The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

Mal de debarque


#1

Hey everyone
Just wondered if anyone could answer this for me .
What is the difference between Mal de debarque and Vm. Someone posted about this on another Fb group and it really shocked me that all the symtoms seemed to crossed over . Including headaches , tinnitus , light sensitivity ect . I’m planning to get on a plane before the end of the year and now I’m terrified I’m gonna cause myself more trouble as apparently your prone to mmds if you have a sensitive vestibular system.

Can anyone shed some light ? Has anyone flown with Vm and how were they? Also anyone got any explanation on how to tel the difference between mmds and Vm. Any help or advice would be much appreciate hope ur all well :slight_smile:


#2

Don’t get me started! :smiley:

Vestibular medicine is a farce.

Aetiology aside (ie ignoring root cause because almost nobody has a fricking clue), Migraine Associated Vertigo has some strict criteria. If you fit those criteria you have MAV.

btw, a lot of people used to not fit that criteria on here, because they have some level of hearing loss!

Those people used to actually better fit the criteria for Meniere’s.

(Hain pointed this out at one point, but seems to have revised his page … i’'ll try and find the reference).

Do I think they have Meniere’s though?

NO

It’s a farce!

Or more politely put: a limitation of our knowledge and understanding, but one we should be far more honest about.

One more thing - it’s even partisan, read this:

https://www.dizziness-and-balance.com/disorders/symptoms/committee.html

the neurologists ‘club’ get together and decide on official diagnosis definitions, and the migraine lot do regularly … but the ENT’s don’t seem to do this. Notice how these two groups appear separate - implications of that?

" on-drug treatment of Meniere’s (i.e. diet) is almost identical to diets recommended for Migraine" - Hain

“Migraine may cause symptoms that overlap with Meniere’s disease, or in some, may even be identical to Meniere’s disease, at the level that we can resolve disorders in the clinic (i.e. without an autopsy).” - Hain

https://www.dizziness-and-balance.com/disorders/menieres/menieres.html

Be very wary of this entire space!


#3

Guess I’d better try to not be too ‘stern’, eh. Think about. There’s nothing shocking about it. Both conditions affect the balance system and there must only be a limited number of body functions/parts that relate to any process within the body. Same parts affected, same/very similar symptoms?

Haven’t read much about Mal de debarque as I don’t travel but would have thought they don’t include specific vertigo attacks, or acute ‘migraine-type’ symptoms, and what about nausea. Isn’t Mal de debarque ‘just’ a constant rocking?

It would be hard to tell the difference with a known MAVer who developed constant rocking after a flight/boat trip as travel is a MAV trigger anyway. Hard one that I guess. Helen


#4

I posted a paper earlier about rocking. Rocking is not a criteria for mv, but as we know many of us “just” rock, dont have spinning vertigo. On the other hand, mddb people develop a lot of mv symptoms, including migraine! My neuro told mw many experts think is part of the same spectrum. As @Onandon03 says, there is only a finite ammount of sensations we have so… who knows. I have read many things about mdds and if i just substitute mdds with mv, i would think is the same thing.


#5

Thank you so much for replying James , it’s a bloody minefield . In a nut shell then does it even matter what your diagnoses with as treatment is similar for a lot of these things ??

I just questions how they know what to diagnose people with it makes no sense :confused:


#6

Thanks Helen sorry hope you didn’t take stern as offensive I meant it in a good way :slight_smile:

As for travel it all seems so confusing it almost makes me wonder if the diagnosis matters because they all cross over and both include vrt and meds. However I think a clinic in mount Sinai does some special vrt and apparently patients leave 70% cured god knows what that is . Don’t think that would cure a maver :grimacing::joy:


#7

Thanks @dizzy3 I personally feel like it is the same thing unless you specifically got it after travel BUT I don’t understand how they say there’s diff treatment for it it all seems the same . Also surely a mmds wouldn’t get light sensitivity or visual snow I figured that was purely migraine! It’s all so confusing


#8

Also I never have had spinning always very intense rocking I thought that was also a typical mav symtoms :grimacing:


#9

in the facebook group for mdds people talk about light sensitvity and visual snow… so who knows!


#10

Exactly.

Given there is no ‘bottom-up’ science to support any of this stuff (with Menieres there’s arguably a little more, but still no conclusive evidence on what causes it or even vertigo, one of its primary symptoms), it’s just a matter of ‘belief’.

Some say that use of preventatives proves its migraine. But that’s a totally bogus argument because no-one knows what’s causing the migraine, which might easily be some issue in the inner ear (in the case of MAV, would explain why we experience a different set of symptoms to those who have ‘regular’ migraines).

It seems to me that what’s happened here is some neurologists put out a new hypothesis of what was causing symptoms for a subset of “Menieres” patients and then took that population for themselves by defining a condition that brought them under their umbrella.

This hypothesis relies on a strong association between migraine and vestibular symptoms, but association is not causation! It could just as easily be the other way around (and that’s what I personally believe).

25 years ago we’d have all had “Meniere’s”

But that’s nothing to celebrate, its just a land grab by a specific set of doctors who share a particular ‘belief’. Shocking really.

Yes, separating these two conditions probably DOES make sense, but it DOESN’T mean the causative chain is any different. It could still be an issue with the inner ear, just not the same as ‘Classic Menieres’.

So all that really matters is what makes you feel and get better!

There’s no doubt that our particular brand of vestibular condition does at least have a clinically proven, effective protocol that improves the quality of life of patients considerably. The clinicians are not the problem! The guys in the lab need to catch up!

If you are not losing your hearing and your symptoms are generally improving, focus on that.

I hope medicine sorts itself out in the meantime!


#11

Oh bloody hell I give up! :weary:


#12

Totally agree with you James , it’s just terrible for all these people not really knowing what’s wrong with them!!

Either way your right all that matters is what you do to get better :slight_smile:


#13

hahah no, dont! one thing positive. The mdds foundation is supporting research on it, both for etiology and treatment. I keep thinking if they figure something out that would help everybody.
Other positive, i flew a couple times this year, one trasatlantic, and I did not have worsening of symptoms. So plan your trip! :slight_smile:


#14

Don’t apologise. No offense taken at all. You should have heard what the people who used to work for me said! Your comment just made me chuckle.

It’s all a bit of a muddle although I was told, 12 yrs ago maybe, By a locum, I didn’t have Menieres! He was quite definite. Unfortuately I didn’t know enough about it to ask why he’d said that. Not at my best upside-down doing the Epley I guess either!

One hears alot of definitives. Light sensitivity is diagnostic of migraine. Visual snow is always migraine. Etc, etc. I don’t suppose they ever truly sort it til they find out what ‘migraine’ really is anyway. How can they know so much about it when they don’t know what causes it or how it works. Maybe, some day, they’ll figure it all out. Helen


#15

Thanks so much @dizzy3 that’s really reassuring to hear :)))


#16

Totally agree Helen also glad u didn’t take a offence :slight_smile:

My whole family has migraine and I’ve had it on and off for years so don’t think I have mmds but it really is confusing when you research guess I gotta stop reading :joy::pray:t3:


#17

Don’t worry about the travel Amy, I have very similar symptoms to you and I’ve flown twice now without much change in my symptoms. I mean, its a bit stressful to fly with all these symptoms, but its very unlikely to worsen or create new symptoms. That’s my experience anyways.


#18

Thank you soooo much @ander454 really needed that today . Could I ask did you ever fly when you were maybe functioning at 50% id say that’s where I’m at right now . :grimacing: feeling a bit down in the dumps pitz seems to have not given me more relief so upping the dose next week. It’s so hard to know what to do in terms of meds if I remember you had to go pretty high to see results on verap out of interest did it take a while to see gradual improvement or was it more moving higher in dose . Think pitz you can only go to 4mg


#19

Yep, I flew about 6 months ago when I was near 50%, maybe even less. I had lots of anxiety walking through the terminals, trying to carry all my luggage and look after my 2 year old. Walked for a long time to get to the terminal only to find we missed the flight, then waited around for the next flight, and then a connecting flight, … uhg. It was pretty crappy, but nothing really got worse, its just stressful. Tried my best to have a good attitude, my wife was understanding when I didn’t though…

I recommend ear plugs and sunglasses in the terminal to cut down in visual/auditory stimuli.

Yeah, the meds seem to have an initial affect and then levels off for a bit. I have that with Verapamil. I’m seeing the most benefits from Verapamil when I went up to a high dose (360mg) and stayed there for a couple months. My head / nasal pressure is mild, rocking is mild, spacey feeling is mostly gone. I just have some brain fog / depression, but I’m working through it.


#20

Thanks so much I really appreciate all your help, yikes that must of been sooo tough work a two year old !! Well done seriously ! I’m glad ur other half is understanding , my bf is amazing he really does get it :slight_smile: thank god . Hence why I want to fly half way across the pond to be with him with mav lol!

Was the actually flight ok? I’m def going to get glasses and ear plugs and Valium!!

Yes that’s how I feel that I’ve had incremental benifts and then it kinda stops ? I think I may have t go higher on pitz or add another . Really glad to hear a lot of symtoms have faded or gone that’s so good to hear and long may it continue :slight_smile: I think depression is common on verap I have a bit of it on pitz I think it’s fhe tiredness that can always contribute .

However il take that over dizzy crap!