MDDS or Vitamin B defficiency?

Posted , 3 users are following.

Hey guys,

Here is my curious case and list of symptoms that I have been experiencing for over a year now. My problems started with an unusual episode of palpitations that lasted for over a year until they subsidised. This was then followed by about of:

Recurrent episodes of insomnia;

Irritability;

Decreased aerobic performance - i.e. seeming that I couldn't 'fire up'/warm up my body during exercise;

Most importantly, consistent feel of rocking/swaying sensation when sitting still. This led to initial diagnosis of Mal De Debarquement (MDDS) which is fairly rare syndrome.

Abnormal sway/kick neurological impulse when holding breath for 5 seconds.

At the beginning of my symptoms my b12 test returned 400 result, which was in normal range.

I've started taking B supplements recently which solved the first three symptoms (insomnia, irritability, decreased aerobic performance). It feels my swaying sensation is subsidising gradually as well.

Anyone been in the same 'boat', and how long it took to resolve?

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2 Replies

  • Edited

    Hi there

    I'm Jennifer and I come from Holland. I am diagnosed with Mdds since may 2019. The symptoms started in nov 2018 just sudden when I woke up. Heavy balance problems, fatigue, brain fog, nausea, serious headaches, anxious feelings, skipping heartbeats, etc. I couldn't walk at first, I had to crawl to the bathroom in the first weeks. I was very very ill. The doctors thought it was due to a virus so I had to deal with it and wait for it to go away eventually as it could take a few months they said. But it did not fade away, sometimes it even get worse for some period of time. The heavy sickness changed into an ongoing less severe but still unfortunate feelings of constant motion 24/7.

    I also experience the sensations of bobbing/swaying, rocking and floating while sitting or laying down, even while eyes are closed.

    I had to quit my fulltime job.

    (It was a very stressful time for quite some years. I had a burnout in 2016 which took about 1 1/5 year to recover from. Not the 'typical' one but a serious total breakdown which resulted in failure phenomena and hospitalization for a few weeks. At first no one expected I was blown away by a burnout but after 9 months of medical investigation this diagnoses was the only one left)

    A half year later (in 2018) I got a total medical health investigation because the strange dizzy feelings were persisting. They took bloodtesting, vestibular testing, MRI scans etc, the whole package. But everything was normal. Except for the HIT test, Head Impulse Test was positive. And bloodpressure was very high. Most likely due to high anxiety which is quite normal for patients with MDDS unfortunately.

    My vitamines were all ok as well.

    I tried to get back to work for several times in the understanding that this illness would be temporarily but that was/is still not the case..

    I'm a 37 year old female. Dealing with this extreme bizarre diagnoses for over 2 years now. The only thing that eases my mind a bit is by walking on a flat as possible surface or driving a car or boat, but not too long because the symptoms are getting worse most often after exposure to these activities.

    The doctors in the Netherlands do not have any clue what to do with Mdds or how they can treat this. I feel quite alone over here as nobody really understands what I am going through. There's nothing to see from the outside. I can do groceries today but in my own time when I feel like I can handle it. In the first year this was not done, every product in the shopping mall was moving and swaying. I had to stand outside waiting for my husband to do groceries. Inside small rooms the symptoms are increasing. The horizon is wobbling all the time especially inside buildings and thus rooms etc. Even now still, after 26 months. This feeling is less worse when I walk outside with a wide range of sight. The horizon as much as far away eases the bobbling sensations a bit temporarily.

    Meditating and reducing stress as much as possible is the only remedy (for me) to soften the affects of Mdds. Hopefully with this strategy we maybe even get rid of this awful sh*t one day 😉

    Luckily my husband knows what affect this syndrome has on me and the daily life. I do not look ill but there is something unbelievable going on on the inside people can't imagine how hard and difficult it is to deal with.

    We hopefully can be treated in the future. Let's pray for that. This is no nonsense!

    Wish you all the best.

    Maybe we can get in contact to share our thoughts.

    Warm regards,

    Jenn

  • Posted

    How long it takes to resolve is how long it takes to swim across the Atlantic ocean. The point being, it depends on you and your health lifestyle. Some medications adapt better to others and faster to others than yourself and vice versa.

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