Tom’s story: relief from the rocking while hitting the road again

I am – it seems – one of the rarer male cases.

I have specific memories of exactly what happened at the time I suddenly started to experience symptoms. It all started one night two years ago while out doing my pizza delivery job, which I have now quit! It was a busy night, and I suddenly noticed a rocking/swaying sensation, or as if walking on a mattress, or being on a boat. This came on suddenly and has been exactly the same ever since. About a week previous to this, I had a (non-vehicular) whiplash incident in which, due to my raised anxiety, my neck jerked backwards in an unnatural way. (I do have an elevated level of anxiety but don’t take any medication for it, or any other medications.) Along with the onset of imbalance, I also experienced neck discomfort for about one year.

When I was twelve years old (I’m 33 now) after a long car journey, I had the motion symptoms for about a minute, which scared the life out of me. I’ve always had problems with my inner ears; the ENT said there is nothing wrong with my ears but I have chronic ear pain.

I want to stress that I experience no other symptoms at all, no dizziness, confusion, etc., but the symptoms do definitely get worse the more anxious I am. I find when I feel completely at ease the symptoms almost disappear, or happen just once in a while, but when I am among a crowd and feel slightly uneasy, the symptoms are far, far worse.

I mostly get symptoms while standing but if I have a had a stressful day or am feeling particularly run down or anxious, when I lie down and move my legs just slightly I get a distorted feeling of motion. I have noticed that sometimes when I get symptoms my eyes distort, too.

I have seen an ENT but my doctor was the one to suggest possible MdDS. After searching the Internet, I felt that MdDS was most likely because, along with others, I have found that when I am out riding my bike or in a car the symptoms completely subside.

I remained unemployed for a while, looking for a job with no prolonged standing where I could sit down, but I’ve have recently started doing a driving job again. And I have become a much less anxious person. The symptoms haven’t changed at all. But I have found that because I am less anxious when I have a busy evening, I feel that in some way I can ‘train’ my way back into completely controlling the symptoms. In some way it feels like the driving is actually helping me to recover my centre of gravity. Also when I wake up in the mornings and am relaxed I feel like it’s not really there. When I force my body around to do things (like washing up for example, which really exacerbates symptoms) it’s a lot worse, but when I am fully relaxed and doing something I enjoy which in no way makes me nervous (like walking in the forest) I can feel quite fine.

I hope my experience helps others.

Tom
Age at onset: 31

Tom’s story: relief from the rocking while hitting the road again was last modified: August 11th, 2017 by MdDS Foundation

17 comments

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  1. Tom

    Hey guys and girls!

    Hi, I just watched back to the future, which led me on to learning a bit about parkinsons, and that reminded me ‘oh yea, I have mdds!’

    I’m not sure how ones psychology effects mdds or if there are really differences in severity in each case.

    I mentioned in posts before that I had anxiety issues, well I’m happy to say I’m now pretty much 100% free of anxiety, I’ve made all sorts of lifestyle changes including quitting smoking one year ago (I’m on ecigs)

    Because mdds is a big life changer for all of us, I think it’s great to have is site where we can share our experiences with each other, this is extremely helpful I’m sure, seeing as anxiety seems to be a major major trigger.

    I just want to share that I feel I am 100% in control of my symptoms!

    I know there has been absolutely no change in the severity of my mdds and it is still there just like it was on day one BUT I’m actually at the point where I only experience symptoms IF I WANT TO.

    So I may be standing in a queue in a shop and I’ll think to myself ‘oh this is where I normally get bad symptoms, but I have none, I wonder if I still have it?’ Knowing fully well that I do, and I’ll close my eyes and rock back and forward on to my tiptoes because I know that will induce symptoms, and guess what?? I get EXACTLY the same symptoms as I did at the beginning.

    Now let me describe another scenario. I’ve found a lovely place to go for a walk, It’s an old roman built road in the east of England near Cambridge. It’s completely peaceful there and you can see for miles around. I’ll go for a really long walk, I’ll stand around, run a little and for the whole trip I won’t think about mdds, not even once! Even when I get back to my car I still won’t think about it, in fact I’ll go weeks now without the thought of it, yet I know it is still there if I induce it…

    So what I really wanted to say is that I feel I have it completely under control and it doesn’t affect my life, really at all any more (probably in some part because I’m so used to it) and that I can almost compare it to very severe wound that has been slowly healing over time, just don’t pick at it and it won’t bleed!

    So my advise would be:

    Don’t brood over it
    Stay active
    Don’t hang around in places that make you feel anxious
    If you can try to train yourself not to feel symptoms, LEARN not to Bob and rock
    Know that it is a finite thing and will never get any worse
    And…
    Make the kids do the washing up! 😉

    Peace and love

    Tom

  2. Quentin

    I learned for me, chewing gum helps a little bit, with doing neck turns left and right..

  3. Rob

    Me and my wife just got back from cancun, I’ll give myself more time to settle back in, but this last Thursday after a long bus ride into chichen itza, I felt this strange feeling like I was on a boat. It took me by surprise as I’ve never felt this sensation this strongly before. I’ve felt similar effects after coming off of a boat, but not nearly as strong, and certainly not as long lasting. So Thursday was the only day. I didn’t feel it Friday or the Saturday morning or afternoon during our travel back to oregon where we live. When we got to the hotel in Portland, I started feeling that sensation again, and has not gone away, except when back in the car. And I noticed first thing this morning that I wasn’t feeling it, until a couple of hours after being awake. Last night it felt the worse while taking a shower. I’ve been online looking this up, and I kept coming across vertigo, and I didn’t think that was it, because I’m not dizzy at all. The world isn’t spinning. I just feel like I’m on a boat. Then I came across this, and it describes what I’m feeling exactly to a tee! Like I said, we just got back home, and I will give myself more time to settle in and see, but I’ve never felt like this before, and as I’m talking about and feeling the anxiety in my belly, simultaneously, I feel the waves of motion come over me, it’s really weird. Anyways, thank you for your story.

  4. Andre

    Hi

    Im a 31 year male from Norway, since June 14 i’ve had this swaying rocking feeling, like beeing on a boat.
    It started some days after a 10 km competition run.
    It dissapears when driving a car, better when walking in mountains. But walking on flat ground or sitting still its worse.
    Doctors dont find anything, ear specialist say that its nothing wrong with my balance organs in ear.
    I dont know if its mdd i have, but it seems like it when its described.

  5. Mario

    Male, 35 years old. I was working on a docked boat setting up instruments for scientific research at lake mead. The first day I spent 5 hours on the boat, then next day spent 3 hours on the same boat. Then I immediately took a flight to Denver. Before boarding the flight, for a short time I felt the swaying, rocking feeling but it disappeard. I remember having a migraine on the flight over to Denver. Then at Denver, we had a very turublent landing.

    For two days I did not have any symptoms. But after two days the rocking, swaying feeling appeared. It dissapears when I commute on train to work or when I am driving. This is the second week and still have the symptoms.

    I am hoping this does not last long.

  6. Clenda

    Hi, this will be my first post. I have finally had a doctor who told me about a 3 1/2 year rocking/swaying problem. MdDS. Dr. R. Tusa saw me in July,2014 and immediately diagnosed my balance/dizziness. He put me on a rollator exercise program and medication. I am finally walking without a cane or walker; but I still have to be very careful of falling. My problem now is driving my car. Have any one else find that driving is different from just riding in a car? I would appreciate any advice.

  7. Ann Carlson

    Falling is very dangerous. I fell 4 times the first summer I got Mdd. I was sent to a neuro-therapist and she taught me to strengthen my ankles. The exercise is standing on tiptoes and then lowering very slowly. About 10 times 3 times a day. I have not fallen since I became aware
    how important strong ankles are to catch yourself when you feel the possiblity of a fall

    1. Tom

      Hi Ann, sorry to hear about your falls. Sometimes I have a little anxiety that I may fall, I know though the limit of how much I feel my body moving though and it never goes beyond a certain point. I’ve had mdds for about three years now, I still feel positive though that I may get rid of it some day. I’m really just keeping active and trying not to let it bother me. I can still feel emotions and have done some very brave things recently like asking a really pretty girl out who I met in a shop! I really feel that you can still be completely healthy and have this, but if you let it get to you you can imagine all kinds of other symptoms. In my own case the rocking and swaying is the ONLY symptom I have to deal with. Hope you all feel better! And try to chillax! All the best. Tom x

      1. Shelly

        Tom, my sx’s are identical to you. I rock and sway only. It does wax and wane however, most days i am a 1-3, BUT I certainly can go to a 8-9. I’m 8 weeks in. Any advice. I am choosing to be med free at this time. How long have you had it and what tx are you doing? Thanks!! Shelly

  8. Tom

    Thanks for all your comments guys, or should I say girls! Catluvrmh, yea it must be annoying when your doctor says such things. Margaret, thanks for the advise. I find symptoms are really exacerbated by anxiety. Jeannine, good idea it would be great to hear your story.

    I read something on another site which said just to be glad it’s not a life threatening problem. I have a friend who has huntingtons disease which is destroying him mentally. It is very unpleasant. I think the only thing we can do is accept it and try to live our lives to the fullest, my sympathy goes out to you guys! Thanks for your responses :)}

  9. Jeannine

    Thanks so much for sharing. I am 40 and suffer with MdDS as well. I should write my story. I do fall a lot because my balance is so out of control.

  10. Margaret

    Sorry you’re going through this Tom. I have a lot of anxiety myself. The best thing for me is exercise. It helps relieve the anxiety. I just have to work out until the anxious feelings are gone. Good luck!

    Margaret

  11. Well, Tom, welcome to the club. Glad to see a male sufferer! My doctor thinks our syndrome and symptoms are: a) a female psychosomatic attention getter, or b) a symptom of advancing age. You don’t have to contend with the latter yet and I hope you never do. It’s so disrespectful and demeaning. Not enough research has been done yet to name it properly, determine a cause, and better yet, come up with a cure. We who have had this for some time can attest to what you report. The stresses causing it to get worse, the exhaustion, etc. Take the good times and try to repeat them and when they happen. Try to keep the anxieties at the minimum – I know, easier said than done, but do try to make it your own as often as possible. I’ve ‘trained’ myself to control the unsteady gait, to not look up or down (especially amid confused visual patterns) and to enjoy the cessation when driving! Keep the faith, keep well, and keep us all in your prayers that a cause, treatment, and cure will be found soon.

    1. Quentin

      has anyone had blood pressure issues, since having MDD? heart palpitation?

      1. Quentin, if you are a member of either of our online Support Groups, this is a good question to ask there. We have many more members in the Support Groups than read this blog.

      2. Maggie

        ENT doctor has just suggested that I have got vertigo. I definitely feel palpitations and although have not checked blood pressure since having symptoms, I do know that my blood pressure dropped considerably whilst having a ’tilt’ test last year due to almost passing out after bending down. My heart was checked out thoroughly and the drop in pressure was the only untoward thing. So now I recognise how it feels. I also feel nausea – is this felt by anyone else. I live in UK not USA. I am going to be referred to have ear tests but before I can do that I am booked to fly to Australia for almost 3 months to see my ailing parents. I just hope it doesn’t make it worse – I’m supposed to be helping my parents not hindering. It has been a relief to find this comment page.

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