I love the sea. I love watching it, I love swimming in it, I love sailing on it. The sea is my peaceful place. The place that rejuvenates my soul.
For 52 years the sea was my place of comfort. Many times I had travelled by boat and had a wonderfully, relaxing time. But not this time.
In January 2015 I left Melbourne, Australia, to fly to Singapore, where I embarked on a wonderful, luxurious cruise of 17 days, visiting Vietnam, Borneo, Brunei, Indonesia and finally ending in Bali, where I stayed a little while before flying back to Melbourne.
When I came home I felt like my ears were blocked and there was a constant pressure in my head and the world was continually moving. I was still on the boat! The rocking motion never ceased.
I visited my GP who said I probably have water and and a build up of wax in my ear, and syringed my ears. This did not help, in fact, it made it worse. Another visit, and he said that I definitely had vestibular neuronitis and prescribed some stemetol to relieve the dizziness. It did not.
I felt I was going mad, and really tried for a month to just live with it, not really knowing who to turn to for help. Loads of people had advice and solutions and were sure it was this, and then that, but basically I was at my wits end for someone to have some insight into my world of rocking.
Just by chance, I was chatting to a friend, who, after listening to my symptoms said ‘ Well that sounds exactly like what my American friend Hannah is going through. It’s a weird condition called Mal de Debarquement Syndrome ( MdDS) Bingo!
I furiously googled MdDS and could not believe what I was reading. It was about me! I had found other people who had this… The American friend put me in touch with an American Facebook page for MdDS sufferers, who in turn referred me to the MdDS Australia Facebook group, where I made contact with the lovely Chris Daws who is the founder of MdDS Australia. Chris was very welcoming and assuring and I was blown away that there were others just like me!
My googling was compulsive now, I just wanted more and more info on this condition. I came across a list of vestibular physiotherapists, who specialized in balance and dizziness disorders. I embarked on some treatment, but found it actually made me worse. The physio I saw was very interested in my condition and had only ever met one other person suffering from MdDs in his long career. He recalled seeing a neurologist mention the condition in a lecture and said perhaps I should see him. This particular neurologist is known for expertise in balance disorders, so I was excited to see if he could do anything for me.
On my first visit, I was given a series of exercises and tests, which were all normal. I also had a brain scan, which was also normal. The neurologist, although recognizing MdDS as a condition, did not have anything to offer me in the way of treatment, and seemed quite keen for me to try amitriptyline (Endep) which is an older school antidepressant. He seemed quite adamant that the condition was linked to stress, even though I am not a stressful person, and did not have stress in my life, I wasn’t depressed, but I nonetheless thought I would give it a try. I was told on subsequent visits to keep increasing the dosage to reduce symptoms.
I did this for 9 months with limited reduction in symptoms, until one day in September, I woke up and it was gone! I knew it, the minute my feet hit the floor upon rising out of bed. I could not believe it! After a few weeks I had weaned myself off the amitriptyline and the rocking had ceased. It was gone….but was it the drugs, or would it have gone by itself anyhow. I don’t know and I definitely didn’t care, who cares..it was gone! Life was normal again. As the months went by, MdDS became a distant memory; I just didn’t have to deal with it anymore.
No more did I have to listen to annoying people telling me I have vertigo or Meniere’s disease, or allergies, or depression, or anxiety, or the many other suggestions I have heard. No more trips to the supermarket or shopping centres ending in a mad dash to get out of there, No more tripping over imaginary objects. No more looks of disbelief when I try to describe what I am going through. No more 5 O’clock increase of symptoms to the point where I just have to lie down and not get up again. No more MdDS!!
Although I felt so sorry for those in the Facebook group still suffering, I was free. I didn’t have to read every little bit of info I could to try to grasp onto something that could make me have hope for the future.
Or so I thought.
In September 2016, after having gone a year symptom free I went on a trip to Sydney, where I caught a fast ferry to Manly. A trip of about 20-25 minutes. I had been on boats since MdDS had left me and I had been fine, so this was no different. On the return trip to Circular Quay, as soon as I got off the ferry I knew something was different. I just kept telling myself that I was imagining the rocking. Or it’ll go away soon, but deep down I knew. It was back. I flew home to Melbourne the next day and yes, my world of motion had returned.
It is now nearly June 2017 and it has not gone away. I visited my neurologist again, who handed me some sheeted information on PPPV, which basically said my symptoms were all in my head. I have not been back to the neurologist. All I was told was to keep increasing the dosage of the amitriptyline again, which I have done but it hasn’t helped. I have put on so much weight, a lovely side effect from the drug, I now do feel depressed, anxious, and all the other things the neuro had alluded to that had CAUSED my MdDS…but for me its actually the other way round.
Everyday I struggle with it, some more than others. I am a musician, a singer/songwriter, I teach music to children, and I perform myself, regularly. This is pretty difficult to do with the constant rocking. When I am on stage I have to grip on to the microphone for dear life as I feel I am going to topple off. But my sanity is my music and I’ll be damned if I am going to let this stupid condition take that away from me. I still manage to be able to work as a musician and that is my saving grace.
When I do tell people about my symptoms and the rocking, I am nearly always met with looks of misunderstanding or disdain, or comments of ‘Yes, I have had vertigo, or ‘It will go away”. No, it doesn’t go away, it is my life, it is always there and just like anyone else with some sort of disability, I just have to get on with it and survive daily the best I can. Some days are overwhelming, some days are ok.
It is my life now and I am me. I cannot escape me.
I do not tell people much anymore, as I am tired of it. I just pretend to myself it’s gone. Deep down I have a tiny, smidgeon of hope that it will go away again, but mostly now, I try not to think that way.
Yes, I still love the sea. I feel it has now become part of me. I am constantly reminded of it. I try now just to accept that it just is, and I am just me.
By Jenny Ellison