I flew to Australia in 2009 which was my first ever long haul flight. It was approximately 21 hours long with a half way break in-between (1hr). When I arrived in Australia, we had a transfer time of about 2 hours to our hotel, which then I did feel fine. We then, got a short ferry trip across to Sydney from Manly which only took about 15 mins. The first time I felt the symptoms was when I got up to walk about on the boat; the feeling was something I had never had before. The nausea came on instantly and the dizziness was unreal. I just wanted to lay down and be left! This feeling lasted for approximately half a day. I was fine for the two weeks I was there, and I flew home. Strangely, I was fine when I got off the plane back in London, and I never felt anything else until my next trip which was to Mexico from the UK in 2010; the flight was about 10 hours direct.
Excited for my holiday as the sickness was a distant memory from the Oz trip. As we landed in Mexico and went through customs, there it was again, but this time it was as soon as I stepped off the flight and stood still, that awful awful feeling; the dizziness and the nausea were overpowering and I slumpt down in the airport queue feeling shocking. I had to get to my feet and get through the queues; I remember the feeling like I was going to pass out! Again this passed about half an hour later and we thoroughly enjoyed our two weeks in Mexico! apart from thinking, ‘oh no I’ve got to get back’! Before we landed back in the UK, as we were descending, I felt the symptoms taking hold of me again; I got off the plane and this was the worst I had ever felt! I am so shocked how I didn’t vomit as the sickly feeling was so so bad and I remember sitting in the airport with my head in my hands feeling unbelievably unwell. This episode lasted for a few hours, and I did feel slightly better when driving home. I suppose it was a distraction.
When I returned to work 3 days later, the symptoms came back again. This time, I was trembling with it. I was rather worried at this point as I had no idea what was causing me to feel this way. I went to many doctors and their first thought was ear infections, or inner ear problems; I still had no idea what it was. All I wanted was to feel normal again.
After a year and a half, I was sent for a CT scan, which worried me as I didn’t know what they were looking for. I do not have a history of migraines or any other health problems, but I was having regular headaches along with my dizziness and nausea. The scan was clear, which was a relief, but I still had no idea of what was causing my symptoms. By this time, I felt that anyone who was witnessing me struggling through this actually thought I was mad! A few times I had things said to me which made me feel like I was going crazy, like, ‘Well, you look ok!’ or ‘It must be all in your head’. Nobody understood how I was feeling, which was one of the hardest things.
In 2011, I got an appointment to see an ENT specialist who diagnosed me with MdDS. He did advanced hearing checks, and a dizzy test. The test in which they used hot and cold water in my ears was awful.
Along with the symptoms of MdDS it has triggered quite severe health anxiety; basically I believed I was dying! Most people thought I had gone totally crazy, and I actually believed it myself. I have suffered with depression along with everything else but I now feel I have control and do not experience really bad symptoms from MdDS now. I do have slight vision problems some days; my eyes feel slightly blurry and strained, I get occasional dizziness and nausea but nothing I can’t handle.
I am taking beta blockers for my anxiety, which I think has helped. I find it hard to even think about flying anywhere. I’ve even had nightmares about it. I loved my holidays and now have to deal with the fact I won’t be going travelling like I once thought I would. But I suppose it could be so much worse! I take my hat off to anyone who suffers with this… Let’s find a cure! 🙂 xxx
long haul flight, 2009
Granny, the brochures will go in the mail this week.
My mum has had MdDS for over ten years. I dont know how she had handled it. We have had every test done possible , even several times over, each Dr. Nuerologist etc etc weve been to so many, and still without an official diagnoses. I know that is what she has. We have found the most fantastic guy willing to help us. Dr. Alan Pearce a professor at the Deakin Uni. in Melbourne. Aust. We have been using TMS. We first started with Alan over a year ago I have travelled to the other side of town about 1 hour drive through the city every day with mum for some treatment on the tmcs machine for about 1 month, until we bought our own device Mum invested in a TMCS portablr machine from Hong Kong. Dad and I have been using this machine every day but there was not a lot of improvement but we kept going on Alans advice. Last week we upped the treatment to a larger machine and mum has had remarkable improvement, watch this space.I cannot speak more highly of Alan, his patience, his manner,what a great guy. We continue both treatments, It is nice to see mum walking again and smiling her remark is if I was any fitter Id be dangerous. She is not cured but hopefully with Dr. Pearce miracles will happen. Any MdDs sufferers out there know how hard this has been for mum. She practically gave up on life. She is my hero. Thankyou Alan.
Glenda, Would it be possible for you to contact me at mddsfoundation (at)mddsfoundation(dot) org so we can further discuss this treatment? We are interested in how your mom was treated. We are so happy that you have found something to help her!
Deb, MdDS Foundation
I have had confirmed MdDS for nearly 9 years, so I am naturally very interested in Genda’s Mum’s story. I can’t imagine how wonderful it must feel to experience some improvement. I am particularly interested to have details of the machines they have been using. Of course, correct medical guidance & supervision is paramount, but to be informed before approaching the medical profession is always helpful. Thank you Glenda, is there really hope?
Has anyone developed this without being on a long haul flight, frequent flying, or a cruise? My mom has MdDS for three years now and has done none of the above. Any help would be appreciated.
This review article by Dr. Cha includes information on MdDS patients with spontaneous onset: Mal de Debarquement.
oh, yes!! i never had the pleasure of a flight, a trip at sea, or any other seemingly precipiting event. mine started spontaneously 8 or 10 years ago. sometimes its really bad, other times its tolerable. one thing that happened to me that i’ve never seen happen to anyone else is that i experienced a fainting spell as i started down a flight of concrete steps. luckily i was unconscious, or i would have done a lot more harm to my old body than i did!! i ended up with a concussion and subdural hematoma, spent a week in the hospital (very little of which do i remember!) and months of recovery. the bruising healed quickly – within a few weeks – but the blank places in my brain have not. and frankly, i am frustrated and angry at being dismissed by doctors who know nothing about this syndrome, and being told ‘you have to expect this sort of thing as you get old’ (i’ll be 80 before year’s end). i really love getting information from the foundation and people who are going through this – it’s more information to give to my primary care physician when i go see him again. and soon. i plan on asking for a referral for an in-depth study by an ear specialist; most people seem to feel this is a disruption of the inner workings of hidden mechanisms deep inside the ear [sic]! i wonder… in any event, my dear, there are a lot of us out here for whom this was spontaneously generated. please keep reading and learning all you can and telling the rest of us. maybe one of these days someone somewhere will find out something helpful!
I have not been diagnosed with MDds, but I have similar symptoms. MRI’s, c-t scans and balance tests are all negative. My swaying is constant and I sometimes get nauseated.
How does one get diagnosed and treated. My life is worthless. This has been going on for almost two years.
Our web site includes a page that you may find helpful: Health Care Providers That Can Diagnose MdDS. Hang in there, Elaine. If you’re interested, we have two really great online support groups that you can join. Links to both groups are at the very bottom right of this page.
thank you for the continued support and information. unfortunately, i live in the greater tampa-st petersburg-clearwater area and there are NO health care providers nearby who can diagnose this syndrome!!! there is a balance institute, but i cannot avail myself of their services because i’m on a medicare advantage plan and they’re not in my provider circle. there is nobody else. i have requested a supply of your tri-fold brochure to pass around to the doctors with whom i come in contact to educate them to the fact that there is indeed a syndrome known as disembarkment syndrome and its neither a product of our imagination nor another occurence of old age!
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