Very Down Today...

[Kathi]

I had lunch today with a friend who has tinnitus. She's had it for 15 years and says she always hears it. I guess I had some fairytale idea about what habituation is--that the sound would not be noticeable once my brain got used to it. I took a break from the board and it really didn't make much difference--I continue to work and live my life but everyday is a roll of the dice. I don't let the noise stop me from what I need or want to do --and sometimes I do forget it or put it in the background--but life is not as joyful as life was before tinnitus. I'm sorry that I'm not all positivity but I just feel kind of down after hearing that my friend always hears it after 15 years.

 

[rtwombly]

I'm with you. I often feel like life has just lost a little of its luster because of this condition. But take heart! Even the most pessimistic of us don't expect to be in the same boat as your friend. 15 years is a lifetime the way medical science is advancing on tinnitus now.

Try to imagine one of two scenarios:

1. A drug is developed that successfully treats your tinnitus. You can look back on your experience and learn empathy for all the people in your life who are suffering some illness. You'll have gained permanent wisdom at the cost of temporary suffering.

2. You become habituated to your noises. Yes they are still there but they no longer seem relevant to your life or happiness. You can look back on your experience and learn empathy for all the people in your life who are suffering some illness. You'll have a deeper knowledge of yourself and others.

Personally I'm still at the point where I can easily believe we're close to a cure and I don't need to just "learn to live with it". At the same time, I'm doing more of my day-to-day activities and finding that I can still participate and enjoy them despite my tinnitus.

Picture yourself a few years from now, and picture yourself happy. How you'll get from here to there is the story yet to be written.

 

[Kathi]

Thank you for your response @rtwombly. I do hope a drug is developed but I'm not counting on it. I'm not really suffering anymore--I live with my noise and as I work in healthcare, I'm very empathetic towards those with worse problems. My whole point is that my friend did not become habituated--at least not what I thought habituation is--after 15 years. At lunch she was asking me about caffeine, alcohol, etc.--anything that would lessen her tinnitus. I thought that at 12 months or 18 months I would no longer be conscious of the noise. Now I know that is not necessarily true. It was as if my balloon burst.

I'm with you. I often feel like life has just lost a little of its luster because of this condition. But take heart! Even the most pessimistic of us don't expect to be in the same boat as your friend. 15 years is a lifetime the way medical science is advancing on tinnitus now.

Try to imagine one of two scenarios:

1. A drug is developed that successfully treats your tinnitus. You can look back on your experience and learn empathy for all the people in your life who are suffering some illness. You'll have gained permanent wisdom at the cost of temporary suffering.

2. You become habituated to your noises. Yes they are still there but they no longer seem relevant to your life or happiness. You can look back on your experience and learn empathy for all the people in your life who are suffering some illness. You'll have a deeper knowledge of yourself and others.

Personally I'm still at the point where I can easily believe we're close to a cure and I don't need to just "learn to live with it". At the same time, I'm doing more of my day-to-day activities and finding that I can still participate and enjoy them despite my tinnitus.

Picture yourself a few years from now, and picture yourself happy. How you'll get from here to there is the story yet to be written.

 

[MattK]

Don't be sorry abut not always being positive Kathi. No one is all the time. I'm sorry you're having such a hard time. I know what you mean. I thought I was to a point where I was ok, and now, here I am again. Did your friend say that hers bothers her still? If not, did she have any advice for you?

I know habituation isn't the ideal solution, as the ideal solution would be a legitimate cure. But as Dr. Nagler says, if it doesn't bother you, then it won't matter as much. I am hoping I can get to that point. I know some people think habituation is a sham, but really, what else is there at the present time?

 

[Kathi]

Thanks MattK--I usually do try to be positive but just not feeling it today. I'm sorry you are having a setback. My friend says that she always hears her noise. She is not distressed like we were at the onset but it still bothers her and she asked me for advice...she asked if she should give up salt, caffeine, alcohol and other things. I told her that diet does not seem to effect my tinnitus but that everyone is different so she could try and see if giving up those things makes a difference. I did not share that I was disappointed that her T is still bothersome after 15 years. I didn't want to cause her anymore worry. I'm so happy you are all here and understand when it's gets hard. I listen to Dr. Nagler--he was very helpful to me when I first came here and asked about habituation but it seems some don't habituate.

Don't be sorry abut not always being positive Kathi. No one is all the time. I'm sorry you're having such a hard time. I know what you mean. I thought I was to a point where I was ok, and now, here I am again. Did your friend say that hers bothers her still? If not, did she have any advice for you?

I know habituation isn't the ideal solution, as the ideal solution would be a legitimate cure. But as Dr. Nagler says, if it doesn't bother you, then it won't matter as much. I am hoping I can get to that point. I know some people think habituation is a sham, but really, what else is there at the present time?

 

[MattK]

Thanks MattK--I usually do try to be positive but just not feeling it today. I'm sorry you are having a setback. My friend says that she always hears her noise. She is not distressed like we were at the onset but it still bothers her and she asked me for advice...she asked if she should give up salt, caffeine, alcohol and other things. I told her that diet does not seem to effect my tinnitus but that everyone is different so she could try and see if giving up those things makes a difference. I did not share that I was disappointed that her T is still bothersome after 15 years. I didn't want to cause her anymore worry. I'm so happy you are all here and understand when it's gets hard. I listen to Dr. Nagler--he was very helpful to me when I first came here and asked about habituation but it seems some don't habituate.

Kathi,

Before today, have you had good days? I certainly believe today is a "worse" day than other days, right? I think that is very important for you to recognize and admit to yourself. As for your friend, perhaps you guys can comfort each other. I mean, how many of us would love to have a close friend that understands what we are going through? I think that would be such a blessing... not that I would wish this upon one of my friends. But, you know what I mean. I mean, it's sort of like what we do on here; we're here to support each other and it feels more meaningful knowing that we know what it is like.

As for habituation, no one said it was easy. Dr. Nagler had to get help to habituate. I am determined to habituate... the unfortunate thing is, at this present time, I cannot afford to get help from my audiologist because she's pretty pricey and I've got a lot of debt.

But my CBT counselor helped me a lot in the past and I am going to be seeing him again on Monday. He has tinnitus and he's complete fine with it.

I can promise you this much Kathi: my dad has had tinnitus ever since his military days, and it wasn't until this year when I got mine that I even knew he had tinnitus. He told me it used to drive him crazy, but now he doesn't think about it anymore. So, I do know it really is possible to habituate. But that doesn't mean it will be easy.

Do you have counselors or audiologists who can help you?

 

[Teri]

Kathi,

T will become our "new normal". That is just the reality of it. I think T, like any other condition, we will have good days and bad days. That too, will become normal. You will be fine. Just chalk today up as "one of those days".

Hugs

 

[Michael2013]

What did your friend say about her life today even though she hears it all the time? Does she also not find life as joyful or does it no longer bother her much?

 

[billie48]

Sorry Kathi that you have a down day. But don't let a single case (your friend) dictate the future for you. Cancer can kill its patients but not all patients. T can afflict some people but not all people, and some can suffer longer than others, depending on varying factors of individuals. Even though your friend is no longer distressed by her T, she is stilled bothered by it which may mean her habituation to her T is not 100% yet. Don't use her as the standard. Perhaps look at Dr. Nagler as a model of success with habituation.

If we get to a state where we hear the ringing but don't react to it with negative reaction, then the outcome of habituation may be different than if one is still bothered by it. This bothering can mean paying attention to or monitoring T. That of course will bring T to the forth front of attention. True habituation happens when you simply don't care and don't mind about T high and low. The brain will then not treat T as a threat and it will then do a much better job to fade out T from consciousness when you are distracted with things.

So stay positive and hopeful that you will achieve a higher level of habituation than your friend eventually. Believe it. Take care and God bless.

 

[Greg Clarke]

I'm in the middle of what I can only hope is a temporary spike. I was feeling pretty desperate last night but got great advice on the boards here, last night I just tried to be thankful for everything I have and was still able to enjoy the company of my family. There's plenty of people on this forum that deal with Tinnitus at levels beyond what most have and we could do worse than to take inspiration from them. It's not easy, I know and even though this spike doesn't seem to be going anywhere soon I'm concentrating on some of the tips that have been given to me and trying to remain positive that it will return to the background in due course.

 

[Freddie]

I had lunch today with a friend who has tinnitus. She's had it for 15 years and says she always hears it. I guess I had some fairytale idea about what habituation is--that the sound would not be noticeable once my brain got used to it. I took a break from the board and it really didn't make much difference--I continue to work and live my life but everyday is a roll of the dice. I don't let the noise stop me from what I need or want to do --and sometimes I do forget it or put it in the background--but life is not as joyful as life was before tinnitus. I'm sorry that I'm not all positivity but I just feel kind of down after hearing that my friend always hears it after 15 years.

Hi Kathi like you I am unsure of the habituation scenario I too am hoping that it will fade and be hardly noticeable but i really am not sure if that is the true way, i thought it was really where you can master the whole negativity and the brain gets bored listening so it fades to a more manageable less noticeable level we can only hope it is that I really don't know now ?

I noticed you have had your T pretty much the same time as me and I have to say the first 3-4 months were dreadful and just wishing life could be as it was just like you but I have found positivity with the help of this forum and with medical advances that there may be help one day I really sincerely hope so but I think I have my head in a better place now than where it was I try not to think too far ahead with this noise just the thought that one day I hope it will be gone.

Take care.

 

[carol kane]

Hi Kathi, i'm glad you're back as i missed you, I'm in Florida at the moment and i woke up early and as usual tinnitus was right by my side hissing like crazy ... i just sat down and broke my heart as like you my life isn't as enjoyable anymore, i always loved coming to my home over here, and have had some great times in this house, but all it is doing right now is making me so sad because the last time i was here i didn't have tinnitus, i was normal living a very normal and happy life, as i look around i'm saying to myself ... the last time i sat on that chair i didn't have t, the last time i slept in this bed i didn't have t, etc, etc, all our favourite bars and restaurants that we always went to before hold no pleasure for me anymore, all too loud!!!! Like you my only hope was Habituation and like you i held on to the thought that once that happens i'll get my life back, i now know it's not going to be the way i thought it was and my life will always revolve around t, none of my friends get it, not one of them i don't blame them for that, i wish i had someone in the same boat as me though ( not wishing this on any of them ) so in that respect i envy you !!! 15 yrs of this torment i can't think of anything worse, it won't be me, there's no way i'll be putting up with this crap for the next 15 yrs, so just like you Kathi today is a very bad and sad day, and i suppose every day from now on will be much the same, sorry to be so doom and gloom, but that's just how i feel !!! it would be nice to talk to you over the phone, if you send me your number i could call you and we could have a coffee as we chat ... where in the States are you ? it would be nice to hear a voice from someone who understands. Regards Carol ...

 

[Kathi]

Yes MattK, I've been through CBT and an anxiety workshop. It has helped me quite a bit. I've had 'good' days. I accept that this is my new life but sometimes waking up to the T everyday is hard to deal with. Usually it softens by the time I go to work--after showering, routine stuff. Other days it stays the same. I think I am habituating--getting used to it but I think I expected it to be better by now. It also seems to cycle now--going real low for a day and it is always disappointing when it is loud again the next day. I guess it's just ups and downs. Perhaps I'll get better by 18 months.

Kathi,

Before today, have you had good days? I certainly believe today is a "worse" day than other days, right? I think that is very important for you to recognize and admit to yourself. As for your friend, perhaps you guys can comfort each other. I mean, how many of us would love to have a close friend that understands what we are going through? I think that would be such a blessing... not that I would wish this upon one of my friends. But, you know what I mean. I mean, it's sort of like what we do on here; we're here to support each other and it feels more meaningful knowing that we know what it is like.

As for habituation, no one said it was easy. Dr. Nagler had to get help to habituate. I am determined to habituate... the unfortunate thing is, at this present time, I cannot afford to get help from my audiologist because she's pretty pricey and I've got a lot of debt.

But my CBT counselor helped me a lot in the past and I am going to be seeing him again on Monday. He has tinnitus and he's complete fine with it.

I can promise you this much Kathi: my dad has had tinnitus ever since his military days, and it wasn't until this year when I got mine that I even knew he had tinnitus. He told me it used to drive him crazy, but now he doesn't think about it anymore. So, I do know it really is possible to habituate. But that doesn't mean it will be easy.

Do you have counselors or audiologists who can help you?

 

[Kathi]

Thank you Teri. I think you are right but this morning seems to be another 'bad' day. Maybe I'm stressing and should keep busy--that always help.

Kathi,

T will become our "new normal". That is just the reality of it. I think T, like any other condition, we will have good days and bad days. That too, will become normal. You will be fine. Just chalk today up as "one of those days".

Hugs

 

[MattK]

Yes MattK, I've been through CBT and an anxiety workshop. It has helped me quite a bit. I've had 'good' days. I accept that this is my new life but sometimes waking up to the T everyday is hard to deal with. Usually it softens by the time I go to work--after showering, routine stuff. Other days it stays the same. I think I am habituating--getting used to it but I think I expected it to be better by now. It also seems to cycle now--going real low for a day and it is always disappointing when it is loud again the next day. I guess it's just ups and downs. Perhaps I'll get better by 18 months.

I know what you mean. I get frustrated when it's basically the first thing I hear in the morning. Mine is usually pretty quiet and get louder throughout the day. It's frustrating.

I'm glad cbt has helped you though.

 

[Marlene]

My ears are low today ,which in turn goes inwards ,so how do one get this T up ,? Try everything ,from room to room,go outside to see if pressure will bring it up .Frustrating yes . Hate this low T the most ,sets me on edge ,as it aggravates the balance .Cant change air pressure ,so I'm stuck all day like this ,anyone has this going on ,and know how to fix it .

 

[Martin69]

Hi Kathi, i'm glad you're back as i missed you, I'm in Florida at the moment and i woke up early and as usual tinnitus was right by my side hissing like crazy ... i just sat down and broke my heart as like you my life isn't as enjoyable anymore, i always loved coming to my home over here, and have had some great times in this house, but all it is doing right now is making me so sad because the last time i was here i didn't have tinnitus, i was normal living a very normal and happy life, as i look around i'm saying to myself ... the last time i sat on that chair i didn't have t, the last time i slept in this bed i didn't have t, etc, etc, all our favourite bars and restaurants that we always went to before hold no pleasure for me anymore, all too loud!!!! Like you my only hope was Habituation and like you i held on to the thought that once that happens i'll get my life back, i now know it's not going to be the way i thought it was and my life will always revolve around t, none of my friends get it, not one of them i don't blame them for that, i wish i had someone in the same boat as me though ( not wishing this on any of them ) so in that respect i envy you !!! 15 yrs of this torment i can't think of anything worse, it won't be me, there's no way i'll be putting up with this crap for the next 15 yrs, so just like you Kathi today is a very bad and sad day, and i suppose every day from now on will be much the same, sorry to be so doom and gloom, but that's just how i feel !!! it would be nice to talk to you over the phone, if you send me your number i could call you and we could have a coffee as we chat ... where in the States are you ? it would be nice to hear a voice from someone who understands. Regards Carol ...

Carol, I am wondering that you cannot go to bars or restaurants.
I like going to louder places where my T is partly covered. It doesn't spike. Of course I protect my hearing when it becomes too loud.
For me, it is more a thing of missing happiness not going much outside. I go through my life, do my job, but without much happiness and more with depression. I am sad.
By the way, you live in the UK. You can try getting into the Autifony trial.
All the best and hugs,
Martin

 

[Kathi]

My friend said that she does what she can to distract herself but hears it all the time. I didn't ask her about joy but she does not seem depressed or anxious. She works every day in an office and plays low music to help with the quietness of the environment. I told her that I use and iPod with classical music. She might try that.

What did your friend say about her life today even though she hears it all the time? Does she also not find life as joyful or does it no longer bother her much?

 

[Kathi]

Thank you @Freddie. I thought the same as you--that once my reaction was habituated, my brain would start to feel less threatened and it would push it out of my conscious awareness. Now, I really don't know.
I am getting very used to it but the cycling is making it more difficult. I appreciate the words of support and I'm feeling better tonight.

 

[Kathi]

I've know five people with tinnitus at my work. I forgot yesterday that two of them don't hear their tinnitus unless they listen for it! I was fixated on the one who is still bothered after so many years. I am not always sad or down--usually I try to keep a positive attitude but yesterday was just a bad day.

Please don't apologize for your feelings carol. We are all human and we are trying to deal with a lot. Sometimes I feel worn out just from getting through the day. Let's hope that we make more progress and keep putting one foot in front of the other until we reach habituation. If you really want to talk I will send you my number in a private message.

hugs to you: ((((carol))))

Hi Kathi, i'm glad you're back as i missed you, I'm in Florida at the moment and i woke up early and as usual tinnitus was right by my side hissing like crazy ... i just sat down and broke my heart as like you my life isn't as enjoyable anymore, i always loved coming to my home over here, and have had some great times in this house, but all it is doing right now is making me so sad because the last time i was here i didn't have tinnitus, i was normal living a very normal and happy life, as i look around i'm saying to myself ... the last time i sat on that chair i didn't have t, the last time i slept in this bed i didn't have t, etc, etc, all our favourite bars and restaurants that we always went to before hold no pleasure for me anymore, all too loud!!!! Like you my only hope was Habituation and like you i held on to the thought that once that happens i'll get my life back, i now know it's not going to be the way i thought it was and my life will always revolve around t, none of my friends get it, not one of them i don't blame them for that, i wish i had someone in the same boat as me though ( not wishing this on any of them ) so in that respect i envy you !!! 15 yrs of this torment i can't think of anything worse, it won't be me, there's no way i'll be putting up with this crap for the next 15 yrs, so just like you Kathi today is a very bad and sad day, and i suppose every day from now on will be much the same, sorry to be so doom and gloom, but that's just how i feel !!! it would be nice to talk to you over the phone, if you send me your number i could call you and we could have a coffee as we chat ... where in the States are you ? it would be nice to hear a voice from someone who understands. Regards Carol ...

 

[Kathi]

Thank you @billie48 --that is very good advice and today I am remembering my other friend with tinnitus--the one who has to listen for her noise to hear it. I'm feeling better today--more myself. I think that it also helps that we are at our campsite again with nature all around and many things to do this weekend.

 

[MattK]

Thank you @billie48 -- I'm feeling better today--more myself. I think that it also helps that we are at our campsite again with nature all around and many things to do this weekend.

Kathi, really let this moment sink in! What you have just admitted is that you're more yourself again, that's a better day, and you're enjoying life; T can't take that away from you. Really focus on this moment, and when you feel down again, remind yourself of this moment.

 

[carol kane]

I'm even ignored by my T family ??

 

[Karen]

Hi, @carol kane ,

Are you doing all right? I know what you mean about having a "down" day. I've been kind of like that myself today.

Lots of hugs and caring coming your way!

Karen

 

[carol kane]

Thanks Karen, i really appreciate you caring words. I hope you're having a better day, as for me i'm hanging on in there, but some days i'm really depressed and fed up ... sending hugs to you too, x

 

[Karen]

@carol kane,

Thanks back to you, Carol! Tinnitus is such an up-and-down condition; some days just start off wrong, don't they? I think we all feel nostalgic for the way we used to be before our tinnitus started, compared to the way things are now. However, we can only go forward in life from where we're at right now, at this point in time.

What seems to work best for me on the bad days is distraction. Try to find something -- anything -- you can do to distract yourself. Going outside works well for me. Yesterday, I spent a lot of time outside, walking the dog, then going for a long walk myself. That really helped! Today, I am doing better, and the sun is shining. Life just looks better!!

Best wishes for a better day for you, too!
Karen

 

[billie48]

Hi Carol, don't lose heart. Things will improve. Keep up the positive spirit. You are still within the first year with T. There will be setbacks causing you to lose heart. But it is just normal to have lots of setbacks within the first 2 years. Be mentally prepared for it. It will pass. Will pray for you and Kathi. Take care & God bless.

 

[carol kane]

Thank you Billie and Karen, i'm not quite a year in yet, i hope my attitude to this disorder changes, again all i worry about every day is that it will get louder, and that life will become impossible then. Im really trying to just accept it as part of me now, but long for the old me! thanks to you both for your words of encouragement, it really does help me to think in a positive light ... bless you both xx