Author Topic: Why not more posts about hearing loss?  (Read 5717 times)

Offline Anita

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Why not more posts about hearing loss?
« on: Oct 29 2012, 07:53 PM »
I'm new to menieres and this site and I often wonder why more people don't post about hearing loss? For me it's the most worrying thing about menieres and the most annoying, and I worry I will lose hearing in both ears. But for most sufferers the main problem seems to be vertigo. I am lucky so far, my medication seems to help that. Does everyone else just accept poor hearing? It worries me to death! If anyone wants to tell me about their hearing loss I would be grateful! How does everyone cope?

suzygirl

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Re: Why not more posts about hearing loss?
« Reply #1 on: Oct 29 2012, 08:40 PM »
I understand your concerns.  I have had fluctuating hearing loss for 8 years.  In the last couple of months I have suffered permanent hearing loss in one ear and muffled hearing in the other.

I was offered hearing aids at my ENT appt.  I am in denial at the moment I suppose.  I lip read conversations but if they say something unexpected I am stuck.  I can't hear my phone yet certain noises hurt my ears.
 
I will be interested to hear other replies.  It is a serious problem,  one day at a time for me.

Offline Anita

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Re: Why not more posts about hearing loss?
« Reply #2 on: Oct 29 2012, 09:24 PM »
Thank you Suzie for responding. Lip reading sounds frightening.

suzygirl

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Re: Why not more posts about hearing loss?
« Reply #3 on: Oct 29 2012, 09:32 PM »
Anita, my hubby and best friend are both deaf in one ear, so I amused to the frustrations it brings.   I still get irritated but sometimes it is quite comical.

One day at a time is the only way I can cope.

Offline Vicki

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Re: Why not more posts about hearing loss?
« Reply #4 on: Oct 30 2012, 02:30 AM »
I'm lucky I've just got one ear affected, I've had severe loss at high frequencies for years before the whole md stuff, have started losing some low frequencies now though :(  but my last test showed mid frequencies are up a bit from my previous test  :) this change pretty much confirmed my secondary hydrops diagnosis. Ironically it's now I've been offered a hearing aid, but mainly to help with the tinnitus, really hoping it does help it's driving me mad. I never thought my hearing was bad enough for an aid and seem to cope ok with one fully working ear, though I have no idea which direction sounds are coming from and noisy environments can be dodgy. I've done and am continuing lip reading classes as a 'back up' to what I think I've heard, I hope I never have to rely on it. I find the hearing loss easier to cope with than the vertigo and nausea, thankfully Serc seems to be keeping that under pretty good control at the moment  :D and hoping I'll get hearing aid soon to help the tinnitus.
Hope your hearing doesn't get any worse, it can go up and down.

Offline Anita

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Re: Why not more posts about hearing loss?
« Reply #5 on: Oct 30 2012, 10:03 AM »
Thanks everyone for taking the time to reply.

Offline harry

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Re: Why not more posts about hearing loss?
« Reply #6 on: Oct 30 2012, 05:31 PM »
Hi Anita,

The thought of hearing loss can be very frightening,but it is very unlikely you will lose all of your hearing.

I have been hard of hearing both ears since childhood and coped very well. I then got MD on top of that and although i have no useable sound in one ear and a 70 - 90 db loss in left ear i still cope ok.

Even if your hearing gets that low (unlikely) you and your family will adapt.

I would rather have poor hearing than the bad vertigo anyday!!

Harry

Offline Emma

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Re: Why not more posts about hearing loss?
« Reply #7 on: Oct 31 2012, 01:32 PM »
Hi, I know the prospect of hearing loss is scary but to me the vertigo is the bit I hate - I have a hearing aid which I love but dont think the loss I have is that great as of yet and I live in the hope it won't get much worse xx
Be happy - Keep smiling :-D

Offline bluespurs

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Re: Why not more posts about hearing loss?
« Reply #8 on: Nov 06 2012, 03:40 PM »
As frightening as it sounds, you kind of get used to your ears going up and down and not being able to hear properly.

I also did a ten week course in lip reading just in case.

Try to be pro-active, then if it totally goes tits up you have somethings to fall back on.
No matter how hard we try
the man can never hear us cry
we could scream and yell
but he is in his heaven while we're in our hell!!!

suzygirl

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Re: Why not more posts about hearing loss?
« Reply #9 on: Nov 06 2012, 06:05 PM »
Where did you find the info for the lip reading course from?  I was thinking of doing a sign language course,but lip reading would be a better starter.  I haven't seen any info though.

Offline Vicki

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Re: Why not more posts about hearing loss?
« Reply #10 on: Nov 06 2012, 06:18 PM »
your local council/adult education service should have information on lip reading and bsl courses  :) Though I think lip reading classes are harder to come by as there are only a few qualified teachers in the country, according to my tutor. Try Action For Hearing Loss they might be able to give you information about courses in your local area  :)

Offline bluespurs

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Re: Why not more posts about hearing loss?
« Reply #11 on: Nov 06 2012, 07:46 PM »
I did it in oxford through the adult learning centre.

Also your ent clinic will usually have the nearest classes and info on a notice board in the waiting area.
No matter how hard we try
the man can never hear us cry
we could scream and yell
but he is in his heaven while we're in our hell!!!

Offline harry

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Re: Why not more posts about hearing loss?
« Reply #12 on: Nov 07 2012, 02:50 PM »
hi Bluespurs

did you find lip reading course helpful?

My hearing has been bad since childhood but only had to wear hearing aid all the time for last 3 years. Have been told that my lip reading is quite good but have never done a course. Do you think it is worth doing?

Harry

Offline bluespurs

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Re: Why not more posts about hearing loss?
« Reply #13 on: Nov 07 2012, 04:56 PM »
I did find it helpful harry.

But the course i was on was very entry level. Sounds like you might need to go on a more advanced course.

Put it this way I now find myself looking at peoples lips all the time and it becomes habit. Am I now great at lip reading? Not really but I bet im better than most.

Indeed it is worth it, it also gave me some security when I needed it.

Be well harry
No matter how hard we try
the man can never hear us cry
we could scream and yell
but he is in his heaven while we're in our hell!!!

Offline Mumofthree

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Re: Why not more posts about hearing loss?
« Reply #14 on: Dec 18 2012, 09:34 PM »
Hi I understand how you feel for me the hearing loss is the worst thing! When Zi get dizzy it seems to clear my ear and my hearing comes back for a while also Serc seems to help with the vertigo but the deafness frightens me as I only have one ear, I'm deaf in my left ear so really scared of losing my right ear too.  I have a hearing aid but can't get used to it at all and only wear it if I'm desperate.  I also find some noises too loud!! You may have Lermoyez Syndrome a form of MD that's what the doctor thinks I have. I'm very worried about it all feel like my life is on hold.

Offline Benny01

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Re: Why not more posts about hearing loss?
« Reply #15 on: Dec 21 2012, 11:00 PM »
I think generally for anyone that is suffering hearing loss, it's a problem. I started losing hearing a number of years before MD. When my hearing started declining and continued to do so, it did scare and agitate me and still does to some degree, but there are ways of improving your hearing situation. The vertigo is different in that you can't control it, when it hits, you're stuck with it until it decides to stop, you also have no idea how frequent, how long or how badly it's going to affect you. Also, the hearing loss doesn't put your life on hold, the vertigo does. This is not necessarily to say that one is worse than the other, but it is the reason that it's looked at so differently, well, that's certainly true for me.

While I hate losing my hearing, my life would be entirely different if I didn't have the vertigo and balance problems. I have learnt to deal with it over the years and recently got hearing aids which help a huge amount. Initially I just had to make sure to stand better ear forward, ask people to speak up etc... Sometimes though, you get people you don't want to hear and it's a blessing then :D

As for "can't get used to it....", I was the same way, it drove me a bit crazy, hearing things I wasn't used to, noticing sound coming from my left and behind me, suddenly became like a sensory overload, on a number of occasions I threw them down in frustration, but persevered and I now wear them most of the time.

Benny :)   


Offline christine

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Re: Why not more posts about hearing loss?
« Reply #16 on: Jan 01 2013, 08:40 PM »
Hi

Just to say that my father recently had a cochlear implant.  He has had MD for about 30 years, I was diagnosed in 2001.  His hearing went quite rapidly and ended up with hearing aids in both ears.  The tinnitus which drives me mad never bothered him.  Anyway, he looked into the operation and had to pay for half and his local council paid for the other half.  He had to wait about 10 months and then went in for just a day.  First two nights he felt really good and then a different sounding tinnitus appeared which he's not fond of.  On 10th Jan the implant gets switched on, so I'll keep you posted.

Christine

Offline Anita

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Re: Why not more posts about hearing loss?
« Reply #17 on: Feb 17 2013, 09:34 PM »
Christine, how is your father getting on?

Offline Angel_UK1

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Re: Why not more posts about hearing loss?
« Reply #18 on: Feb 24 2013, 09:28 AM »
Hi I have quite bad hearing loss in one ear, the other one does not seem to be affected at this point. Its something I have adjusted to over the years, I have considered buying a hearing aid but maybe its vanity that stops me and I think I am not that bad yet.

Worst part of noise for me is like when the children all come home from school and are all in different places i.e. in front of me, to the side, behind me, and its like sensory overload it causes an instant minor spin and I have not yet found a way of stopping it doing it, does anyone else have this happen??

Offline christine

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Re: Why not more posts about hearing loss?
« Reply #19 on: Apr 02 2013, 11:14 PM »
Hi

Sorry I haven't replied about how my father is getting on, my own MD has been the worst ever ever in the 12 years I have had it.  The whole visual vertigo thing has stopped me in my tracks.  However, a completely wondrous thing happened last week, I actually talked to my dad over the phone!! that hasn't happened for about 15 years! He did say I sounded like I was in an underwater cave, but he could hear me and we had a conversation! Amazing! Apparently how he feels now is how he is going to feel as in it probably won't get any better, but we don't have to say everything twice and its absolutely brilliant.  I'm very proud of him.

Christine

Offline Dizzy Hoon

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Re: Why not more posts about hearing loss?
« Reply #20 on: Jun 24 2013, 12:04 AM »
Hello All

I know this is a late reply but I was reading all comments with interest. I completely understand the fear of losing your hearing. I did a Deaf studies degree, can use sign language and understand the complexities of lipreading.  I suppose hearing loss isn't my biggest fear because I have of this. My fear is not being able to drive as I live in a rural area and work in socual care so need to drive for work. Friends have said to me they would not want to oose their hearing because they would miss music, I dont know about anyone else but when I'm not good I can't tolerate any sound!!
I would strongly recommend anyobe who has been assessed as needing a hearing aid to persevere with it. .. they are not perfect but thry can really help make you feel less isolated.
Lipreading is a usual skill, again its not an accurate science and even for the most skilked lip reader about 75/80% is guess work....context is key along with avoidance of bushy moustaches!!
Sign Language - well I personally think its a beautiful and complete language that can be useful in lots of settings. However you need other people who can also sign and unless all your family, friends and colleagues learn to sign too I would say there would little benefit for you. 

People who are deafened often feel they do not belong to either world (hearing or deaf). However  1 in 7 of the population have a hearing loss, the majority of those are hard of hearing or deafened rather than deaf  sign language users. Search your local area for lip reading classes and groups.  Also ask your social services department about how to get an environmental aids assessment (this is for equipment that can help around the home ie hearing the door bell, tv etc).
Hope that has helped, I commented to offer a different perspective on hearing loss not to belittle or ignore your fears.

P.S. Christine, re cochlear implant, in layman's terms, , they provide an electrical signal to the brain so instead of a hearing aid which magnifies sound a CI will produce a different sound to what your brain would previously recognised which can take some getting used to.  I'm glad it's working out well for your dad.

Offline Kazzyspins

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Re: Why not more posts about hearing loss?
« Reply #21 on: Sep 26 2013, 03:40 PM »
Hi I have quite bad hearing loss in one ear, the other one does not seem to be affected at this point. Its something I have adjusted to over the years, I have considered buying a hearing aid but maybe its vanity that stops me and I think I am not that bad yet.

Worst part of noise for me is like when the children all come home from school and are all in different places i.e. in front of me, to the side, behind me, and its like sensory overload it causes an instant minor spin and I have ni ot yet found a way of stopping it doing it, does anyone else have this happen??
Hi Angel I am totally deaf in my right ear and a hearing aid would of no use due to nerve damage.
However 18 months ago I saw a highly regarded consultant.  Straight away he looked at my notes. In it he noticed that back in 2004 my tinnitus lady suggested a hearing aid. (My left ear is starting to go)  He chose to ignore.  I cannot begin to tell how it's changed my life. Don't worry about vanity. I often wear my hair up and people still have no idea!  It also helps when I get bad tinnitus.  Please don't worry about what other people think, this is your precious hearing at stake.
Just sharing my story. Do keep me posted. Best wishes nb. Don't go privately...the small digital ones are not so great and prone to falling out. Mine is worth around 800 but it cost me nothing

Offline Elaine

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Re: Why not more posts about hearing loss?
« Reply #22 on: Sep 27 2013, 02:46 PM »
I agree - at the end of the day it's not about vanity - it's about hearing better ! I also wear my hair up or down depending on how I want to and don't think about whether peeps can see my aids or not .
The whole hearing thing did worry me like mad at first then I got used to it and for a long while my hearing stayed very stable but over the last couple of years my hearing in my left ear is going fast and my right one is declining but still very aidable (thank god !) .I do worry about being profoundly deaf in both ears tho .I do feel there is a direct correlation between disease activity and hearing loss .I've long accepted that that is the prognosis for this condition and if it stops and you get left with any hearing it's a bonus but the reality is starting to feel uncomfortably closer  :-\