Mickie’s Journey from Mal de Debarquement Syndrome to Disembarkment

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mickieagee

This picture was taken aboard the ship the night before my horrible, debilitating, syndrome began.

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.

Mickie
12-day cruise

*It is important to note that the phrase “New treatment successful” should not be interpreted as guaranteed success. In fact, the success rate is significantly less than 100% and the permanence is also not 100%.

About MdDS Foundation

The mission of the MdDS Balance Disorder Foundation is to promote education and research on Mal de Débarquement Syndrome. We are dedicated to finding the cause and cure for MdDS.
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71 Responses to Mickie’s Journey from Mal de Debarquement Syndrome to Disembarkment

  1. 01mom04 says:

    Thanks for sharing your story. I am interested to read up more on the chamber treatment you received. I first was diagnosed with MdDS 5 years ago after a cruise at age 35. Thankfully 2 months later I went the ENT and he was familiar with it, which I’ve found isn’t always the case. I responded well to diazepam and after a week it was gone. I have since cruised again and take diazepam daily during the trip and that has helped reduce the symptoms tremendously. However now it’s not just cruises that trigger it for me. Airplane rides and long car rides where I am not driving will trigger it. Currently dealing with it from a car trip 3 weeks ago. Going back to ENT next week. i was wondering how do you explain to people what you have? Thankfully I have a very supportive husband but others think I’m crazy when I try to explain my rocking and bobbing to them.

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    • Mickie Agee says:

      Thank you for your kind words. You and I were very fortunate in that we were diagnosed so early. Many people go years before a diagnosis because there are so few doctors that are aware of MdDS, even though the Navy has known about it since the 1790’s. We have a fabulous MdDS Foundation that works diligently to spread the word and the knowledge of this horrible, debilitating syndrome.

      The simpliest way I have explained MdDs to my friends (in my particular case) is that I went on a cruise. When I left the ship, my brain wanted to stay on the ship. My brain wanted to be in constant motion. I felt like I was on a raft in the middle of the ocean, rocking, swaying, and bobbing, never ceasing. It was explained to me that while asleep at night, the ship actually reset my brain. For that reason, the only time I felt no symptoms was when I was riding in a car. The car was putting my brain in constant motion, as it wanted to be.
      The treatments that I received at Mt. Sinai with Dr. Dai, in his chamber was to reset it back to think I was back on stable ground.

      You are very fortunate that you have been able to go on more cruises without devastating results. I have been strongly urged to never step foot on another boat of any kind. As I explained in my story, I grew up around water and boats at a very young age. I went on four cruises with no episodes, why this happened on the 5th is the mystery of MdDS.
      The following two links explain Dr. Dai’s research and his use of his chamber. I have now been in remission of MdDS since September of 2014.

      http://www.mountsinai.org/about-us/newsroom/press-releases/new-treatment-successful-for-rare-and-disabling-movement-disorder-the-mal-de-debarquement-syndrome-mdds

      http://journal.frontiersin.org/article/10.3389/fneur.2014.00124/full

      I wish you the best! Mickie Agee

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      • Simon Mason says:

        I had 30 years’ experience of sailing on ferries including being in force 11 gales and have never had a problem with it. However, in June 2012 I stepped off a Rotterdam – Hull ferry and felt as if I was still at sea. I expected it may last a day or two, but after a months it was still there. I became worried as even walking in a straight line was difficult. I spent hours walking around wondering what was going on. It not only affected my gait, but my brain as well. As I worked as a Laboratory Analyst accuracy was very important to me but I found that even the simplest of tasks was now beyond me. I then had thoughts about where this would lead as I now knew I had MdDS and there was no cure. I had thoughts of losing my job, home and everything I had worked for for 40 years. Suicidal thoughts began to take over and so on 9 SEP 13, I jumped off a bridge and was run over by a 44T truck. I woke up in intensive car e and spent 4 months in hospital, followed by 8 months in bed at home, but the suicidal thoughts were still there as my sick pay would run out on 9 SEP 14. In the end, I was able to retire at age 56 and pay off my debts, and the suicidal thoughts gradually went away. I had no MdDS at all any more and have been on 4 ferry trips since and it has never come back. We have booked a cruise to Russia next year as I am not afraid of it returning again

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      • MdDS.BDF says:

        Thank you, Simon, for sharing such a personal story with us. MdDS has sent others down similar paths, and we are happy you are still here with us.

        We encourage all to please reach out for help when things become unbearable. In the US, you can call the National Suicide Prevention Lifeline at 1-800-273-8255.

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      • Mickie Agee says:

        Simon,
        My thoughts and prayers are with you. I am so sorry for all you have been through, but so thankful you are now doing so well. There are no words to describe this horrible, debilitating syndrome, unless you have experienced it. Like you, the “brain fog” was one of my worst symptoms.
        Please do be careful on your cruise. I personally am afraid to ever step foot on another boat, and I do love to cruise.
        Take care, Mickie Agee

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  2. Angela says:

    I got off the Carnival Magic on Sunday, March 27, 2016. This was my third seven-day cruise that I had been on. The first being in 1991. All three I wore a motion sickness patch behind my ear. The second cruise was last year (2015) in March and was a very calm cruise and I experienced nothing but a few days of wobbling. This year when I got off the ship I did not experience anything on Sunday at all but then on Monday morning I woke up and went into the bathroom. Being in the bathroom as well as being in the shower caused me nausea and a feeling of dizziness. When I returned to work on Tuesday, While I was driving home, I didn’t fell anything while I was driving. I felt as if I was a pendulum swinging counter clockwise when I attempted to sit still at my desk or stand still when talking to co workers. I had a sensation in the back of my head that felt like dizziness and a sensation of nausea almost continually. I would get dizzy when moving my head quickly like when I would drive and look over my shoulder at my blind spot and then turn my head back and also when bending my head down like to cut an onion. I also felt completely tired and wiped out after working all day and couldn’t wait to get home and lay down. I am a woman and 47 years old.
    I thought this would go away and after ten days I googled “still dizzy after ten days of being off the ship” and several links came up for the Mal de Debarquement Syndrome (MdDS). I had never heard of this before. I was surprised to see that it seems to affect women between 40-50 more than any other population. I continued to read as much as I could. I read about the Mount Sinai treatment and also read about a gentleman that was fixed after going to a loud concert with his daughter and his theory was that he was reset after having to adjust to loud music for a long period of time. I had an idea on Sunday, April 10. I thought about finding an old playground merry go round; the metal ones that someone spins you on. I thought if I had someone spin me in the opposite direction of my clockwise spinning sensation that maybe that would reset my balance. I will be first to tell you I am way past my days of spinning on a merry go round and liking it or even riding rollers coasters but I was willing to try anything if it would work. So, that afternoon my two sons and I went to a park with an old metal merry go round. I got on the merry go round and my sons spun me as fast as I could take and still be able to hold on. They spun me counter clockwise for about five minutes straight. I did a series of different things with my eyes. At first I looked at everything spinning around me; then I fixed my eyes on my son each time I spun around and would see him; then I closed my eyes and spun for a couple minutes with them closed; then my sons stopped me and one son got on the merry go round and I looked at him while my other son spun us. After approximately five minutes of spinning, I got off and I did not have the sensation in the back of my head or the nausea sensation and I was able to walk normal. It seemed to have worked and I was so happy that I felt so good right then but I was skeptical if would continue to work. Well, today it is 4/20/2016 and it’s not returned. I know this sounds odd, but it worked for me so I wanted to share this with others. I could not imagine having this sensation for longer than the two weeks I did. It would have driven be completely crazy.

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    • Mickie Agee says:

      Angela, your experience is amazing! I certainly hope and pray that your symptoms do not come back MdDS is truly one of the most devastating syndromes that anyone can have. As you know, unless you have experienced it, there are really no words to describe how debilitating it is to feel you are constantly on a raft in the middle of the ocean rocking, swaying and bobbing with no relief. I totally understand when you said that you would have felt crazy if you had had it more than two weeks. I have talked with many that have had it for 15-20 years, I just can’t even imagine the frustration that they are living with.
      I’m not sure how much you have read about the exact treatments that Dr. Dai at Mount Sinai uses, but there are similarities to what you did on the merry-go-round. He places you in a chair in a chamber. Optokinetic stripes reflect on the chamber wall. Even though you are still, you perceive you are moving in a circle around the chamber. Depending on the direction that your body feels it is moving, the stripes go to the opposite direction, which is what you did on the merry-go-round.
      We have a fabulous MdDS support group. If you happen to be a member, please share your experience. If not, with your permission, I would love to share your story. Who knows, someone else could possibly have your results! I am actually in touch with Dr. Dai frequently, I received an email from him yesterday. I will mention your experiment to him! I would love to know if your results continue. I certainly pray they will. My best advice to you is to never get on another boat. If you are susceptible to this, the next time you may not be able to come out of it. Believe me, I will never step foot on another boat!
      Take care, Mickie

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      • Angela says:

        You can most certainly share my story. Reading about the treatment at Mount Sinai is what gave me the idea. I was hoping that posting it may give people another option to try. Today is April 24, 2016 and I’m still not having symptoms after spinning on the merry go round. I have an occasional sensation in my head but it’s quick and doesn’t cause me any nausea. I was thinking of going back and trying it one more time to see if it would make that occassion whoosh go away altogether.

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      • Cheri Howard says:

        Hi Mickie
        My 23 year old son has suffered for over a year now. I cannot figure out how to get an appointment with Dr Dai? Any help you could give me is appreciated.
        Thanks
        Cheri

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      • Mickie Agee says:

        Cheri,
        The MdDS Foundation has included all of the information and a link to email Zelinette in their message to you.

        If you want to go for treatments, the following is the direct info and address to where you get your intake packet . Just call or email Zelinette La Paz, Dr. Dai’s patient coordinator, and she will email it to you. She is located in a different building, but is only 2 doors down the sidewalk from him when you are outside on Madison Avenue. She is the person that sets up all the appointments and will gladly answer specific questions.

        Zelinette La Paz, Patient Coordinator
        Icahn School of Medicine at Mount Sinai
        Department of Neurology
        1468 Madison Avenue
        Annenberg Bldg 2nd Floor
        New York, NY 10029
        Phone: 212-241-2179
        Fax: 212-987.3301
        Email: zelinette.lapaz@mssm.edu (in case Yahoo deletes part of the email I will spell it out: zelinette dot lapaz at mssm dot edu)

        Take care and I pray you find help for your son.
        Mickie Agee

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    • Matt says:

      Hi Angela,

      I happened to be on the same cruise ship with you and have been struggling with symptoms for 1 month (today). My symptoms are rocking, swaying, bobbing, with pressure in my face and head. Carnival Magic was my third cruise and I wore a patch the whole week with no issues. I haven’t had any issue with past cruises. I have had a hard time figuring out which direction I am going, but when I do the marching test with my eyes closed, I rotate right. After coming across your post today, my wife took me to a school playground where they have a spin toy for only one person at a time. I had her spin me left or counter clockwise. I had my eyes open and then closed. I don’t do well with spinning in the first place as I am 44 now. Seems like in the late 30s/early 40s, I became really sensitive to motion. Anyway, I had a very hard time with the spinning. I am not sure I replicated your treatment very well as I couldn’t have anybody on the spin ride with me. I walked away feeling awful from it. I may try it again, but how important do you think it was to have someone on the ride with you that you could focus on? Did you feel sick while spinning. Also, when you had symptoms, did you have swaying? If I stand still, I can feel my body moving slightly forward and backward. As I type this reply, I can still feel the pressure on the right side of my head. Sounds like it immediately fixed you and I was hoping for that, but I don’t think it has yet.

      I am really happy for you that the problem is resolved!!!

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      • Angela says:

        I’m thinking maybe the larger spin of a regular merry go round would work better than spinning a tighter spin as you described. I’m not sure which is any of the things I did with my eyes and focus worked for me. I just was trying everything I could think of to try while we were there. My sons are 19 and 14 and spun me very fast. Yes I did have terrible swaying. When I was at work I told my coworkers that I felt like I need to sway left to right and when I tried to sit still I got that sensation in the entire back of my head and the feeling of nausea. My body didn’t like sitting still and at the end of the day it may me feel so drained. And it was hard to focus which also drained me by the end of the day. As of today my symptoms are still gone. Thank the Lord. Like I said I couldn’t have imagined continuing with those feelings. Maybe another thing to try is spin slowly on a regular merry go round. I also don’t like spinning at all and probably would have lost my lunch if I had done the merry go round before the cruise. But it did work and I’m just so very thankful it did. I know how you feel and I would do at suggestions that are feasible to try and see if it works for you. I read about a guy who suffered with this and went to a loud concert wth his 17 year old daughter and the loud music for a few hours reset whatever needed resetting for him and it went away. I was going to do that next if the Merry go round didn’t work.

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  3. Adena Compton says:

    HI Mickie, I apologize for not reading the whole story because it is too bothersome, but I got the jist that you are in recover! Hooray! I have a question…
    Did you use Magnesium? Whether intravenously or trans-dermal application?
    thanks

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    • Mickie Agee says:

      Adena,
      No, I did not take any form of magnesium. I have now been in remission for 15 months. I give full credit of my remission to prayers, Dr. Gaye Cronin, my vestibular rehab doctor, and my treatments with Dr. Dai at Mount Sinai in New York. I actually went into remission while at Mount Sinai having treatments with Dr. Mingjia Dai in September of 2014.

      Best wishes, Mickie

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  4. Pingback: 23 years without answers. Not anymore. | MdDS Foundation Blog

  5. Kris says:

    I loved your story thank you for telling it. I was beginning to feel hopeless. I dont have MdDS, I have cervical vertigo. I had to read your story to the end……I spin in small circles or rock side to side or back and forth. I hate it. I turn my head a little and I feel what I call a whoosh. I did vestibular therapy and use a card at hom to do the neck eye exercises. I have found that with the therapy I have made some improvements. My neck hurts much of the time and Ben Gay is my new “friend.” I take advil. I also have fibromyalgia. I would get neck and shoulder pain almost daily even before the vertigo began. Your article gives me some hope that perhaps in my lifetime they may come up with a cure for this. I cannot take drugs they say let my brain do the work. So I basically suffer daily with this. I feel useless sometimes because I cannot do many of the things I once did…..just lie you said. I also get tingling in my upper back and neck sometimes. They have tried posture training along with strengthening of many muscle groups. I stil lhave it. I am crossing my fingers…..and praying often that we all can have a cure for this dreadfulness however we experience it. Best of luck to you! 🙂

    Like

    • Mickie Agee says:

      Kris,
      Thank you for your kind comments concerning my story. I am so sorry that you are suffering so. I had never heard of cervical vertigo until your response. I then googled it, and was shocked at all of the symptoms and sources of pain that it causes. The HOPE that my vestibular therapist gave me that kept me going was that when you improve, no matter how small, and things begin to change from the therapy, then that is good. That means that things can continue to improve. When there is never a change, that is when there is more reason for concern.
      Since you are making some improvements, then that should be a good sign, and we will pray that it is!
      Earlier on I went back and forth about medication. Some doctors said to do without and let your brain heal on its own. But then I had a neurotologist that told me that if it was my heart then you would not hesitate to take medication. So if there is a medicine working between your brain, eyes, and ears that helps your pain or symptoms, you should not be afraid to take it. Just take the dosage recommended by your specialist. In the beginning, that is when I started taking Klonopin and gabapentin and my symptoms were greatly relieved.
      NEVER give up HOPE. I know I was so lucky in my timing. Dr. Dai had just finished his research but his results had not been published. I made an appointment with him and the very next week his results were published stating he had found success with MdDS. As you know, my results were incredible and 14 months later I am still in remission. I was determined to leave no rock unturned and it paid off.
      I pray that you too will find relief from your dreaded illness. It only takes that one dedicated doctor to find a cure and make a difference in so many lives.
      I will be praying for you. I definitely had lots of prayers warriors during my journey.
      Mickie Agee

      Like

  6. Pat Meisch says:

    I have had MdDS for 28 years which began at age 49 in 1988. I went to Mt Sinai Sept 28 -Oct 2 in 2015 and had the treatments by Dr Dai. They did not result in any help for me.

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    • Mickie Agee says:

      Pat, I am so sorry that the treatments did not work for you. I have heard that the longer you have MdDS, the brain is that much harder to “reset.” I personally feel that my incredible success had to do with me being able to go to Dr. Dai exactly one year after onset and that my symptoms were so high when I arrived for treatments. Because my symptoms were so high, he was able to measure exactly what my body was doing in order to treat me.

      My thoughts and prayers especially go out to you, I cannot imagine having MdDS for 28 years. But please do not give up HOPE! The syndrome was acknowledged in the 1790’s and it has taken all of these years to find any success in treatments. There has been considerable success in the past couple of years. We just have to hope and pray that this success continues and remission will be “around the corner’ for all causes of onsets and regardless of length of time.

      Take care,
      Mickie Agee

      Like

  7. Shahriza Ali says:

    Mickie,
    Thank you for telling your story. I am incredibly grateful to have read it and now don’t feel completely alone when dealing with terrible disorder. I have been suffering from MdDS since November of 2014 and finally received my diagnosis today! My Otolaryngologist, Dr. Jane Lea, here in Vancouver, Canada suggested that I look into Dr. Dai’s research and treatment. Can you please tell me how I can get in touch with Dr. Dai?

    Again, I appreciate you taking the time and effort to share your story. It does, indeed, give someone like me hope and comfort. I am incredibly happy for your recovery and also pray that I awake from this “nightmare” one day soon.

    Thanks,

    Shahriza Ali

    Like

    • MdDS.BDF says:

      Shahriza there is information on this blog (currently pinned at homepage top) with instructions on contacting the team at Mt. Sinai School of Medicine. That is what you are looking for. https://mddsfoundation.wordpress.com/2014/11/01/mount-sinai-school-of-medicine-vor-readaptation/

      Like

    • Mickie Agee says:

      Shahriza Ali,
      Thank you for your kind words! I know it has been especially hard for you to go nine long months before receiving a diagnosis for this horrible, debilitating syndrome. I am sorry that you have it, but so glad you finally know what it is and that now you can go about finding help. “Kudos” to Dr. Lea in knowing about MdDS. It is amazing how few doctors know about this syndrome.
      To contact Dr. Dai you go through his patient coordinator:
      Zelinette La Paz, Patient Coordinator
      Icahn School of Medicine at Mount Sinai
      Department of Neurology
      1468 Madison Avenue
      Annenberg Bldg 2nd Floor
      New York, NY 10029
      Phone: 212-241-2179
      Fax: 212-987.3301
      Email: zelinette.lapaz@mssm.edu
      (In case Yahoo deletes the end of the email address as it usually does, I will spell it out:
      Zelinette dot lapaz at mssm dot edu
      Zelinette is very helpful in answering any questions you might have. Do not hesitate to call or email her.

      You may find it very helpful to join our MdDS Support Group. It is a closed group to only those with MdDS or family members. You can ask questions to those that know exactly what you are going through and find answers from compassionate, caring people, or you can just read the conversations that come up day to day. You will not feel alone with the group support. To join the Yahoo Support Group you can send an email addressed to: mdds_supportsubscribe@yahoogroups.com

      I have become friends with a few Canadians in this group. One is actually going to see Dr. Dai next week.

      I will also pray that you awake from this “nightmare” one day soon. Just hold on to your HOPE!
      Take care, Mickie Agee

      Like

    • loismcr says:

      Shahriza… After 2 horrible years with MdDS, I just returned from a week of treatment with Dr. Dai, which helped hugely! You’re right, it is a nightmare, and I feel as if I just woke up.

      Dr. Dai is an exceptionally dedicated and compassionate professional, who customizes the treatment to each individual’s case, regardless of whether your MdDS began after a cruise, or spontaneously, like mine. After my final treatment Friday, my symptoms were down to a miraculous 0.5 (on a scale of 1-10). It’s slightly higher again today, but he also provided me with access to a computer program that will enable me to simulate at least part of the treatment at home.

      I see below that Mickie Agee has provided all the information you need to contact Dr. Dai, but I would be more than happy to answer any questions you might have about my experiences..at Mt. Sinai, and with my specific (and very different) MdDS symptoms. Actually, I’m going to write here in detail about my particular story within the next few days (after I recover from my week away), so hopefully that will help as well.

      Meanwhile, best of luck,
      Lois McRoberts

      Like

      • Mickie Agee says:

        Lois,
        I am so excited that your treatments with Dr. Dai were so successful, especially because you were spontaneous! If you are not on the Yahoo Support Group, I really wish that you would sign up and announce your great news! It will definitely give so many people HOPE, which was my intention in sharing my journey. Dr. Dai has had much better success with cruises, etc, and now that you were spontaneous and it was so successful, others need to hear this. I am so thrilled for you!!!

        You are so right, Dr. Dai is so compassionate and so dedicated. He really has dedicated his life to helping those with MdDS find remission and a cure.

        Take care and be aware of things that can be triggers so that you do not have a relapse.
        I pray for your continued success!
        Mickie Agee

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      • MdDS.BDF says:

        There is an MdDS Symptom Severity Scale published on the MdDS Foundation website. http://www.mddsfoundation.org/symptoms-scale/

        Like

  8. Linda Peddle says:

    I will be heading to Mount Sinai to see Dr. Dai in late August. I am from the East coast of Canada. i wanted to mention, according to my accountant, this is a medical expense and therefore the cost of treatment, hotels, flights and meals, is a deduction on my income tax here is Canada. Perhaps it is the same in the U.S. It is worth investigating!

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    • Mickie Agee says:

      Hi Linda! Last year when I was able to count Mount Sinai on my income tax here in the US, I called and received the publication concerning what could and could not be counted. I was told I could count all of the medical expense, transportation, including mileage, or flight, taxis, etc. I was told I could not count food unless I ate in the hospital (which I did not) and I could only count $50 a night on hotel (which was a joke when we used the cheapest hospital rate for Mt. Sinai that we could find and it ran between $250-$350 per night, each night had a different price.) Adding that with all of your other medical bills for the year, you could only count a certain percentage according to your income. I advise others in the US to check it out and maybe you will be given a different and better answer for this year.

      I know it is a short time until you leave to see Dr. Dai. My thoughts and prayers will be with you and I can’t wait to hear of your experience with the treatments. Once in the US call me if you get a chance!
      Take care,
      Mickie Agee

      Like

  9. Sharon Leyland says:

    I’m not sure how this works, but if anyone besides Mickey goes to see Dr Dai, I would love to talk to you about the results. I, too, am contemplating going. I’ve had MdDS for 5 years. I will be taking my first flight in 9 years on Tuesday and pray it doesn’t bother me. Mickey has my contact information and I don’t mind giving it out but I’m not sure I should post it here. Thank You, everyone for sharing.

    Like

    • MdDS.BDF says:

      If you are a member in our support group/s you may use the search feature to find conversations on the topic. The search feature is full-featured only when using a computer (not a mobile device).

      You may share your contact information within the groups, which are both secure.

      Like

      • Terri Hare says:

        How do i join the support groups? I thought thats what this was. Thank you, Terri Hare

        Like

      • MdDS.BDF says:

        Yahoo! Support Group

        There are two ways to join this private group:

        1. Simply send an email addressed to: mdds_support-subscribe@yahoogroups.com

        2. Go to the support group’s home page at http://health.groups.yahoo.com/group/mdds_support/ and click on the link, “Join This Group!”

        Please note, there is an underscore ‘_’ between mdds and support in the above addresses. It is a required part of the email and URL addresses.

        MdDS Friends on Facebook (Closed Group)

        Maintained separately from the public page (facebook.com/mddsfoundation.org), the MdDS Friends page is a Closed Group and access is by invitation only.

        To request an invitation to the Closed Group, you must have a Facebook profile.

        1. Log into your Facebook account.

        2. Send a Friend Request

        These two groups are managed by the Foundation and are for the sole purpose of discussing Mal de Débarquement Syndrome and related issues. Bulk emails and spam will not be tolerated and persons posting such items will be banned from the group. Members of the groups are not permitted to give out member addresses to third parties under any circumstances.

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      • MdDS.BDF says:

        This is a publicly viewable website. Read more https://mddsfoundation.wordpress.com/about/. The Support Groups are private, members-only platforms. To join, there are two links at the bottom right of this page.

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    • Terri Hare says:

      Hi Sharon,
      Would you please contact me regarding how to get in touch with Mickie or yourself. I have had MdDS for a little over 5 and half years and i am contemplating going to see Dr. Dai because i am trying to wean off rhe medication first and raise enough money to go. I would lome to speak to you or Mockie if possible. Thank you for getting back to me. I would greatly appreciate any communication as soon as possible. BLESSINGS

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    • Mickie says:

      Sharon,
      If you will join the support group (directions here) I think you will find a wealth of support and answers to so many issues concerning MdDS. It is a closed group so only people with MdDS or family members can join. You will find people that are so supportive and caring, and most of all they know exactly what you are going through, because they too have MdDS.

      When you join you can ask questions such as, “Who has been to see Dr. Dai and what were your results?” And those people will answer, plus you can search old messages. Many people that have success leave the group, but their messages of their success are still there. And those that do not have success report their results. Two people went to see Dr. Dai last week and reported their success to the group this week.

      Good luck on your flight! Even though I am in remission, I still take a dose of my benzo I took after onset ( or whatever medicine you take) an hour before each flight to keep from having a relapse. Take care and keep your HOPE! Mickie Agee

      Like

  10. Terri hare says:

    Hi Mickey my husband found your testimony.
    I am desperate I have had severe MdDS for almost 6 years and I am contemplating going to see Dr. Dai because I’m having a hard time weaning off of Clonazepam and don’t have enough money to go for treatment yet Plus yours is the very first success story I have heard regarding this treatment.
    I have been in some very dark valleys and I knew someone who had MdDS and committed suicide because she could no longer cope with this horrifying syndrome. She had tried everything to no avail she did not live however to be able to be seen by Dr. Dai. I do not have an MdDS support group at this time and I would so appreciate if you would email me or call me at […] as soon as possible your testimony has given me a glimmer of hope to keep pressing on
    I just moved to Florida from Hawaiii five months ago in order to be put in the queue at Mount Sinai.
    I would appreciate any details of your experience how you weaned off your medication where you stayed in New York while being treated and details that you could share with me to help me no that’s good .
    My faith is the only thing sustaining me at this time.
    Blessings to you Terri Hare

    Like

    • MdDS.BDF says:

      Terri, your phone number and email address have been removed in accordance with our antispam practices. Mickie reads these comments regularly, and we will send your contact information to her if she wishes to contact you. You are welcome in either of our online Support Groups, or your husband may request membership if you prefer. There you will find others that have been in that dark place, and many conversations about Dr. Dai’s intervention at Mt. Sinai.

      Like

      • Terri Hare says:

        Thanks so much for sending my contact information to Mickie Agee. I pray she will contact me as soon as possible. I am so grateful for this site. Blessings, Terri Hare

        Like

      • Terri Hare says:

        Could someone please tell me how to connect with Mickie Agee? Will she be given my information even if it does not go through the site because of antispam. I am desperate to communicate with her. Thank you. , Terri Hare. ..Severr MdDS sufferer contemplating treatment eith Dr. Dai

        Like

      • MdDS.BDF says:

        Terri, per your urgent request your contact information has been forwarded but you really should join the Yahoo and/or Facebook Support Group. There are many others reporting on their experiences at Mt. Sinai other than Mickie Agee, and you can communicate with them freely there. Links to join are on the bottom right of this page.

        Like

    • Mickie Agee says:

      Terri,
      I am glad that we were able to talk and hopefully I answered many of your questions. I am so glad that you joined the support group. Since the people in the group have MdDS or are family members, they truly understand this horrible, debilitating syndrome that you are facing each day. You will find them to be so caring, supportive, and compassionate. When you ask specific questions, we will reach out to try to help you.

      Just keep your FAITH and your HOPE.

      My thoughts and prayers are with you,
      Mickie Agee

      Like

  11. Sharon Leyland says:

    Thank You, Mickey, for all the information you gave me regarding Dr Dai at Mount Sinai Hospital in Manhattan, NY. I’ve had MdDS for 5 years come Nov. It gets really discouraging when you think it is incurable. Dr Dai said I had “instantaneous MdDS” which was caused by one stressful situation and he only has a 30% cure rate for that. Most people have “classic MdDS” caused by a long car, boat, plane, cruise ride. That is the one you had and has an 80% success rate. I am very happy that you are cured. I’m trying to save enough money to venture to New York. I’m hoping to see him cure 80% of instantaneous cases before I can justify the huge amount ($$$$) of the treatment. Thanks again for your help.

    Like

    • Mickie Agee says:

      Sharon, just don’t give up HOPE! When you know that this syndrome has been around since the 1790’s and now it is 2015 and FINALLY, research is being done with some positive results. Surely, a higher remission rate for all onsets will be found if these dedicated doctors receive funding and can continue to be able to do their research. I am so sorry that you have suffered for so long. Take care, and I pray you will find remission! Mickie Agee

      Like

    • quentin moody says:

      I think ur making the best move there. I went for treatment this August. it was good to get more knowledge, but I ended up spending $5000 for the treatment and hotel expenses, short notice. I only felt better right after the treatment. when I got back to my hotel room, brain fog would come back. have anybody had problems with high blood pressure?

      Like

      • Mickie Agee says:

        Quentin, I am so sorry that the treatments did not work for you. Did you get the directions for the home treatments to try? Since you did feel better right after the treatment, I was wondering if using the home treatment might possibly help. If you do not have them, I would contact Dr. Dai and ask his opinion about using them. I know that he will do whatever he can to try to help you.

        I did have trouble with high blood pressure when my symptoms were high, before my treatments. I always thought it was because of the extreme stress that the MdDS was causing. My primary care doctor did have me on medication for high blood pressure.

        I know that I am very fortunate that I have now been in remission for over a year. My MdDS symptoms left before I left Mt. Sinai. I do not call it cured, because I will never be able to get on another boat, treadmill, etc. I know I have been given a “second chance” and I will never try the things I have been warned about because I will never deliberately take a chance on reliving the horrible nightmare of MdDS again.

        I continue to pray that remission will be found for all of you regardless of onsets and of length of time.

        Like

  12. My name is Linda S. English, I have been sick 13 years, only thing that’s different for me is ringing in my ears, non- stop, hearing loss, sometimes I can hear, sometimes I can’t. the ringing never stops, and its so loud. my balance is so bad, I stay in my house most of the time. my eyes bounce all the time, I have headaches all the time, sick at the stomach all the time, so much pressure in my ears, all the times. I’ve been told that I have bi-lateral menere’s. what I have read about your story is very close to what I go through every day of my life. It has changed my life so much. There is no medical place that I can go to that understands what I’m trying to tell them is wrong with me. Other member’s of my family has had or have what I have, it seem mine is worse of anyone. To hear someone else who might understand what I go through, makes me know I am not alone. Just had to respond.

    Like

    • Mickie Agee says:

      Linda, I am so sorry that you have suffered so for 13 years. I think the toughest part about an illness, especially an invisible one, is that you need support. I have a very close friend that has Meniere’s, and I know how sick she becomes when she has episodes. Having a support group can make so much difference in your life. I don’t know what I would have done without our MdDS support group. We lift each other up, give each other encouragement, and we cry with each other. But we know we are not in this alone. Belonging to a group, we realize that others are suffering daily the same as we are. My best advice is to look up VEDA, which stands for Vestibular Disorders Association. There web address is: Vestibular.Org. VEDA supports all types of vestibular problems including dizziness, balance, Meniere’s Disease, MdDS, and many, many more. VEDA can offer you educational resources, explain diagnosis & treatments, and a way to find help and support. They have support groups all over the U.S. and many other countries. Their telephone number is on their website and they will gladly talk with you and head you in the right direction and help you find the support you need. You are not in this alone, you just need to find a group to help support, shares advice, and understands what you are going through.
      My thoughts and prayers will be with you. Mickie

      Like

  13. Tina Clark cooke says:

    I am sorry to hear that you went through all of this. I am so glad that you are doing so well with it all. Love you guys

    Like

  14. I would like to know more specifically what happens in the “chamber”? I know you said it depends on the specifics of each patient, but can you give us an idea of what happened to you while in the “chamber”? I have had all the symptoms of MdDS since Nov. 2008.

    Like

    • Mickie Agee says:

      Bonnie, My understanding is that everything that Dr. Dai does is based on his many years of research of studying patients with MdDS and his research grant. The specific treatment that he does with one person is not the same for the next. His treatments are based on Dr. Dai’s analysis determined by his of each individual’s symptoms and conditions.
      On the first day of treatments, Dr. Dai was with me for about 2 hours, asking questions, evaluating my symptoms, etc. He evaluated me by measuring my movement while standing on a Wii board that he had adapted during his research. He also had me to stand with eyes open, eyes closed, watching my movements, etc. He put a band on my wrist to measure the degree of my swaying. He put all of these calculations into his computer. These calculations gave him precise time, light, direction, and sound to address my requirements.
      The chamber is a large upright cylinder with a chair (not confining at all). The treatments involved optokinetic stripes rotating depending on my specific symptom that he was treating. Sometimes the stripes were moving vertical, other treatments the stripes were horizontal. Sometimes the stripes were rotating clock-wise, other times counter-clockwise. Sometimes there was a metronome playing other times piano musical notes. Everything that he did was very precise according to my specific needs that he evaluated. By this, I mean everyone’s treatment depends on what their evaluation showed from his calculations from the Wii Board and computer.
      I had very severe symptoms, but because I was very sensitive to the treatments (meaning I responded quickly), all of my treatments were under three minutes. Sometimes they only lasted 20 seconds. Once a 30 second treatment had me swaying totally in a different direction. That is why it is important that people do not do optokinetics on their own without a doctor’s evaluation and instructions to the length, direction, and speed.
      I hope this helps. I am so sorry you have suffered with MdDS symptoms for so many years,

      Like

      • Thank you so very much, Mickie! So happy for you that you are so much better & life is becoming more normal for you! Sounds like the treatments were very successful for you! I do vestibular exercises (PT) every day which have really helped me. I also take medication which also helps. Along with MdDS symptoms I also had vertigo attacks. A mecication prescribed by my neurologist stopped the vertigo attacks. I haven’t had one in over three years. I do still have the rocking sensation 24/7 but even that is way better. It would be wonderful to be able to get rid of these symptoms which affect my perception & balance. If only I lived closer to New York! Flying is out of the question for me! It is nice that the symptoms go away while riding or driving in a car! Maybe a road trip all the way to New York should be in order for me! Thanks again for your very informative information!

        Like

    • quentin moody says:

      u look at the wall, they have lines moving on them and rock ur head back n forth, depending on ur symptoms, until the rocking goes away. u can do it ur self on youtube. it called modified octokinetic [sic].

      Like

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  16. Sara Cone says:

    How exciting! Thanks for sharing! I too have another balance issue that complicates the MdDS. I’ve linked to this on my blog. 🙂

    Like

  17. Phyllis says:

    Hi Mickie …so happy for you! I went to Dr Dai and the treatments were helpful, but I still have bobbing, so going back later this month. Just moved to Nashville so glad that you included the name of the ENT as well as the vestibular therapist in Atlanta.
    My symptoms were pretty severe at first, but much more manageable now…even have occasional hours of normalcy.

    Like

    • Mickie Agee says:

      Thank you Phyllis! So glad to hear from you. We have our small MdDS support group of three in Nashville that meet for lunch occasionally and talk on the phone to stay in touch. We would love for you to join us, if you would like. I will email you the next time we meet. We are a good support system for each other. One of the others is now also going to Atlanta to my vestibular therapist. Good luck when you go back to Dr. Dai. He knows that I am one of his strongest supporters!

      Like

  18. Lisa Wilson says:

    Thanks Mickie for sharing your story. I have read many of your posts on yahoo and am so happy for you. I go to visit Dr. Dai in 3 1/2 weeks, my symptoms have improved but are stubborn to leave. I pray he helps me and I remain very positive. I have so much life left in me and wish to do so. I had this for years and never knew what it was as it went away after 6 weeks and wasnt bad. However this episode scared the life out of me and has made a tremendous effect on my life.
    May God help the researchers find the cause and cure soon.
    God bless you,
    Lisa

    Like

    • Mickie Agee says:

      Thank you Lisa! I wish you the very best when you go for treatments with Dr. Dai. He is such an incredible, dedicated, compassionate doctor that will do his very best to help you.
      Take care,
      Mickie

      Like

  19. I thank you for giving some of us encouragement. I have Had MdDs for 7 years but do not have nystagma according to My ENT and Dr. Cha. I am 78 yrs old and much of your testamony is similar to mine except,thank God, I still can drivebut cannot function because I”m rocking at 8-9 and have All of the other symptons. In fact, this is the longest I’ve been on the computer and amnow unable to focus so I will stop here and I’m so happy for you and hope you have a complete cure while we all wait for a miracle cure. God Bless and keep in touch with our group. would love to talk with you but that will be your choice.

    Like

    • Mickie Agee says:

      Jo Ann, I am so glad I was able to give you encouragement. My goal is to give someone HOPE. I will be glad to talk with you. Email me and then I will give you my telephone number or you can email me yours. I am going to spell out my email because often Yahoo automatically deletes the last part of our email. It is: mickie_agee at yahoo.com.

      My nystagmus has greatly improved so I started driving again about 3 weeks ago. It was scary after 18 months, but amazing to be independent again!

      God Bless You,
      Mickie

      Like

  20. Kim Kepner says:

    Thank you for your story.
    I have had this disease for almost eight years now and after reading your story it gave me hope.I live in Atlanta so I am familiar with Gayke but never saw them went Emory and saw Dr Tusa.
    I have been following the posts about Dr Dai and I feel now after reading your story I should check into it.

    Like

    • Linda Looney says:

      Mickie,
      Can you further explain your treatment with “the chamber” as to what kind as there are two in Atlanta?

      Like

      • Mickie Agee says:

        Linda, the chamber I am referring to is at Mount Sinai Hospital in NYC. This particular chamber is one of a kind. It was developed by Dr. Mingjia Dai. He developed it through his research. I understand that others are wanting to replicate it. If you are a member of the MdDS Support Group, there are actual pictures of it posted. His treatment is specific for each individual that he works with depending on their symptoms as he constantly evaluates each person throughout their treatments,

        I think that Kim was referring to Dr. Gaye Cronin, my Vestibular Rehab Doctor in Atlanta at the Atlanta Ear clinic when she accidently typed Gayke.
        Take care,
        Mickie

        Like

      • Linda Looney says:

        Thank you Mickie! This is encouraging for a five year sufferer of MdDS. I plan on contacting my neurologist, Dr. Tusa, at the Emory Dizzy and Imbalance Center and find out his read on this treatment. It is nice hearing others blog their experiences. Most days I’m a 5 and take Klonopin as Rx by Dr. Tusa for MdDS and for anxiety by my psychiatrist. I had a former psychiatrist speculate that it may be MdDS and said it would last weeks, months, or years. I have found that stress makes it an 8, and have learned to live with it by the grace of God. You all are an inspiration.

        Like

    • Linda Looney says:

      Kim,
      Who is Gayke?

      Like

    • Mickie Agee says:

      Thank you Kim! My goal in sharing my story is to give people with MdDS HOPE. I am so sorry that you have suffered for so long. If you contact Dr. Dai, he will give you an honest opinion of whether or not he feels he can help you.
      Mickie

      Like

      • Bill Hazen says:

        Mickie, thank you. I’m one of the blessed ones, 4-5 on the scale, only walking involved, just as on a huge water bed, for 3 1/2 years, progressively worsening monthly. I’ve been in touch with Mt. Sinai and the doctor I have exchanged emails with flatly states, “We cure MdDS.” At nearly 80 I needed confirmation as I don’t want to begin commuting from Arizona to Manhattan. Have even been on a 24 day cruise SINCE being diagnosed and it may have brought on delayed worsening of symptoms but certainly none immediately.

        I’ll re-contact Mt. Sinai and make arrangements to see them this fall. Thank you Mickie and God Bless You for the hope you are spreading with your testimonials. Bill

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      • Mickie Agee says:

        Bill, Thank you so much for your kind words of my spreading HOPE! That is my intent in sharing my story. I am so sorry that you have suffered with this horrible, invisible syndrome for 3 1/2 years.

        When you re-contact Mt. Sinai, be sure to ask for Dr. Dai. He is so compassionate and dedicated to helping each patient, but he always tells his patients that “There are no guarantees.” When you tell him your history of MdDS, he will give you an honest answer as to whether or not he feels he can help you.

        I wish you the very best, and God Bless You!

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