when I was galloping Dancer at full speed bareback up and down hills and jumping over logs. The faster I moved and the more range of motion I experienced the better I felt. Overtime I somehow felt her hooves became my feet and her mane was my hair. I felt we were one being. I felt all of my connections to the world were gone, however I felt I was still connected through Dancer.
In high school, Photography was the only class that I had looked forward to. I had been working in the walk-in darkrooms for maybe 6 months prior to when the MdDS had started because I enjoyed photography. After the MdDS started I continued to work in the darkrooms; I felt the MdDS was slightly less noticeable as I maneuvered around in the darkened infrared lit rooms. I decided to create my own darkroom at home after my class ended.
My friend and I would bicycle all over town each day. We used to go to the board walk and I would ride the Big Dipper roller coaster (not an upside down one) over and over again. I felt so much better on that ride. Afterwards we would ride along the wharf feeding fish to the pelicans and sea lions. These are the good memories from that time in my life. On the few occasions that I mentioned to my friend what I was going through she would tell me later that she had discussed it with her grandma who was a nurse and then mention things to me like high blood pressure, sodium and dehydration. I felt such a comfort from her grandma and she became a very good friend also. So far this was more information than all the doctors combined had given me relating to dizziness.
I spent most of my time outdoors even in bad weather. The walls in the house would rock too much.
I went to about 15 doctors during the first 3 years: primary care physicians, otolaryngologists, neurologists, ophthalmologists, an acupuncturist, and a holistic practitioner. They were all located in Santa Cruz and San Francisco. My mother who stuck by me and was the main person who helped me in trying to get better, accompanied me on most visits. I could not have gotten through this time in my life without her.
An ophthalmologist gave me vestibular exercises to do: They were all to be done in motion (while walking). I did the exercises for 6 months; I did not notice any improvement at all. MRIs of my brain showed normal. I had no lesions. I had MRIs done because one time when I was about 15; Dancer and I had fallen backwards over a steep incline, and I hit the back of my head. Another time, after she spooked, I landed on the side of my face. One time when I was 8, I fell off of another horse and hit the front of my face, chipping my front tooth. After each fall I had gotten to my feet right afterwards and I had felt perfectly fine. All blood tests I was told showed normal. Because we lived in an area infested with ticks I was also tested for lime disease. This showed normal. No one had an answer and all I got from these places were usually just blank stares; worse than the blank stares: stupid and insensitive comments.
I haven’t had any alcohol or cigarettes for the last 13 years. I know it would make my symptoms worse.
In 2000: I decided to go to college because of my dreams of filming wildlife. I majored in Film. It was very tough to watch the projector in the darkened rooms and it was almost impossible for me to use the editing software on the computer. Even though after school I always felt absolutely exhausted, usually later in the day I would float in a public swimming pool. As long as I pedaled my feet so that I would bob in the water I felt I could half rest. The nausea lessened greatly but it was never gone completely. Swimming was my sanctuary.
During this time I was not computer savvy. While I had read about numerous balance disorders; I mainly typed in the same phrase over and over again: “Dizziness while sitting still,” hoping I would come across something. I never did.
In 2004 I started doing 2 different types of exercises each day from a TMJ book that I had recently gotten. One was head circles. The other was looking from left to right and up and down. I did 10 minutes in the morning and 10 minutes at night. These were all done while I stood still. I did not notice any improvement with TMJ pain; however to my amazement and incomprehensible joy I did notice a definite lessening of MdDS symptoms after about 3-4 months of doing the exercises. I did not realize at the time that I was retraining my brain. Unfortunately I did not put two and two together. If I had I would have done more exercises each day. Being able to see, hear, touch, and feel more of the world is something I can’t put into words.
In 2005 I started having short spins. I quit working at two different places that both took about 2 hours to get to. This saddened me as I really enjoyed working at both of these spots. Rearranging my life around the dizziness was nothing new by then so I quickly got over it. I started a new job minutes away from where I lived. I would not let myself drive until I was able to stop the spinning. When the spinning started showing up on my daily walks or while I was running that’s when I had once again had enough. Motion- my only chance for escape and now the dizziness wanted that too?
I went to the bookstore and got a book about dizziness; I read it and felt I had to take a different approach to getting better. I had to understand what tests I had to take in order to better understand what was causing this.
I felt the best when I was galloping Dancer at full speed bareback up and down hills and jumping over logs. The faster I moved and the more range of motion I experienced the better I felt. Overtime I somehow felt her hooves became my feet and her mane was my hair. I felt we were one being. I felt all of my connections to the world were gone, however I felt I was still connected through Dancer.
I decided I would do the caloric test but only if air was used. Doctors I had visited in the past had only mentioned use of cold water. I did not know that there was the option of using air until I read the book. In the past I avoided this test for my own reasons which were very clear to me; Doctors did not know what I had, they did not know how to help me, they usually told me that if I had what they thought I had then they would not be able to help me anyways and all of them told me that the caloric test could make my symptoms worse. However avoiding this test was not helping my situation.
At my new job the managers said to me several times; “you need to make eye contact with the customers.” I had heard this before from previous employers. When I asked why, one of the managers replied, “Because it scares them if you don’t.” But I couldn’t look people in the eyes. This caused severe nausea. I always looked over peoples’ shoulders for balance as they spoke to me. I never told any managers or coworkers about my balance problem because I didn’t have a name or diagnosis.
Then in 2006 I went to Ear Associates. They ran all of the tests on me; hearing, ENG with caloric (they used air), and posturography which all turned out normal. Based on all my tests which showed normal vestibular function, along with my history and symptoms they diagnosed me with Mal De Débarquement Syndrome. They told me that my symptoms were caused by my central nervous system. I’m very thankful that I was correctly diagnosed and that I actually know the name of what I have been suffering from. I have felt really great for the past 5 years.
Dr. Maw said that I also had cervical vertigo which was causing the short spins and migraine induced vertigo which was causing the major nausea whenever I had a migraine. They told me that they believe that TMJ pain does not cause dizziness. They said that the posturography test showed that I had great balance and then they asked me if I wanted to try Vestibular Therapy and also see a chiropractor. I said that I would like to try the chiropractor first. I went to a chiropractor twice a week for a few months. They massaged my neck and shoulders. My jaw pain became worse and I noticed no improvement in my MdDS symptoms. I stopped going.
After that I started Vestibular therapy. I did and still do the majority of the exercises while standing. I have never tried any medication for the MdDS or other diagnoses. I didn’t need to. Vestibular therapy did something miraculous to my brain.
While I will never get in a boat again, I have ridden horses again and I’m happy to say that I have felt fine afterwards. I want to travel more than anything however I’m not ready to take a chance with airplanes yet. I have not sat in a rocking chair for the last 5 years. Barbeques and bonfires are out.
When I walk along the coast I avert my eyes from heat waves that are always rising off the sand. I don’t let myself look at it. Not even for a second.
In 2010 I had upper and lower jaw reconstruction surgery due to severe malocclusion. I had a severe overbite. Overbites can also cause sleep apnea. I was diagnosed as having mild sleep apnea a few days prior to the surgery by a sleep specialist after I underwent an overnight sleep study. My oral surgeon told me that the malocclusion was causing extra pressure on my Temporomandibular joints. I had not been able to talk, eat or smile without reoccurring pain. The oral surgeon told me that he believes that TMJ pain does not cause dizziness. I’m glad that I had the surgery because I felt that the MdDS originally began when it coincided with TMJ pain. The misalignment was also causing tightness in my neck and that was causing the cervical vertigo.
I wore braces for a total of one and a half more years: my teeth were in the wrong position for the placement of where my new bite would be. The surgeon also cleaned out my sinus cavities because I was diagnosed with chronic sinusitis a few months earlier after undergoing a CT scan. After the surgery I had upside down spinning every time I lay down. I knew right away what was causing it because in the past I had read that dizziness or spinning right after dental work is a lot of the time caused by Benign Paroxysmal Positional Vertigo (BPPV). After 4 months I was diagnosed and then cured of BPPV. The Ondansetron that the oral surgeon prescribed for the surgery helped reduce the nausea from the surgery and the BPPV a lot. I had to wait a while before going to Dr. Maw because a vibrating motor was used on the side of my face to dislodge the crystals– not a good idea right after surgery. Also, I can’t use the balance roll anymore to relax my jaw, neck, shoulder, and back muscles or it brings back BPPV symptoms. I also can’t tilt my head up or down very far while I’m standing or I will feel off balance for weeks.
I still can’t eat or drink anything that is cool or cold; otherwise I get what feels like strep throat. I have to heat everything up. This problem started about 10 years prior to the surgery.
I’m very sensitive to strong chemicals like paint, spray paint, and floor wax, and things like mold and of course cold weather. I stay far away from these things. I make sure that I always have good posture and I don’t allow myself to lift heavy things because I know from experience that this will cause tightness in my jaw and neck, shoulder, and back. I have to wear a winter hat even in the summer months or else I will have bad sinus congestion. I meditate each day which I really enjoy; it reduces a lot of anxiety. Getting enough sleep is really important for me. I make sure that I get a complete and well balanced diet. High doses of Vitamin C make me feel better. I can’t listen to loud music or anything that I perceive as loud, which is “normal” to most people. I have to avoid bright lights. If I let myself slack on any of these things then later when I try to sleep I will have tinnitus. It’s a loud waffling noise and it brings the dizziness back.
Even though the exercises have helped me with balance, for the past 3-4 years I have had to wear layer upon layer of jackets and sweaters in order to feel a modicum of comfort. I’m always cold. Prior to the surgery I wanted to find out where this “cold” was coming from. I certainly did not want to go through surgery with a compromised immune system. So again I underwent a battery of doctors and blood work. I saw several endocrinologists because I thought I might be cold because of thyroid issues. The endocrinologists told me my thyroid tests showed normal. I found out later online that the American Association of Endocrinologists had a different TSH standard than most doctors and labs are using. The doctors are using a standard that should have been changed 10 years ago. According to the American Association of Endocrinologists, my TSH results show that I’m not normal. I’m Hypothyroid. After about 6 months of thyroid medication the general hyperhydrosis that I have had for the last 3 years has for the most part been gone. For the last 3 years I would have to change my clothes 10 times or more each day. Sweat would pour down my back and whole body. It felt just like a shower. Wearing soggy cloths all the time is very uncomfortable. I’m so glad it’s gone now. The coldness however is not. I will continue to search for the answer.