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effective treatments for Mal de debarquement syndrome (MdDS)

Posted , 15 users are following.

rachele62777
rachele62777

I’m looking for an effective treatment for MdDS. 32yr female. Not on any medications.  Ongoing symptoms (more than a year) of rocking/swaying feeling when standing, sitting or lying down. 

Symptoms dissipate when driving, and light walking. 

1 like, 18 replies

18 Replies

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  • helen_33917
    helen_33917 rachele62777

    Posted

    I get it when sitting standing  when I walk slow I notuce it if I walk fast it’s not so bad x 
  • rockymama
    rockymama rachele62777

    Posted

    Hi. I’ve had it for almost four years. I take venlafaxine, lowest dose, and amitriptyline, lowest dose, which def help. I take klonopin when needed (night before a big day or a travel day). These together have made it very manageable. Hope this is helpful. God bless. 
    • rachele62777
      rachele62777 rockymama

      Posted

      Thanks! I will look into these with my doctor. I’ve been putting off taking medications, hoping the symptoms would dissipate naturally. 
    • asis48059
      asis48059 rockymama

      Posted

      I can't stand I feel off balance, vision has become blurr, I feel my legs jammed and tired and weak stiff neck, eyes and head took much of anxiety when I lye still and breath I feel I have I am floating in air and blood is not flowing in my legs and then my legs suddenly feel normal like someone put life in it and becomes tired

  • chris39583
    chris39583 rachele62777

    Posted

    I suffer from time to time with balance issues but it is not MDDS. Im 35 male I thought it may be that but after years I realized it was something different. My best friend growing up was visiting about a year ago and I told him about my issues. He told me he was diagnosed about 3 months after an offshore fishing trip with MDDS. Almost a year later he was still fighting it. He was on valium and meclizene for a while. He said to me Chris this might sound kinda simple but if I sleep every night laying flat on my back trying not to lay on my side and my upper body elevated with lots of pillows I hardly feel any symptoms. But says if he accdentially while sleeping ends up flat laying on his side symptoms come right back. Might be something simple to try. Good luck!
    • hildana13197
      hildana13197 chris39583

      Posted

      hai Chris I hope you still check the reply. I Have vestibular issues that make me feel like I am floating or spinning especially when I'm laying down and have my eyes closed. sometimes i also notice mild spinning sensation around me when I'm laying down. I was diagnosed vestibular neuritis / vestibular migraines. But for a while I did think it was MdDS. As I feel movement when laying down. However, unlike the typical mdds symptom I dont feel internal moving when sitting still or walking. only feeling slight off balance. I only feel the movement when laying down and have my eyes closed. I am so confused. What makes you finally think that you dont have MDDS? what kind of test did you go through to have solid diagnosis?

    • kevin37871
      kevin37871 hildana13197

      Posted

      i have done every test you can imagine. Where do you live? I am in Virginia and was finally accepeted into ear and balance center Dr Shia in Richmond Va. I am on meds and sleep with a mouthgard for TMJ. I feel like a new person. I take klonopin twice a day and I feel great thanks to Dr Shia.

    • hildana13197
      hildana13197 kevin37871

      Posted

      hai Kevin thanks for the reply. Do you have the same symptoms as mine? the floating sensation like u are moving especially when you have your eyes closed? I heard about TMJ as well but i am not sure I Have that as I dont feel pain in my jaw. how long have you been suffering from this ? I am on my 3 months and its driving me insane. Doctor gave me amytriptilin which helps a little especially to help me sleep bcs i feel constant spinning and swaying as I Close my eyes.

  • marlene21102
    marlene21102 rachele62777

    Posted

    I've had this same condition ,going into year 8 . Mine began after an Osteopaths visit for my Sinisitis ,Im on a FB site for Mdds , they gather info into it ,it's ran by 2 ladies who are knowledgable . Im fine if driving have been since it began , it's standing still ,and often walking,which I don't care to do since its onset . Wouldn't wish this on anyone ever . Who has Sinisitis and Tinnitus ?and Mdds like myself . Never know what we will face any day of the week ,never heard of balance probs until this came to me . 

  • Ruffian829
    Ruffian829 rachele62777

    Posted

    You should see a vestibular physical therapist. They can give you exercises to help. You can also YouTube exercises to help with MsDS and labyrinthitis. I’m going on six months (also 32yr old female) and the exercises are helping. Slowly, but it’s disipating. 
    • asis48059
      asis48059 Ruffian829

      Posted

      I can't stand I feel off balance, vision has become blurr, I feel my legs jammed and tired and weak stiff neck, eyes and head took much of anxiety when I lye still and breath I feel I have I am floating in air and blood is not flowing in my legs and then my legs suddenly feel normal like someone put life in it and becomes tired

  • helen60137
    helen60137 rachele62777

    Posted

    Hi rachele

    Can i ask how you got the diagnosis and what tests you had done.

    I'm waiting for ENT appt so I'm not really sure what I have got but just know it's awful.

  • lorna31689
    lorna31689 rachele62777

    Posted

    I'm just a week in to discovering what on earth is going on with me. I've suffered three months of the most severe stress after my husband suffered a very debilitating stroke. I live on an island and he's hospitalised on mainland so have been travelling on ferry 2 hours a day every day. Normally the boats don't bother me but since last week I've experienced the most odd symptoms of perpetual motion and weird spells of disassociation. its like waves. my feet feel odd if i look down whilst walking I can't get orientated, like ground moving?. In car I'm fine, in fact I'm most comfortable but outwith sitting it is bizarre?

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