Just introducing myself

As an intro I guess I should start by saying I have been lurking on these forum for quite a while now but kept getting "info-overload" after spending some time so never got to posting.... probably silly of me... I live in New Zealand & I'm in my late 50's (but often feel it's more like my late 90's) & I have been a MM victim for approx eighteen years plus now.

OK here goes, let's see how I go clearing out some brain cobwebs as I try to remember some timeframes, they won't be all that accurate that's for sure ....

The first thing for me was noises in my right ear way back early to mid 90's, which at the time I just put down to spending too much time on the phone... I now have no recollection as to what sort of noise that was but I do remember it annoyed me quite a bit at the time & made getting to sleep rather difficult.... it's strange how you adjust to things like this after years & years of living with it, these days I don't really even notice the ear noise (apart from when I first wake in the morning, I partly use it to judge how I am going to feel when I first get up) unless it's in one of it's REALLY LOUD modes or a highly fluctuating mode or those really annoying loud, mostly "one off", noises (that normally don't last for that long, relatively I guess, meaning for me no more than an hour or two)

I had my first full on vertigo session in 1997 while I was about 1-1/2 hours drive away from my then partner (now wife) on my own doing some work that needed to be done. I woke in the middle of the night with the room spinning & discovered I couldn't even walk, therefore I crawled to the toilet & back (collecting a bucket on the way).... I'm sure you all know what I'm talking about.... I really can't remember how long this one went on for, seemed like forever at the time... I do remember my partner arrived as soon as she could after finding out about it the next morning & I was unable to work for a week after it, also the effects (like moving my head too fast etc.) carried on for at least a month after that.

Over the next number of years I had a number of further vertigo sessions (many month apart) but nothing as bad as that first one, the ear noise got worse, some hearing loss in my right ear occurred but I have always been slightly deaf right from childhood so I didn't think much of it & for sure didn't put them all together.

(damn I can't now remember exactly when but I know it was after we were married therefore after 2000) again while I was on my own (the wife was away visiting her mother for the weekend) I had my second big vertigo session, this one lasted for six/seven/eight hours & apart from crawling to bed, emptying the contents of my stomach & trying to empty non existent stomach contents many times over I was stuck laying on my back (normally the best position for me for these things) not able to move pretty much at all...it was fortunate that by the time my wife rang at around 11p.m. I could move a little so I was able to reach the bedroom phone, wife & mother in law arrived around two(sh) hours later & (of course...Murphy's law) by then I was starting to come right & was able to move again... Next day it was off to see the emergency weekend doctor (who was really good & became my regular GP until he left the district a few years back) where I was first tentatively diagnosed with Menier's, he gave me a referral to the ENT who confirmed...MRI scan..tried a number of things, steroids & other pills which I can't remember the name of now, none of which did me much long term good... back then there wasn't much info on the net (apart from the wonder cures...you know the ones..., pay us many $$$$$ & we will supply the wonder cure for Menier's) & a little bit of information about MM itself.

From there things went slowly downhill for me, the vertigo sessions became more often but shorter duration (thank the stars). It also got to the stage that I ended up in-voluntarily on my back quite a number of times with no real warning (apart from "I wasn't feeling all that good"...which was actually mostly the norm by then) which can be rather painful depending on what is behind you.... After three fairly decent vertigo sessions that occurred while I was driving (and that is no fun at all I can assure you) & the fact that my computer repair/sales business was by then slowly falling apart mainly because no one (including me) could know if I was going to be open or not at any particular time (I probably did keep on working for longer than I should have) we decided it was time for me to give up work for a while & see what happened.....

A while after stopping work & getting steadily worse I went through a pretty rough time with depression to the stage of wondering if life was worth all the effort (I now think mainly because for the first time in my life I felt like I was totally useless where as prior I had always been a do-er). But that is all quite a few years in the past & I have for a long while now come to an understanding with myself on how to live with what I have been dealt... that was about seven or eight years ago & while the vertigo sessions have mostly gone away (last "full on in bed nausea" one was Christmas night 2012) I do still have tiny ones that are more an annoyance than anything else, but I do have an ongoing feeling of "feeling really unwell" all the time, this varies from feeling "bloody terrible" up to feeling "not so good"....

These days I refuse to say I feel "pretty good" because one day about three years ago I woke actually feeling "pretty good" (I had forgotten what that felt like ...that's how good I felt) & discovered that even my hearing had returned (I suspect fully in both ears) & I had to turn the volume down on everything (& feel sorry for what I put the wife through volume wise), this totally fantastic feeling lasted for almost a full day... but now I'm not sure if it was a blessing or a curse because now I remember what it used to be like prior to our old friend/enemy (MM) getting involved in my life.

I think that pretty much covers it apart from some of my symptoms that I have never ever seen mentioned in anything on MM that have seen, read or heard which has really confused me for many moons now, that is up until just the other day when thanks to this thread http://menieres.org/talk/index.php?topic=32.0 posted by Vicki now make total sense to me...... and while I am not into self diagnosis, lots of these MAV symptoms just fit too well & I will for sure be mentioning it to my GP next visit

I am fairly sure I have MM as I have the one very deaf (to varying degrees noisy sod) right side ear, the left ear has lost hearing as well but nowhere near as much, balance problems making it very difficult to walk, even just stand in one place at times etc. but also, after having a stroke like episode & being referred to a specialist, have been diagnosed as a sufferer of migraine with aura mostly without headache & I also get quite a few of the symptoms described in that MAV thread such as the "brain fog" (most of the time), trouble absorbing information (not so often but it does happen sometimes), short term memory loss (quite often) & others from that thread.... I also suspect (the totally bloody frustrating) when I go into "not thinking rationally mode" (even though it all seems totally rational to me at the time), boy is that one frightening, is also migraine related.

Errr ummmm well this message hasn't ended up being anything like I intended when I first started writing it, it's more a memory refresh al to myself than what I planned therefore I may as well add a few other things I didn't mention in that tome above that I discovered over that time...


Acupuncture being one that did seem to help me in the early stages after the acupuncturist had tried different point over a period of time & found the right ones for me.

Mind set does have an affect, for me it is even possible to use "mind over matter" over an extended period of time (months) as I have "had to" while I handraising quite a few clutches of baby parrots over the last seven or eight years, but that does have it's downside after the pressure comes off.

I always had a feeling there was a link with my symptoms & migraine (which I suffered the classic version of as a teen) that I had even mentioned/discussed with my ENT years ago... therefore very interesting reading the MAV thread

After my "pretty good" day I got the impression that neurological came into the picture more than I had ever seen mentioned... therefore rather interesting to see someone on here had the same thoughts on it as I did

For me, for sure, my symptoms have changed over the years... for the better/worse is hard to say though, different, yes.

The frustration of trying to get other to understand, no one that hasn't had our symptoms can fully understand what we go through it's as simple as that, this includes the GP(s) & ENT(s)... I will add though I "thought" I had an understanding of what it was like being deaf seeing as I'm normally around 90% right ear 45% left ear (the amount in the left varies quite a bit depending on the day) deaf but after going through a fortnight of being almost totally deaf recently I realise now I had no real understanding of what it was like or the frustration it causes at all, or the amount of time my wife spends talking to the wall/door/whatever instead of looking at me while she is talking.

Finally with this new information I have discovered on here (including AV & AF) I'm not sure how far I want to reopen this can of worms for myself again at this stage, after having come to terms with what I have... I had my second visit with my new GP (re almost total deafness plus a financial matter I will post another thread asking for your mental assistance on shortly) & I for sure didn't "click" with him, also as we live slightly rural, ten minutes out of a smallish town, & at least a couple of hours drive away from a decent sized city for ENT visits etc. & the fact that all travel is not something I like to do unless totally necessary..... I will have to think about that one for a while...

 

Thanks for the welcome guys.

I "thought" I was at a fairly stable stage by having come to terms with what I have & for sure I was reluctant to muck around with that too much in fear, I guess, of getting my hopes up, yet again, only for things not to work out, yet again.... but after writing that tome above, & therefore bringing back old memories, I now feel it's time for me to again take the plunge & have another go & hitting this (actually more & more seems to me that should now be these) things in the guts again & see what happens.

But first off I feel I for sure need to tackle this in a "one at a time" way & as the wheels have already been put in motion for one of them (the government financial help one that I will be posting about right after this reply) I need to deal with that one first prior to looking one hell of a lot closer at MAV which, now that I have thought over the symptoms for a week, seems to be the vast majority of what has been happening to me for the last couple of years.

But, having said that I would be rather happy if something could just swap my number of "better days" with the number of "not so good days" ..... that would be almost bliss <grin>