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Hearing Loss and Tinnitus


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#1 georgie1111

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Posted 16 August 2011 - 03:07 PM

Has anyone here got hearing problems and/or tinnitus?

I have a deficit in the low range hearing and tinnitus in both ears. Add to that I can hear a whooshing sound in my ears (beats are in sync with my pulse), so I never experience silence. It has been the hardest symptom for me to deal with out of all other symptoms I have from diffuse scleroderma. It all started when I was in end stage renal failure.

The hearing specialist told me it was common for renal patients to get it. I also have a severe speech loss. When I speak I sound like a stroke patient BUT I havent had a stroke. I get lots of vascular headaches The specialist gave me hearing aides for both ears she said that tinnitus doesn't fluctuate but your hearing does. When the hearing levels drop, the tinnitus gets louder.

I tried for months to wear the hearing aides but just couldn't cope with them. They really didn't help with the orchestra of sounds in my ears. They did improve my hearing but that's all so these days they sit in a drawer. Has anyone found any little hints that can help with the dreadful constant ringing in the ears?

#2 Shelley Ensz

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Posted 16 August 2011 - 06:28 PM

Hi Georgie,

Have you read our page on Scleroderma and Autoimmune Ear Disease yet?

I have had tinnitus for many years, actually decades now. I also have had an autoimmune ear disease called tympanosclerosis for several decades. With that I have hearing loss, and I wear hearing aids all the time. I did find that taking some medications worsens tinnitus, so you may want to review all your medication side effects with your pharmacist, just in case you find one that is the culprit for worsening it. About 200 different meds including antibiotics, chemotherapy, cardiac meds, even steroids and antidepressants can cause or worsen tinnitus (ringing in the ears.)

I found it helpful to try to deal with my emotions regarding it. For example, I'd acknowledge I was irritated by it, and then tell myself to "let it go". It didn't help me at all to get angry or upset over it as it seemed to only make it worse, but I did have to face that it was bothersome. I'd tell myself it was no different from living by the ocean and hearing the waves roaring and crashing all the time, etc. I found it was worsened with silence.

Oddly enough, with the last round of worsening hearing, my tinnitus for the most part just evaporated! I absolutely adore my hearing aids. I wouldn't trade them for the whole world. I can't imagine going without them, even though I wear very inexpensive ones that are not fancy in the least. I just taped them to my glasses and grew my hair out to cover the disaster area.

You might be worsening the tinnitus by the lack of proper hearing. Why don't you try the hearing aids again, and play some background music? Imagine waves crashing, tell yourself some people live with constant noise their whole lives (like by a busy city street or working in a railroad yard). By normalizing it with ourselves (taking a bad situation and figuring out ways that we can consider it to be normal), it can make it easier to deal with.

If it helps or not, I do really understand what you are trying to cope with. Been there, done that. So here are some extra warm comforting hugs, just for you. I hope you feel a bit better soon. It doesn't have to go away for you to be happy; sometimes what it really takes is for us to accept that it is NOT going away so we better step up to the plate and find other, even more creative ways, to deal with it. Either that, or it will ceaselessly drag us down.

Plus imagine the comfort you can be in the future to others, who are going through the same thing, too. You'll be an incredibly inspiring comfort to them, and it won't be just blowing a bunch of hot air either. It will be from setting a fine example for them!

:emoticons-group-hug:
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Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#3 georgie1111

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Posted 16 August 2011 - 11:47 PM

Oh wow Shelley, I can't tell you how your reply has helped; not just the advice but just knowing someone "gets it"; when you wrote about the emotional response to the irritation of the ringing etc., I KNEW immediately that you understood fully what it's like. There have been times at night ( when the tinnitus is worse) it would reduce me to tears and I would yank on my ears and rub them furiously and belt the side of my head and of course it didn't help at all :lol: just made me worse as I was drowning in that emotion and the crying and agitation was raising my stress levels so everything just got worse. After I calmed myself down I realised then that I must be ever so careful not to get so 'caught up' in that emotion of frustration and agitation; it was a big learning curve.

Regarding the hearing aides I really really tried to tolerate them but I would always pull them out; I wear glasses and every time the glasses moved the hearing aides would scream. I also found them a challange as due to the renal failure I need to sleep a lot so every time I laid down for a nap I'd have to take them out and the extra frustration was my hands/fingers are quite difficult to use so trying to get that little tube in and set the aides around the ears was really hard work for my fingers, so it all just added to my frustration; that's when they went in the drawer!! The specialist did tell me what you said to try to trick the brain into making it feel like you are at a seaside or rustling of the leaves in a tree but that 'emotion' you spoke of made me fail. I think also what is not helping is my urea levels are high and apparently that can make you short tempered and testy hence my uncontrolled emotional response. Oh dear, I sure do have some 'inner work' to do, but you know, Shelley, your reply has made me feel empowered; I will give it another go and learn to accept that it's not going away and I need to try "normalise" it and keep a firm check on my emotional response to it.

Regarding meds one of the culprits was lasix which is awful! I'm not too sure about my blood pressure med; I might research that.

Thank you so much ....... hugs georgie :thank-you:

#4 Robyn Sims

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Posted 17 August 2011 - 02:00 AM

Hi Georgie,

Good to hear that Shelley has been able to give you some practical and moral support!

Juggling all these symptoms is certainly a real challenge, thanks Shelley

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#5 Shelley Ensz

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Posted 17 August 2011 - 05:40 AM

Hi Georgie,

I'm glad you found my input helpful. I solved the problem of clumsy hearing aids by taping them straight to my glasses with tape; I have used wound tape and electricians tape. Glue didn't work! :emoticon-dont-know:

This way whenever I take my glasses off they automatically come off too, which is great as if I can't see anything, why bother hearing?

Also I was endlessly irritated by the little pod type thing on the end of my hearing aids. It would make for a clogged-ears sort of feeling too. So I asked my hearing aid specialist if I could take them off or if they were a vital part of it. She said I could just snip them off! She wouldn't do it though as it would affect the warranty. (Children, do not try this with all models, make sure this advice fits your model, brand or your warranty will be null and void.) It was instantly a thousand times better. I could not only hear more clearly there was also no more of that stuffy-ear feeling, plus no "clothes tag" sort of skin irritation. And my hearing aids are only $150 per ear so I felt more carefree in snipping things than if I'd paid thousands. Plus they just plain stay in place without that "plug" as the tubing only needs to be somewhere near my ear canal for them to work beautifully.

What I'm trying to say is, by working with your hearing aid consultant, finding out the limits of what you can do to modify them to your liking, you may find new ways to enjoy them. Mine are no bother at all -- but I did have to grow my (very short) hair out for about a year to cover the disaster area of my fancy little taping scheme. The happy part of that is that I love my new hairdo, too, now that it has overcome the totally impossible stage.

Good luck to you as you work things through. And here are some more very warm -- and tinnitus free -- hugs.
:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#6 Joelf

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Posted 17 August 2011 - 05:59 AM

Hi Georgie,

I really sympathise with you; thankfully, I don't suffer with hearing loss or tinnitus but my husband has Meniere's disease, which causes dreadful tinnitus symptoms and deafness. As Shelley has advised, he has learned to "live with it" and tries to just push the constant whooshing and other noises into the background. The worse situation for him is in a crowded room, where he's unable to decipher where each noise is coming from and as he's deaf on one side I can bawl and holler at him all I like and the poor soul can't hear me (a lucky thing for him, I hear you say!! ;) :lol: ) He steadfastly refuses to use a hearing aid. :rolleyes:

Certainly as with many things, stress makes it much worse, so if you're able to "let it go" and find a way to deal with the noise as Shelley has said, I think that will help you as well. I do hope that the symptoms improve for you; here's a :emoticons-group-hug: to keep company with the ones Shelley's given you.

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#7 georgie1111

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Posted 17 August 2011 - 06:12 AM

Hi Shelley,

After I read your reply I did actually go and get the hearing aides out of the drawer. I came to the conclusion that perhaps I was behaving like "a princess" :lol: and needed to get my act together, so I put new batteries in them and put them in/on but I think the spare batteries are flat too as there was no sound from them so I will have to wait to get new batteries. I did find that the pod thing was still uncomfortable and only once I had them in did I recall that was another reason I tossed them in the drawer; I just couldn't get used to having my ears plugged up with the pod thingo's. In your reply you said you cut it off? With it off does the tube move around and tickle the inner ear? If it doesn't then I might cut mine off too as I really can't tolerate the plug and what a good idea to stick the aides to the glasses; wow, nothing like the wisdom of experience!!

I did mean to say in the last post I did look at that sclero/ear site and I checked it out yesterday; I couldn't understand a lot of it but I did get the vascular part of it. I was hoping it would help me understand the tinnitus when it didn't that's when I posted asking if anyone else has it etc.

Once again Shelley, a big thankyou; I have officially closed the door on my tinnitus pity party!! :lol: I am gunna tackle this thing and overcome it and I will try life with hearing aides.

Thank you dear lady. hugs "G"

#8 georgie1111

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Posted 17 August 2011 - 06:23 AM

Hi Robyn,

Yes, it's been great advice. Shelley has not only been helpful but she has inspired me to step up to the challange of tinnitus; it truly has been my biggest struggle as it has not stopped ringing 24/7. I coped most of the time; just every now and then I would go into an emotional meltdown just from pure agitation and frustration; living with tinnitus made sclero renal crisis feel like a 'walk in the park'!! :lol: (Not really just kidding ) but it is a challange especially when people just dont 'get it "; it's definately something you have to live with to appreciate how dreadful and wearing it can be. So from here on I am going to confront it, accept it and then let it go and going to be more disciplined in tolerating hearing aids; so in essence you have one 'very happy customer' :emoticons-line-dance: hugs "G"

P.S Have you worked out yet Robyn that we know each other? I have been waiting to see if you have. :lol: :lol:

#9 Jeannie McClelland

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Posted 17 August 2011 - 09:02 AM

I need to join this bandwagon too! I've also had tinnitus for ages and way back when we still lived in Yorkshire, a doctor told me I had hardening in the left ear. Hmmm, I wonder if that was the very first scleroderma symptom? Anyhow, the ringing in the right ear had gotten progressively worse until this spring when I was so sick. Whatever I had zapped the hearing pretty badly, but as Shelley mentioned, it has also lessened the tinnitus. Time for me to make an audiologist appointment, I guess, especially since (thanks to Shelley) I know that hearing aids don't have to cost an arm and a leg.

It's funny what you learn to adjust to in terms of altered self-image. I don't notice wearing the O2 anymore and I thought I would always be bothered by it. Didn't want to appear sick, you know. Well, this weekend we went for a pretty impressive walk up in the mountains and I was startled when a woman came rushing up exclaiming "Good for you! I don't know many people who could do this walk, let alone on oxygen. Good for you! That's great!" I wondered for a minute who on earth she was talking to! :lol:

One of my closest friends wears hearing aids and she also has a dodgy hip. You should see us when we are out together. I always stay to her right, that way when we lurch, we don't crash into each other. It also puts our bad ears to the outside. Too funny and our daughters make fun of us, but hey, it works!

We sclerodermians are strong people. We have the will and together we will find a way.

Warm hugs, eh? Huh? Did somebody say something?
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#10 georgie1111

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Posted 17 August 2011 - 03:06 PM

Hi Jo,

Re. your hubby; I so understand why your hubby flat out refuses to wear his hearing aids. They are really hard to get used to, especially that pod thing on the end of the tubes; it just feels so unnatural to have plugs in that very sensitive inner ear. I didn't know you could cut them off which I will do and then hopefully I will be able to tolerate them better but before I do cut them off, I will wait to hear from Shelley to see if that tube moves about in the ear without the pod thing on it as I reason if it did it could be just as aggravating as the plug; either way the tinnitus is so bad that I am desperate enough to try again ..... "G"

#11 georgie1111

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Posted 17 August 2011 - 03:21 PM

Hi Jeannie,

I definately need to learn "sclero talk". :lol: When you talked about wearing your O2 I thought it was a fancy name for hearing aids; it was only when I read further that I realised the O2 must be oxygen?? D'oh!! Another lady here was talking about her chemo, I assumed she had cancer until Robyn told me it was sclero talk for a particular sclero drug! Again d'oh !. My hair is long enough to hide the hearing aids but it was never the problem for me if they were seen or not, it was everything else about them that made me ditch them; however I have now "turned the page" and am past the "I won't wear them" phase and am keen to give them a go.

It's interesting that both you and Shelley had improvement in the tinnitus; my hearing specialist told me that it was permanent ,so now I know that there is a chance that it might settle which has also given me hope and lastly it will be so good when watching television and actually be able to hear the dialogue!.... "G"

#12 Jeannie McClelland

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Posted 17 August 2011 - 03:40 PM

Hi Georgie,

Yes, the O2 is oxygen. I carry a liquid oxygen tank in a backpack and the tubing comes over my shoulder and then the nasal cannula is worn the usual way. One of the things that concerned me about the hearing aids (I know I'm behind the times) was that between the arms of my glasses and the O2 tubing, I didn't think there would be room on top of my ears for the aids! :blink: Now you can get glasses that will carry the O2 tubing almost invisibly and also glasses that have hearing aids built in. Hmmm, I wonder if they do everything in one pair of glasses? :lol:

Alas, the improvement in the tinnitus is because my hearing in general has worsened and I think that's what happened with Shelley too. The specialist who sees the friend I mentioned above told her that when she is completely deaf, she will no longer hear the tinnitus. Silver lining or gee, that's just great? :glare:

I do need to mention that some of my tinnitus is definitely medication related and a lot of my hearing loss is due to years of shooting, not just scleroderma. Nothing like all those loud bangs next to the ear to cause the 'Say what's?' And if my son is reading this, no, it wasn't caused by my occasional foray into the world of heavy metal music!
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#13 Shelley Ensz

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Posted 19 August 2011 - 09:20 AM

Hi Georgie,

My hearing aid specialist told me the pod things on my hearing aids were not necessary for it to function and said I could (remove or snip) mine off but at my own risk. However there are many different forms of hearing aids so I'm sure it's not a one-size-fits-all answer. Why don't you contact the manufacturer of your hearing aids, and ask them if the pod is required for yours to work?

If you have a replacement set of tubing with pods that you connect to the body of the hearing aid, then you can try clipping (or removing) the pod off of one of them and see how it goes because you have a backup in case it fails. I still have a little "L" shape so the foot of the L aims towards my inner ear. It doesn't hurt or rub or make that stuffed ear feeling for me, because it's not blocking the entire ear and because I have the unit taped to my glasses so it is not moving around any, either.

My whole slapdash setup must sound awful to others, but I am happier with my $150/ear hearing aids taped to my glasses and with the pod clipped off, than friends of mine who have $6,000 an ear hearing aids. I have a little lever to simply move if I want to reduce background noise and I tape over the volume setting so it is at the perfect level, and leave it there except for very unusual circumstances (like at a noisy party) when I just untape a little flap and crank up the volume a bit for the time being.

All that said, I went to a party the other night which was held in a noisy bar. The music was blaring behind me and I was trying to talk to a very soft spoken person. Several times I turned up the volume on my hearing aids but nothing happened! I asked her to move closer, I asked her to speak up, I asked her to repeat herself over and over again. I finally resorted to mostly lip reading and pleasant nodding in agreement mostly without any idea of what we were discussing. When we left the party, I complained that I couldn't hear anything at all and that my hearing aid batteries must be deader than a doornail.

Whereupon I discovered, they were both very neatly switched to OFF. :blush:

I love them, I really love them, but it does help to remember to turn them ON.
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#14 georgie1111

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Posted 19 August 2011 - 03:05 PM

Hi Shelley,

How funny that you spent the whole evening struggling to hear only to find you had not turned your aids on!! Those soft spoken people are really hard to hear even in a room with no background noise, but when you do have a soft spoken person, noisy background and aids off I can see why all you could do was lip read, nod and smile politely. :lol: Can't it be so awkward and embarrassing when you are out socially and you just can't follow conversations from those soft spoken people!!

Re. my aids I don't have an on/off switch on mine; they only have sound up/down buttons, but I did notice that I didn't have to cut off that pod as they are removable!! That was a relief as I recall you saying about the possible effects on the guarantee in Australia; we don't have the guarantee set up, we are given more like a "plan" where the government gives you the money to cover all maintenance and appointments for the hearing specialist so I was relieved to know that these pods slip on and off so it won't effect my plan etc. I put both aids on without the pod and I was stunned at how different they feel having no pods; it made the experience sooo different I didn't even know I had anything in my ears but with the pods - ugh - they just felt so packed and full!! I put new batteries in them but NO sound ,so I just now, after reading your post, put the pods back on with new battery to see if they have to have pods to work but still no sound, so I am going to have to be patient and just tolerate the tinnitus until I get back to the specialist to get the aids checked.

I have to wait until Monday for my friend to come over so she can ring and make the appointment for me; since I have coped with tinnitus for so long another week or two won't hurt as at least now I have hope as I know now I could cope with aids with the pods off and have them taped to my glasses. I still can't believe the difference with those dreadful pods gone!!

So thanks again for your advice; can I ask you when you had your aids turned off or the times when you are not wearing them eg. going to bed, does your tinnitus rise up again?

Hugs "G"

#15 Shelley Ensz

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Posted 19 August 2011 - 04:08 PM

Hi Georgie,

Down with pods!
:emoticon-congratulations:

I've almost been tinnitus-free since my hearing worsened last round, with only brief episodes and slight at that (compared to), so it is pure bliss. However I wasn't aware of what Jeannie said, that when you're entirely deaf you also don't have tinnitus either. Now I'm starting to really hope it never leaves entirely!

Please forgive me if this is a silly question, but have you put the batteries in, in the right direction? I have tried them backwards and they just don't work. Try taking them out and reversing them. Mine have a little + sign on one side. My batteries are cheap and available at the local drug store. You might try fresh batteries. If you've abandoned your hearing aids for awhile, even the packaged batteries could have lost their ooomph. I buy only about 3 months of batteries at a time so they don't go flat in storage.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#16 georgie1111

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Posted 20 August 2011 - 04:00 AM

Hi Shelley,

Yes I did try the batteries both ways plus side up plus side down and still nothing. I think you could be right that the batteries have lost their ooomp even though the packet has a date on it 5/2012. I will buy new ones on Monday as well as make an appointment with the hearing aide lady (not sure if she a doctor or not.)

Tonight the ringing is really bad so I am flat out trying to embrace it, acknowledge it, accept it then just let it go. It's so hard as when you need your mind power to over come a symptom it is extra hard when the problem is actually in the 'engine room' !! But I do realise now that I only have two choices, one being to let it consume me and drown in the emotions or use mind power to deal with it. So as hard as it is I prefer the latter choice so I am plugging away quietly.

About yours and Jeannie's tinnitus going away (oh what a beautiful thought!) does that mean that you're cured of it ? I thought the 'rule of thumb' was the less hearing you have the louder the tinnitus? So happy for you both that you are free of it. I can't wait for the day that I too can boast that I hear silence yay!!

Hugs,

"G"

#17 Jeannie McClelland

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Posted 20 August 2011 - 07:40 AM

Hi Georgie,

Yeah, I guess Shelley and I are becoming cured of it in the respect that we are hearing less of everything. :lol: I like the idea of hearing silence. It sounds very calm and peaceful.

Today, so far, I've heard our ancient border collie barking at 5AM: Get up you lazy louts, I want to go out and herd sheep! And at 5:15 I heard her barking again: Open this door, I want to come back in, there aren't any sheep out here and I want to go back to sleep! She's not a continuous barker unless it's someone at the door, she barks one sharp bark, waits a bit, then repeats the single sharp bark. The interval was carefully calculated for the maximum annoyance value.

Ah, and the other thing I heard (amazingly clear) was my hubby mumbling something about [expletive deleted] old dog!
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#18 Amanda Thorpe

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Posted 20 August 2011 - 09:09 AM

Hello All

I'm coming in late on this one but I had to join in, alas you are all going to think I am raving mad though. I have had tinnitus since I was a child, although never technically diagnosed I now realise what the white noise in the ears is, the whooshing sounds, the whining, the ringing so loud I often ask my husband if he can hear it in order to determine whether the sound is "real" or not. I often have to use ear plugs because of snoring husband and/or cat and it makes the tinnitus worse but here's where you'll think I am mad...I couldn't sleep without my tinnitus, couldn't stand the sound of silence!I have had it so long I wouldn't know what to do without it. I guess I have become institutionalised to tinnitus!

Take care.
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#19 georgie1111

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Posted 20 August 2011 - 03:11 PM

Hi Jeannie,

So you have a border collie, eh? They are such a beautiful dog (except when barking at 5.00am). :lol:

We had a border collie he was just gorgous but being 'city folks' his instinct to round everything up was focused on cars so whenever cars drove past there was our old dog trying to round them up. It was actually scary to watch as I always feared he would go under the wheels. Nothing we did ever deterred him from rounding up cars. Happy to say he lived a long happy life and brought us much joy. I see that Jo has an avatar with a black and white spaniel; so cute with their floppy ears and big brown eyes , my last dog was a Pomeranian. She was the dearest little being. She filled me with joy on a daily basis. She died from epilepsy almost 8 years ago and I still miss her. So yeh your talking with a dinky die dog lover here, even if they do bark at 5.00am. :lol:

"G"

#20 georgie1111

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Posted 20 August 2011 - 03:28 PM

Hi Amanda,

My first response to your post saying you couldn't live without tinnitus was "What"!! :lol: However, I'm glad you posted that as after I got over the "What!" response I realised that what you said actually backed up what Shelley was saying about acknowleging it, accepting it and letting it go, so you are proof that you can 'get to a place' of peace living with tinnitus. I would prefer it to just GO AWAY but if it is here to stay I can only hope that I can get to where you are and think of it as normal.

Hugs "G"