Mal de debarquement

Posted , 5 users are following.

After my own research I feel I may be suffering from mal de debarquement.

The reason I think this is for the following reasons

1 the first occasion I felt like this two years ago followed a very rocky ferry trip. I never felt like I got off the boat. It felt like I was walking on a trampoline and I felt the floor moving up and down as if I was on a boat. Poor balance. Mri lasted 4 months. I did vestibular exercises.

2. This time I have had this since end of January this year. No ferry involved. The symtoms to begin with were more worse. I feel like I am on a boat and everything is bobbing around...or I am bobbing around. Just like the sansation of being on a boat.

I have read that subsequent bouts of this can be triggered spontaneously but it often can longer and more severe.

3. The sensation goes when I travel in the front seat of a car. And I also noticed relief when I swam I felt relief. I have read that passive motion can make the symtoms disappear.

Does anyone know anything about this condition? Would a neurologist or an ent consultant be better to speak to about this.

I saw an ent consultant who said my symptoms were oscillopsia..And visual vertigo..?? I'm not sure but my symtoms are feel unsteady as though I'm on a rocky boat and bobbing around and as though I am bouncing. Some times it feels more prenounced than at other times. Often I feel it when I am in bed as though I am on a ferry bobbing up and down but it does subside usually but not always. Often I feel like I'm am swaying and even though I try hard to keep still I am actually it is not just a perception of movement there is sometimes a slight sway which is almost unperceptable to others but noticeable to me.

I had an mri scan which was clear 2 years ago and recently had 2 balance tests calorific hot/ cold air...which also came back clear...

My first ent consultant said I had inner ear damage..this was over a year ago.

My second ent consultant wrote to my Gp saying he doesn't know the origin and perhaps it's panic attacks. Ent just said come back in 6 months ...December no change to treatment. No further advice.

My Gp has now refered me to a neurologist ...

This is a bit of a repeat post but I have spelt it correctly this time!!! and given more detail...

I would LOVE to hear anyone else's experience of this...or views or research... smile

Does anyone know of a specialist in the UK?

0 likes, 31 replies

31 Replies

  • Posted

    hi, i wonder f you can help. i have had 2 bouts of this. once last year after flying lasted all week while on holiday. have just come back from venice, all the time over there, while motionless i felt like i was in motion, swaying etc. but while on the boats (a lot of them!) flying etc i am fine. but i am flying again in 2 weeks and am concerned this is likely to happen again. i have some amitriptyline, if i was to try this, when woul di do so? during flight, when i get there? ny help would be greatly apprecaited. thank you
    • Posted

      Hi sorry for delay. So sorry! I don't know if it will happen again I think it's different with everyone. Yes I am ok on boats etc. But am ill ( bed bound ) for days afterwards. I think amytryptyline helps with sleep to be honest. Now I am off it I am a total insomniac and symptoms are worse for me after no sleep! It won't get rid of it though. I am thinking of you - it's a horrible thing, I am 2 years in now xxxx

    • Posted

      Thank you so much.. Am sorry you are unwell with it. It's just such a disorienting experience

      And I just trying find a way of making it a bit easier before flying again in 2 wks. I appreciate your support. Hope u start to feel better soon.

    • Posted

      Your welcome it's nice to have a chat with someone who has the same! I just thought of something that might help ask the doctor about a low dose of diazapam there is some belief that taking this prior to travel it can help dampen down the problem. I am going to ask about it - I would only use it for "special holidays!" Though. Xxxbiggrin

    • Posted

      Great thank you. It is good as most people I talk to have never heard of it. And I swear some think I am making it up. I will ask doc and see what they say. Take care

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