Case Study – Sophie
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I had my first episode of MdDS when I was 20 years old, after a car trip to our holiday house 1 hour from home (I’d travelled on this same road since I was a child, so puzzled as to why it happened in this instance). The symptoms were relatively mild and lasted for about a month, but I really didn’t pay much attention to it and thought it was just part of the bad anxiety/panic attacks I had been suffering for the year leading up to it. I didn’t experience any symptoms again for at least a year after that. I can’t recall exactly when they returned, as I had a bad episode of the flu in September that year, but can’t specifically remember if the MdDS returned before or after the virus. All I know is that it came back sometime during the second half of the year & when it came back that year, it came back with a vengeance. Sitting through lectures at uni was a nightmare, as everytime I would look up at the board and then down at my notes, the feeling of swaying kept amplifying. Again, I didn’t seek any medical advice, as I thought it was part of the anxiety. I did mention it to my psychologist, however she had no idea what it was. Ironically, I had overcome my fear of panic attacks early that year and things were pretty much under control - until the MdDS symptoms returned. Then the anxiety came back again. So I was pretty much going back and forth to the psychologist because I was suffering anxiety as a result of these swaying/rocking sensations – not because of the anxiety disorder itself. Little did I know I was just wasting my time with the psychologist.
In the year following (2001), the symptoms worsened & I began experiencing them when I was standing as well as sitting. I started noticing a pattern – when I was tired or needed ‘fuel’ (ie food), the symptoms were worse. Stress and anxiety also amplified them. I finished uni at the end of that year, and began full time work in 2002.
After a month of working full time in 2002, things took another turn. I was working 8.5 hour days, and getting to work was an effort in itself, as it involved a car trip, a bus trip and a 5 block walk. So I was getting exhausted easy. One afternoon, I bent down to get something out of a drawer, and as I got up, I got this strong sensation of sinking into the ground – as if the ground had opened up beneath me and was ’swallowing’ me; or as if I was in an elevator which was going down fast. This really scared me, so I went to the doctor. He looked at me in a very puzzled way & sent me off for a head CT and also an ENT consultation. The CT came back fine, and the ENT specialist did all the routine tests, but had no answers – he just told me to go have a blood test.
So I kept on going on with the symptoms in silence, thinking I was just a ‘freak of nature.’ The symptoms just kept getting worse – work was tiring, and I couldn’t eat when I wanted to (if my blood sugar dropped even the slightest, the MdDS would let me know!). Some days were so much worse than others, and other days the symptoms were barely noticeable. The same pattern continued into 2003 – I also noticed that my symptoms would be worse on humid days, and that after eating and resting at lunchtime, the symptoms would be more bearable in the afternoon. I thought that my life couldn’t get any worse, but it was only the beginning…
In June 2003, I accepted a job in a large hospital. I thought that I just needed a clean break into a new environment and a new focus would help to take these symptoms away (at this stage I still thought that they were just in my mind). During my first week there, I came down with a severe gastro bug, which lasted a week. The MdDS worsened a bit, but after I got over the bug, things settled for a short number of weeks. Surprisingly, the MdDS settled down & I thought that I had made a good decision in changing jobs. But little did I know it was just the ‘calm before the storm.’ The hospital started getting quite busy over the winter and I was up to my ears in work. I couldn’t even breathe! And the MdDS became quite bad – so severe that I had to pretend that I needed to go to the ladies room, just so that I could get away for a couple of minutes and gather myself. I found it extremely difficult to walk in open spaces. Around August/September, I seemed to be coming down with another virus. I felt extremely weak, short of breath and dizzy – and the MdDS became quite bad. One day at work, I thought I was going to collapse. I went back to the doctor, who ordered a blood test. He didn’t bother checking for glandular fever because my glands weren’t swollen. The test results came back fine, and the doctor didn’t even follow up my progress. So I kept going to work sick and feeling a fatigue that I had never felt before in my life – it was extremely disabling. And it seemed that the level of fatigue correlated with the intensity of the MdDS symptoms.
I never quite felt the same, then in February 2004, things took ANOTHER turn!! I came down with another virus – much worse than the previous one. Again I had that same horrible disabling fatigue, as well as some of the ‘general’ symptoms that you get with a virus (swollen throat, cough etc). Again, I was really dizzy (just the ‘general’ dizziness), and I also had the MdDS on top as well. Again I went to the same doctor, who didn’t bother to do any blood tests and just told me that because I was a female, I was experiencing this fatigue. He hardly gave me any time off work, so I had to soldier on, even though I would go to work one day and not be able to get out of bed the next. Just as I began regaining some normality from this virus (about 6 weeks), I came down with another virus (it felt like a really bad cold), which took me about 3 or 4 weeks to recover from. It wasn’t until May that I started regaining some sense of ‘normalilty’ – however things were never the same again.
Over the course of the rest of the year, I began developing some chronic symptoms – allergies/sinusitis, headaches, muscle weakness, heat intolerance. I was barely able to cope at times with work and couldn’t even last half a day. With these symptoms, the MdDS worsened – and I was moved into an area of the department which involved standing on a suspended floor – so if anyone moved, it would move too! And on top of that, my colleagues weren’t too happy with me coming to work one day and then being off sick the next. The doctor I was going to was just hopeless – he didn’t really seem to care. Towards the end of 2004, I changed doctors under the recommendation of my psychologist. She knew I had been very unwell, but also filled the doctor in on my history of anxiety. He did some blood tests and found I had the antibodies to the glandular fever virus (you don’t have to have swollen glands to have glandular fever – but tell the other doctor that!). I tried working part-time, but I still couldn’t cope, so quit my job at the end of 2004, feeling physically and mentally burnt out.
Over 2005, I seemed to develop symptoms consistent with chronic fatigue syndrome. But again, given my history of anxiety, the doctor was hesitant in giving me an official diagnosis. What I couldn’t get across is that if I didn’t have any of these symptoms, I wouldn’t feel anxious! I briefly saw another doctor the following year, who seemed to think I have CFS. So I have been going with this diagnosis & have joined a support group which has been great, as they are the only people who understand this strange illness. I never put a name to the MdDS until I was watching a CBS News story in early 2007, in which there were 2 ladies featured who had exactly the same symptoms as me. I finally realised that it wasn’t just me and I wasn’t a freak! So after that, I joined the MdDS Foundation support group.
So at the moment, I am living with both MdDS (still not officially diagnosed) and CFS. I had the opportunity to correspond with Dr Slater in the USA (who is part of the MdDS Foundation Board) & he gave me a tentative diagnosis of MdDS, with a component of MdDS secondary to migraines (turns out that what I thought were sinus headaches are actually migraines). And I do find that when I have these headaches, the MdDS is worse. It’s weird also because the CFS and MdDS directly affect each other – when the CFS symptoms are about to worsen, the MdDS worsens – it’s like a ’signal’ that the CFS is going to throw me down. One of the main sensations I get is that I feel like I’m being pulled backwards, and I also feel like one of those wooden dolls that has bendable joints – it feels like one part of me is going one way and the other part another way. I feel so unsteady and find it difficult to go out into open spaces, like shopping malls and supermarkets. I veer to one side when I walk, and if I am feeling fatigued, this veering is worse.
To make things more difficult – in September last year, I dislocated my right knee while trying to exercise. I’m still recovering from it, as the chronic fatigue syndrome is not making it easy to recover from due to the already existing inflammation that occurs with this condition. I have to say though – having crutches and then a walking stick really helped to minimise the feeling of unsteadiness that comes with MdDS. Although due to the lengthy duration of inactivity from the dislocated knee, I found that the MdDS settled a bit. However I am concerned that I caused damage to my knee from the MdDS, as it has made me develop a ‘lean’ towards my right side, and I tended to put all my weight on my right knee.
I have spoken with my physiotherapist about this and she did give me some vestibular exercises to do in addition to my knee therapy. But they make me dizzy a lot of the time, so I don’t really stick with them. She may refer me to a vestibular therapist once all this saga with my knee is over. So at the moment, the focus is on getting my knee back to normal, then getting the CFS under control, and then tackling the MdDS once I have a bit more energy to do so. The social aspect of the MdDS and the CFS have been extremely difficult – they do cause arguments and conflict in my family (I’m still living at home), as they are 2 conditions which are poorly understood and have no cure. It’s so frustrating at times because I explain these condtions to relatives/friends, but no one seems to quite understand exactly how disabling they are. The things they take for granted – working, shopping, travelling, going out for dinner – they are extremely difficult for me. But they just don’t get it!
2 Responses to “Case Study – Sophie”
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Mal de Debarquement Syndrome (or MdDS) is an imbalance or rocking/swaying sensation often both “felt” and “seen” by the sufferer that occurs after exposure to motion (most commonly after a sea cruise or a flight). Although other forms of travel have been known to trigger it.
Ask your doctor to try you on Lasix 40mg a day. Friend had this and as soon as she started taking the Lasix, all symptoms disappeared. It seems the extra fluid in her body and ears affected her causing the MDDS.
Then she probably did not have MDDS but something more along the lines of Meniers or endolymphatic hydrops