I'm Back, but Just for Today

[Neenie]

Hi family,
How are you. I've really been missing you. I'm still doing Audiology and am on placement at the moment in a mining company. There's so much to learn. Before starting I thought the ear would be pretty easy, I mean it is just an ear after all. But, no, there's so much more to it than what appears on the surface. I guess this is why the problem with tinnitus persists, because there are so many different things that can go wrong, and thats just assuming its the ear going wrong on its own, not something in addition like, damage due to ototoxicity, noise exposure, or aging! We haven't covered tinnitus yet in detail, sorry, but I'll let you know once we do. I've pre-read what we're going to be doing on tinnitus and unfortunately its nothing new. There's nothing in there that you dont already know. Its basically still saying to work on your emotional response, and I just think that is rubbish. I think it's the volume that is the deciding factor on whether its distressing or not. I mean, if I could only hear it at night in a quiet room, I wouldn't have ever even mentioned it to a doctor. But I hear it ALL the time except the shower. And I live in Australia, so water restrictions, and no long showers allowed! Anyway, nothing has changed for me. I've started Neuromonics and its crap. It's meant to be relaxing and its not, its annoying, dont waste your money. The earphones are occluding so you can hear your tinnitus louder with it on that not. There's meant to be "shower sounds" but I can't hear any shower sounds so I dont know how its meant to be soothing when you cant even hear it. And yes, I've turned up the volume and I still cant hear it and no, I dont have a hearing loss! So I'm actually still in full break-down mood. I'm at uni all day 8-6pm with a 20 min lunch break. Sometimes it gets so bad that I run to the bathroom and burst out crying. Its hard work pretending to be normal all day! So yer, no good news story hear! Boo. I'll write again in a few months. Hugs.

 

[Magpie]

The ear is a pretty complicated organ and it also controls our balance as well as our hearing. I understand what you are saying by "nothing in there that you don't already know" which is why I wouldn't bother with TRT as there is nothing they could tell me that I don't already know. Basically I don't need a tinnitus demystifying lesson. But you are wrong about emotional responses and hopefully some day you will understand this. As I understand it the first stage of neuromonics is the masking stage but if you are like me there is nothing other than loud music and headphones that comes close to masking it. Be careful with the volume on that Oasis or glorified mp3 player as I like to call it. It's only my opinion but CBT might have been a better option for you. I hope the counselling is along the lines of CBT.

 

[Micky]

Neenie wrote...

! Anyway, nothing has changed for me. I've started Neuromonics and its crap. It's meant to be relaxing and its not, its annoying, dont waste your money.

yep your right Neenie its rubbish.. That's exactly what i found and 2 other friends.. So take it back and demand a refund.. Its a hyped up MP3 player.. Along with their hyped up advirtising and testimonies.. Micky

 

[Amelia]

Oh Hun I've been thinking of you often, really hoping that this is something that would help you. I'm so sorry to hear that it isn't what you expected.

But I know what you mean... It is hard pretending to be normal when you feel like there is as storm raging within your ears. Tinnitus is so f*cked up

Do you think you will persevere with it?

 

[Neenie]

Oh Hun I've been thinking of you often, really hoping that this is something that would help you. I'm so sorry to hear that it isn't what you expected.

But I know what you mean... It is hard pretending to be normal when you feel like there is as storm raging within your ears. Tinnitus is so f*cked up

Do you think you will persevere with it?

Yer, I'm gonna keep going. I can't not try everything. I'm literally going to try absolutely everything. I just can't see myself living this way forever. Most days I get up, go to Audiology, and then get sad because I'm wasting my time being there coz I can't imagine I'll still be alive to see the end of the course. Sorry, I'm not being dramatic, I'm just telling the truth. At the moment I feel like no-one cares about it anymore and they dont want to talk about it, and so I dont. And then they think that everything is ok when it totally isnt ok and I'm dying inside while they're telling me stories about what they did that day and all I can think is, please God, when can I die?

 

[Amelia]

Huge virtual hugs xxx I'm so glad you are going to continue - at the very least at least you know you have it a red hot go, and who knows .... It may start to help

I know it doesn't always help, but I do feel the same as you to come extent. It's always in the back of my mind ... Like I'm a bit of a fraud for acting like everything is ok when I feel like yelling "I'm being driven crazy by this shit!!!" At everyone I see.

Just take each moment as it comes. Seriously - just one step in front of the other, and you will keep moving forward. You are so very strong - stronger than you know. Do you know how amazing you are for beating anorexia? I can't begin to Imagine how mentally difficult that was, never mind the physical side of it, that in itself shows an amazing amount of willpower and strength. You can get through this moment, this minute, this hour and this week. You can xxx

 

[LeQuack]

Yer, I'm gonna keep going. I can't not try everything. I'm literally going to try absolutely everything. I just can't see myself living this way forever. Most days I get up, go to Audiology, and then get sad because I'm wasting my time being there coz I can't imagine I'll still be alive to see the end of the course. Sorry, I'm not being dramatic, I'm just telling the truth. At the moment I feel like no-one cares about it anymore and they dont want to talk about it, and so I dont. And then they think that everything is ok when it totally isnt ok and I'm dying inside while they're telling me stories about what they did that day and all I can think is, please God, when can I die?

Sorry your feeling that way, unfortunately I am as well. Every day I'm around people and they're making all kinds of plans for travel, family, kids and so on, while I'm here waiting so my life can continue.

Hope we can get through it, somehow.

 

[Neenie]

Sorry your feeling that way, unfortunately I am as well. Every day I'm around people and they're making all kinds of plans for travel, family, kids and so on, while I'm here waiting so my life can continue.

Hope we can get through it, somehow.

Apparently "waiting" is the worst thing to do. But I'm with you, I'm also just waiting so I can start living again. Even though I know thats the worst thing to do. But I cant help it. It's like having a broken leg and not being able to do things until your bones heal. Hopefully our "bones" will eventually heal. But here is a quote: Life isn't about waiting for the storm to pass, its about learning to dance in the rain! Good luck.

 

[Martin69]

Apparently "waiting" is the worst thing to do. But I'm with you, I'm also just waiting so I can start living again. Even though I know thats the worst thing to do. But I cant help it. It's like having a broken leg and not being able to do things until your bones heal. Hopefully our "bones" will eventually heal. But here is a quote: Life isn't about waiting for the storm to pass, its about learning to dance in the rain! Good luck.

Hi Neenie.
Well said. I totally understand your situation. I am in the same. T for 5 months now. Did TRT for 7 weeks in TRT clinic here. They made a lot of counselling with me and I am using masking devices and/or hearing aids. Also sometimes I play those Neuromonics sounds from Generalfuzz site. Neuromonics is no longer done in Germany (at least in most tinnitus clinics here). They found it being useless.
I myself try to live as normal as possible - which is much harder than before.
And I hope for habituation on the long run. I read some success stories.
I guess our biggest enemies are anxiety and depression.
If we find a way getting rid of them, we make a big step forward.
All the best to you and the others,
Martin

 

[Linds]

Hey Neenie. I just want you to know I'm thinking of you and your struggle.
If it helps, I want you to know I have all but habituated in about 3months. However I did NOT mask my t. I have nature sounds and running water sounds at night and that's it. I truly feel not masking has aided in the swift habituation process. I can hear mine all the time except in the shower as well, unless I am completely focused on something. Keep up the studies and all the best.

Hi family,
How are you. I've really been missing you. I'm still doing Audiology and am on placement at the moment in a mining company. There's so much to learn. Before starting I thought the ear would be pretty easy, I mean it is just an ear after all. But, no, there's so much more to it than what appears on the surface. I guess this is why the problem with tinnitus persists, because there are so many different things that can go wrong, and thats just assuming its the ear going wrong on its own, not something in addition like, damage due to ototoxicity, noise exposure, or aging! We haven't covered tinnitus yet in detail, sorry, but I'll let you know once we do. I've pre-read what we're going to be doing on tinnitus and unfortunately its nothing new. There's nothing in there that you dont already know. Its basically still saying to work on your emotional response, and I just think that is rubbish. I think it's the volume that is the deciding factor on whether its distressing or not. I mean, if I could only hear it at night in a quiet room, I wouldn't have ever even mentioned it to a doctor. But I hear it ALL the time except the shower. And I live in Australia, so water restrictions, and no long showers allowed! Anyway, nothing has changed for me. I've started Neuromonics and its crap. It's meant to be relaxing and its not, its annoying, dont waste your money. The earphones are occluding so you can hear your tinnitus louder with it on that not. There's meant to be "shower sounds" but I can't hear any shower sounds so I dont know how its meant to be soothing when you cant even hear it. And yes, I've turned up the volume and I still cant hear it and no, I dont have a hearing loss! So I'm actually still in full break-down mood. I'm at uni all day 8-6pm with a 20 min lunch break. Sometimes it gets so bad that I run to the bathroom and burst out crying. Its hard work pretending to be normal all day! So yer, no good news story hear! Boo. I'll write again in a few months. Hugs.

 

[Martin69]

Hey Neenie. I just want you to know I'm thinking of you and your struggle.
If it helps, I want you to know I have all but habituated in about 3months. However I did NOT mask my t. I have nature sounds and running water sounds at night and that's it. I truly feel not masking has aided in the swift habituation process. I can hear mine all the time except in the shower as well, unless I am completely focused on something. Keep up the studies and all the best.

Hi Linds.
I guess that is an excellent time habituating in 3 months to a tone you can hear all the time.
Well done.
Would be lucky reaching this, too.
Martin

 

[katriina]

So if I got this right, you study audiology? Did you decided this after you got tinnitus or have you always wanted to study it??

 

[Dr. Nagler]

Hi family,
How are you. I've really been missing you.

Been missing you, too. Thanks for checking in. Take it all in baby steps, OK? You'll get there.

Did TRT for 7 weeks in TRT clinic here.

Martin, I thought you said in an earlier thread that although they called it TRT, it really wasn't TRT. No categories. Nothing about annoyance, communication, mixing point, stochastic resonance, etc. Just want to be sure we're on the same page when you refer to TRT. Thanks.

sp

 

[Martin69]

Been missing you, too. Thanks for checking in. Take it all in baby steps, OK? You'll get there.



Martin, I thought you said in an earlier thread that although they called it TRT, it really wasn't TRT. No categories. Nothing about annoyance, communication, mixing point, stochastic resonance, etc. Just want to be sure we're on the same page when you refer to TRT. Thanks.

Stephen Nagler

Hi Stephen Nagler.
Yes. You are right. They call it TRT here, but probably it was not.
I am confused. Here is their German web site where they refer to TRT.
http://www.schoen-kliniken.de/ptp/kkh/bar/tinnitus/leistungen/

Would really lucky to understand the difference between their and your TRT treatment.

BR, Martin

 

[Dr. Nagler]

Hi Stephen Nagler.
Yes. You are right. They call it TRT here, but probably it was not.
I am confused. Here is their German web site where they refer to TRT.
http://www.schoen-kliniken.de/ptp/kkh/bar/tinnitus/leistungen/

Would really lucky to understand the difference between their and your TRT treatment.

BR, Martin

Probably worth exploring in some detail, but not here in Neenie's thread. Maybe if you start a new thread on the Treatment forum in a few days and draw my attention to it, we can discuss it there.

Stephen Nagler

 

[Beth]

Hi family,
How are you. I've really been missing you. I'm still doing Audiology and am on placement at the moment in a mining company. There's so much to learn. Before starting I thought the ear would be pretty easy, I mean it is just an ear after all. But, no, there's so much more to it than what appears on the surface. I guess this is why the problem with tinnitus persists, because there are so many different things that can go wrong, and thats just assuming its the ear going wrong on its own, not something in addition like, damage due to ototoxicity, noise exposure, or aging! We haven't covered tinnitus yet in detail, sorry, but I'll let you know once we do. I've pre-read what we're going to be doing on tinnitus and unfortunately its nothing new. There's nothing in there that you dont already know. Its basically still saying to work on your emotional response, and I just think that is rubbish. I think it's the volume that is the deciding factor on whether its distressing or not. I mean, if I could only hear it at night in a quiet room, I wouldn't have ever even mentioned it to a doctor. But I hear it ALL the time except the shower. And I live in Australia, so water restrictions, and no long showers allowed! Anyway, nothing has changed for me. I've started Neuromonics and its crap. It's meant to be relaxing and its not, its annoying, dont waste your money. The earphones are occluding so you can hear your tinnitus louder with it on that not. There's meant to be "shower sounds" but I can't hear any shower sounds so I dont know how its meant to be soothing when you cant even hear it. And yes, I've turned up the volume and I still cant hear it and no, I dont have a hearing loss! So I'm actually still in full break-down mood. I'm at uni all day 8-6pm with a 20 min lunch break. Sometimes it gets so bad that I run to the bathroom and burst out crying. Its hard work pretending to be normal all day! So yer, no good news story hear! Boo. I'll write again in a few months. Hugs.

Hi Nina, good to hear from you, I wondered how you were doing. Try to look forward to one day being the best audiologist ever! You'll know all about the ear (though I personally believe it has very little to do with tinnitus) and you've certainly had first hand experience of what it's like to have tinnitus. You'll make a very compassionate and understanding proffesional. I know what hell you're going through but don't beat yourself up for not doing as well as you'd like.......you will get there just take it a step at a time and remember that some of those steps may be backwards but in the long run you'll be OK.

 

[sgal]

Hi Nina, good to hear from you, I wondered how you were doing. Try to look forward to one day being the best audiologist ever! You'll know all about the ear (though I personally believe it has very little to do with tinnitus) and you've certainly had first hand experience of what it's like to have tinnitus. You'll make a very compassionate and understanding proffesional. I know what hell you're going through but don't beat yourself up for not doing as well as you'd like.......you will get there just take it a step at a time and remember that some of those steps may be backwards but in the long run you'll be OK.

This is so true. Progress is not linear but back and forth for a while with some progress forward. If I look at the progress I've made since my tinnitus first spiked, it's a lot. Still there are days when I'm tired and I can barely cope with it. Hang in there Neenie. Maybe crying once a day is progress over all day. I'm not trying to minimize your pain, I understand but I truly believe you will be better.

 

[Lisa88]

@Neenie , You should be able to get them to work the device so it suits you better on an in office visit. Also, there must be a range of headphones you can choose from. I took one graduate class in audiology. It is a fascinating field. Seems that this is a good environment for you to be in right now. Academics in audiology are often a great resource, even more so than the clinicians out there working. Keep on your track, and insist on more tailoring of your Neuromonics device. You are going to get through this. It's still early days for us. Things can get better. A leading tinnitus researcher and doctor, one of the best in the US, said to me that 80% of sudden onset tinnitus cases have their tinnitus substantially subside in the first year. This statistic has been echoed by other doctors and researchers in the field. A good statistic for us. Keep the hope!

 

[Stina]

Hey @Neenie Im glad to see you havent quit your studies and are trying to get through. Thats nice! Keeping busy reallyy helps me.
I suppose there are two types of medical professionals - the ones who work for the future and the ones who help people now. The reality is that most people live in the moment and want to have a good life right now, not in 20, 10 or even 2 years. Thats why the emotional response thing works. Since tinnitus is not dangerous, being happy and having tinnitus do not necessary have to be the same thing. Therefore with tinnitus it does depend a lot on your reaction to it. It is very much possible to live a good life with loud tinnitus, which we also see on this board.
All the best

 

[Neenie]

So if I got this right, you study audiology? Did you decided this after you got tinnitus or have you always wanted to study it??

yer, got tinnitus. no one i went to could help me. thought "this is fucked" and decided to study it so i could find a better way. dunno if thats even possible but i gotta try

 

[Neenie]

@Neenie , You should be able to get them to work the device so it suits you better on an in office visit. Also, there must be a range of headphones you can choose from. I took one graduate class in audiology. It is a fascinating field. Seems that this is a good environment for you to be in right now. Academics in audiology are often a great resource, even more so than the clinicians out there working. Keep on your track, and insist on more tailoring of your Neuromonics device. You are going to get through this. It's still early days for us. Things can get better. A leading tinnitus researcher and doctor, one of the best in the US, said to me that 80% of sudden onset tinnitus cases have their tinnitus substantially subside in the first year. This statistic has been echoed by other doctors and researchers in the field. A good statistic for us. Keep the hope!

good to know. mine came on suddenly one afternoon, noticed it whilst watching TV so not even in a quiet room. Been 7 months now. Zero improvement. Zero habituation. I'm losing hope. Its only on the one ear. And there is a loud click everytime I talk which other people can hear. No one knows what it is. I have had a million different explanations. None are right, I doubt. Had an MRI but nothing there. IDK

 

[Neenie]

Been missing you, too. Thanks for checking in. Take it all in baby steps, OK? You'll get there.



Martin, I thought you said in an earlier thread that although they called it TRT, it really wasn't TRT. No categories. Nothing about annoyance, communication, mixing point, stochastic resonance, etc. Just want to be sure we're on the same page when you refer to TRT. Thanks.

Stephen Nagler

Guess what. I was just sitting in the library during a break and was browsing a book on tinnitus talks or articles given at a conference, I think at my uni, and found something written by you! Haha, I was like, WOW, I know this guy! Didnt get a chance to actually read it though!

 

[Dr. Nagler]

Guess what. I was just sitting in the library during a break and was browsing a book on tinnitus talks or articles given at a conference, I think at my uni, and found something written by you! Haha, I was like, WOW, I know this guy! Didnt get a chance to actually read it though!

Scary, huh?

Must have been in the Proceedings of the VIIth International Tinnitus Seminar, where I presented two papers. The meeting was in Fremantle, but Dr. Robert Patuzzi from your university was the chairman and edited the proceedings.

Stephen Nagler

 

[Street Spirit]

HI Neenie, sorry to hear you are not doing very well. I just wanted to tell you, that last week I met with an Audiologist, who was wonderful, caring and compassionate. She also has (loud) T that started in 1988, out of the blue, but she believes because of stress. She too, went through a very dark period, and then decided to go to school and become an Audiologist. She has habituated. She also said, that it was antidepressants that really helped her out and she still takes them. I went to see her to have my ldls taken and a hearing test done, but felt like it was more of a a therapy session. She made great suggestions and assured me there was a light at the end of this dark tunnel. Honestly, it felt so wonderful to have a "medical person" actually understand what it was I going through at that moment. She does not treat H however, so I need to see someone else, but I am so happy I did see her, because I had so much anxiety and her just understanding made all the difference in me feeling comfortable taking those scary tests lol and talking about my feelings. I did break down and cry and she was very sympathetic and told me her story...Maybe this story will inspire, maybe not, but just do know, life can get better, even with loud T! (and H in my case) and one day you too, can be that very caring, sympathetic Audiologist, when someone like me or you, walk into your office. Be well.

 

[DezDog]

Hey Neenie, I wanted to add my voice to the number of people wishing you well and all the best for you. It's hard not to let the dark thoughts take over, but if you can observe them, you can reject them too. I remember feeling like you; people living their lives around me, and me jealous of all the trivialness and minutiae they were wrapped up in, talking about, rushing off to. You think you'll never get back to that level of living your life, but lots of people do and there are many reasons to think you will too.
DD

 

[Champ]

yer, got tinnitus. no one i went to could help me. thought "this is fucked" and decided to study it so i could find a better way. dunno if thats even possible but i gotta try

Neenie I love how you think =) Figure out how to fix the problem!

I was talking to my brother yesterday (who also has tinnitus) about how cool its gonna be when they figure out some simple, easy fixes to it. I truly believe that's possible - its an issue of sensing something that isn't there, and if we can disable the interpretation of a disordered sense (frequencies we can't hear) then tinnitus would go away, like it can for some people.

 

[Djurov]

Hey guys im new here and just recently got T aswell

It started out with a cracking/bubbly sound and doctors said it would go away, the sound came along with a could. The cold went away, but the sound become tinnitus! Its hard to discribe, if its in the head or ears? But nevertheless i try to drown it down with computers and doing crazy stuff as running untill i pass out!

I WILL find a cure! and i will fix my own problem as well as helping others out!
How old are you neenie and do you mind giving me a place to stay, so that i can work in australia ?

 

[tom68]

Sorry to read you are having such a rough time Neenie. Definitely stick with your studies, I've quit a lot of things in my life I should have stuck at, the only thing worse than the tinnitus would be having the tinnitus and nothing in your life to focus on either. Christ I sound like some elderly uncle or something !

Like the others say apparently it often gets easier - I'm too new to it to know personally but my father in law tells me he's had it 20 years. He's a hard bloke, former nightclub doorman in mining towns round here and farm labourer, not one to show emotion, yet he says when it started he couldn't handle it. Now he says it doesn't bother him and often he can't even hear it - there is hope.

 

[Zimichael]

Neenie... Keep at it girl. Remember you have a lot of people here rooting for you and we are hoping to see you on the Nobel platform, then dishing out your trillions of $$$ pouring in from the NSTC you patented. (Sorry... Nennie-Simple-Tinnitus-Cure).
By the way, love how you write. Just tell it like it is, no shying away.
Big hugs...I know these places you are in.
Best, Zimichael

 

[Neenie]

Thanks guys. You're all awesome and I hope you know that!