Mal de debarquement syndrome any current sufferers?

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 a feeling of constant motion, 24/7.

I also experience 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's painful and unimaginable that I still need to fight and plead for ongoing recognition at organizations who think and assume this illness is not that bad and force you to get back to work. Believe me, this is all I want too but this syndrome makes it impossible, for now still.

(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.

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.

Maybe we can get in contact to share our thoughts and have the media informed about this topic as I strongly believe this syndrome needs more recognition.

We hopefully can be treated in the future. Let's pray for that.

This syndrome is no nonsense...... we need guidance from health experts and more future investigation to treat and dissolve any disastrous consequences for people who can't handle this as I'm sure there are..

Stay strong and keep faith.

Warm regards,

Jenn

0 likes, 3 replies