23 years without answers. Not anymore.

After almost 23 years of being undiagnosed, I believe I finally know why I experience the non-stop rocking sensations that have plagued me since university. I’m so happy to have found the Foundation and this site. Just knowing there are others like me has made the days easier to manage. Here’s my history, long as it is. Apologies for all the scrolling. I know how difficult it is :0(

WARNING: this is a long post. If you have MdDS and are bothered by scrolling, we recommend printing Kirsten’s story to read offline. To print, press Command+P on a Mac or Control+P on a PC.

July 1992: I was 27 years old and in university. I was in class when suddenly I felt really odd. I felt as though the floor had dropped out from under me and I almost fell right off my chair. After the initial frightening sensation, I then felt like I was rocking as if on a boat, and as I sat there wondering what was happening. The rocking continued to worsen and I had after-images when reading, like the pages were moving as I looked at them. I gathered myself, and a friend took me to the hospital. By the time I arrived, the imbalance was such that I felt like I was seasick and it made me nauseated and apprehensive. My ears were stuffed and I was having even more trouble focusing my eyes. The ER doctors told me that I was experiencing vertigo and that it would last 2-10 days and prescribed me Valium. Two weeks later, I was no better. In fact, the rocking sensations were even stronger and my ability to walk and perform basic tasks was severely impaired. I was referred to an ENT who took several blood tests that showed nothing of concern and then told me I had an inner ear infection. I was prescribed erythromycin but the medication had no effect. I suffered on for several months hoping it would pass.

November 1992: I was referred to another specialist as my symptoms were not passing. Not only that, but new symptoms were presenting themselves. My ears were now ringing most of the day and I was feeling more nauseated and dizzy, as I described it then. (It’s funny now, reading all the posts and listening to Cathy Helowicz†, to realize that calling myself dizzy is probably what is why it has taken so long to get a proper diagnosis.) In addition, I was having terrible hot flashes that would make me feel as if I was going to pass out. I was almost completely unable to concentrate on school and when I would wake in the morning, I felt as though the bed was moving. The new doctor had me do hearing tests, more blood tests but found no specific etiology for my symptoms. Maybe it was thyroid, maybe I should get an MRI, definitely reduce salt and caffeine, and perform some Cawthorne vestibular exercises.

February 1993: Symptoms still present, I was referred to another specialist. By this time I’d completed tests to determine my thyroid function was normal, had done a CAT scan and had an MRI. Results were negative for anything that might be causing my discomfort. This doctor believed that it was “utricular vertigo” and that he could help. I was unable to continue university, though, and I moved back home so was unable to continue seeing this doctor. He had assured my worried parents that what I was experiencing was not psychosomatic (or at least not emotional but something physical), and sadly he was the only doctor in all that I saw across these 23 years that felt this way.

June 1993: More doctors, more hearing tests, allergy tests and caloric test (gosh that was the worst!). A slight weakness was found in my right peripheral labyrinth, and so the latest in the string of possible diagnoses was a vestibular lesion. No one had any answers for how to remedy a vestibular lesion, nor were they even sure that’s what was causing my symptoms. I carried on for another 2 years.

March 1995: I was back on the doctor circuit as the symptoms had kicked up significantly again. Another new otolaryngologist described me as a mystery that he couldn’t solve. More caloric tests which I refused (the first ones were so heinous) and another round of referrals that ended the way they started. Numerous letters back to my GP stating that my symptoms did not fit into any clear-cut syndrome. I tried chiropractic, corrective shoes, looking into TMJ and food allergies. Nothing. As time passed, the symptoms were no longer as constant or severe. I would wake up in the morning symptom-free but as the day progressed they would return. Periods of being symptom-free began to extend and there would sometimes be full days that I would feel almost “normal.” I was either getting better or I was just getting used to this new normal and had sufficient coping strategies that it was not as debilitating any more. It would flare up from time to time, particularly around my menstrual cycle but then I could go for long periods without noticing the rocking.

May 2009: 12 years later, I found myself suffering terribly again. I had been travelling a lot for work and after one of many flights overseas, all my most severe symptoms were back. I went to yet another otolaryngologist who diagnosed me with Migraine Associated Vertigo. I was excited to hear a new idea – a new diagnosis – I was very hopeful. I immediately went on a migraine trigger avoidance diet for 3 months but it resulted in no measurable difference to my condition. In retrospect, it is not a surprise that I didn’t see any difference as the top triggers are things that I never indulge in anyway. Removing onions from my diet was more challenging that one would expect, but I had no caffeine and I’d stopped drinking any alcohol years ago. If the dietary changes didn’t work, the next step was to take daily prophylactic medication. But the more I read and researched MAV, the more inconsistencies I found. It just didn’t seem to me like that was what was wrong, and when more than 80% of patients see some improvement with the trigger avoidance diet, and I saw none, I was suspicious of the diagnosis. I felt so rotten and the list of side effects for the daily meds seemed too much to handle so I refused the treatment and decided to tough it out on my own, hoping that the symptoms would abate naturally as they had in the past. And they did, only resurfacing when I was really exhausted or after significant air travel or around my menstrual periods. But it was “manageable” again.

June 2015: It’s back. I’d travelled across the country by plane and was sitting in a meeting, when suddenly I thought the room fell out from under me. The rocking started again and hasn’t stopped since. It has been extremely intense this round, and I’m not sure if that’s because it’s worse this time or I’m just older and can’t cope with the symptoms the way I used to. It’s become more and more debilitating as each week passes. I’ve had to leave restaurants in the middle of dinner because I simply can’t sit there. I’m rocking so badly and I’m so distracted that I can’t carry on conversations well. I’ve had significant issues focusing at work and find myself not wanting to leave the house for fear that a bad bout will hit at an inopportune time. I don’t want to travel, though I must for work, and am working from home more than going into the office. I’m 50 now and of course this could be perimenopause. So I spend a lot of time talking to others who have been through menopause and try to determine if that is the cause of the most recent bouts.

Then, 4 weeks ago, I found myself in the ER because I almost blacked out in a meeting when the room fell out from under me again. My symptoms had never seemed worse to me and I was really scared. Maybe someone had missed something in those CAT scans or MRIs? Even after 23 years, this disorder can really play with your mind and destroy your confidence. Again, the ER doctors smile and tell me I am certainly an interesting case, but they had no more insights other than my heart and blood were not the cause and that I should talk to my doctor about hormone replacement therapy maybe.

November 2015: I go to my new GP (my previous GP just retired) as a follow up from my ER visit, told him about all my symptoms and he sent me home with a reference list for local resources to help me with anxiety and depression. That was the last straw for me. Of course I’m anxious – wouldn’t you be after 23 years?!? But I’m not imagining this and I’m not crazy, though there are days that I feel I might just lose my mind if the rocking doesn’t stop.

It was this most recent doctor visit that compelled me to take things into my own hands and dive into the Internet to find my own diagnosis and treatment. “There must be someone else with these same symptoms,” I kept telling myself. Frustrated with the lack of answers and feeling again so debilitated, I was determined to figure this out once and for all.

I entered, “I feel like I’m rocking all the time” into Google and that’s when I found the post by Mickie Agee. I couldn’t believe it. Every story I read – it was like they were telling my story. Every symptom, every fear, even the sad parade of inconclusive diagnoses and ineffective treatments – all the same.

I was up most of the night reading every story on the Foundation’s website, making myself worse scrolling through page after page, but with the excitement and adrenaline of finally finding out what was wrong, persevered for hours on my laptop.

I’m absolutely sure MdDs is what I have. I’m sure because there is nothing in anyone’s story that is inconsistent with my symptoms while every other diagnosis has had one or several things that just didn’t fit. And most importantly, the only time I feel any relief is when I’m in the car. And this is key in the diagnosis of MdDS! I had always wondered how it was that I could feel so rotten and not be able to walk without assistance. That each step I took felt like I would topple over because of the trampoline or slippery pillows that would feel like they were under me. But despite these issues walking, I can still drive. Not only can I drive, but it is the only time I truly feel actually good. Now I get it!

I’m going to call the doctor listed for my city and get diagnosed and I’m positive this mystery is finally solved. I look forward to joining the group and sharing my story and my coping strategies and learn new ones from others. I will be a passionate advocate for research and raising awareness so that no one is sent away from their doctors again with no answers.

Long story! Thank you for reading,
Kirsten
Spontaneous onset, 1992
Aged 27 at onset.


†WFAN’s Bob Salter dedicates a portion of his weekly radio show to MdDS. His interview with Cathy Helowicz discusses an atypical trigger, difficulty getting a diagnosis, finding support… and many more of the challenges of having our rare disorder.

About MdDS.BDF

The mission of the MdDS Balance Disorder Foundation is to promote education and research on Mal de Debarquement Syndrome. We are dedicated to finding a cause and a cure for MdDS.
This entry was posted in Case Histories, Faces of MdDS. Bookmark the permalink.

19 Responses to 23 years without answers. Not anymore.

  1. paula says:

    Thank you for your story. I recd my dx of mds after years of tests, doctors, meds, etc. I had never heard of mds. Then one day I saw a program on the discovery channel and the woman described mds to a tee. Then I knew I had it also and it was confirmed from the neuro dept at the University of Michigan. Very frustating. I went on a cruise in 1983 that changed my life and I am still rocking to this day.

    Like

  2. Linda Taniguchi says:

    In 1990 I went on my first cruise to the Bahamas which was a 4 night cruise with a flight from SLC. When we got back home my family all said they still felt like they were on the cruise and could still feel the rocking just going down the hall. I didn’t think anything of it as we all felt the same way. The next morning my family all felt fine and returned to normal except for me. For three months I rock and rolled until I finally called my doctor. He recommended me to an Ear, Throat and Nose specialist, who had no idea what was going on with me. I did a little research on the internet and found some information on MdDs, made copies and sent it to both my regular doctor and the Ear, Throat, and Nose specialist. In one article it mentioned amitriptyline as a possibility for helping control the rocking so that is what the Ear, Throat and Nose specialist prescribed for me. After a month or so the rocking went away. Then in 1996 my husband and I flew to Japan. When I arrived at the airport I noticed the rocking feeling again and especially when we sat down for dinner that night. I was holding onto to the table to keep upright! We were in Japan for a week and noticed that it was ok when we were in a car driving or walking, but once we stopped anywhere, I would start rocking again. That has been 20 some years ago and I am still rocking constantly when I sit down or lie down for bed. Winding roads make it worse it seems. I am fine while in the car but once we stop all the rocking starts again. I have been to several Ear, Throat and Nose doctors, a neurologist and family doctors that don’t seem to know anything about it or what to do so I basically gave up on trying to figure it out with them. I was excited to read about information from Mount Sinai Hospital in New York and their discoveries that have worked for a large percentage of people suffering from this syndrome. There is hope! In the meantime I guess I will just keep rocking on unfortunately. Some days are worse than others and most of the time I can function ok but experience a foggy brain and off balance periodically. I am so glad I found your site – thank you!

    Like

  3. Jean says:

    Hi Kirsten. I read your story of having mal débarquement syndrome for 23 years and I can really relate to what you’re going through and what you have been through. I have had these symptoms for 15 years chronically every single day of my life and I am completely homebound with a 24 hour 7 day a week live in caregiver helping me with my activities of daily living…that is how bad that I am.
    I’ve been to some of the major clinics in the United States like Mayo Clinic in Minnesota and also in Jacksonville Florida on numerous occasions, Cleveland Clinic, University of Miami since I live in South Florida and many many other neurologists, ENT Drs., vestibular therapy centers…you name it I’ve been through it. I have had so many MRI’s, MRA’s of my brain, my cervical spine, muscular tests, ENG’s, blood tests over & over again, etc.
    All of the Doctors that I’ve seen, which are too numerous to even mention have all been unable to diagnose me! The most hideous thing is my most recent visit to Mayo Clinic in Minnesota diagnosed me with chronic subjective dizziness!!! Is that even a medical terminology? It’s a joke After spending a week there undergoing terrible ear nose and throat tests, with water going in and out of my ears completely causing me to spin on the table and feel like I was going to pass out, and then coming up with this type of diagnosis and not finding anything wrong with my inner ears is Unacceptable!!!! I discovered mal debarquement syndrome 15 years ago when this first started by searching the internet, but then never went any further with it because I could not find anyone that specialized in it or diagnosed this disorder. I recently visited a neurologist at University of Miami and he printed out an article on mal Débarquement syndrome and told me to read it. He told me it sounded very much like what I was going through but never gave me any source of information on where I can go for treatment!!
    I am on this website again looking up information and reading comments from various others that are suffering with this terrible terrible disease and I would like to find out if anyone has gotten any successful treatment from any physician or therapy centers, and where they went to get this treatment? Any comments would be greatly appreciated. Thanks.
    Jean

    Like

    • loismcr says:

      Jean, Dr. Dai of the Neurology Department at Mount Sinai’s School of Medicine in NYC leads a (unique) therapy treatment specifically targeting MdDS. To contact them, email zelinette.lapaz@mssm.edu, and she will get your message to Dr. Dai. Good luck.

      Like

      • Jean says:

        Thank you so much for the contact information. I will definitely email the doctor’s site to get more information. I heard of a doctor at Mt Sinai in NY treating patients with good results but I didn’t know who he was or what his treatment is? Will let you know what happens.
        I am so desperate for help I would go anywhere for it (almost)!!

        Like

    • Kirsten says:

      Hi Jean,
      I’m hopeful that you’ve found some help since your reply to my posting. It’s been so incredible to me that I’ve been through such a long journey to get answers, but most surprising to find out that I’m not the only one. Hearing your story, of course I feel it is my story. “Chronic Subjective Dizziness” – that is a first! Not funny, but certainly illustrates how little is truly understood about this syndrome. I don’t know if you’ve joined the support group, but there is a ton of great information shared and a lot of people just like us that you can lean on who truly understand how you are feeling.
      Hope to see you in the group,
      Kirsten

      Like

      • Jean says:

        Hi Kirsten. Thanks for asking about me that’s very nice of you. I have not been on the blog for mal debarquement syndrome because it’s very difficult for me to read for long periods of time it makes my dizziness worse. And once I get started reading all of the comments I have a hard time stopping then I end up with severe headache and dizziness.

        I did contact Dr. Dai At Mount Sinai Hospital in New York as someone had suggested in one of the comments. His assistant sent me a very detailed medical form that I have to fill out and send back to his office and they will make a determination of whether I do have mal debarquement syndrome and whether they want to see me or not. In looking up his website it shows a brief description of the treatment but not very detailed and it mostly has to do with visual stimulation with a rocking back and forth and neck movements. I’m not sure if there’s more involved or not as I tried to reach his office several times and no one calls me back.

        I was told the treatment would be three to four days in New York and that it is not covered under any insurance plan and it’s approximately close to $3,000. This website said that he has very good improvement in patients with this syndrome but not 100% guaranteed. So it’s taking me awhile to fill out the form and send it back to him and see what happens from there. I would not want to go up to New York until spring time and the weather gets warmer since I live in Florida. Kirsten, Have you heard of anybody going to this doctor for treatment of mal department syndrome and if you have what are the results.. positive or negative?
        It’s a big expense to travel up there plus the treatment and the hotel stay if the treatment is not going to be successful. I hope you’re doing well with this terrible disorder and are up and about and feeling great!! Any additional information that you have I would greatly appreciate it…thanks for your help and your concern!
        Jean

        Like

  4. pollymoyer says:

    I left a comment. Why hasn’t it been posted here?

    Like

  5. Mickie Agee says:

    Hi Kirsten,
    I cannot even imagine having this horrible, debilitating syndrome for 23 years, even worse not getting a diagnosis! ! I am glad that you googled your symptoms and my story happened to come up! The purpose of writing my story is to give people HOPE! And today, there is HOPE. I have now been in remisson for 15 months. I look forward to you joining our MdDS support group. You will find lots of support and people that truly understand exactly what you are going through.

    Take care, Mickie Agee

    Like

    • Kirsten says:

      Hi Mickie!
      Thank you again for posting your story – it was your story that finally got me the answers I’d spent so many years searching for. The group has been amazing and I’m very grateful for the foundation and the work they are doing to raise awareness. So happy to hear that you continue to be in remission. I too have experienced this syndrome go away completely. There certainly is hope!
      All the best, Kirsten

      Like

      • Karen Ranly says:

        Kirsten,
        My daughter has been suffering with this kind of dizziness for 3 years. Did you have some type of treatment or how did you manage to go into remission for 15 months?
        I am desperately trying to help her!

        Thank you!

        Like

  6. Marla says:

    Hi Kirsten, I’m so sorry that it took so many years for you to get a proper diagnosis. I’ve had MdDS since Feb. 2001 and my symptoms are more manageable now then ever before. Hopefully after you get through menopause you will start to feel better again.

    Like

    • Kirsten says:

      Thank you Marla!

      Like

    • Marla, I’m so glad to see your post ! I’ve been thinking of you, wondering how you were doing! So happy to hear your symptoms are manageable, I wish I could say the same but at 79 yrs. old I am worse than ever after seven years of this very disabling syndrome,two one week sessions with Dr. Cha, one at UCLA & treatment at Tulsa, Ok. The only time I feel normal is in bed but I know that is not the thing to do so I drag myself around with a cane & or a walker. I’m too old & too tired & wish the Good Lord would take me Home but other than constant low back pain & nerurapathy I don’t have any life threatening disorders . If anyone my age is coupling with this horrible thing I’d sure like to hear from. Them & how to manage living alone with no help.

      Like

      • Jean says:

        Hi Joann…I too am a senior living alone with this Mal debarquement syndrome which I think I have that has not been diagnosed or treated for 15 years.
        It is so depressing not to be able to even walk which most people take for granted, and I do use a walker inside my home and a wheelchair when I have to go outside of my home. Fortunately I have a caregiver that stays with me and helps with my activities of daily living because I cannot function on my own…that’s how bad my symptoms are!
        Have you had any treatment or do you have a diagnosis of this for certain from any doctor? Or have you self diagnosed yourself based upon your symptoms?
        I do hope you get some help and I just posted that there is a doctor at Mount Sinai neuro Center in New York that is treating patients for this disorder. His name is Dr. Dai…email zelinette.lapaz@mssm.education for information on his treatment. Hope this helps in some way. Keep hoping..don’t give up…God Bless!
        Jean

        Like

      • june knight says:

        Hello Marla.
        l am olso suffering from mdds. I am in my seventies and living in a retirement village . I have no family support and find it hard to explain my symptoms to residents as i look healthy and normal to other people. I fear that i cannot cope with this forever, as i find the symptoms get worse as i get older. I recently have had two balance related falls. At this point i do not know what my future holds. I hope that one day there will be a cure for this disabeling condition.
        June.

        Like

  7. pollymoyer says:

    Thanks for sharing your history, Kirsten and I hope you get a full diagnosis soon. Recently I heard about a young man with severe cerebral palsy/epilepsy who also reports that he feels better when in motion. He has problems with variable eyesight strength because the part of his brain that processes visual stimuli is faulty, but he reports being able to see better when he goes sailing and this also reduces the number of fits he has. He says his body can’t tell where it is in space (which may sound familiar to many people with MdDS), he is non-verbal and reports that his brain is ‘full of holes’. Yet, when he was younger and his symptoms were not so severe, just going on a swing helped reduce symptom levels to the point where he could cry out ‘the holes have gone!’ I know we can’t jump to any conclusions about this. But – since we share this common feature of feeling better when re-exposed to passive motion – wouldn’t it be wonderful if any of the treatments for MdDS could also be beneficial for others with severe cerebral impairments?

    Like

    • Kirsten says:

      Hi Polly,
      I couldn’t agree more – if there is one this that all of us who suffer from MdDS would appreciate, it would be that what we have learned about our syndrome could be of benefit to others and vice versa. I keep my fingers crossed that more awareness of MdDS will bring more attention, more research, more answers for us and others with similar situations.
      Kirsten

      Like

Comments are closed.