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My journey


#141

Hey Les,

I try to use headphones as little as possible, but sometimes it’s unavoidable. Low volume is probably ok, especially if not thumping music (ie no thumping bass), imagine speech is fine.

As a musician I love live music but I’ve elminated that AND cinema - I watch movies at home.

If you want my explanation for this:

Because certainly in my case the underlying aetiology is Secondary Hydrops (after PLF) (which has been diagnosed by other doctors as ‘MAV’ - more than once!), I try to subject myself to loud noise as little as possible because this may inhibit healing.

I personally believe all MAV is Secondary Hydrops and a lot of it is caused by an initial trauma of some kind. The only way to calm it is imho to reduce the risk of and minimise further perilymph leak - its this leak which results in and sustains hydrops (ironically) as the body tries to replace the perilymph and overcorrects (I go into why I believe this to be so elsewhere). Vertigo imho is one sign of a (high pressure) leak, but in my case I get all kinds of bubbling, slight popping and crackling sensations which suggest a lesser leak (when I first had this I would get a glugging sound, suggesting how bad it was!)

That means reducing all physical risks. I believe this means minimising peaks in head CSF pressure as much as possible (CSF pressure interacts with inner ears most when they are hydropic) - ie keep reclining to minimum (don’t sleep too long, sleep with head up on a stack of pillows, DO NOT lie down during day), stand as much as possible, don’t strain (NO heavy lifting), don’t bend head below waist. I noticed that by following these guidelines I was initially able to eliminate the additional tinnitus and dizziness I was getting when bending down (on the odd occasions I allowed myself to). Then eventually the vertigo went. This gave me the confidence that this was the right approach. It’s taken a lot of time, but this has borne fruit. Note these are the same guidelines PLF patients get post patching (which is a flawed procedure imho due to the pressures involved which would guarantee the patch will fail in most cases), but I suspected they might work without the surgery, and I was right.

btw, I personally believe tinnitus is a clear sign you have enhanced pressure in your ear. This is known as Hydrops (but that does NOT mean you have Menieres!! Menieres patients usually have Hydrops but the causation is Menieres -> Hydrops I suspect, not the other way around necessarily). If your tinnitus increases if you clench your jaw like mine, I’d say it is likely that is the cause of your tinnitus. My doctor believes my tinnitus is down to the internal pressure. I don’t see why this wouldn’t likely be the case with others, especially those with ‘MAV’ that present exactly like SEH patients.

Note, this is partially my theory and your mileage may vary. I’m clearly not qualified to diagnose. It may not hurt to try this though, it’s ultra conservative!


#142

So all hasn’t gone completely smoothly.

I had a relapse which I’ve linked to moving some heavy boxes from storage to home. I remember feeling some significant vertigo a couple of times when putting down some heavy boxes.

In my case, I believe i’ve exacerbated my Hydrops. I ended up with a mild migraine and a return of more annoying imbalance and a clear increase in bubbling sensation in my ear in morning when I rise.

A little over one week on and I"m slowly improving, but I can tell i’m still worse than I was. I reckon I’ve lost maybe 6 months recovery progress? (on the pessimistic side). Oh well, won’t do that again in a hurry! On the positive side, maybe I’ll recover quicker? Stay tuned :slight_smile: