Btw, Dave, you should read this guys page
Itās a great site because it is very optimistic. I have not had a consultation with him so cannot vouch, but his material is worth reading from an educational stand point.
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Yes Iāve seen this. Pretty good site. Not sure I would use him but heās probably a decent option especially if your insurance doesnāt cover well or you canāt find a good local doc that understands these issues. I doubt any of my docs would talk to him and pretty sure his prescriptions would not be honored here in the US. But you might get some ideas to discuss with your local doc.
I like your PLF explanation. It makes more sense and ties to my specific symptoms during an attack which the Neurologist didnāt really care about or offer an explanation for.
To me some sort of tear (letās use a fancy word so we sound like we know more than you - fistula!) that lakes out fluids from where they are supposed to be in a very complex and precise sensor organ - makes a lot of sense.
And the tear may close and heal on its own putting you back to normal as I used to be when the attacks first started. But if the area of the tear becomes weaker over time you may get progressively worse attacks (as Meniers usually progresses).
And maybe you get to a point where it doesnāt heal and you have a constantly varying level of fluid causing some level of balance issues 100% of the time but still varying significantly so you have trouble compensating or retraining. Thatās me.
And yes you had a different cause of initial attack but maybe ended up in a similar position as a menieres person but possibly with a much better chance to recover as the reason for the initial tear is one time. Hopefully yours will heal longterm and youāll stop having relapses.
For my major attacks my ENT gave me high dose steroids which seemed to help a lot. For the last (4 day) attack she tried to taper the steroids over 4 weeks but I got much worse so she upped them again and tapered over 2 months which got me back to walking without a cane. I think this points to a healing process which steroids are known to help. My Neurologist told me there was no use for steroids after attack and had no comments on rescue meds.
Well, its very hard to track progress, because severity of some symptoms can get worse.
The more your leak heals, the higher pressure your ear will be for a while (this happens to PLF patients after surgery). One guy on here got bad tinnitus for the first time after surgery, suggesting to me theyād successfully patched his, but pressure went up.
I went through a phase where vertigo got worse (the pressure it took to open the wound got progressively higher) until eventually the vertigo stopped (pressure then dropped as leakage generally declined).
There are lots of influences.
Basically my concept is if you leak, you bring in more CSF into the inner ear and the ear pumps out more fluid internally to compensate for the āwrong mixā. You get better if generally each time it leaks it leaks less and the ear pumps out less fluid generally.
There is a bucket load of neurological crp on top of all of this, which also fluctuates.
Iām sure mine is NOT degenerative, I hope yours isnāt too, but you canāt judge over a short time span.
If this IS your issue, then the good news according to Hain is that 90% of people heal, spontaneously
It is very possible there is an idiopathic version of this and some people who have not had any trauma may have this.
However, I reckon its a lot easier to traumatise the inner ear than people realise ā¦