Hello all. A few days ago, I was diagnosed by a neuro-otologist with MDDS (mal de debarquement syndrome). I have some of the characteristics of this, but I am still a bit unclear on a few things. First of all, i do not recall my symptoms starting up right after a voyage of any kind (even a simple car ride!). Second, my onset was quite gradual. It is true that i traveled alot in 2009 (the year of my 1st dizzy spell), but i had a grand total of maybe 10 spells that whole year. Dr. said this must have started after one of those travel adventures in 09, but i can’t exactly put my finger on the date, and i have an excellent memory.
Between summer 2010 and Jan 2011, symptoms gradually became more frequent. Ever since last Jan., I’ve been Relapse-Remitting.
Recap of symptoms during Relapse: dizzy at least 75% of the time (this means rocking, swaying, tilting, and on bad days, I can have multiple spells of feeling like i’m going down a fast elevator). Worse with sudden or frequent head movements. Trouble focusing eyes because things seem to shimmer just a tad. Lots of head pressure but rarely headaches. No family or personal history of migraines. Like many people with Mdds, I feel better when in motion. Ativan, exercise, and usually lying down brings relief. Neuro exam, MRI, bloodwork, VNG all normal. I have some symptom relief when i avoid caffeine. Thoughts?
Hi and welcome to the forum,
I don’t know a great deal about MdDS but according my notes from my neurologist I have likely had one or two episodes (my neurologist has never actully discussed this with me or even told me about it, it’s just in my notes).
I believe there is a lot of overlap and/or comorbidity between MdDS and vestibular migraine/MAV. I’m pretty sure that to satisfy the diagnosis that you don’t actually don’t have to have had some sort of trip recently on a boat or plane and anyway, I think it can occur after any sort of travel (eg train). If you do a search on the forum you’ll find more about it.
Through the magic of Facebook and six degrees of separation I’ve learned that Sydney University has a vestibular research laboratory attached to the School of Psychology (why Pysch I don’t know) that is doing a lot of work into MdDS. It’s late here in Australia so I haven’t yet looked at the publications but there might be something of interest:
http://www.psych.usyd.edu.au/vestibular/
Vic
Hi,
The symptoms you are describing are like many of mine and I have a diagnosis of MAV. To be honest there seems to be a lot of overlap between the conditions, and I wonder if people are sometimes misdiagnosed with MdDS if they don’t have headaches. However, you don’t need to suffer from migraine headaches to have MAV (though quite a few of us get landed with both!).
I don’t know all that much about MdDS but I seem to think it’s not got a cure? In which case I wonder whether you have anything to lose by trying treatments for MAV instead? You can try changing your lifestyle (e.g. going to bed and getting up at the same time each day, eating regularly throughout the day etc) and avoid common migraine triggers to see if you get any improvement. There is a lot of information about this on the website. You could also try migraine preventative medication and see if that helps.
Hello,
I’ve never been diagnosed with MDDS, although I was initially diagnosed with VN which I either never had because it was MAV all along or triggered the MAV. It seems to be when it comes to vestibular disorders it is hard to pinpoint exactly what is going on some of the time and it becomes a process of exclusion. If it isn’t one thing it might be another etc…
In your shoes I wouldn’t exactly be thrilled with an MDDS diagnosis, especially when to my untrained eye, your symptoms could sound exactly like many on here who have MAV. As far as I know and I’m no expert, I don’t think there is a cure for MDDS. In your shoes I’d be very interested in why I was given an MDDS diagnosis and not a MAV diagnosis. If the best your neuro oto can come up with is that you don’t have headaches or a family history of migraine, (guess work, I don’t know their reasoning) I would get a second opinion with the hope of trying migraine preventatives. As someone else said, a lot of people with MAV don’t get migraine headaches and as for family history, your great great grandmother could have been a migraineur and you probably wouldn’t know.
Also, a huge trigger for my MAV is flying in a plane. Interesting as it could be suggested this is MDDS, but I know it isn’t. I had a grandmother who had migraine (although I didn’t discover this till I’d been ill for a good year) and am also now violently photophobic which makes my illness a bit of a no brainer.
If there is nothing your neuro oto can do for you, then you have nothing to lose by seeking an opinion from a neurologist who is known to know about MAV.
H
Your neurotolotist is much more qualified to make this judgement than I am, but Id like to share my opinion.
MDDS is rare, but MAV without a personal or family history of migraine is also rare. However I still feel that MAV without the migraine history is more common, and therefore more likely than MDDS. Additionally, it can be proven by successful treatment (unlike MDDS). I would treat as if this were migraine realated, and if you still have remaining symptoms akin to MDDS, then you will have reason to suspect MDDS.
All well covered above. Important to know that MddS is rare and migraine very common. By stats alone, it’s more likely migraine given the general nature of your symptoms. Do you have any light or sound sensitivity?
Best S
I have suffered from MAV for 20 years and until a year ago, something is totally different- I am rocky 24/7. (My MAV is usually true vertigo attacks last 30 minutes and dissapear) I also have suffered from MdDS but didn’t know there was a name for it until a year ago as well. Since a little girl, I have felt like I’m still skiing for days after on the mountain, on the boat a few days after a short ferry trip, in the waves at the beach after a swim at the ocean- I just assumed my body had an awesome “muscle memory” and just started to avoid things like roller coasters and boats. The list goes on and on. Cruises? No way. Until I did VRT, the therapist and nuerologist diagnosed me with MdDs- what a shocker.
I am wondering if this is what is happening to me but I also didn’t take any significant trips- I just gave birth. After reading a few articles, Dr. Cha, from UCLA says that it doesn’t have to be, it can be brought on from stress, etc.
http://abclocal.go.com/kabc/story?section=news/health/your_health&id=8389660
After reading the articles, I am thinking this could be also what’s happening in my brain. I feel best moving in the car and inside my head just feels like it’s always moving. Hope that helps.
Very phonophobic. Last night at work, i was actually feeling “okay” (symptom severity scale 3 perhaps)…until I put on my headphones. 
Volume wasn’t set terribly loud but I felt overly startled when the music started up, and IMMEDIATELY felt like I was going to pitch forward coupled with bad head pressure. Turned volume down, and tried to deal with it for about 15 minutes and finally gave up, turned it off. Symptoms improved again back to baseline 3 a few minutes later. When I stop and look back over the last 3 years, I have had more headaches than before; they’re just so mild i never cared or brought it up to doctors. Oops.