New to vestibular migraine, migraine without headache?

Then you wouldn’t have MAV, because they have identical symptoms, according to two of my doctors!

It seems the only distinguishing feature was the evidence of trauma.

That and er: ‘belief’

Basically what has happened is a sub-discipline (mostly oto-neurologists) have re-defined a set of symptoms and essentially claimed all these patients for themselves.

The ENT’s don’t professionally argue because they know they can’t do any better to manage symptoms, but one can only guess at the loss of revenue!

Many ENTs don’t want to treat dizzy patients. I have a high school classmate who is an ENT. Years ago I saw him at a reunion and I told him that I had been diagnosed with a vestibular disorder. He sighed and said, “I have instructed my staff not to schedule more than two dizzy patients per day for me to see. That is all I can handle because it is so frustrating.”

That I can believe!

Again, I disagree. They have overlapping but not identical symptom sets.

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So what in your view is the symptom(s) which distinguish(es) them?

And how do you have explain that I’ve been diagnosed with MAV by three doctors, “Something central” by one and “(Secondary) Hydrops” by two (and one of those said I either had MAV or Hydrops!). All of them had identical information.

In fact the guy who told me I probably had “Somethjng Central” said he knew that if he referred to some of his colleagues on Harley Street they would tell me I had Hydrops!!

They can’t all be right, right?

Unless of course it’s the same thing …

How does hydrops explain my numb hands, visual snow and IBS, all of which wax and wane together with both dizziness and migraine?

It is not the same thing not even close

ENTs are getting educated across the US in vestibular migraine.

Last 10 national trials for vestibular migraine were heralded by ENTs.

If i had SEH, a super high dose of meclizine should help me. It does not do squat.

800mg ibruprofen stops my dizziness in the track.

With effexor my ear symptoms are 0. No ear pain, No aural fullness. Extremely mild tinnitus.

Then i get exacerbations which are the actual migraines. With SEEDS ( sleep, exercise, eating right, drink water, stress) i am able to space them apart.

When they say vestibular migraine etiology is not understood., it is in the same vein as migraine not understood. THERE IS NO DEBATE IN THE ACADEMIC COMMUNITY THAT THIS ORIGINATES IN THE BRAIN.

The world has adapted that the world is not flat. 20 years before you will be dismissed as menieres. Now thankfully we know it is vestibular migraine. Keep up with the times James.

Listen to the speech on migraine summit. The doc clearly proved migraine causes sinus.

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Not even close? According to my central London doctors at the heart of the teaching hospital community they are split on my case. Why would that be? You are saying that half of them are not educated enough?! Not keeping up with the dogma/flavour of the decade?

Yes they are not.

A medical professional spends 4 hours of education in headache and migraine training. Fact based on research

So if I have MAV then apparently you can get it from physical trauma. Why would that be?

you have PLF. Anyone who diagnosed with MAV is wrong.

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OK for now I’ll leave it there

If i went on to argue i see all symptoms of BPPV is same as MAV. Hence BPPV= MAV. This does not make sense as all vestibular disorders have imbalance and dizziness as the common denominator.

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Don’t get me started again on my views on BPPV :wink:

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Lol…no we don’t want to go there :slight_smile:

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Hehehe

Hope you doing better Vignesh

In all honesty James i have days where this crap feels like it felt on day 1. It is a brutal assault on my psyche. I was one of those guys who wanted to say “have had this more than a year and getting worse” in your poll :slight_smile:

But this thing morphs and waxes and wanes and becomes mild, then one day it hits you like a pile of bricks. I need to follow a very strict lifestyle (or lack of any style in life) to keep this from exploding. It is still always smouldering in the back burner. I would rather be a rock than have this crap :slight_smile:

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For what it’s worth (and if there is any commonality) I got a lot worse before I got better. And I definitely have improved since the worst days. I have observed that some of the symptoms getting worse are a signal that things are actually improving overall, oddly.

Another comment of honesty, secretly i wish and pray this is SEH because the track record of this getting better for SEH is much higher. Infact there is no one more than me who wants your theories to be correct cos it means we will all heal and get better :slight_smile:

I agree anecdotally more people have said it gets worse before betting better.

How are you James, is the water leaking sensation slowed down ? Has your Tinnitus stopped bothering you ?

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I’m ok. Imbalance is crappy at times but you kind of get used to the chronic crap? (But not the attacks of course) You mainly notice it moving in small spaces. Tinnitus is bizarrely less fluctuating than before (leading me to believe pressure is more constant) and actually therefore less annoying if no less present.

Fluid leak has all but ended, so we are on a new phase.

Btw like @Beatles909 I get dizziest now by end of day almost every day. That and first thing in morning.

But overall can’t complain. Very lucky to be able to relax off work for a while longer.

Btw, on the subject of polls, do you think they should be anonymous or answers tagged to users? Might change how people respond but might also be useful?

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