Mal de debarquement syndrome

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Mal de debarquement syndrome

Postby scott on 04 Apr 2011, 22:25

Hi All,

Lisa (MAVNY) asked me to post this for people to review. There may be some here with this going on though I have to admit I don't know a whole lot about it other than it hits after a period of time in motion -- like on a boat or even a night in a water bed! Treatment appears to be limited too unfortunately. I think Lisa may have more to say on the topic. Sorry it took me so long to post this Lisa.

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http://www.mvertigo.org/articles/mdds2009.pdf

Scott 8)
Probable vestibular neuritis in 2003 which kicked off chronic migrainous vertigo.
Treatment: lifestyle mods, low-dose paroxetine, valium as required.
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Re: Mal de debarquement syndrome

Postby Victoria on 04 Apr 2011, 22:31

By complete coincidence I met a woman who was diagnosed with MddS by Halmagyi. She had it for two years and had to travel all the way from Perth to see him as no-one in WA could figure out what was wrong with her.

I've tried to find out what he treated her with but other than a regimen of swimming (she's a friend of a friend) I don't know. Anyway, she's heaps better I'm told.
12 mg Periactin and Zantac for Mast Cell Activation Syndrome - currently not on any migraine meds as doing well.
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Re: Mal de debarquement syndrome

Postby fizzixgal on 04 Apr 2011, 23:12

This is another of the diagnoses that two neurotologists have floated around with me. My first guy considered it a "disorder of habituation"; my current MD says it is closely related to migraine.
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Re: Mal de debarquement syndrome

Postby DizzyLizzy on 04 Apr 2011, 23:14

OMG I remember back in about 1993, pre- current MAV days but post- former spell of MAV (if that makes sense) I took the hydrofoil or catamaran or whatever it's called from Bali to Lombok (being a bit scared of flying in the tiny Merpati plane).

Now I've always suffered from seasickness. But this was off the planet. Can't remember how long the crossing was (2 to 4 hours), but it was rough. I have never felt so ill in my life. Everyone was throwing up on deck and I remember finding the centre of the boat outside at the back and lying there completely still for the whole journey, saying to myself 'breathe in, breathe out' over and over with my eyes shut. My boyfriend at the time was the only person on board not affected. He took quite a lot of photos of me lying there for some reason.

For the first 48 hours on Lombok the ground was swaying back and forth and I couldn't eat a thing. But it went away.

We got the tinpot Merpati plane back to Bali...

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Re: Mal de debarquement syndrome

Postby MAVNY on 04 Apr 2011, 23:23

Hi Scott and everyone,

Thanks so much for posting. I have suffered from severe rocking, head heaviness, head spinning sensation, photosensitivity at times, and increased symptoms in highly stimulating visual environments (to name a few symptoms..lol) for almost 4 years now. I originally received the diagnosis of MAV but I am starting to believe (and my docs have questioned the MAV diagnosis as well) that I have Mdds without a motion experience (Dr. Cha says percentage of cases can be spontaneous--no motion experience! ugh). After reading Dr. Cha's paper I am even more convinced of it as the 24/7 rockcing has never gone away and is so severe that I am for all intents and purposes bedridden. I was hoping that some members of the forum with 24/7 rocking could also read the paper (it speaks a bit about MAV as well) and give me their thoughts. It is a very easily understandable paper even for the layman and she points to spontaenous cases and also to potential treatments. As you all might imagine, I am scared out of my mind with the probablility of carrying this diagnosis... ;(

Thanks so much in advance!

Warmly,
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Re: Mal de debarquement syndrome

Postby longshort on 05 Apr 2011, 00:17

I thought that I possibly had MddS since my symptoms -- two episodes of true vertigo followed by constant false motion and rocking -- started about a month after doing a lot of flying to and from Asia (15 hours in plane), but the doctors said that MddS typically starts immediately after de-boarding, and typically does not induce true spinning vertigo. So I ruled it out. But this paper seems to indicate that MddS is a broader phenomenon than previously realized. Interesting.
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Re: Mal de debarquement syndrome

Postby MAVNY on 05 Apr 2011, 07:21

Yes, I agree Longshort. The paper did a really good job of explaining the pathophysiology of Mdds and even speaks of migraine and I feel very hopeless as my rocking is so relentless and many of the same symptoms that people with Mdds have seem to overlap directly with MAV. Confusing for rockers who have been diagnosed with MAV ;(
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Re: Mal de debarquement syndrome

Postby Sally on 05 Apr 2011, 07:42

Lisa, talk to Dr. B. Cohen at Mt. Sinai, NYC, about the work of Dr. Dai.
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Re: Mal de debarquement syndrome

Postby MAVNY on 05 Apr 2011, 08:05

Thanks Sally.. I know Dr. Cohen well. He is an MUCH older doc that still firmly believes that you need a motion experience to have Mdds. He is not aware or involved in Dr. Cha's work of the spontaneous nature of this.

And yes, you are correct in him having a handle on Mdds. He was one of the first docs that saw WWII vets coming off the Naval ships and develping brief episodes of Mdds. He is a brilliant doc no doubt.

How do you know Dr. Cohen?

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Re: Mal de debarquement syndrome

Postby Sally on 07 Apr 2011, 11:04

Long story. Please ask him about the work of Dr. Dai which is taking place at Mt. Sinai. He has nothing to do with Dr. Cha that I know of but I don't know her. Dr. Cho at Mt. Sinai is another doctor who may be able to get you in touch with Dr. Dai. Google the Baraney Conference in Iceland last year to read bit about Dr. Dai and MdDS.

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Re: Mal de debarquement syndrome

Postby MAVNY on 07 Apr 2011, 11:28

Hey Sally,
I am affiliated with Mount Sinai and I too know Dr. Cho and am aware of Dr. Dai's research. I know he is doing a study with mdds folks but I did not qualify.
Thanks again!
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Re: Mal de debarquement syndrome

Postby jennyd on 08 Apr 2011, 00:39

Hi Lisa,
I was talking to an old MDds buddy who was one of the MdDS forum leaders for many years, she tried klonopin as nothing else had helped, it was kinda a last resort med for her.
She became a patient of Dr Hain, she said he spoke about benzos not being a good choice for MdDs if taken directly after MdDs had started, as he felt it could stop the normal adaption and should only be used by long timers who had run out of alternatives, he also said that keeping the dose at as low as possible I think it was 0.2mg or at least under 0.5mg that it would be safe and withdrawal from it shouldn’t be a problem, My buddy said she decided to go off it to allow the natural process of re-adaption.

I was wondering if you think benzo's could permanently change the brains chemistry for readaption due to the plasticity of the brain, not only in MDds but for anyone using a benzo with brain issues?
By the way , I'm so sorry you are suffering so with this monster!

I do believe the more we force ourselves to move and get out and about helps re-adaption, There was a surprising story about a lady who had MDds she was an athlete running marathons "very fit"
Her friend a another marathon runner, took her on a midnight run over bumpy ground over hill and dale you might say,
He took a torch with him as it was pitch black desert.
Before they started the run he said I want you to look at where I shine the light and only watch the light and think about nothing else, he moved the light on the ground from side to side, by the time they got to the end of the hours run, she had no more MDds.

None of us could believe what we were hearing, obviously this helped something in the brain to revert back to normal.
Sounds farfetched, but it is actually a true story. :D
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Re: Mal de debarquement syndrome

Postby MAVNY on 08 Apr 2011, 07:51

Hi Jenny,

With regards to your question about benzo's and brain chemistry, with a static lesion such as vestibular neuritis for example, the research has shown that benzo's may or may not retard (not prevent) the compensation process.. meaning it might just take a little bit longer to fully compensate than someone not taking any benzos at all. Benzos as many on the forum have found are wonderful vestibular suppressants. Mdds is different in that it is not a static lesion, and if you read Dr. Cha's paper she does an excellent job explaining the various mechanisms of the pathophysiology. Unfortunately, I believe your story is more anecdotal, as vestibular rehabilitation has not been shown to have any benefit on Mdds symptoms but you are correct moving as much as possible is a good thing. I also think for MAV benzos are an excellent drug of choice if it works for someone, as MAV is not a static lesion. Many docs especially in the US hesitate to prescribe them so readily for a variety of reasons, but I certainly disagree with this for people with MAV and Mdds. Of course you want to use the lowest dose that is therapeutic for the patient.

Warmest,
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Re: Mal de debarquement syndrome

Postby jennyd on 08 Apr 2011, 10:32

Thanks so much Dr Lisa.
It’s good to hear from someone who really understands this illness and who also has a medical background.
I've always feared medications like benzo's habituation ec: so I've been very circumspect with them.
I’ve read about the healing effects that anticonvulsants medications have for bi polar and epilepsy and wondered if benzo’s would be the same.


P:S
I'm trying periacton for sleep, I'm finding it's helped by slowing my overactive brain down beautifuly.

Best wishes
Jen
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Re: Mal de debarquement syndrome

Postby MAVNY on 08 Apr 2011, 11:00

Hey Jen,

I've actually recently looked into periactin as it was an old migraine med that for many reasons fell out of favor in the US. Do you find that it helps your rocking? Do you rock at night in bed when you try to go to sleep?

Be well,
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