Has anyone seen Dr Halmagyi for MdDS?

Hey Aussies,

Has anyone seen Dr Halmagyi for mal de debarquement syndrome?
Just wondering what his treatment is for this syndrome.
My neuro in Brisbane says my symptoms are typical of MdDS but the problem is I hadn’t been on a cruise. Then I had an epiphany yesterday that at the time I was riding the train to and from work every day and apparently short train rides can produce MdDS.

Any input would be helpful.

Ella

Hi Ella –

Please see these three previous posts:

http://tinyurl.com/37tuczs

I’m guessing you are not experiencing any headaches or know of any recognisable triggers?

Good luck with Dr H … Scott 8)

Dr Halmagyi is my doctor. I recently met a woman socially who had travelled from Perth to see Halmagyi as she had been sick for two years and no-one could figure out what was wrong with her. Halmagyi diagnosed her with MdDs. He did prescribe her something but unfortunately she couldn’t remember the name of it when I met her. I could try tracking her down to find out if you’re keen…?

Vic

Victoria, if it’s not too much trouble it would be amazing if you could find out which drug it is. My neuro has prescribed Klonopin but I’ve read that in the long term this drug could make things worse.

Scott, I do’nt have headaches but thought i MAV was a possibility because my mum suffered migraines.

Thanks for you input. Greatly appreciated.

Ella

— Begin quote from "ella85"

Scott, I do’nt have headaches but thought i MAV was a possibility because my mum suffered migraines.

— End quote

It could still be - I don’t get headaches either (never had a “classic” migraine but have had 2 clasic visual aura experiences that didn’t lead to anything) but my neuro diagnosed MAV based on that, my other symptoms and family history (3 generations) of migraineurs

although bear in mind I’m saying this not knowing what your symptoms are :smiley:

Lorcalon- what are your symptoms?
What is a visual aura?
I sometimes see silver spots in my vision which is a migraine thing. And lately i’ve been having really shakey vision which someone said is migraine related.
My main symptom is this dreaded constant bobbing sensation when i walk.

HI Ella 85

Visual auras can be lots of things - my 2 classic ones were just like you see on the migraine tablet packets - a zig-zag of flashing squares across my eyes. However from time to time I get silver sport / slashing spots / scintillation. I do sometimes get that bobbing sensation when I walk, but not that often unless I’m really overtired. But the sensation was kinda like my eyes were bobbing in my head / not “stabilising” if that makes any sense? Might be like your shaky vision. Sometimes I feel as though my eyes are flicking around a lot because there is a subtle but persistent sensation of movement (but they are not clicking and I’m not moving and neither is the world, it’s just the MAV. I used to get the sensation that I stopped moving before the world - so when in a car and the car stopped and I opened the door to get out I’d feel like the ground moved a bit - I was forever checking the brakes cause I thought the car was sliding :lol: It only lasts a split second but it’s very definite. I would also have “blips” where I felt like I’d just dropped off a cliff for a second - that sensation you get when your stomach flops when the rollercoaster/car gets to the top and starts going down. However my balance seems fine most of the time (I can walk a straight line with eyes closed, ride a bike etc)

My other symptoms were(are on bad days) nausea, tinnitus, wooly-headedness, sometimes some head pressure, and “physiological” anxiety (thanks Vic :lol: ) (ie the physical anxiety symptoms but not the mental ones (I’m not actually anxious about anything)

All of these things are much better with meds/lifestyle changes

Hi again Ella,

I have not yet found out what med the lady from Perth is on for her MdDS but apparantly she is quite a bit better (and she only saw Halmagyi about 3 months ago). I do know he told her to take up swimming which apparantly she found horrible at first but she persevered and now believes it is helping!

Cheers
Vic

Thankyou for your replies.
One person has mentioned that Dr H has prescribed Cinnarizine for MdDS - however this is not readily available in Aust for some reason.
Swimming great - I have just finished my pool and it’s summer so I will give it a go and let you know… it can’t hurt anyway.

If you happen to talk to that lady from perth I would love to know what drug she was on. Otherwise thankyou for the advise on swimming.

Many Thanks,
Ella

Ella I will keep you posted re the med. I do remember she said it was something that she couldn’t get in Perth so perhaps it is Cinnarazine and Halmagyi orders it in specially??