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cherie
 #1 
Ok, So I know habituation takes time, but I just can"t accept this T, can't accept it might be permanent. I continue to beg and pray and cry for it to go away. I continue to hope it was caused by something fixable. I mean the whole thing on one hand makes sense: the fire alarm was the loudest noise I ever heard and I couldn't protect my ears. 1 1/2- 2 weeks later T starts.
On the other hand it doesn't make sense at all... why so long to start? why no high freq. hearing loss? Why a low frequency hum instead of the usual ringing?? Could I have low freq loss and they didn't catch  it because they test for high freq loss??
I spend a lot of time in places where I can hear the T which is basically almost anywhere in my house. You need to hear it to habituate.... I just feel like I will never be normal as long as this is there. I would prefer to just get maskers and be done with it. The problem is, when I went to the audiologist he said he can't get me a masker because the freq of my T is too low... which is ridiculous... TONs of sounds mask my T. He didn't even let me try the masker. Instead, he gave me a noise track to listen to on my ipod and said it would help my brain adjust, giving the impression he was trying to say it would lower the T, but then again everything is lost in translation here in France. I later went back to try to get a better match, as the audiologist didn't want to spend the time with me to find a match of my T.  His assistant did (77hertz) at he 2nd visit. the asst. then said to listen to the T match (huh?? a sound just like my t?) instead of making a noise track from it. Now I'm really confused. So OK, I can listen to the original noise track at just under the t to try to habituate ( but i just feel a head vibration then) or higher volume to mask it....cheaper than an in-ear masker. but its not really socially acceptable to talk to people with headphones on. So, I feel like I need to choose between masking and habituation....and I really don't want to choose either. I want to choose healthy ears again. And happy life again.

Maccy
 #2 
Cherie

I know you are in a really rough place at the moment. Dr Nagler is away this weekend and he's the only person qualified really to help answer your questions.

Take care
DrChip
 #3 
masking has proved not to be effective in most cases of tinnitus.  Masking COVERS the T so your system never habituates to the tinnitus. When the masking is taken away, the tinnitu usually returns.

masking is like giving a pain killer for an injury: it controls the symptoms but not the underlying cause.  cb
Rob_in_Denver
 #4 
cherie

There is no doubt you will have a happy life again. This takes time.

As Dr. Chip says, maskers just cover up the tinnitus, so your nervous system never gets the chance to start the habituation process.  Now how do you start that process?

Well, in a nutshell, you begin by simply occupying your time with other things -- things you like to do, whatever they are.  What you don't want to do is just sit in a room and obsess about the tinnitus.  Don't forget to eat all of the foods you enjoy as well.

And then you work on reducing the negative emotional response to the tinnitus that you are now feeling.  This is a gradual process.  It consists of dismissing or challenging the negative thoughts you have about it.  Now it is natural to have these thoughts, nothing wrong with having them.  But their effect is to keep your attention focused on the tinnitus by making it important -- important enough to think about.  And the negative thoughts -- such as "why do I have to suffer this incessant noise", "I will never again be happy", etc. -- cause negative emotions -- depression, anxiety, panic.  And you then have a negative reinforcement cycle that keeps the tinnitus at center stage in your awareness.

But if you challenge those negative thoughts with countermeasures like "this tinnitus is really bothersome now, but I won't always be bothered by it", or "a lot of people have tinnitus and manage to live happy and fulfilled lives", then the emotional reaction will begin to become attenuated over time.  The tinnitus will begin to be classified as unimportant by your nervous system, and in the end that will help it become less bothersome and -- Yes -- seem less loud and intrusive.  You can even get to the point where you find that you do not even notice it for huge stretches of time.  If you doubt this, I can understand.  I have been where you are.  But, believe me, better days are ahead.

And the third ingredient in overcoming tinnitus is time.  So live your life (and I know this will be difficult at first), work on reducing the negative thoughts and emotions, and let time pass. 

And one day you will wake up to sunshine and happiness.  The world will be beautiful again.  It may take a while, but you will get there.

Be well and best regards,

Rob in Denver

Maccy
 #5 
Bbec,

so the weekend was a good one eh? How was your T? I know you was really woried about it spiking etc? Did you just forget about it and have a good time?

cherie
 #6 
Thanks, Rob in Denver, your words are just what I need to hear.
I am trying to keep busy. I can't NOT be busy now, we are in the middle of moving. And yes, perhaps in the future I can be happy again. I just feel so cheated now, that I cant enjoy my baby's precious babyhood because this T has invaded my head. I try all day to not mask it and I can go for some time without it really causing too much anxiety, but it still bothers me that its there, annoys me, makes me sad, and depressed and cry all the time. Sometimes near the end of the day I am just fed up with it and need to put some music on to mask it because I just can't take any more. But it doesn't always make me feel better to mask it. I know it's still there. I can still feel fullness in my ears (does that ever go away? or is it there as long as t is there?) Isn't that some indication of hearing loss? I am still confused as to why they didn't find any.
I am also considering contacting the facility that set off their fire alarm test without warning. Apparently they warned the residents in  a newsletter, and if the residents are able to read it and remember it (they are all elderly with memory problems) they know not to pay attention to the alarm. Of course, my grandmother had no idea what was going on. And there was no warning for visitors. I know that taking legal action against them would probably amount to nothing, how can I prove the alarm caused the t? I can't really. But at least telling them what happend and asking them to warn others may make some sort of difference.


DrNagler
 #7 
Getting back to masking for a moment ...

I love the concept of masking tinnitus, and I must respectfully disagree with some of the opinions expressed in this thread.

Let me start by saying that in my opinion cherie's audiologist did her a profound disservice by telling her that a masker would be of no help to her.  The only way to know that is to try one - preferably one with a variety of frequency ranges.

There are numerous examples on-line.  If you have an iPhone 3G or an iTouch, for instance, you can download a terrific program from the App Store called "Ambiance" that has loads of different tracks - with names like white noise, pink noise, blue noise, brown noise, creek, fan, river, rain, shower, stream, etc.  The idea is to be able to replace the noxious tinnitus sound over which you have no control with a pleasant sound of your choosing over which you do have control.  And do it whenever you want to.

Moreover, even if you cannot totally mask your tinnitus, partial masking has advantages as well.  I wrote a piece several years ago on this subject called "Masking in the Millennium" - perhaps some here will find it of interest.

smn
Rob_in_Denver
 #8 
Quote:
Originally Posted by cherie
Thanks, Rob in Denver, your words are just what I need to hear.
I am trying to keep busy. I can't NOT be busy now, we are in the middle of moving. And yes, perhaps in the future I can be happy again. I just feel so cheated now, that I cant enjoy my baby's precious babyhood because this T has invaded my head. I try all day to not mask it and I can go for some time without it really causing too much anxiety, but it still bothers me that its there, annoys me, makes me sad, and depressed and cry all the time. Sometimes near the end of the day I am just fed up with it and need to put some music on to mask it because I just can't take any more. But it doesn't always make me feel better to mask it. I know it's still there. I can still feel fullness in my ears (does that ever go away? or is it there as long as t is there?) Isn't that some indication of hearing loss? I am still confused as to why they didn't find any.
I am also considering contacting the facility that set off their fire alarm test without warning. Apparently they warned the residents in  a newsletter, and if the residents are able to read it and remember it (they are all elderly with memory problems) they know not to pay attention to the alarm. Of course, my grandmother had no idea what was going on. And there was no warning for visitors. I know that taking legal action against them would probably amount to nothing, how can I prove the alarm caused the t? I can't really. But at least telling them what happend and asking them to warn others may make some sort of difference.




cherie

I know you are having a difficult time.  Check out Dr. Nagler's suggestions, as he thinks that masking or partial masking may help you.  He has more knowledge about this condition than anyone else I know. Masking did not do much for me, but everyone is different.  It can take the edge off even if it does not cover your tinnitus entirely. 

In any case, this is a very hard thing to deal with in the beginning, but it does over time get easier.  It is natural to have the reaction you are experiencing, because a constant, incessant noise is not natural.  But if you realize that the tinnitus is not harmful and you are able to reduce your negative reaction, over time you will learn to tune it out.  Don't despair -- things do get better.

Best regards,

Rob in Denver
DrNagler
 #9 
Denver posted [in part]:

Masking did not do much for me ...

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

I can identify - masking didn't do much for me either.  But as I look back, there was nothing much in the way of instruction, etc. to go along with the masking.  In other words, my audiologist did not explain to me what to expect and how to use the maskers to my best advantage.  It would be akin to a person's being given a pair of TRT devices without any directive counseling and then deciding after a few weeks that TRT wasn't doing much for him or her.

smn
CPW151
 #10 
cherie posts: "Ok, So I know habituation takes time, but I just can"t accept this T, can't accept it might be permanent. I continue to beg and pray and cry for it to go away. I continue to hope it was caused by something fixable. I mean the whole thing on one hand makes sense: the fire alarm was the loudest noise I ever heard and I couldn't protect my ears."
 
Cherie, when I read your post tonight it hit me very hard.  It brought back memories of almost three years ago when I sat up at night after night crying,  holding my ears, praying to God to take it away, how could I accept this as permanent and if it was how was I going to end it all.  You beg, your pray, you make deals with God and then you go spending money you don't have on "cures" that don't work.  For me it was, or I blamed in on facet joint injections without sedation.  Had to blame it on something.  It was my fault.  With my background I should have known better.  I know you won't believe it now but Dr. Nagler is right.  It is just a sound.  As I write this it is screaming but it is just a sound and more and more I don't notice it.  It's there but the busier I get doing the things I like and always did it seems to just start taking a back seat in my life.  You are surrounded on this board by people who truly are empathetic as we have all been where you are.   It does take time, it does take "doing" something and that differs for all of us.  Dr. Nagler, Dr. Chip, Rob have the best knowledge and direction that is available anywhere in the world.  It is a journey and one your will walk with us.  There will be ups and downs, good times and bad but there is success.  It's not easy but it does get easier.  Hang in there - it does get better!

CPW 
DrNagler
 #11 
Congrats, CPW.  You just made the "Words of Wisdom" thread!

smn
cherie
 #12 
Thanks CPW, that is a great reply. I don't know what I'd do without the positive encouragement here. You are all so kind to help. My goal for today is to not fear the future, because in the future it will be easier.
DrNagler
 #13 
Cherie posted [in part]:

My goal for today is to not fear the future, because in the future it will be easier.

...........

Great!

Now, what is one very basic, practical, and achievable thing that you do today that will help you reach your goal?

Anybody can respond - there are no wrong answers.  I have a specific thing in mind (from an old thread), but there are any number of excellent possibilities here.

smn
CPW151
 #14 
Dr. Nagler,

Thanks for the honor!

Cherie, Dr. Nagler asked what to do.  My advise for what it's worth is do exactly the things you have always done.  Even if they are loud.  I went back to my woodshop with power tools, with proper hearing protection of course which I have always done.  Took another step this weekend.  Bought a new (well, a late model used one anyway) and it has a good sound system with a CD player.  I have stayed away from listening to music in my car.  This weekend we went fishing and it was a six hour drive both ways.  I brought along a bunch of CD's that I used to like and listened to them all the way down and back.  Enjoyed them again!  So whatever you did before tinnitus, keep doing it.  Don't tell yourself it will make my tinnitus worse - it won't if the noise level is normal.  Do not give tinnitus any power over your life.  Do not let it change your life.  Don't give it the power it's begging to get.  The more you let it the more powerful it gets so put it in it's place.  My response to getting past it was getting rid of the "poor me", then getting angry and then the anger turned into contempt for it.  Slowly, very slowing it's getting the message.  So do the things you like to do with increased enthusiasm.

CPW
DrNagler
 #15 
CPW posted [in part]:

Don't tell yourself it will make my tinnitus worse - it won't if the noise level is normal.

...........

Now it's true that your tinnitus might (temporarily) "sound" worse - for any of a number of reasons on any given day.  But if you follow some simple guidelines*, it won't be because you have in some way damaged your auditory system.  So CPW is right - it won't actually make things worse.  And - if you had a very cooperative audiologist - you could actually check that out with "before" and "after" tinntus loudness matches.  Or you can take my word for it! 

smn

[* Use ear protection if you find yourself in an environment wherein you must raise your voice in order to be heard by a person standing next to you.]

cherie
 #16 
Ok, today, I just need somewhere to vent some thoughts. yesterday I did pretty good most of the day. Kept to my goal. But I crashed hard late at night. My baby is in the habit of staying up super late and sleeping late as I don't want to get out of bed in the mornings. Getting her to sleep is stressful. My milk supply runs out and she crys to nurse but there is nothing there. And its so quiet and my t just makes me cry and cry.
Waking up is better, the t is usually quieter, but still depressing because it is STILL there. I just don't know how to deal with something that doesn't heal. I still have hope it will go away or get quieter, but that hope is mixed with a lot of hopelessness these days.
And if I am not crying about the T, I cry about my family. My best friend in the whole world, my cousin, who I could always talk to about anything, has turned her back on me. In my darkest time of my life. I cried to her and she said nothing. nothing. She stopped calling me. I am alone here in France, husband always away, no friends in this country, and my best friend has rejected me. My brother too. He's a doctor. I just wanted to talk to him about the T, but he has absolutely NO empathy, NO patience. Says to go to a neurologist. (should I???) and when I tell him I can't speak french, I cant get my husband to call to make an appt. because he is too busy. He says well, if you don't want to do what I say, why call me? I just wanted to talk. I wasn't asking his advice. He has told other family members that I am weak for not handling this and he hates weak people.  I feel like I can't call my other friends in the states because I don't want to burden them with this and they couldn't possibly understand anyway. I just feel so alone. My mom is the only one I can talk to about this. And my husband a little bit, but not much.
My mom says that the reason my family is frustrated with me because I am not "following through" with what the doctors say ie taking the medications. And getting a CAT scan like my mom wants me to. (we asked the dr for one and the dr thinks its unnecessary)
Medications won't heal it. And right now, I am not ready to wean in order to take the medicines. So all because of this, my family turns their back on me.
So, anyway, I just needed to vent.


Murasaki53
 #17 
Cherie,
           I only have time to respond to a couple of points made in your last post as I am busy at work but a couple of things strike me:

1. Is it possible for you to check out the reason for your cousin's sudden silence? It could just be that they don't know what to say. Or perhaps there is another reason for their lack of communication.

2. Laurence Mckenna (a Clinical Psychologist with over 20 years experience in dealing with the management of tinnitus) told me recently that there is no connection between one's perceived strength of character and one's ability to handle tinnitus. In other words, 'strong' people can struggle to habituate it while 'weak' people can often progress more quickly.
DrNagler
 #18 
Laurence McKenna is one of the most knowledgeable people in the world when it comes to tinnitus and tinnitus-related distress.  I'm going to put his words that Murasaki has paraphrased (if not quoted directly) up in the "Words of Wisdom" thread to serve as a reminder to one and all that the fact that Joe might truly suffer from the exact same tinnitus that Bill finds to be but a minor inconvenience is not in any way due to some sort of weakness or character flaw on Joe's part.

smn
DrNagler
 #19 
Cherie posted:

Ok, today, I just need somewhere to vent some thoughts. yesterday I did pretty good most of the day. Kept to my goal. But I crashed hard late at night. My baby is in the habit of staying up super late and sleeping late as I don't want to get out of bed in the mornings. Getting her to sleep is stressful. My milk supply runs out and she crys to nurse but there is nothing there. And its so quiet and my t just makes me cry and cry.
Waking up is better, the t is usually quieter, but still depressing because it is STILL there. I just don't know how to deal with something that doesn't heal. I still have hope it will go away or get quieter, but that hope is mixed with a lot of hopelessness these days.
And if I am not crying about the T, I cry about my family. My best friend in the whole world, my cousin, who I could always talk to about anything, has turned her back on me. In my darkest time of my life. I cried to her and she said nothing. nothing. She stopped calling me. I am alone here in France, husband always away, no friends in this country, and my best friend has rejected me. My brother too. He's a doctor. I just wanted to talk to him about the T, but he has absolutely NO empathy, NO patience. Says to go to a neurologist. (should I???) and when I tell him I can't speak french, I cant get my husband to call to make an appt. because he is too busy. He says well, if you don't want to do what I say, why call me? I just wanted to talk. I wasn't asking his advice. He has told other family members that I am weak for not handling this and he hates weak people.  I feel like I can't call my other friends in the states because I don't want to burden them with this and they couldn't possibly understand anyway. I just feel so alone. My mom is the only one I can talk to about this. And my husband a little bit, but not much.
My mom says that the reason my family is frustrated with me because I am not "following through" with what the doctors say ie taking the medications. And getting a CAT scan like my mom wants me to. (we asked the dr for one and the dr thinks its unnecessary)
Medications won't heal it. And right now, I am not ready to wean in order to take the medicines. So all because of this, my family turns their back on me.
So, anyway, I just needed to vent.


.........

I'm glad that you feel comfortable venting here, because we all understand what you are going through.

Now, cherie, please look back to the question I raised in Post #15 in this thread (and CPW's excellent response in Post #16).  What are some basic, practical, and achievable things that you do today that will help you reach your goal?

smn


cherie
 #20 
Ok, I asked my cousin why I would feel she's turning her back on me.
She basically said:
1) I made a comment that I would rather be in pain than have this. As she has constant pain(never told me) she felt insulted. and said that I wouldn't rather have pain. well, she doesn't know. I was trying to make a comparison, not insult her.
2) Said she wasn't going to give me any pity. I said I wasn't asking for pity, only empathy and I feel there is a big difference. Anyway, she felt I was just sitting around feeling sorry for myself.
And yes, I do a lot of feeling sorry for myself, but I also do a lot to help myself which I told her the things I do. This is just severely affecting me, and it's not going to happen over night. She said she'd listen, but if that means offering me a silent listener then she goes on to tell me about her cat and not offering support, no thank you, I have people here on the board that truely understand and offer me useful advice and positive thoughts.
Anyway, situation not resolved. I only feel worse and alone.
Now I guess the only way to have my family all of them, not be frustrated with me is to do everything they say:
1) Take a decongestant ....umm I had a sinus xray, no problems there.
2) Get a CAT scan or MRI
3) See a neurologist...tried to call today, their closed.

As for making myself feel better, I don't know. I need to spend less time obsessing about the t. Having a hard time doing that. I need to not sit in quiet rooms as much.  I am trying to focus on other things when I do in order to habituate. It's already 7pm here in France. I need to get to sleep early, and get baby to bed early. I need to finish packing. Just keeping busy I guess Dr Nagler. I am also trying to contact by phone the dr that does TRT here in France. Maybe I should not be on the computer so much, but right now, I'm really feeling like I need a lot of help just to get through the day. It will be better next week. I will be in Paris, new apartment to settle into and lots of people to meet. I also will be with my husband in the evenings so I won't be alone so much.  I will just focus on how next week will be better.
 


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