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(
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,
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.