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 Mal De Debarquement Syndrome
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IrishMonkey92

Ireland
3 Posts

Posted - 02/21/2019 :  14:18:11  Show Profile  Reply with Quote
Iíve been a following Dr.Sarnoís work for only a few weeks, and Iíve been quite interested in his workings. Iíve been reading many stories on here from Balto, HIllBilly and Ace who all stand out to be prominent success stories. I was wondering would people be able to help me figure out if my issue is TMS or not?

Iíve had a pretty turbulent 3 years. I had an incident 3 years ago and have never been the same since. It involved being hungover and finding blood on the toilet. I had basically a near death experience with that moment, an autonomic storm occurred - all sorts of symptoms hit me and then I felt like I was on a boat while waiting to get checked in hospital. After I got the all clear but I was left with terrible panic, anxiety and about 100 symptoms. 3 years Iíve somewhat recovered, but I still deal with some symptoms (easily triggered stress, eye floaters, tinnitus, visual snow) but most prominent is a type of dizziness, like walking on a boat/ground moving/swaying sensation. Itís there basically everyday and varies in intensity.

Iíve been given a diagnosis of Persistent Postural Perceptual Dizziness which is a type of functional disorder. However I am triggered by travel - i.e the sensation gets worse after long car journeys (2+ hours). This worsening in symptoms after travel is more consistent with a diagnosis of Mal De Debarquement Syndrome which is usually triggered by travel (boat, plane, train, cars) but has also been known to be triggered spontaneously. The symptoms match what I experience.. Usually people who get MdDS either have it for prolonged periods of time (months to years), or get triggered easily after some periods of remission. Iím due now to travel on a boat and a very long car journey in April and Iím terrified. I would say I also have PTSD over the idea of this journey making it worse. To be honest, I wasnít a great traveller to begin with before this (phobia of flying and extremely anxious about boat journeys). I heard HillBilly had a sensation of walking around on a boat and he cured himself, I wish I was able to speak to him, but I hear heís retired now. Maybe someone else can chime in?

If you want to read about Mal De De Debarquement: https://www.frontiersin.org/articles/10.3389/fneur.2018.00042/full
https://youtu.be/yuKE4wdhkT8

weatherman

USA
183 Posts

Posted - 02/22/2019 :  00:06:32  Show Profile  Reply with Quote
Last winter I slipped on the ice and smacked my head. No concussion or anything, but in the following weeks I started getting bedspins when I started to get up in the morning. On someone's advice I went to an ear-nose-throat doctor, who did the "Eppley Maneuver" to reposition the inner ear crystals, which he said likely got knocked out of whack when I fell. I was pretty well back to normal within a week with no further trouble.

Maybe you've already been down that road, but if not it might be something to look at. The condition was called benign paroxysmal vertigo I think.

"Good judgement comes from experience. Experience comes from bad judgement."
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IrishMonkey92

Ireland
3 Posts

Posted - 02/22/2019 :  03:00:33  Show Profile  Reply with Quote
Hi weatherman,

Thanks very much for your reply. Iíve have been checked by an ENT and donít have BPPV as you describe. A slight right ear abnormality was found, however itís compensated (meaning no symptoms should be experienced),and the ENT believed it doesnít match my symptoms (no spinning vertigo, no nystagmus, no issues with balance or bending over etc) - hence a separate diagnosis of Persistent Postural Perceptual Dizziness was made.
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