Well you know my thoughts on this subject, Mel. And please feel free to rant anytime!
I believe the whole medical profession has got carried away with the word ‘Migraine’.
We know neurological issues and Migraine ARE a factor, but it seems people have observed the Migraine element and assumed its the cause!
BUT what I don’t get is two things:
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You don’t walk around normal for years and years of your life and then suddenly get a migraine disorder FROM NOWHERE!
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It’s 24/7 - since when were migraines 24/7?!? This is ridiculous. I know when I’m having a migraine and even during this experience, I’ve not had a migraine 24/7, i’ve just felt imbalance, lightheaded or dizzy. They definitely weren’t migraines!
So what is going on?
Because migraine is so ‘nebulous’ it far too easy to give it credit for all these symptoms.
But if you look into the scientific literature there is no proof migraine is the cause of MAV, its just a hypothesis. And remember MAV is defined by a collection of symptoms, the official definition DOES NOT state that migraine is a cause, its simply a classification for the disorder. Some people believe that MAV causes ear problems because migraine also involves a vascular event. But here again, the idea that migraine causes small strokes is YET ANOTHER hypothesis, unproven and again it depends on who you speak to about this for what answer you get. So MAV is based on a hypothesis that it is a migraine condition and based on a hypothesis that migraines cause vascular events … starting to get really dubious if you ask me!
There’s a lot of medical dogma a bit like religion - you put all these things down to something ‘nebulous’ that no-one truly understands but are asked to believe it is the truth.
And based on experience I’ve noticed a big split between neurologists and ENT doctors - the former seem more likely to blame it on a brain issue, whereas the latter, who’ve focused on the more physical aspects of the ear are far more likely to consider other possibilities.
I wonder if my diagnosis history is of help here?
You know that I had 5 weeks of just imbalance and nausea initially, together with a feeling of fluid in my ear every morning which drained away each time. This all started 20 minutes after I stupidly pointed a shower into my ear.
Then 5 months later I got the whole shebang! Lightheadedness, tinnitus, worse dizziness, ear pressure, rocking sensation, spinning attacks the lot.
I went to a neurologist/balance centre - they did all the tests and told me I had MAV. I wasn’t convinced.
I sought a second, third and fourth opinion.
They were 2. Hydrops or ‘Migraine Variant’, 3. ‘Probably something central’.
One telling anecdote was that the first alternate opinion said to me ‘Oh Amitriptyline is taken by both Hydrops and Migraine patients’. The first sign to me that we were dealing with the same thing here, just under two different names.
But then the 4th opinion really changed things - within 2 minutes of telling my 3rd ENT surgeon my history and the relationship to the initial trauma he said ‘You’ve had a perilymph fistula, then as this has healed you’ve developed Secondary Hydrops’.
If you look up Secondary Hydrops, you see that all the symptoms are the same as MAV. But you get a much better explanation for the symptoms: a build up of endolymphatic fluid has increased pressure in the ear leading to tinnitus (caused by pressure on the nerves), dizziness, ear pain AND IT CAN CAUSE MIGRAINES.
Then the surgeon told me that many people find that they have certain triggers which make the Hydrops worse - what?! Just like MAV?! Indeed you can make it worse by consuming the 6 C’s apparently (which raises the pressure temporarily before it calms down again, but again everyones triggers are different).
I was FAR more comfortable with this diagnosis because IT ACTUALLY MADE SENSE and contained ZERO nebulous BS elements.
So in conclusion I believe MAV and Secondary Hydrops (SEH) are the same thing.
Now, onto how you get rid of SEH - according to literature so long as you treat or recover from the underlying cause, SEH goes away after a few months to a year - or at least improves significantly.
In my case the cause of SEH/MAV is a fistula that I gave myself by injuring my ear with the shower.
The first person I saw after doing this to myself was a neighbour and senior A&E doctor - he’s not a specialist but knew of fistula’s but in his opinion they were ‘extremely rare’.
So this is where I have a problem with ENT medicine - its driven by dogma. So apparently fistula’s are rare and everyone accepts that - except there is no definitive test yet, so in my view they have no grounds to say that! They are very hard to diagnose and its based on your history and set of symptoms. If you are unlucky enough to have a fistula but have had no obvious trauma, good luck it persuading anyone to believe you have a fistula! My personal opinion after reading so much about these is they are FAR MORE COMMON THAN BELIEVED, and in my view may explain the prevalence of MAV (aka SEH!!!) as fistula’s are usually followed by SEH once they begin to heal. BPPV is another example of this - a symptom set that is given unconvincing explanation that we are told to believe. The cause of BPPV is yet another ear issue that is riddled with dogma.
MAV is flavour of the month (decade?) these days, but there was a different fashion in the 80’s: fistula’s - yes they USED to be considered more common and a lot of people had surgery for them. Unfortunately many people didn’t immediately get better after the surgery and one interpretation is that it wasn’t a fistula - but SURELY the other interpretation is that healing/patching the fistula is only part of the challenge - you then have to get over the SEH which can take months or a couple of years!
Now, one more anecdote - recently I’ve been feeling MUCH better and this has occurred at the same time as that fluid sensation I get in the morning decreasing to almost zero … this my friends is because my fistula has finally healed AFTER TWO YEARS!! My surgeon is also in agreement with this analysis. The length of time a fistula takes to heal spontaneously without surgery MAY explain why people have MAV for so long but end up feeling better.
I asked him if people with MAV maybe actually have SEH from a fistula and he said ‘there is no doubt that many people misdiagnosed with MAV actually have SEH because the symptoms are the same’. Being professional he did not go further and say MAV = SEH because that is contentious in his circles … but you see what’s going on here? Medical dogma and politics and lack of definitive tests!
To me having a PHYSICAL explanation for the onset of MAV/SEH is FAR MORE convincing than suddenly getting MAV for no reason. It turns out the ear is PHYSICALLY very much more fragile than many people realise - and this is ONE REASON WHY DOCTORS DONT SYRINGE THE EAR ANYMORE!!! Because syringing the ear can give you a fistula! (I didn’t know this until after my stupidity)
The other challenge here, is the MAV/SEH can be separated from the initial trauma by months or years, so people never make a connection! My MAV came on 6 months after I’d pointed that shower in my ear … what doctor is going to believe in the connection - well not all of them for sure. But it turns out you can carry an ear injury around with you for some time that doesn’t cause you any trouble until it does …
I was out with an old boss the other day who lost his hearing in one ear when taking off in a plane. Profound loss of hearing just in one plane ride - this seemed unbelievable. I quizzed him about this and had he had any trauma prior to this. He told me he was hit on the side of the head and knocked unconscious a couple of months before during a basketball game. Well well well …
So Mel, I’m not going to say you have a fistula, but I totally agree with you that MAV may not be migraine-lead and there is a lot more to this!
If you are in any way concerned that something else is going on, get a 2nd or 3rd opinion!