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johnny
 #21 
I'm sorry Mandy. I've come to expect good and bad days now. You just can't odds it - T seems to do exactly what It wants -when it wants! Thing is if I have been around some noise I think its gonna be worse and nothing happens!?! Then suddenly I wake up and its the 'all blocked up' feeling again!

Strangely enough mine is better today, hardly any pressure/pain no popping and the noise is hardly there. In fact I can only hear it if I plug my ears or I'm in total silence! About a week ago, well, I wanted to blow my head off with a shotgun coz it was so bad!!

Have a good cry if you need to, I think it helps a lot personally
Maccy
 #22 
Johnny, love your reply. Thank you.

I'll keep my chin up and keep smiling . Please make sure there's no cartridge in the shotgun !!


aQuieterBreeze
 #23 
Hi Johnny,

If the music you listen to is in mp3 format you may want to consider listening to cds, or .wav files instead.
There are many posts, here and elsewhere - about the sound quality of various formats, and there are some articles online about it too.
Some formats sacrifice quality and others retain it.
When our ears get more sensitive, I think we can also become more sensitive to the differences.

I notice that I hear alot of beautiful and subtle nuances in the music I listen to.
And after reading some articles recently and seeing what has happened to the dynamic range of music in the last many years, I am glad that most of what I listen is older music on cd. It is really hard to believe what has been done by some trying to make their music sound louder. But it may explain why I have a harder time with some music I try to listen to on my car radio- some things sound fine, others that seem like they should be ok for me at this point are not. And some articles I have read recently, make me wonder, if maybe some things I try to listen to on the car radio- may be newer mixes or recordings of older music?
Of course it could just be that my hearing is still pretty sensitive to some things too.

You say-
My 'goal' is to FEEL better physically - I've tried all the mind-over-matter stuff - and come full circle.

To feel better physically- take care of yourself-

eat right, and exercise if you can-
If the music you listen to at work or elsewhere, hurts your ears, or makes you more sensitive to other sounds, I would say turn it down.
And if it is still difficult- it may help to change what you listen to.

When I started listening to music again (after years of not being able to do so)
I found that some selections I thought would be just fine -
either did not sound good to me, or were intolerable for me to listen to.
It really surprised me when I tried to listen to some  folk/folk-rock music- and I could not tolerate it.
BUT I could  listen to some "classic rock" selections that had a bit of a  classical/symphonic sound to them
(And I found the fuller sounds were easier on my ears than the "simpler" more acoustic pieces.)
Now, after many months of working on things and adding selections to what I do listen to, I can listen to, and enjoy  many of those selections I found difficult before.

Hi Mandy,

Hope the rest of your day goes better.

When I get a loud spike that seem to come out of nowhere- many times there is some (perhaps even distant)  background noise that may be responsible for it. And I have come to realize that, and know that when that background noise is gone, my spike settles down.
And it helps for me to remember that.

And like you mention- it also helps me to remember that though I have seen some tough times with these challenges,
and even though some days are more difficult than others,
overall- my direction is a positive one.
And it sounds like yours is too.
Hope tomorrow is one of those better days for you!

Take care. 
Maccy
 #24 
Hi Breeze,

thanks for your message. Yes it's settled down again and I had a much better night. I think I'm back on track even though I got really upset again thinking I was doing so well. Not to worry though, I think I'm learning that you cannot predict anything with this.

Because I had gone a few weeks without it bothering me and without it being so loud you start think you are getting better and it will gradually subside. I felt lulled into a false sense of security.But unfortunately the nature of this illness is that it does what it wants...when it wants...as loud as it wants !!!

Best Wishes
Mandy
DrNagler
 #25 
... and as soft as it wants (like over the past few weeks).

smn
aQuieterBreeze
 #26 
Hi Mandy,

I think that "back and forth" stuff is part of the journey. Many steps foreward, sometimes a step back.

You mentioned-
I think I'm back on track even though I got really upset again thinking I was doing so well.

I know that feeling, it sent me to tears during a setback a couple months ago.
A vacuum cleaner running in a store hit my hearing fast and hard.
Among other things It caused my sound sensitivity to greatly increase again and my tinnitus to as well.
But, to remember that I had been doing well- helped alot and to remember that even though setbacks happen, I also get through them, helps.
It also helped me to remember that others have also been through setbacks- and gotten better too.
(And I get through them better than before- maybe in part because I work through them using whatever I can in the way of sound, be it nature sounds or music, even if I have to turn it down or choose different, quieter, selections that my hearing is better able to tolerate at those times.)

Does your sound sensitivity also increase when your tinnitus does? Or does that stay better all the time for you?

T spikes by themselves can be distracting and make us wonder what is going on-
For me knowing that certain things cause mine to do that, and knowing that when those certain things are no longer present- my tinnitus will settle back down, allows me to not be as focused it, and usually not be as distracted or disturbed by it either.

You also mention-
Because I had gone a few weeks without it bothering me and without it being so loud you start think you are getting better and it will gradually subside. I felt lulled into a false sense of security.

I know what you  mean there too- mine has been more noticeable lately, where as it had settled down before- and I wonder if it will get quieter again- but as I think back I know I have been through this before- wondering if it would quiet down ever again- and mine has- so I will just take things as they are for now, and keep working on improving my overall tolerances to sound, balancing the music I listen to with not increasing my tinnitus too much at the same time.

and also-
But unfortunately the nature of this illness is that it does what it wants...when it wants...as loud as it wants !!!

I prefer not to think of it as an illness - but to think of it as a condition.

And I really  like the thought from Dr.Nagler-
about tinnitus which we know can be loud at times-
and as he says-
... and as soft as it wants
Maccy
 #27 
Hi Breeze,

Thanks for your message and encouraging words. Thats why this board is so great, because people like yourself (and others) take time to reply when we need to hear something good and positive.

In reply to your question about H. When I first got this beck in March this year, the screaming noise was quite horrid and I never thought I'd get through it. With that noise I had a major sensitivity to sound. Crockery, knives and forks on plates, the TV was too loud, car doors shutting, the microwave etc etc you get the picture...but the H has actually subsided and I only wince now if something is quite high pitched and close to the ear. So that is a massive improvement. The sensitivity hasn't returned with the T spike so I suppose that is a really good thing.

Also you are right, it's not really an illness, it is a condition and thats really how I view it. I don't think I'm ill, don't know why I wrote that.

And yes Dr. Nagler is correct in saying.."as soft as it wants as well!"

Lets hope it's a quiet weekend. Oh by the way going out Saturday night for my Sisters birthday. This is the 1st time I will have gone into town where ther is lots of noise from bars and clubs and I am a bit nervous but so what. If the T spikes I shall not hear it until I return home and by then I will have had such a good time the trade off will be worth it !

Cheers
Mandy
DrChip
 #28 

could be increased fluid pressure in the INNER EAR: endlymphatic hydrops.  Patients often confuse this sensation with that of MIDDLE EAR fluid.  Ad Dr. Nagler said: the tympanogram will tell: if it shows normal/near normal middle ear pressure, suspect hydrops.  cb

johnny
 #29 
"could be increased fluid pressure in the INNER EAR: endlymphatic hydrops.  Patients often confuse this sensation with that of MIDDLE EAR fluid.  Ad Dr. Nagler said: the tympanogram will tell: if it shows normal/near normal middle ear pressure, suspect hydrops.  cb"

Hi DrChip,

Shouldn't normal/near normal = normal-ish? and not something to be concerned about? I find all these tests baffling myself
DrNagler
 #30 
Johnny, you asked for an explanation for your symptoms.  What DrChip is saying is that since your tympanograms (which reflect middle ear pressures) are relatively normal, one possible explanation for the feeling of fluid pressure in your ears is an inner ear problem called endolymphatic hydrops.

smn


DrChip
 #31 

Quote:
Originally Posted by johnny
"could be increased fluid pressure in the INNER EAR: endlymphatic hydrops.  Patients often confuse this sensation with that of MIDDLE EAR fluid.  Ad Dr. Nagler said: the tympanogram will tell: if it shows normal/near normal middle ear pressure, suspect hydrops.  cb"

Hi DrChip,

Shouldn't normal/near normal = normal-ish? and not something to be concerned about? I find all these tests baffling myself

Typanometry pretty much rules out abnormal MIDDLE EAR pressure as the source of you feeling of pressure. Typanometry DOES NOT rule out inner ear pressure (hydrops) as the culprit whch is as Dr. Naglaer says, could be a possibility.

INNER EAR pressure is much more difficult to detemine, and can be much more invasive to investigate, and even then not always fool proof.

One way to determine if inner ear is the source is indirectly by diet: VERY low salt (not easy) and a diuritic, but this has to come from your physician.

Typanometry is really a simple test that takes less than 3 seconds to accomplish per ear, even on a screeming child!   It is taking the pressure of the middle ear:  too little middle ear pressure and the ear drum is drawn in, too much and the ear drum is pushed out.

Most docs "look" at the ear drum to see if it is retracted (neg middle ear (ME) pressure), but this is very subjective and not real accurate except when the pressure is extreme.

Docs also use a pneumo (sp?) ototscop in which they look in the ear and have a bulb attached to vary pressure to see how they ear drum moves: again very subjective and an over kill: the bulb places 20 times more pressure on the ear drum than the tympanometer.  Like hitting a stone wall with a buldozer and then reporting the "the wall moved".

I now speak from experiece: did a lot of flying the past week (2 nine hour trips and 4 scuba dives) and I have a significant negative middle ear pressure in my left ear that I can't resolve -190, with normal (by some experts) being up to minus 50.

Without my  tympanometer, I could not tell if it was my middle ear or inner ear. Tested myself when I got home and clearly middle ear.

I will explain tympanometry more in detail if anyone wants. HAve to do this all the time for parents of childern that the doc suspects needs "tubes".  cb
aQuieterBreeze
 #32 
Hi Mandy,

Thank You for your kind thoughts - I too truly appreciate this board, and the kindness and caring of those who give of their time and energy to help others.

I hope things went well and you enjoyed the evening out to celebrate with your sister.
Remember that if it sounds too loud in some places- it may really be too loud.
It's a good idea to take hearing protection (to use if necessary) especially when going to  places that are known to be noisy, and also to remember your options. One option would be if a place is too loud, to find someplace quieter.
Dr. Nagler has previously described how to tell if a place is too loud, in general (even for those without hearing challenges)- and I hope he and/or Dr. Chip will refresh our memories, with their thoughts on that. I think it has something to do with being able to hold a conversation with those around us, from within a few feet - without having to raise our voices, or theirs, to be heard.

You mentioned-

.... With that noise I had a major sensitivity to sound. Crockery, knives and forks on plates, the TV was too loud, car doors shutting, the microwave etc etc you get the picture...but the H has actually subsided and I only wince now if something is quite high pitched and close to the ear. So that is a massive improvement. The sensitivity hasn't returned.

 and also-
 
 This is the 1st time I will have gone into town where ther is lots of noise from bars and clubs and I am a bit nervous but so what. If the T spikes I shall not hear it until I return home and by then I will have had such a good time the trade off will be worth it !

And since you mentioned that you  "had a major sensitivity to sound." when you first noticed your tinnitus,
I wonder if it may be a good idea to take it a little easy sound-wise - for a day or two, (and avoid the noisy stuff like vacuuming) just to be on the safe side.
Though we are different , and since you have not had setbacks before, (where your hearing gets more sensitive to sounds again) I don't know if the added caution would be necessary, but it may be better to be on the safer side, as far as that goes.
Especially since this is the first time since getting these hearing challenges you have ventured as you put it-

into town where ther is lots of noise from bars and clubs

We are all different, but-
Being prone to setbacks, myself - I have learned that being a bit more careful at times, like after exposure to loud sounds -  may be helpful, (for me anyway.)
I do not generally seek out silence anymore though,
especially since I know in my own situation that sometimes listening to softer music and/or nature sounds played on low volume - can actually help calm my hearing sometimes, Though I usually turn the volume down a bit and am more careful  about what I choose to listen to. (or leave on for background sounds) - at those times.

I truly look foreward to the days I can go more places and enjoy them! And afterward say to myself "the sensitivity hasn't returned" :-)

I hope you had a wonderful time!!!!
aQuieterBreeze
 #33 
Dr. Chip,

you mentioned-
I now speak from experiece: did a lot of flying the past week (2 nine hour trips and 4 scuba dives) and I have a significant negative middle ear pressure in my left ear that I can't resolve -190, with normal (by some experts) being up to minus 50.

Is this something that will go away by itself?
Also do you think it was caused by the flying? Or the diving?
Maccy
 #34 
Hi Breeze,

Well the night out was really good fun. I havn't laughed as much for ages. The bar we went in wasn't too noisy and then we went to and Italian resturant which was ok as well. I could hear all the conversations around the table and the music was soft in the backgound.

When I arrived home my T was at it's usually level and I fell asleep with no trouble (could have been the alcohol consumption though!!!). This morning I awoke with the same level of noise and I thought "this is great, no adverse effects". Now this afternoon I've had more noise, not really in my ears, but it's seemed to be more in me head and it wasn't any particular sound.....just noise....muffled really. Sorry not explaining that very well. But anyway, a bit of distraction from the TV and it's settled again.

So all in all...quite a good outcome for me. I always enjoyed a  good night out with my sister and friends but I have been avoiding it since T. So now I feel a bit more optimistic.

We were out in couples and my sisters husband was with us and he's had T quite bad for 15 years. Then there's myself in the group who's had it 6 months, and beleive or not, another friend within our group also has started with it 3 weeks ago. (She is 2 days older than me and also called Mandy!!)
Her Mum has just passed away so we think that could be the trigger. But that shows really how common this condition is yes? 3 people, out together in a small gathering all with the same complaint.

Mandy
DrChip
 #35 
Quote:
Originally Posted by aQuieterBreeze
Dr. Chip,

you mentioned-
I now speak from experiece: did a lot of flying the past week (2 nine hour trips and 4 scuba dives) and I have a significant negative middle ear pressure in my left ear that I can't resolve -190, with normal (by some experts) being up to minus 50.

Is this something that will go away by itself?

It depended on if it was MIDDLE EAR (which was my case) or inner ear, and what kind of treatment I had, from mild to aggressive.


Also do you think it was caused by the flying? Or the diving?

I think the cause was from both diving AND flying, more due to flying.  Been diving 38 years, and my left ear gives me a little trouble clearing at forst, but ten comes around after the first dive.

Since I determined it was middle ear pressure, I could take corrective action: performing the "Valsalvia" on myself and rechecking my ear with tympanometry.  The pressure DECREASED meaning that my eustachian tubes WERE working, just needed a little help. I knew that I had early fluid as well because as I moved my head, I could hear better in certain posiitions My ears, partic my left, has resolved quite well. I was outside all day and that helps (not sure why but it has in the past.

It should be noted that I could not use a decongestant since I have controlled high blood pressure, and decongestants will increase BP (as confirmed by one of my favorite ENT docs in my dept  at Emory. I could have tried nasal steroids, but this takes time:  up to 10 to 14 days.  And I did not want to take the surgical route yet: tubes in the ears.

But remember tympanometry clearly revealed it was significant neg middle ear pressure, and showed that I could "clear" my ears.  This would not have been so for INNER EAR PRESSURE.

An old axiom that I was taught years ago, and so simple but so true:  "diagnosis indicates therapy"  cb



johnny
 #36 
Can anyone really blame me for getting so frustrated and kicking off!?! I know I shouldn't on here because its not fair on you lot...BUT, ive been to see a whole bunch of 'professionals' on about 16 occasions in the last 6 months asking for help. I've listed all my symptoms IN DETAIL and not one mention of 'Threshold shift', 'Inner-ear pressure' what a tympanometry test is looking for. How many people do I have to see before I can get some explanation or advice?????
It would'nt be half as bad if someone could just talk to me (like on here) about this stuff, or put my mind at ease, instead of me trawling over the internet, coming on message boards just to find out what 'could' be wrong, and then worrying myself stupid over it. I'm trying really hard to cope with my condition but I've really lost faith in the medical profession.

Thank you again DrNagler, DrChip, Mandy, Pt and QuiteBreeze and anyone else for all your tips, pointers and support. Without it I would be in a real mess!!!


DrNagler
 #37 
Johnny posted:

Can anyone really blame me for getting so frustrated and kicking off!?!

.............

No.

...............

I know I shouldn't on here because its not fair on you lot...

..............

It is only unfair if you don't do something about it.  And I think that you are about to do just that - take a very positive step.

...................

BUT, ive been to see a whole bunch of 'professionals' on about 16 occasions in the last 6 months asking for help. I've listed all my symptoms IN DETAIL and not one mention of 'Threshold shift', 'Inner-ear pressure' what a tympanometry test is looking for.

...............

That doesn't mean they haven't been thinking it as they evaluate you!

................

How many people do I have to see before I can get some explanation or advice?????

..............

Sixteen visits in six months seems like it ought to get the job done - so maybe you are looking for an explanation or advice that just isn't out there right now.

..............

It would'nt be half as bad if someone could just talk to me (like on here) about this stuff, or put my mind at ease, instead of me trawling over the internet, coming on message boards just to find out what 'could' be wrong, and then worrying myself stupid over it.

.............

OK.  Here's a question for you.  What are some of the things you can do that will help a lot besides what you describe above?

.............

I'm trying really hard to cope with my condition but I've really lost faith in the medical profession.

.............

You've lost faith in the medical profession because the doctors can't seem to answer a question to which there might not be an answer?  You sure are expecting a lot from those folks.

smn 

aQuieterBreeze
 #38 
Hi Johnny,

I found the following web site to be filled with some very interesting and helpful information-
And in addition to a wonderful website, I think it is very kind of them to offer some book excerpts and also some interesting articles that can be downloaded as well.
(Look on the left hand side of their page, for a link that says "download page")

http://www.tinnitus.org/home/frame/THC1.htm
The Tinnitus and Hyperacusis Centre: home of TRT

I think what we read, watch and listen to - can affect us in many ways. And when it comes to these hearing challenges, I try to keep that in mind. Especially as I read these forums.
johnny
 #39 
Thanks for the link. I have bookmarked that site already actually but thanks anyway.

"OK.  Here's a question for you.  What are some of the things you can do that will help a lot besides what you describe above?"

Get my stress under control i guess? And stop thinking the worst.
DrNagler
 #40 
Johnny, how do you plan to stop thinking the worst?  I'm being very serious here, because just telling yourself to stop thinking the worst isn't likely to have much effect.

smn
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