I've had 5 years of this so far, initially happened following an operation for Endo and yes, it initially semi-healed itself for long periods with only occasional bouts of symptoms, strangely usually bought on by a trip to the dentist. However, the last 2 and half years since my car was side-swiped by a lorry at 50mph (it is well documented in the USA that this can significantly increase PLF) have been chronic and totally disabling; dizziness and hearing loss lasting 12 hours at a time, any even minor movement would set it off, and happening sometimes twice a day. Amitrip, Carbemezapine, botox injections in the side of my head to numb the nerve, nothing worked at all. This is why I bit their hand off when they offered surgery as I literally had no life at all and was bed-ridden.
Although I have all the classic PLF symptoms, for 5 years it was missed by 3 ENT's (one professor of ENT saying the problem was categorically NOT an ENT issue) and 2 Neurologists. I was offered Psychiatric counselling by one of the Neurologists though because I was clearly making it all up!
However, once I got to UCLH they were brilliant. To answer your questions yes, I do get the sensation (and sound) of fluid rushing in the ear, as well as so much pressure it feels like something is going to burst out of my ear from the inside. Yes, this is worse in the morning when I get out of bed, this is apparently due to the large change in pressure when the head goes from lying down to a raised position. (This is why when you have a PLF operation the USA says you cannot lie flat and have to sleep upright, it relieves that pressure)
Having said this, I get that feeling of running water inside my ear, followed by pressure build up at all times of the day too though, it seems to have a mind of it's own and can happen even when I'm just sat watching TV. Then there is the sensation and sound of an explosion and bang deep in my ear too that literally makes me jump. Crouching on your haunches in my experience is second only to bending forwards, so yes it can cause more fluid to leak which in turn causes the dizziness and deafness and yes, I agree with you again, it clearly causes extra pressure on the system somehow. Mind you, how one is supposed to live a life without ever reaching to touch the floor I am yet to fathom but I have perfected an odd balance of going down on my haunches whilst leaning backwards to pick something up.
I agree with you that there are more people with PLF's than are diagnosed, my experience is that local ENT's don't even know what it is, let alone know to spot the symptoms for it. As you clearly research a lot yourself, you may be interested to know that a team in the USA did an experiment using post-mortems on a random group to see how many people had a PLF even though they were showing no symptoms for it, the percentage in the group of cadavers sampled was over 30%! Surely that would suggest PLF is far more common than currently acknowledged? Likely because so many people are being diagnosed as something else (I was told I had Menieres, then MS and even TMJ), you've been told MAV and I am sure other things in the mix too.
I think people are medically managing because the surgery has such a low level of success that even the doctors are reticent to perform it. My advice would be to get yourself a referral to the ENT clinic at UCLH, they are the national centre and as soon as I walked in they said I likely had a PLF, they know what they are looking for. Do you know what set yours off? Barotrauma is the favourite Doctors are taught to look for but the USA is now saying any head trauma even seemingly mild (a blow to the ear, whiplash etc) can also cause it. Would you let me know what the inner ear surgeon says when you see him?
PLF does cause you to feel disorientated, I was subconsciously walking to the left as if I was on a ship that was heaving at sea. Tinnitus is a good sign you have a PLF when combined with other symptoms, and it happens in both ears even when the fistula is in one ear - I don't understand how that works but it does.
I don't know which window is affected, to be honest I was so dizzy and disorientated post surgery all I remember is the surgeon coming to see me, shaking my hand and telling me that given the size of the leak he didn't know how I had mentally survived it for 2 1/2 years, whilst all I could think about was trying desperately not to throw up over his shoes despite the anti-sickness meds, how to win friends and influence people
I totally get what you say about flying having seemed to have lessened the symptoms! It seems to go against everything they say about it, but if you have a small leak, or one that is semi healing itself on and off, I flew around the world without any problems at all, in fact I spent 2 blissful weeks in the Maldives pre car accident and like you, was a full on tourist doing everything like a normal person. However, one journey on the underground in London and getting in a lift post car accident and the symptoms went crazy. It is obviously to do with pressure but why flying can be OK and the underground and lifts (physically painful) are not, I don't know? But I am so pleased for you that you got some respite and enjoyed your holiday, it makes such a difference when you are free of it even for only a couple of weeks, although I am jealous you can sleep on a plane
The surgical patch burst (felt and heard it) when I sneezed week before last although it had not been stable from the beginning and I immediately went onto bed rest now I know what to do but it is steadily worsening again, so I am sure in order to try to live I will forego some hearing to not have the world spinning 24/7. The surgeon has said the leak is too large now to heal itself (very sadly) which I agree with you again is because the area is supposed to be under pressure and there must be a tipping point when the flow of fluid and pressure makes it impossible for the body to close the hole. My hearing is normal between attacks (through permanent tinnitus though) but my life is constrained to such a degree that for me, the trade off is a no brainer, although I doubt there will be another op before October/November this year.
I am no doctor but your symptoms do sound like an underlying PLF so please don't give up searching for the right doctor and the right diagnosis, I hope that person is just around the corner for you and if you find an amazing PLF surgeon please let me know!! Thinking of you and wishing you dizzy free very soon.