Living & coping with Disembarkment Syndrome (MdDS) - an interview with a long-term sufferer
Motion-Sickness-Guru.com's information about Disembarkment Syndrome (MdDS) is consistently one of the site's top-ranked pages, so I am delighted to bring you this interview with Jane Houghton, founder of MdDS support group mdds.org.uk and MdDS sufferer since 2001.
In addition to giving solid information and advice, Jane is a great encouragement and inspiration, proving that debilitating though MdDS can be, there are
ways of coping with it.
Jane, thank you so much for agreeing to answer some questions about Mal de Debarquement Syndrome. I know that a lot of Motion-Sickness-Guru.com's visitors are searching for information on this distressing 'reverse seasickness' condition, so what you have to say will certainly have an appreciative audience.
First of all, can you tell us what triggered your MdDS?
My MdDS started back in July 2001 when I spent a long weekend onboard a small boat (it slept six of us) in Palma, Spain. During the day we took the boat out to sea, and one evening when I went onshore to use the marina washrooms I noticed that I still felt as if I was on the boat - I could both see and feel the motion, and the sink appeared to float up to meet me. I recall being in a restaurant on the quayside and the table was bobbing and swaying...
So you've now had MdDS for over a decade! In that time, have you experienced any changes or improvement/deterioration in your condition?
Yes, it's almost 11 years since I got MdDS. I have never had a period of remission in all that time. Over the years some of the symptoms have altered and changed slightly, but sadly the main one - the sensation of movement - has remained the same.
For the first 18 months I actually felt nauseous and sick with all the phantom motion, but thankfully that eased, and nowadays I only feel nauseous on a particularly bad day, when 'my seas' are extremely rough!
Three months into getting MdDS I developed tinnitus in both my ears and it has remained with me ever since. I now find that laying down eases the feeling of motion, but for several years I likened it to sleeping on a water bed (although I had never had any experience of that!) - suffice to say I could still feel the motion when lying down.
Are there circumstances where you feel normal again? For example, on a boat, or on other transport?
Yes, those who suffer with MdDS always feel better when back in motion. This can be any kind of transport, and since I have had MdDS I have been back on boats, planes, trains, cars, even white-knuckle fair-ground rides. It is the only time we feel 'normal'.
Why this is we, as yet, do not know. There is a theory that the actual motion masks our MdDS, but of course, we need research to discover the truth.
MdDS is still a little known condition. Did you have problems obtaining a diagnosis? How helpful was your family doctor?
Trying to get a diagnosis was the darkest period in my life. It took me over a year to finally get an official one. My doctor initially treated me for motion sickness. When there was no improvement, he sent me for a MRI brain scan, thinking it must be a brain tumour because what else could be affecting my vision in this way? The scan came back clear (thankfully!) and the neurologist couldn't find anything wrong with me. I was then sent to an Ear, Nose & Throat (ENT) specialist. Once again after a battery of tests all the results came back clear or normal. The specialist knew I had something wrong with me, but didn't know what, so I was labelled as having a balance disorder, despite the fact that my balance was perfect.
I felt like I was being cast-aside, overlooked, and I started to wonder if they thought I was making it all up, that it was literally just all in my head. I began to think that I might be having a breakdown. After all, nothing showed up in any of the tests.
I spiralled into depression, and my doctor, relieved that he could actually treat me for something at last, put me on antidepressants. But that was all he did. I remember visiting him when I was still desperately trying to discover what was wrong with me and asking him for the details of a vertigo support group (vertigo was the only thing that seemed to be slightly similar to what I was experiencing, although I wasn't experiencing spinning sensations), and he couldn't even provide me with that.
As desperately low as I felt, I refused to give up on searching for a diagnosis. I refused to be fobbed off with the 'one size fits all' label of having a balance disorder. I started searching the Internet for answers, at which point my doctor told me, and I quote, to "lay off it as you are becoming obsessed."
My goodness, it's clear that you needed real determination and perseverance to keep going through this period. Fortunately, you did finally find some light at the end of the tunnel, didn't you?
Yes, in February 2002 I received a reply to an e-mail I had sent to the Vestibular Disorders Association (VEDA)
in America. I had told them my story about being on a boat back in July 2001 and how I felt like I had never gotten off it. They said that everything pointed to a condition called Mal de Debarquement Syndrome (MdDS). I searched out what little information there was at the time on MdDS and was ecstatic - I could relate to everything about the condition!
But of course that was just the beginning because I then had to find someone in the UK who recognised and had seen cases of MdDS before. Once again I turned to the Internet and eventually discovered the National Hospital of Neurology & Neurosurgery (NHNN)
in London (England). They said they would be happy to see me, but I had to get a referral from my doctor first.
I explained to my doctor that I truly believed that I had MdDS and would like it confirmed at the NHNN. I had printed out information on MdDS and, to be fair to him, he did look it over and was decent enough to agree that a diagnosis of MdDS seemed likely. He even (almost) gave me an apology in that he said "maybe sometimes we should listen to our patients." My appointment at the NHNN took place in September 2002 and I finally got the diagnosis I had worked so hard for.
That's quite a story, and certainly shows that it pays to be persistent. Having a diagnosis must be an enormous relief, but what research, if any, is being done into the causes and treatment of MdDS?
I work closely alongside the American MdDS Balance Disorder Foundation
, and their amazing efforts with a very limited budget have helped to fund some tentative research since 2008. We don't yet have concrete answers as to how and why MdDS happens, and what is the most effective treatment for the condition, so we still have a long, long way to go. However, for the first time hope is on the horizon for those of us who suffer with MdDS.
How has MdDS changed your life?
MdDS has changed my life dramatically, not least in that I was working full time when I got it, but since my job involves so much computer work, which can aggravate my symptoms, I have had to cut back over the years. As a result, I now work barely part-time. So there has been a massive financial impact as well as a social one.
I do run the UK MdDS website, www.mdds.org.uk
, which of course does involve a lot of computer work. It helps that I am my own boss and can do as much or as little as my symptoms allow on any given day.
Regarding day-to-day life, I try to go shopping in the quieter, off-peak times, as too much visual stimulus along with crowds of people can provoke my symptoms to a higher level. Any social event is extremely challenging, and although I do go out to events, I will often pay the price the next day in increased symptoms.
You've already touched on this with the tip about choosing quieter times to go shopping, but what other advice can you give to others on coping with MdDS?
The biggest piece of advice that I have for those with MdDS is to take advantage of all the help and support that is out there. While there is still not nearly enough, the amount of support available is far better than it was a decade ago. Try out all the coping mechanisms and therapies available to those living with a challenging long-term condition. Had Cognitive Behavioral Therapy (CBT)
been on offer to me back in the early months and years when I was struggling with MdDS, then I would certainly have chosen to use it. The first years of MdDS were so very damaging, and I truly believe if I had received more help and support at the beginning, then the outcome might have been different for me, in that I might not have had MdDS for so long. More help and support would certainly have been beneficial and would have made me better placed to deal with MdDS
In addition to embracing help and support, I would strongly encourage those with MdDS to try their best to continue to live life to the full. Tragically, I know of too many people who have closed down their lives because of the condition. But this approach doesn't leave them any better, and certainly isn't a cure, so why let your MdDS take over and win?
It's not easy - I will be the first to admit it - but I am a great believer in gradually exposing myself to 'trigger situations', so that, over time, they do not aggravate my MdDS symptoms as much. For me, reading is a particular case in point. In the beginning, MdDS left me struggling to read at all. But I love to read, so I decided I wasn't going to let MdDS rob me of that pleasure.
I persevered with reading and although, as I say, it wasn't easy, over time I found I could read a little bit more and more, until finally I was OK with it once again.
Thank you so much, Jane. I'm sure your experience and advice will be a real inspiration to others who find themselves suffering from the symptoms of MdDS.
I do hope so. Years ago someone wrote: "I've got MdDS, but it hasn't got me." I think that should be our mantra.
Visit Jane's website at www.mdds.org.uk
. She can be contacted
via the website.
"I am currently not taking any medication at all for my MdDS, not even any vitamin pills!
In the early months when my GP and I still didn't know what was wrong with me, he tried me on some of the anti-motion sickness medication, such as Stemitil, Stugeron and Serc. However, none of them did any good. A couple of years ago now a neurologist who had read about me contacted me and asked if he could try to help. He told me to cut out all caffeine and chocolate (the latter being such a challenge!) and he put me on a drug called Gabapentin. On his advice I slowly built up to a high dosage, to be taken three times a day. I was on it for just over a year but sadly, once again I didn't find any improvement.
Of course, we have to remember that MdDS is so subjective. What suits one, doesn't necessarily suit another. We all have to be our own guinea-pigs to discover what helps us with this condition."
The floating-dizziness feeling remains my constant companion 18 months later, together with some tremors. Particular situations increase my dizziness and I have been prone to falling.
My life has been turned upside down and yet 7 (seven) consultants and physiotherapy have failed to diagnose and effectively treat my symptoms. Consequently, I have lost my high powered job and my executive lifestyle has been turned upside down. Busy environments make my symptoms worse, bright lights (sunshine), crowds of people & cars coming towards me, often I need to sleep to ease the symptoms. There is no pattern to worsening the dizziness. My GP is useless and I have searched the world, volunteering to act as a guinea pig so doctors may find a cure. I have learnt to walk closely to friends to help keep me steady and behind them, so people have to walk around, I love wide pavements and open spaces (beaches, countryside). I tire easily as I fight to retain my balance. I have tried all sorts of vitamins and supplements, but still the dizziness prevails... so well done to Jane for highlighting this issue.
I would completely recommend CBT [Cognitive Behavioural Therapy] and I entirely agree that there is a strong subjective element to this odd condition. I found that the condition got on top of me for the first few months and as someone who is prone to anxiety anyway this pushed my buttons.
I got a sort of informal diagnosis from ENT [Ear, Nose & Throat] but because I hadn't been on a cruise the doctor wouldn't give me it formally. My symptoms match exactly. I am wondering whether the condition is actually more common than the statistics show. I have stopped thinking about curing it though I hope it will go, and have found I do indeed still enjoy a 'good' life. The thing I hate most about it is that the symptoms seem to act as a magnifying glass for other anxieties and I often wonder how on earth I would cope with a serious illness on top. So much to say this is my first post on the subject. Bless you all.
I was finally diagnosed 2 years ago after wrongfully being diagnosed with labrynthitis 5 and half years ago. My GP was useless and actually told me to stop making it up!! A few years later I gained the confidence to challenge the senior partner and was referred to an ENT consultant. He diagnosed my MDDS but told me there was nothing they could do.
After another plane trip making me very ill, I searched the web and found a neurologist in my area on a US website. I asked my GP to send me to see him which he was very happy to do.
In the last year I have been on beta blockers which have made the 4 year migraines disappear. I feel more able to carry on but no relief to the feeling of motion and other symptoms.
I was 23 when I had my first symptoms after a short boat trip on holiday. I seem to be somewhat younger than the 'average' age of onset and have the attitude that it will not beat me. I am trying to fly high in my career and this condition has put me back... I hope one day someone will find an answer as some days make me feel very depressed.
I am not the person I use to be and it has changed my life, something I have to live with but you have to make the best of it.
Keep smiling people :-)
I have overcome the depressions and life is becoming bearable, except for the symptoms of MdDS. It is unbelievable that in this day and age there is no cure or medical research to its root solution. At 74 I am able to just sit or lay until the problem subsides, I know it's not easy to take time off and lose money while suffering at the same time. I pray there is a cure soon for all of you at a younger age so that you may live a normal life.
Just a little note to say a big 'thank you' for acknowledging my article in Take a Break. I am very touched that it may have gone someway to helping you 'define' and finally understand what you have.
I have survived Guillian Bearre Syndrome 10 years ago where i was completely paralyzed and in the hospital for 3 weeks. I was given blood treatments and got well very quickly. Seven years ago I was diagnosed with breast cancer, had mastectomy and chemo. Got through those two with strength and positive attitude.
November 10th, 2011, took a flight from SF to Boston to visit my son who was college freshman. Dizzy off balance and blurred focusing issues, full head yet light headed. These symptoms came on an hour after I landed. I have faced like many people some bumps in my road but at least there has been a cure for my past health conditions. This MdDS is so upsetting. I feel like when I know what I need to do to fight for my health I am amazingly strong. MdDS is so unpredictable as the symptoms change all the time and the uncertainty of it going away is always in my mind. I am frightened to get back on a plane to visit my son which breaks my heart most of all. The thought of not traveling to see the world with my family is hard to imagine.
Does anyone else have blurred vision, for example seeing distance (like faces)? My eyes check out fine but my vision changes all the time to more or less blurred.
Thank you for reading my long letter. Best luck to us all and may the new year bring some positive news!
This time it was a 30min harbour boat trip in Rhodes. A week later I'm seriously troubled by the rocking etc. Last time it lasted 4 1/2 months, had a bad xmas day, gone boxing day!!! Here's hoping!!!!
I have never known if I would wake up with it or it would start at noon, but definitely by about 3 the dizziness would hit every day. If I had not gotten dressed by the time it hit it was usually almost too difficult to fight it and get out. I have never really known what would make some days better than others. I did know that stress definitely made it worse or triggered it if it had not started yet. By 6pm the dizziness would be peaking and the pressure in my head made me feel like my head was going to explode. It would be hard to focus and concentrate because of having to fight the dizziness & pressure in my head but I did not give in and kept getting out and doing things in spite of the horrendous symptoms. The common greeting I would give my husband if I met him someplace for dinner would be "I'm spinning like a top!". The fatigue has been extreme and having 6 children to try to keep up with, 8 grandchildren, supporting a husband still working at 72 who has his own horrendous illnesses - cancer, RA & COPD, and a mother with Alzheimer's and a disabled dog it has been exhausting but I have been determined to not let this mysterious illness get me! I have gone through all the tests, VNG 3 times, MRIs, EEG, balance tests, Vestibular PT, hearing and vision tests, visits to Neurologists, ENTs and Carotid Artery testing and all have come up negative. The last visit to a second ENT who diagnosed me with a "Mood Disorder"! Told this ENT he would have a mood disorder too if he had had to live his life everyday being dizzy! Telling me I have a mood disorder was the last injury upon injury. I had gone through the VNG test three times and each time with negative outcome. Through my own continued reading on different sites about MdDS, and finding that some have responded to taking low doses of Clonazepam - .25 helped with their symptoms - I have now stared my own regime & found taking .25 mg 4xs/day I am no longer dizzy each day only if I forget taking the .25 & get behind. So I now have hope and will continue to pursue with medical guidance and get into a research group to help find out the cause of this disease and a cure for all!
I have always felt things like the plane is landing for a day or two, or after getting off a boat or ship felt like I was still on the boat for a couple of days, and thought that was just normal. But after this last trip in May everything kept moving and I felt horribly nauseous and had trouble concentrating. At my Dr.'s request I had an MRI, then he sent me to an ENT who promptly diagnosed me with migraines in spite of me not having any headache, to which she replied that migraines can manifest many ways without pain and the motion and confused feeling was the migraine. I called my Dr. who also thought this was rubbish and he sent me to a PT who specialized in dizziness. When I described my vacation and then my symptoms she said she sees hundreds of patients with this and said it was MdDS. She also said I should get a second opinion and referred me to a Dr. who sends her patients with this disorder and he would know if this is truly what was going on. I went and he did diagnose me with MdDS.
The PT gave me daily exercises to trick my brain into understanding I was on land and stop the motion. It helped. It took about 5 months for it to go away. During that time I would feel fine in spaces with windows or large rooms, but if I walked up a stairwell or even down the frozen food cases at the grocery store, even small rooms, immediately things would start moving again, but would stop as soon as I removed myself from the area. It had completely gone away as of October and then I went on a business trip where I had to ride an elevator 4 + times a day for 4 days and upon driving home, the next day after getting home everything is moving/floating, I am nauseous and my concentration is gone. It has been two days.
I am now wondering if I haven't maybe had this my whole life and those plane and boat feelings that lasted for a couple of days was MdDS in a milder state and now that I am over 50 it is worse. I am going to start the PT exercises but I am horribly depressed that it is back full steam after just elevator rides. Does anyone else know of other things that starts or makes their MdDS worse? I plan on living to the fullest but will gladly take stairs rather than an elevator if I can avoid things that make it act up.
I am a High Court judge in South Africa. I self diagnosed MdDS 10 years ago after a boat trip. It sometimes goes into remission and goes away with passive motion but is worse at the end of the passive motion, which is a bit of a catch 22. I love skiing in Italy but after each long flight (ten hours each way) it has been much worse. Presently it is extremely bad after having returned from Italy in January this year. It is also not improving but seems to be getting worse. I have contacted the Mount Sinai research institute in New York. They have identified me as a candidate for their latest treatment and want me to come in July. However, they are unable to say whether it will not return when I get back to South Africa, as the flight each way is about 18 hours. For those interested, the treatment is over a period of four days with three sessions of about 40 minutes per day. It costs about 2500 dollars. What I do not understand is why we cannot have the same treatment in the countries where we live? As I understand it the treatment involves mainly visual stimulation and the use of some machinery. Does anyone have any thoughts on this?
My comment is addressed to the South African judge. I have an appointment with Dr. Dai end of June. I was gonna fly but have decided to just drive. I read in the email to bring Xanax or something similar to help not bring it back.
As for why no one else is doing this is because they are the ones that developed it. Sooner or later with more positive results I would hope others would learn how and offer hope to sufferers. Only if money is involved as well. Unfortunate that's what motivates others.
Perhaps our paths will cross. Good luck and I'm just counting down the days to finally finding relief and continuing on with my life as everyone else wishes to as well.
My ENT diagnosed me with MdDS after returning from a 7 day cruise Feb 7, 2015. I am in day 22 of MdDS and am about 70% now, which all benefit happened over 1 week by using their treatment. My Chiropractor in Woodbridge, VA read the article and told me what to do. You need to download an app onto your phone for iPhone - it is called OKN Strips for Android, it may be called OPK Strips. Bottom line it is an app that will display red and white stripes that move. Part of the trick is figuring out which way to watch the strips. In my testing with eyes closed, arms held out straight and marching, I did NOT rotate in either direction. However, I always felt like I was rocking to the right. So based on the study it says in this case to go in the direction which you feel you are moving (this can be trial and error - either you will feel better or worse after about 3 sessions). All you do is turn the app on (slow speed, 0 or 1) hold it out in front of you and stare at it. Do this for 3 to 5 minutes. Then I would tilt my head to the right 20 degrees for a minute then to the left for a minute then back to the middle. I would do this every 2 hours.
Day 1 after doing this 3 times, I knew I was making progress. At the end of 2 days I was at about 50%. Then I regressed over the week-end, too much stimulus and was depressed, however; on Monday I started again and while staring at the strips I did continued slow movement of my head from right to left at about the same feeling as the waves of the ocean. This has me at about 70% and this is my day 22 with MdDS. I literally can feel the dizzy moving in my head. It is mainly concentrated on the right side of my head and in my right eye. Yes, this absolutely affects my vision as it puts a fuzzy halo around everything. As my symptoms have improved, my vision is not significantly affected anymore. I am trying to figure out what movements I need to get full improvement.
I went to a neurologist in Falls Church, VA, however; he was really not interested in learning about MdDS or helping me. He did tell me to get Vestibulor therapy, which I need to look into. I fully believe that with the right head movement and therapy the majority of individuals suffering with this nightmarish illness can be significantly helped.
Please post and let me know if you try the Strips therapy on your own. I too was looking into going to Mount Siani in NYC but did not want to live a day longer with this than I have too. God Bless you all and may you also see results like I have from using the OKN Strips app. This helps your brain and vestibulor system get back in better balance.
I wish I could get in touch with you to talk. Please could you describe any of the treatments that have been performed that you believe have helped you? Also, could you describe your symptoms as well please? Thanks! Week before last my chiropractor did some eye tests on me and said my left eye was definitely weak and not tracking as well. My vision definitely feels out of sync at times. I also felt like I was being pulled back and to the right when I closed my eyes and stood with my hands to my side. He had my put my left arm out and he stimulated just my right arm by tapping it from my hand all the way up to my shoulder. After he did this and I closed my eyes again with my hands at my sides I did not rock at all. Unfortunately it didn't last but it does demonstrate that stimulation can have an impact. I look forward to hearing more from you!
FYI - Dr. Dai is who you want, Dr. Cohen does not handle the treatment. The iPhone app I listed in my earlier post will work on your iPad. It only costs a few dollars. I wish I could speak with you but I think there are enough details in my post to begin trying the app. Keep in mind, it you have the lines moving in the wrong direction for you, you WILL feel worse. Therefore, if that happens just try the other direction. I had significant improvement in 2 days using the app.
This week I went to a Vestibular Therapist and validated that my VOR is off (eyes and head are out of sync). She had me staring at an x at eye level about 3 feet in front of me and turning my head from side to side keeping my eyes on the x. (this is a small side to side movement so eyes can stay fixed on the x). I do this fast for 30 - 45 seconds about 4 times a day. I also do this by moving my head up and down, again for 30 - 45 seconds.
Another important treatment I am trying is Neuro-stimulation. My Chiropractor tried this 5 days ago on the lowest setting. He takes electrodes and moves them around my head. It takes about 20 minutes and it gives off a light electrical stimulation. I did not really feel anything the day I had it done, however; the next day I had my best day. The ringing in my ears lessened and the dizzy in my head and body also lessened. I felt the improvements for 3 days and then on 4th the dizzy increased again. I had a 2nd session today and feel much less dizzy again. We shall see how I do over the next few days.
Let me know how you do with the app.
As an aside, I see no mention of neon or low energy lights. These are particular triggers for me, and now I don't go anywhere that has these, I very rarely get the symptoms. Leaves a lot of restaurants and shops that I can't enter, but a small price to pay for not going round and round.
What I'm wondering is if anyone with a clear diagnosis can explain the sensations associated with this, other than "feeling like you're on a boat." Do you feel like you're actually heaving with imaginary waves? What is the swaying like on the low end of the scale (via the foundation website)? I'm just very confused. Any help is much appreciated. Thank you!
ely my symptoms have been severe and relentless. Does anyone else find hangovers unbearable?
Thx so' much. Pls tell me when your treatment is in May.
I had rotator cuff repair surgery February of 2015 and was put on oxycodone with acetaminophen which I took according to the prescription for 6 weeks as needed for pain. Once I stopped the medication I began to feel in my head as if I were walking on a moving bus. Also, my head felt full. I had thought maybe my sinuses were congested, but they weren't. These symptoms lasted for about 3 months. For the past few days I have felt as if I were on a ship on a stormy, rolling sea. And I still have the full head.
I have been to my primary physician who referred me to an ENT who thinks I have MdDs. My problem is getting my insurance to allow me to see who the ENT wants me to see to confirm his diagnosis.
I am not a fighter. I am concerned that I will give up because of having to "fight" with insurance, doctor office staff, and my rotator cuff repair being a bust.
It was discouraging to discover that no cure is available.
Thank you for giving me a place to tell my story.
With the stepping I felt like I was going right. So I did the stripes to the right. Now I still feel like I'm going front to back, so I will try to go vertical now. Just trying to get a better sense of which way I'm going so I can get the stripes right. Thank you, Tstone for getting the word out!
Saw my doctor yesterday and she referred me to a doctor of ear/nose/throat and I am let off work for the next 1,5 weeks. My doctor had no suggestions. I have read about Mal de debarquement syndrome, and it sounds exactly like that. I also read there is no known cure.
So I turn to you for tips: are there things I should avoid, or do I just go according to what is (not) comfortable? For instance, should I limit TV watching or just stop when I feel dizzy? Are there factors that worsen the condition? I am afraid to trigger this even more. Can I exercise? I love to run, and find that fixating my eyes on the horizon calms the dizziness down.
Further tips would be of great appreciation!
I have been suffering from many symptoms for over two years: swaying, gait imbalance, headaches, some ear fullness. And after two plus years some anxiety, although I try to keep that in check. I have been to so many doctors, too many to mention. I have seen ENT, gone for vestibular testing, neurologists, an ataxia neurologist and now seeing a naturopath and integrative neurologist. Every doctor has not been able to diagnose or help me. They have given diagnoses but only on paper.
The integrative neurologist I just saw is sending me for more blood work and another MRI and MRA. I am doubtful anything will show up after reading all your stories. But in my visit to her, she casually mentioned MdDS and so I have been reading about it. But even though I have been on ships, boats, planes and trains, my symptoms came on after a long car ride. So I am dubious that I have it, although I do have some of the symptoms.
So after this long-winded diary, how do they diagnose it? Is it just going by your symptoms?
There is a wonderful book called "Life Changing Foods" by Anthony William. Check it out. His first book called Medical Medium talks all about mystery illnesses. Very good and insightful.
Thank you for listening. I am living life to the fullest as best I can but it gets lonely. I feel I have to do a lot of pretending and I do feel that other people have a hard time understanding. One friend told another friend that I am a hypochondriac. So hurtful. I am a two-time cancer survivor and did well with staying positive through surgeries and radiation treatment. But this is tough when there is no diagnosis and you have no idea how to help yourself.
After reading this page I decided to get up to date on some of the research (I do have a look every now and then on my mum's behalf, but there hasn't been much available).
I stumbled across some more work that has been on done to progress Dr. Dai's treatment that showed some signs of success. I guess it's worth a try. An OPK app can be downloaded on your phone - or there is even one on YouTube.
Like others have said, the first time around I didn't know what it was and apparently neither did my doctor, as he was rather dismissive and seemed as though he thought it was all in my head or that I was just making it up. After that I came across a program on TV titled ?The Woman Who Couldn't Stop Rocking. It took a while for her to find a doctor who knew what she had (MdDS), but her symptoms were exactly like mine (the sensation of constant rocking). Even though mine has gone away, eventually, after anywhere from two to six months, when I have it, the rocking is constant.
Now my husband is scheduled for back surgery in less than two weeks in a city five hours away by car on curvy, mostly two lane roads. We are considering having a friend with a private plane fly us home, which would cut the trip down to 40-45 minutes, which would be great for my husband. I'm torn about what to do. I don't get MdDS EVERY time I fly, it won't be a long flight, and we won't fly as high as we would on a commercial flight, but I don't know if any of that makes any difference as far as getting MdDS is concerned. As I said before, so far I've always gotten over it after a while, but my fear is always - what if I get it again, but this time I NEVER get over it?
The posts I read here all seem to be from people who have had it for years. Has anyone else reading this had it like me, where it comes for months but then goes away until possibly the next flight or boat ride?
I was interested in reading about the woman who developed MDDS after her company moved to a high-rise. I live on the 28th floor of a high rise building in Chicago. We had just started wondering if that might be a contributing factor.
Best wishes to all MDDS sufferers and their loved ones. And to others, please try to understand. MDDS is a very alienating disorder.
Mount Sinai Human Balance Laboratory
Timothy Hain Chicago Dizziness Center
Mesa Audiology Balance Institute
LIBR- Brain Institute
Although I am on the wrong side of 70, I have always been in very good health, can read and drive without glasses and love a glass of wine. Now I am thinking I should stop the glass of wine and drink masses of water. Boo hoo. I am English but living in France. A trip to Mount Sinai Hospital would not be easy.