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 clear..it 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 swaying...so 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?

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  • Posted

    Sounds like MdDs. I have it as well. Try Amitriptyline and use Clonazepam or Valium when needed. I also take Effexor. Lowest dose. Dr. Cha is doing a lot of work with TMS. She's great at responding to emails. It may be worth signing up for one of her trials.

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    • Posted

      Transcranial magnetic stimulation. Dr Cha is doing trials and she has had some good success with TMS. I think you should email her. She's at the laureate institute.

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    • Posted

      Thank you so much. Yes I will contact her..sadly I live in the UK. But maybe she can advise me..I would be really grateful if we could stay in touch..I hope you don't mind if I occasional message you..to seek your advise too. Huge thanks

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    • Posted

      I don't mind at all. I've had mdds for two years. I manage the symptoms. Don't let it get you down. Live your life. Most people recover. There's a lot more research now than there used to be. You shld get on Amitriptyline and get a prescription for clonazepam for when you need it (especially when traveling or days you will be busy). Dr Cha will likely know someone in the UK you can meet with who specializes in MdDs.

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  • Posted

    By the way the fact that your first episode resolved bodes well that this one will too!!
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    • Posted

      Oh good that's great to hear. I do try to get on with things..evenue though things are harder to do. The only big change for me is that I am currently of sick and not working. I am a high school teacher. At the moment the thought of being responsible for a class of 30 teenagers worries me..especially with the fog in my mind at times and the thought of feeling unsteady while teaching does rather frighten me. Do you cope ok with work how do you manage if you don't mind me asking.

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    • Posted

      Hi sorry to butt in I am the same as you - currently off sick worried all the time about my balance and everything that goes with it. I have been in and out of work so much that it's got to the point that my doctor has told me I am not going back until I get a firm diagnosis. I feel so awful trying to get on with work - stressed. I hate letting my colleagues down. The sad thing is l love my job x

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    • Posted

      I have done some consulting work. Yes some days it's harder. On days I have to perform I take a small dose of clonazepam. I also exercise regularly which helps. The amitriptyline helps w brain fog. Take a bit to ramp up on it and more dizzy for those few weeks but it helps. Magnesium also helps w brain fog. It will get better in time. Have faith.

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    • Posted

      Start w walking. Increase over time. Exercising is great for the dizziness. May be dizzier for a bit after but then it calms down. It has helped w balance. I could barely walk the first three months and then I was able to do that and more. You will get there.
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    • Posted

      Right I have been scared to do it I use a walker and a stick but am going to do this - thanks for that! I get very anxious being out on my own - l have had dizziness in the street which scared the life out of me x
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    • Posted

      No thank you for saying. Butt in anytime smile I understand your fear completely. I do use a stick like you and it gives me confidence but I must admit I feel much better walking with someone else. I have found walking in open flat areas is best and eventually when you walk in areas like that you fall in to a more natural stride. But you have to do this each time...If that makes sense.?!? Are you in the UK?

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    • Posted

      I don't go out much on my own I must try that on my own. Get some confidence! Yes it makes sense but I am barely walking at pace ( snails overtake me!) yes I am in uk - I take it you are? X

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    • Posted

      Yes I am. Today I found a list of specialists in the UK. And I rang all the consultants secretaries to check they could diagnose and treat this condition. If you're having problems getting a diagnosis I would really recommend you do the same. Some places in fact most had never heard of it even though they were on the list of the MdDS foundation

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    • Posted

      I got a referral to the Glenfield Hospital - Leicester. Neurologist I will be seeing in August is Mr Fancourt. But I have heard that there is a lady based in Kent who is supposed to be brilliant. If I don't get a firm diagnosis in Leicester I am going to try this Kent Hospital. My god this condition must be virtually unknown x

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    • Posted

      Thank you I will see my Gp about it. By the way I have done as you suggested and contacted dr Cha ....so fingers crossed I will let you know.x
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    • Posted

      Hi I just got myself an appointment with a dr surrenthian in London - it's private but I don't care - £250 for consultation. He knows about MdDS. I like you phoned around and this was the only place who knew what I was talking about! Only a month to wait x

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    • Posted

      Oh that's great news. Have you read the paper which has been writ ten by Dr Cha it's published by the national institute of health. Also did you say you were taking any medication?

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    • Posted

      You would probably have to wait a lot longer if you were not going private. I rang about seeing a consultant via private it was going to be almost 500 pounds for the first consultation and 250 for subsequent
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    • Posted

      Hi dr Cha did email back...suggested to me to look out for trials in Europe if Brexit would still allow me to take part. She also suggested clonazapam and ssri As my appointment with a consultant maybe at the minimum of 2 months, I rang my Gp to tell him about this treatment. He will not prescribe clonazapam ..as it's a controlled drug and very addictive.but if the consultant I see does then fine but he would consider an ssri. Which he said was very much different. I read these are highly effective only for a very few people.. but at least is something to try. And fingers crossed I might be one of the few people who it does work for. Did you say you had tried ssri...I think they are antidepressants?? X

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    • Posted

      I have changed to a different neuro someone nearer, he actually rang me back and we had a great conversation. I have hope! Going to look at Dr Cha  is it US based or UK? At the moment I am on sertraline for anxiety and 2mg diazapam for panic attacks. Tried no end of different meds - nothing has worked so far. The expected waiting list on NHS would be at least 3 months so am being thrifty and saving x
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