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Mal de debarquement

Posted , 5 users are following.

melissa04000
melissa04000

Not sure if I wrote out that name like I should have out, but has anyone had this before for months and got rid of it after months and how? I'm suffering so bad. I've had it for like 6 months now. It's gotten worse over time. What do I do? If you have bad stories please do not write, I'll get more anxiety. But I need help asap. It's ruining my life the last year so far.

0 likes, 11 replies

11 Replies

  • tanney
    tanney melissa04000

    Posted

    HI Melissa.  I've never heard of this.  What are your symptoms?

  • melissa04000
    melissa04000

    Posted

    You feel like you are constantly on a boat. It's constant swaying. In your sleep, everything. It's usually after you have been in a car, boat airplane. I've had it for months, it's ruining my entire life.

    • tanney
      tanney melissa04000

      Posted

      OK...thanks.  Tell us what you have done in seeking help.  Have you been seen by an ENT doctor or by any doctor?  If so, what did they tell you to do?  If you have not been seen, your very next step should be to make appointment to see an ENT who will administer different tests to come up with a diagnosis.  Once you have that then the curing can begin.  Tell us where you are in the process.
    • melissa04000
      melissa04000 tanney

      Posted

      I have seen an ent doctor, not about this, because they thought it was something different and I wasn't just on a boat or anything, I was on a plane less then a year ago. They were treating me for vistibular migraines and menieres both on which now they aren't sure that I have. I mean I feel sick in my sleep even. I barely leave the house, I'm scared out of my mind that this won't go away.

    • melissa04000
      melissa04000

      Posted

      Someone actually just came up with this, so I was wondering if anyone has heard of this and had it
    • tanney
      tanney melissa04000

      Posted

      I think you should see a different ENT.  See one that specializes in inner/middle ear problems.....not all ENT do.  In the meantime you might want to ask your regular doctor to prescribe a mile sedative like Ativan which calms the ears and will calm your anxiety until you can see the ENT.  Good luck.
  • patricia69095
    patricia69095 melissa04000

    Posted

    There is a Facebook group for this called MdDS Friends. You could join that group and find more information about the treatments people have had that were successful. Also I noticed an article about a new treatment that is successful for Mal de Debarquement on the website for Mount Sinai Hospital. Go to mountsinai site and search for New Treatment for Mal de Debarquement. Hope this helps you!

  • donna16710
    donna16710 melissa04000

    Posted

    I have read that although this syndrome is difficult to treat there has been some success with vestibular rehab programs. You need to retrain your brain to stop the cyclic pattern it has set up. A lot of people with menieres benefit from this and it si worth a try. You will probably have to get an ENT to prescibe it.
  • melissa04000
    melissa04000

    Posted

    I either have menieres or this. All of it is frustrating. I don't want either. But I'm t ting to figure out if I have menieres

    • tanney
      tanney melissa04000

      Posted

      Melissa, it is easy to determine if you have Meniere's Disease.  The classic symptoms are...

      1.  hearing loss in low decible range.  Your ENT will determine this with a hearing test in the office.  Without low decible hearing loss you do NOT have MD.

      2.  You also have to have vertigo that lasts at least 20 minutes and up to 24 hours and usually comes upon you unexpectedly.

      3.  You would almost always have some degree of tinnitus and ear fullness.

      Your ENT is experienced in diagnosing MD....trust their judgement.  If you find that you do have it, we can help you cope on this forum.  If you get a chance read some of the other threads of comments under Meniere's Disease for other helpful ideas.

      let us know what your ENT says.  good luck

  • robert1943
    robert1943 melissa04000

    Posted

    I hope my story helps you. I developed Meniere's Disease many years ago. I went to a specialist who was familiar with MD. He prescribed me Valium, which masks out the dizziness. I took a valium pill when I felt an attack coming on. It works well, but it is an overall muscle relaxant and so it also made me sleep. I decided on opting for an endolymphatic shunt operation. This involves the insertion of a very small straw-like device into the labyrinth sack, which then allows for minute amounts of fluid to drain when the pressure builds up. After the operation, my attacks became fewer and fewer. I went from 2 or 3 attacks a week to 1 per month. I had maybe 1 attack a month for 10 years, eventually fading to none. Also, the attacks got milder and milder. I now have no attacks at all.  You should also know that my doctor told me that 99 percent of all vertigo attacks are caused by inner ear infections. At the time of my diagnosis, the only way to diagnose MD is by ruling out all other possibilities. After my operation, my doctor told me that he saw lots of scar tissue during the operation, and so this confirmed that I had had MD for several years. I am very happy that I chose this procedure.

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