hi all im having abit of bad few days with the mental side of this crappy illness, is there anyone out there that can explain to me that if this is migraine then why is it so constant with no relief, 24/7, people with atypical migraine get symptom relief right? and if this is migraine does that mean we are going to be forever ill?? I thought I had beat the mental side of this crap but the last few days have been torture, I just wanna be f@@king normal grrrrrr sorry for the rant peeps x
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!
james I totally believe in your opinion on this surely a 24/7 migraine is impossible, I eat what I want I drink what I want and nothing triggers this apart from stress then my brain goes into overload and carnt handle the misfires of what’s coming from my ears grrrr so infuriating!! I think your right maybe its time to get a second opinion after 5 years, I get so frustrated because I got well for a year then BAM its back again I suppose im just back to being on the waiting game!
A couple of positive remarks:
If its not a migraine condition, conservative therapy with meds is often a good approach IN ANY CASE, so don’t be too worried you are getting the wrong treatment.
SEH can also clear up completely because it often relies on something being wrong, e.g. a fistula. Once that heals, and almost all of them do, the SEH goes away on its own too. You just need something to help you cope in the meantime. Whilst fistula’s can be surgically fixed, they tend to heal by themselves. Unfortunately, only time will heal SEH, the surgery will make no difference.
So really the only thing you may get extra from another opinion is peace of mind. However, I appreciate that’s quite a lot!
I can sort of cope at the min, james if this is SEH how come I got well then a year later it came back? that’s the bit I carnt grasp 
That is a tricky question, but there has to be a reason! Something healed to an extent then broke open again? If that’s the case, surely it will very likely heal again? Certainly the migraine thing makes no sense at all from that context. Why would you get it for it to go away and come back? But I don’t want to diagnose you, just suggest you might think about additional opinions if it drags on (if it heals and you feel better its moot point)
I’m with you will we ever recover, this illness seems to drag on and on. I am trying to change drugs at present increaseing the toprimate and decreasing the propranolol my head is all over the place. I find concentrating really hard, I had a couple of stressful days at work and different lighting on my last day which gave me a nice back ground aching, I feel tired and can have a half hour nap easily in the day which is hard when I have to work 9 hour shifts. If I complain I feel people are bored of my illness but goodness how do they think we feel. I like you just want it to go away and be back to normal but have a horrible feeling that we have a long road to go down before that happens
I’ll be honest, I don’t know for sure:
BUT, I’ve made very slow progress over two years and made a significant step up about 2 months ago both vertigo and the fluid leak into my ear ceased spontaneously. My balance these days is 98% … just a little bit of ear pressure, a tiny amount of swaying sensation and tinnitus remain (which can get very annoying at times!). I’ve also had noticeable if subtle improvements to my hearing - walking under tube trains as they cross bridges no longer causes my hearing to distort, for example.
That’s after 2.5 years of this syndrome! It appears to take a crazy amount of time to recover.
As I’ve written before, a GP nurse once remarked that it takes a very long time for ears to heal. Funny after all the opinions from doctors this simple remark stood out, and gave me a lot of hope!
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So at only 1 year in I suppose I have a long way to go. I have tried the heal your own head route by reading the book, gave up my much loved coffee, easily gave up chocolate, but the propranolol seems to be the only thing that keeps the continuous back ground headaches at bay but has also helped me gain nearly half a stone in 3 months, hence the doctor trying me on topiramate which so far seems to have no effect, have just got to 100mg a day today with 20mg of propranolol but have had pressure in my head all day. Thanks for the response.
We’re all different, your mileage may differ and you may be luckier.
I injured my ear. I’m told that after my fistula heals it can take up to 12 months to lose the Hydrops (aka MAV imho). I hope I am so lucky and can move on within 12 months, I’d be ok with that (as I’m sure most would)