My name is Mickie Agee and I live in Nashville, Tennessee. For our 40th Anniversary, my husband Mike and I treated ourselves to the most fabulous 12-day cruise we could imagine, a cruise to the Holy Land! It was our fifth cruise, the first four without any episode whatsoever. There was no indication that anything out of the ordinary had affected me until the day we arrived home.
The first day at home I drove. At first all was well, until I stopped at a prolonged red light and turned my head and lost all perception of where I was. I didn’t know if I was in my lane or another. I was terrified. My first thought was that I had an inner ear infection.
When I arrived home I began to feel like I was on a raft in the middle of the ocean, rocking, swaying, and bobbing. I had never had this feeling before. I took lots of Meclizine and when it didn’t affect me, I made a doctor’s appointment. She gave me an antihistamine and told me to call back in two days, if I was not better and she would refer me to an ENT.
When I was much worse a few days later and the antihistamine did not help, I was referred to an ENT, Dr. Justin Morgan. He did many tests. He then told me that he was quite sure that I had a syndrome called Mal de Debarquement Syndrome, MdDS. He described the condition and then he wrote the name down and the web address of the MdDS foundation for me to research. He said it may last only a couple of more weeks, months, years, or the rest of my life. I looked at him in disbelief!
First, Dr. Morgan wanted me to have a brain MRI; if that was clear, as he expected it to be, he wanted me to begin Vestibular PT. He also referred me to the most well-known hospital in Nashville for balance testing and to their Neuro department so that I would be with experts in the field. He stated he knew about MdDS, but he was not an expert. However, I was so lucky to have found such a knowledgeable ENT in such a short time, at one of the smaller Nashville hospitals. Dr. Morgan knew it would take time to get an appointment, so he set up a return appointment to see him and a prescription for Valium. My thought was, “You don’t know me, I’ll be well before my next appointment.” WRONG!
I looked up the MdDS website and BINGO! EVERYTHING LISTED WAS EXACTLY AS I FELT. My rocking was so severe, I could not stand without stumbling. I went out with my friends for lunch; the next day one of them arrived on my doorstep with a cane. She told me I scared them to death, and to please use the cane to keep from falling. The cane became my constant companion for 12 months; without it, I had many falls.
Even though it felt so good to ride in a car because there was no rocking, swaying, and bobbing, I could not drive. When I turned my head to look out the side window I would become disoriented and I would lose all perception of where I was.
My brain MRI was normal, as expected. I then went for balance testing. The Neurotologist agreed it was MdDS, but since this was not his expertise he referred me to the Neurology Department where supposedly they had experts on MdDS. When I went to the doctor who was supposedly the MdDS specialist, she asked about my headaches. I said, “I don’t have headaches,” she asked, “Why are you here?” My reply was that I had been diagnosed with MdDS. She asked, “What is that? I have never heard of it.” I wanted to cry, and told her, “I was told you are the expert here for MdDS.” She said she would do some Neuro tests so that she would be able to refer me to a hospital anywhere I wanted to go that had an expert in MdDS since they did not have an expert. Among other things her tests proved I could not stand without a cane, and my cognitive skills were very poor. I couldn’t even remember three simple words less than a minute later.
Using the MdDS symptom scale I was an 8-9 at all times. My level never lowered regardless of what I was doing. Even while in the bed, I had to grasp the sides for fear of falling out. I would finally fall asleep when I was totally exhausted. I was in the bed at least 14-16 hours a day.
From there I went to another prestigious hospital in Nashville, to an expert listed on the MdDS website. He did see me, confirmed MdDS, but he no longer treats patients with MdDS and for the fourth time I was told, “You do know, there is not a cure for MdDS.”
My world suddenly crumbled. My hope and faith were quickly dissolving.
During this time, I had been going to Vestibular Rehab PT at the smaller hospital where I found my ENT, Dr. Morgan. The final blow was in December 2013 when my Vestibular PT told me, being very honest and concerned, she just didn’t know what else to do with me; she had never worked with someone so severe. She had only worked with a few MdDS patients, and she had done everything she knew, but I just wasn’t making progress. My eyes and ears were just not cooperating with my brain.
BUT, she gave me the greatest advice during this whole ordeal. She told me if anyone could help me, she knew who it was. It’s who she had learned about MdDS from at conferences. This person had taught classes to PT’s all over the United States. She was founder and director of the Vestibular Rehabilitation and Balance Retraining Programs at the Atlanta Ear Clinic and had worked with over 20 thousand vestibular or balance patients, including MdDS. She wrote down the name of Dr. Gaye Cronin and how to contact her.
My symptoms never went away. They were with me constantly, 24/7. At this point in time, I could no longer cook. I had burned myself too many times. My rocking and swaying were so severe that when I stirred food, I just sloshed it all over me, the stove and the floor. When I moved a pot from one burner to another, it often landed in the floor. I would try to pour a simple glass of tea, it never went in the glass. Even with a cane, I still fell so many times. The worst was one day when my husband stopped the car for me to get out before entering the garage, I fell out. Not having the car in park and forgetting his foot was on the brake, he looked over, didn’t see me, in a split second he jumped to find me and I saw the tires rolling and I barely was able to jerk them out or they would have run over my legs.
We have a swimming pool, which was one of my loves. One day leaves were in the pool, so I got the long net to get them out. The swirling water seemed so calming, just like riding in a car, until suddenly I started rocking so violently, I barely missed falling in the pool; instead I hit the concrete. My symptoms were so severe I stayed in the bed the rest of the day. I got in the pool once that summer for a short time with the grandkids, but Mimi, an excellent swimmer, had to wear a life belt, and still my reaction to the swirling water made it a nightmare. My parents’ home is on a lake. I grew up water skiing from the age of five and participating in all kinds of water sports. I was always around water. “What could possibly have happened to cause this?”
The things I had loved and taken for granted now became a nightmare: picking up grandkids, rocking the babies – I dropped everything I picked up so this was no longer possible; just sleeping, without the feeling of constantly falling out of the bed; driving whenever I wanted, I was suddenly dependent on someone to take me anywhere I wanted or needed to go. Here I was a teacher of 36 years and retired as a Reading Specialist, teaching children that had difficulties, how to read and now my cognitive skills were so impaired I could not concentrate, comprehend or even keep up in a conversation. I constantly lost words; I developed migraines after onset and the headaches constantly put me to bed. The fatigue was so severe my average seven hours of sleep became 14-16 hours just to function at all. I could not go into a store because the bright lights caused confusion and disorientation. Luckily, I am retired, because there is no way I could have worked in this condition.
I became so desperate and helpless. Why was my life as I knew it taken away? I had joined the MdDS support group and I would read posts where people would say they may have MdDS, but they were not going to let MdDS take control of their lives. I wondered, “ How do you get to that point?” Here I was 63 years old, had lived a wonderful life, but when I read messages from the young people with small children finding it impossible to work, my heart would break even more for them. Many would go to doctors who thought it was psychological. For months they thought they were going insane. At least I only thought I was insane for about a month until I found Dr. Morgan who supported me and assured me this monster was real!
Why can’t someone find a cure for this horrible monster of a syndrome? It is not new. There has been a reference to this syndrome since 1796.
The day my life turned around was the day I had my first appointment with Dr. Gaye Cronin for Vestibular PT. I had to be driven four hours from Nashville to Atlanta which the long drive is a “No, No” from most doctors, but it was my only hope at getting a grip on the bizarre disorder. I take a low dose of Klonopin 30 minutes before each drive, stop halfway, eat and walk around, and I spend the night before my treatments so the drive does not mask my symptoms.
This was the best decision dealing with MdDS that I made. Dr. Cronin thoroughly evaluated me, gave me the hope, encouragement, and compassion to deal with this bizarre syndrome that I so desperately needed.
From testing, she immediately realized I had nystagmus, which was the cause of my problems with my eyes and vision. If the first hospital realized it, it was never mentioned. Nystagmus is not normally a symptom of MdDS, but was playing havoc in aggravating my symptoms of MdDS. I feel sure it was responsible for my not being able to drive, as well as the disorientation and double vision when in bright lights.
From that first day with Dr. Cronin, I knew I was going to make it. She believed in me! Whether I might find remission, a cure, or live like this the rest of my life, I finally knew I was going to learn to deal with it and accept it. She was going to make sure of that!
We worked through my ENT, Dr. Morgan and my PC with my medications. With Vestibular PT, Klonopin, and Gabapentin, my symptoms were usually lowered to around a 5. I continued my Vestibular PT with Dr. Cronin from February 2013, once a month, with daily exercises. In July I spent a lot of time researching what was going on in the research studies of MdDS. At that time, Dr. Cronin and I discussed more options that were now available. I applied to research doctors working on a cure for MdDS. I applied to Dr. Dai at Mt. Sinai and Dr. Cha at LIBR on the same day and I decided that I would go for treatments to whomever accepted me first. My treatments with Dr. Dai were scheduled for September of 2014.
I was in Atlanta overnight for treatments [please clarify: treatments for what] in August when my daughter called. She said, “Mama you are not going to believe this. I just opened my computer and it came up, ‘Eureka Medical Alert: New treatment successful for the Mal de Debarquement Syndrome.’* Mama, it is at Mount Sinai Hospital with Dr. Dai. Isn’t that the doctor you are going to have treatments with, his research has just been published and it was a success?” We both laughed and cried at the same time. I had peace and knew everything was going to be ok.
My story with Dr. Dai was incredible!
Day 1 – Dr. Dai was with me for about 2 hours, asking questions, evaluating my symptoms, etc. My symptoms after my flight and without my medication were very severe; I was about an 8-9. He said that I was one of the most severe he had seen and suggested I stay for five days of treatments instead of the planned four. The first treatment I was in the “chamber” for only 3 minutes. When I came out, I could not believe the difference. I walked out without my cane. I was barely rocking, no swaying, no bobbing. He put me back in for 30 seconds. I came out then and felt no rocking. It was unbelievable! Dr. Dai clapped and my husband and I had tears running down our cheeks.
Day 2 – When I woke up I could not believe how well I felt. His instruments proved just a tiny bit of swaying. I was put in the chamber for about 3 minutes. I was barely swaying to the right. He put me back in for 20 seconds. My sway changed to the left, so he said that was enough for one day because I was so sensitive to the treatment.
Day 3 – I arrived at the hospital feeling even better. I could not believe I actually felt normal, or whatever normal used to be. He actually asked if I could change my flight and go on home, but the flights were booked. So he told me to continue to come through Friday to make sure all was still going so well.
Day 4 – I awoke, dizzy. He was not overly concerned. He stated that dizzy, where you feel your body or head are moving around in a circle is not normally MdDS, it is a type of vertigo.
Day 5 – I was still dizzy. He did about a 3 minute treatment and told me to go out to Central Park and walk a lot and to come back in a couple of hours. I went back into the chamber. It seemed to have calmed the dizziness. We went out to lunch and celebrated! I could not believe the drastic change!
Dr. Dai’s treatments are very precise, determined from the exact calculations he makes of each individual person depending on each of his daily evaluations.
The day we were leaving to fly home, I awoke once again dizzy, but he had already warned me not to worry; stress is the #1 trigger for a relapse of MdDS. He felt that the dizzy sensation would go away. Since I am one of those that have found success with Vestibular Rehab PT, he told me my Vestibular PT, Dr. Cronin should be able to fix the dizziness, if it continued.
Even though I have had NO rocking, swaying, or bobbing since my treatments with Dr. Dai at Mount Sinai, I did not want to announce I was in remission until the dizziness was gone (whether or not it was a remnant of MdDS or something else had yet to be determined.) It was found that I had a damaged inner ear of undetermined cause, which is the most likely cause of the dizziness. The dizziness, which is not normally associated with MdDS – head vertigo spinning, has now been gone for seven weeks. It has now been 6 ½ months since my treatments with Dr. Dai. Today, it has now been 18 months since my onset of MdDS. There are no words to express my excitement to be able to say that I AM IN REMISSION!!! and even POSSIBLY CURED! Words are inadequate to express how I feel after living through this nightmare!!! I hope that this message gives some Hope to others.
Dr. Dai could not be more compassionate and determined to help us with this bizarre syndrome. When I have a concern, he is only an email or call away. I have been in touch with him this week. He assures me that if I have a relapse, he will be there for me.
I want to thank: my ENT, Dr. Justin Morgan for first diagnosing me and then giving me information, advising me to immediately get in touch with the MdDS Foundation; the MdDS Foundation for the dedication, support, knowledge, and awareness they have given me along with the support and help of this support group they have made possible; Dr. Gaye Cronin, my faithful Vestibular Rehab PT doctor which was the first doctor to give me the encouragement, concern, compassion, and Hope that I would make it through this and continues to help me with my inner ear damage, nystagmus, and migraines; Dr. Dai for the brilliant research to which he has dedicated his life in finding a cure for MdDS and for giving me my life back; my family and friends for their continued prayers and support to lift me up, especially on the days I didn’t think I could make it.
I will continue to pray that someday soon the research doctors will work together to find a cure for all, regardless of the amount of years suffered and the source of onset of this most horrible, debilitating, bizarre syndrome that no one can possibly understand until they have had to live it.
I hope this message gives you HOPE. Believe me, on my darkest days, I admired so many of you who had suffered for so long and how you responded to the group. I just didn’t know how you did it and how I would survive. But your support and inspiration kept me going, and my faith and hope have brought me to this day I have constantly prayed and dreamed for.