Migraine and MDDS, a connection?

Hi,
Does anyone else here worry that thier migraine will turn to MDDS? I have heard that the rocking sensation that a lot of migraineurs experience is a lot like MDDS and in fact some doctors think the ‘spontaneous’ type is actually migraine. I know that these two disorders are closely linked and lately when I am bent over doing something I will occasionally feel the rocking sensation and I am actually not dizzy and feeling pretty good at the moment except for the ear fullness and pressure and pain I get from time to time. But when I feel this slight rocking, I think, OMG does this mean that I could get hit with a bad spontaneous MDDS someday? I am now terrified to travel long diatances for fear of this disorder ever since I found out the relationship between the two. I don’t know that much about it except for the little I’ve read from some of the posts and they really scare me.
Just one more thing to add to the list of worries and wonder what everyones thoughts are on it.

Hi Halfthere,
An ENT then a neuro diagnosed me with MDds 14 years ago,
Due to the fact my Mav was triggered by a long plane flight from Australia to China, it was during a very stressful period for me.
I got off the plane in china and my life has never been the same.
Rocking 24/7 with only a few remissions.
Both the neuro and the ENT told me to just go home and learn to live with it.
That it would eventually go away, it never did
That’s what I’ve done until things became worse and aura became more visual ect
Over the years I had small remissions with the help of antidepressants I chose to take.
But it always came back
I was only diagnosed late 7007 with MAV.
Pressure in my ears in the first couple of years. Yes!
But have had pain in my ears on and off,
When I have been in remission,
I have been triggered back into rocking with my motion intolerance by another motion experience,
Treadmill
Boats
And spontaneous, which turned out to be stress or tiredness.
There is a forum for FUND RAISING and to give ADVICE to those in need.
They are looking for answers on what MDds is and raising money for clinical trials.
And trying very hard to raise awareness within the medical community that this disorder really dose exists. So people with MDds don’t have to suffer the indignity and hapless care of the medical professions lack of knowledge on the subject.

You can learn about MDds here. Or join the forum.
Best wishes jenny :smiley:

mddsfoundation.org/

Thank you so much Jenny, I am so sorry you have been dealing with that wretched condition. I don’t experience what you have, I am just hoping I never do and that is my concern.
But how many people with MAV have only the mild rocking sensation at times without it ever amounting to anything? I sometimes get a slight feeling of motion while bent over or at the computer and then when I straighten up or stand, it goes away. What is that about? Or does it always mean that it will evolve into what Jennyd is living with? I worry that I am worrying!! :shock:

Halfthere-

I get the occasional rocking, bouncing, feeling like I’m walking on marshmallows thing too. I have for a couple years, but its always gone away. For me it will last anywhere from a couple minutes to an hour, and sometimes it will be on and off for a day or two, but thankfully it goes away.

With all of my many MAV symptoms (and there are LOTS) I’m constantly battling the fear of “what if it doesn’t go away, or what if it gets worse??” I have come to understand that my fear of the “what ifs” are more detrimental to me than the actual symptoms. Maybe I can say this because I have seen an overall improvement with treatment, diet, etc., …

Maybe someone else (Jen? :smiley: ) can say more, but in my opinion, I wouldn’t think that because you are having this at times, that you’re headed for it 24/7.

I know what its like to be where you are, and it can be downright lonely and scary. But thats what we’re here for.

Kim

Hi Halfthere,

Comorbidities

MAVers can have more than one illness or co morbid conditions.
Mav can come with BPPV
Bending over, straining, Val salver type movements, can cause other problems,
It’s been mentioned by other regularly here’. Including myself, bending over to dry my hair is a NO NO. It sends me reeling for and hour.
According to my tests I have no reason except for MIGRAINE.

If you haven’t had a chance to look Adam And Scott have organized some amazing files at the front of this site: about some of these conditions similar to MAV ect

I’ve wondered if I could have this one???
As well as mav, because I know darn well I’m suffering major anxiety

Other issues some vestibular patients can suffer.

When Vestibular disorders occur, as we are all too aware,
Eventually we becomes depressed and full of “anxiety”
The patient eventual adapts to their condition SOMWHAT
Hopefully their condition is treated successfully with medication.
Rarely unwillingly and unintentionally some patients will fall back into the vertiginous cycle again
It’s called Psycogenic dizziness,
Unbeknown to the patient, they believe the original disease has returned.
This isn’t a hypochondrium, and it isn’t attention-seeking behavior.
It doesn’t mean someone is Crazy!!
I supposed you could call it adjustment,
Similar to people whose anxiety causing fight and flight response acts as panic attack,
It’s just another form.
Boy I hope I’m explaining this properly, I’m no DR. hee hee!

It is successfully treated with Cognitive Behavioral Therapy using exposure exercises, similar to the ones used for OCD patients.
And can manifest as ROCKING sensation.
At least this is my take on it.

P’s
People with epilepsy have told me they also suffer with MDds symptoms, and that’s from the horse’s mouth. Not form any neurologist.
I meant to add that in and email to a friend yesterday but forgot, because I got on one of my crazy med induced half-baked tangents and left it out. Lol
Hope this makes sense
I’m of to take some more evil nasty meds. ‘
That make me feel like punching something :twisted:

Halfthere,stressing about becomming worse , will make you worse,
consentrate on getting better not wroes sounds easy hey??
NOT
15 YEARS and nothing got worse till the past 3 so dont pannic , you’ve got time to turn this around, your probably younger?? than myself.
and have your whole life ahead of you.
you have a diagnosis, right ?
Migriane?
hop on the medi go round with us
tough it out no matter how bumby the ride
and you’l eventualy get better,
in the mean time cranky crazy jen and other not so cranky people will be hear for you. :smiley:
you can ask us anything you want, and vent your heart out.
keep your chin up
((( hugs))))
jen

Jen,

you mention Valsalva worsening symptoms. Is that typical of MAV, BPPV or both?

Julie

sorry julie, valsalva worsens my symptoms and others here with mav.
halfthere is new and may not have read it.
jen :smiley:

jen,

i can’t believe i never thought to ask you !!! you have more documentation than any MAVer I know.

Boslee and i have been trying to find a resource for whether Valsalva worsens MAV or not for at least a week or two. And here it was right at our fingertips :slight_smile:

Thanks Topa sis!

Hi guys, what is the valsalva maneuver? How is it done and what is it used for?

the same action your body uses to push out a stuborn poo. :mrgreen:
straining
increasing pressure and not letting the air get out
popping ones ears ect
jen

This might help:

en.wikipedia.org/wiki/Valsalva_maneuver

miss smarty pants. :mrgreen:
didnt you like my explanation. hee hee.
:wink:

LOL- !!! Jen, I was doing just fine with your explanation, until I read Julie’s. Made me see I needed a little more “smarts” in that department, know what I mean??? LOL :lol:

Kim

whats the time over there you insomniacs.? :mrgreen:
you all as bad as me

— Begin quote from “jennyd”

miss smarty pants. :mrgreen:
didnt you like my explanation. hee hee.
:wink:

— End quote

I guess i thought we made a good team, Jen and I - Jen put her twist on it and I put mine. Seems like mine just added confusion. A wealth of useless information - story of my freakin’ life :slight_smile:

Jul

You guys do make a good team. Together you cover all the bases!!! (Must say, Jen’s description was alot more fun to read Jul :wink: )

Its what I love about this place. If you don’t know somethin’ just ask - somebody’s got the answer!!! :mrgreen:

Kim

— Begin quote from “AZdizzy”

Its what I love about this place. If you don’t know somethin’ just ask - somebody’s got the answer!!! :mrgreen:

Kim

— End quote

even if it’s just how to make Kitty Treats :wink:

Now thats a description I can understand! How pathetic is that, lol!! :smiley:

which one half there?
which one was the the best .
NO come on tell me ,
COME on,
COME on :mrgreen:
was it the poo one ? right ,
That one, HA !,
well was it?
that was mine!
I liked that one, HA? :mrgreen:
I know it was. :mrgreen:
JEN
see jules :twisted:

Jen-

There are some days when my brain just doesn’t wanna work, no matter what I do, and I have to drag out the dang medical dictionary just to keep up with you guys. (No offense Julie :mrgreen:

Kim