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Old 01-24-2007, 01:03 AM   #1
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For Gloria - how I coped with tinnitus

Hey Gloria,

I just saw your post asking how I habituated to tinnitus. A while back a member called Ruth asked me about this too. She was v. distressed having just got T, so I wrote something for her which I have posted again below. She said it had really helped her, it may be helpful to you, and if it's not, obviously just ignore it. I know you're considering TRT, which I understand can be v. helpful, so this certainly isn't an attempt to dissuade you from doing that. T is a personal battle and how people cope with it comes in many forms. This is just an outline of how I see T and how I coped with mine.

I said Iíd have a go at explaining the thought processes that allowed me to habituate to tinnitus, in the hope that it might help you. What took me from being terribly distressed to being able to cope with it. Before I do, to avoid offending anyone else who might read this, I want to say a couple of things. Firstly, for the sake of brevity and clarity I wonít pepper this piece of writing with Ďin my opinion, or Ďthis is what works for me, another way of coping may work better for youí etcÖ It does, however, go without saying that there is no one way to deal with tinnitus, the important thing is to be able to lead a happy life with it, how you get there is a matter for each individual. That said, this way of thinking has worked for me, so I am writing it in the belief that there is a good chance it might help others. Secondly I will stress again that my tinnitus is not deafening. It is a high pitched ringing in both ears, very audible at night, and, if audible during the day, it doesnít block out other sound but exists alongside it. I have never walked in the shoes of someone who has deafening tinnitus, so would not presume to be able to talk about how to cope with it.

When I first got the tinnitus, age ten, (now in my thirties) a high pitched ringing in both ears, I was taken to the hospital for the routine visit to an ENT. The specialist laid it on the line Ė he said he couldnít do anything and that Iíd have to learn to live with it. I remember this v. well, which probably means it was a shock. I was young, so believed what a doctor said was Ďthe truth,í (learnt a lot since then, lol.) I was also left with the impression it would definitely never go (not always true) and that there were no therapies or drugs that might help, also not true. It never occurred to me to question what he said, think that it might go, or hope for relief from it. In retrospect what happened seems quite brutal, but I actually think by removing all hope that specialist did me a favour and made me habituate far quicker than if Iíd been led to believe there was any. With an illness like vestibular neuritis, for example, hope is a critical component of getting well, it makes people seek help, pursue vestibular rehabilitation therapy and sets them on the road to recovery. With tinnitus I think the opposite is true, a daily diet of hope that it will go is the enemy of habituation.

Why? Firstly because whether the T stays or goes is entirely random. It could go tomorrow, it could go in 5 yrs, or never. Coping with T by only deriving relief from the possibility of its cessation, could ensure you are miserable for a very long time. Secondly, by hoping the T will go it means you are angry, anxious and upset that it is there. Obviously these feelings when it first happens are totally natural, but, if they continue, you are, for as long as the T chooses to hang around, trapped in a futile battle. In as much as the T is a part of you, itís like being angry that you have an arm. Also, anger and anxiety draw attention to the T, make you dwell on it, and even if this doesnít actually make it louder, it can make it seem louder. Imagine a close friend, how much do you think about them during the any day? Probably not very much, the odd pleasant thought perhaps. Now imagine youíve had a blazing, unresolved row with them. How much would you think about them now? Probably a lot. Possibly an intrusive amount as you struggle with how furious you are with them. I believe that the misery T causes is not so much the noise itself but your feelings about the noise, the grief that youíve lost Ďsilenceí, the frantic anxiety about whether it will go, and then the fury that itís still there. In order to habituate to T you donít necessarily need to make it your friend, but it does need to at least become an aquaintance you get along with passably. And for that you have to let the anger about it go and accept it.

How do you accept an irritating noise in your ears? First of all by understanding that hardly anyone ever really hears silence. Even in supposed silence we are constantly hearing things, the wind, a radiator, noise from the street outside etc.ÖOk, so these noises are pleasant, but people are constantly habituating to unpleasant noises. When I first bought my flat I realised that the stupidly loud hum from the fridge was audible in every room. I got irritated about it, dwelt on it, lay in bed at night unable to sleep because of it. Eventually I tired of being angry, decided it was too expensive to replace, so Iíd just have to get used to it. Shortly after I made this decision I stopped noticing the hum. Ok, you might say, but I could get away from the fridge, which is why it was easier to let the anger about it go, but the fact remains the fridge is still there. I work at home and itís audible day and night, but itís become background noise, and for the most part Iím unaware of it. A friend of mine lives in a house that backs on to a railway track, at first it drove her mad and she thought sheíd made a mistake buying it. Now she doesnít even notice the trains.

After that initial consultation with the specialist, for over 20 yrs the tinnitus never bothered me. Now that itís got considerably louder I would be lying if I said I didnít sometimes have to take a few minutes to re habituate to it, but, because of all the reasons I have outlined above, it is only ever a few minutes. On the few occasions it keeps me awake, I still think that itís not the T or its new louder state that are causing the sleeplessness, but rather the anxious thoughts I enter in to about it - Why is it getting louder? Does this mark a shift in my illness? (I have a vestibular disorder as well as the tinnitus) Will it suddenly become deafening? which make me focus on it, cause it to become more audible to me, and make it more irritating than it actually needs to be.

Although Iím guessing many other people with T will feel differently about this, personally I never attempt to mask the tinnitus other than sometimes leaving a window open in summer so I can hear the noise outside. Masking it would reinforce the notion that it is a bad thing to be avoided. I totally understand preferring to listen to something more pleasant than tinnitus, but personally I'd find it a drag being dependant on an external noise to sleepÖ. I donít need to mask the sound of the radiators in my house in winter or, indeed, my noisy fridge, so why the T? Itís just another background noise, alongside lots of other background noise, which, because I have accepted it is there, doesnít grab my attention. A noise cannot harm you, the idea that you have a noise in your ears therefore it must be intolerable, the endless spiralling thoughts about will it, wonít it go, and the fury and rage when itís still there, can. They will cause you to constantly focus on the noise, lead to misery, and ultimately, when the anger has no place to go, anxiety and/or depression.

I know how difficult this is, if this had just happened to me I would be struggling with it. Iíve had over 20 yrs to learn how to manage tinnitus. I canít promise that thinking about tinnitus in this way will work for you, we are all different and it may be you will find a way of coping that suits you better. Please also understand I am not saying Ďyou ought to have accepted it, why arenít you coping,í this has happened so recently for you, you are still shocked and reeling, habituation takes time, and understanding from others as you go through what is a difficult process is critical. But I do believe you will not always feel as you do now.
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Old 01-24-2007, 05:05 AM   #2
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Re: For Gloria - how I coped with tinnitus

Sorry to bump in here Hbep,
TBut that was a great read. I came down with tinnitus about 2 months before my first BPPV attack (which was 2 years after my labs infection). I went through many of the feelings you wrote about. I wish I had this peice to read then, what a help. I think you have summed up just about anything that happens to us and how fighting it and wishing it wasn't there just causes us anger. That anger does not make it go away faster and can cause us even more distress. It doesn't mean we can't explore things that will help us to heal, and it doesn't mean we are accepting that we are going to have something for the rest of our lives...but by staying positive, being able to cope and live with it, we can get on with life and heal faster.
I admire you courage and your ability to cope with something like T. I know how I felt when I had it, mine was a pulsitile noise, almost a heartbeat in my head.
Thankyou for writing that out again, it should be saved in the archives!!! I know it will help Gloria and all other tinnitus sufferes.
FC

 
Old 01-24-2007, 07:20 AM   #3
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Re: For Gloria - how I coped with tinnitus

Wow!!! Hbep! Thank you so much for taking so much time to answer my question. I know that must have been difficult to dwell on it while responding to me.

What you said makes so much sense; I suppose it is just the hard part of making oneself believe it and practice it. I totally agree with what you said about the masking. It only covers up the noise temporarily and doesn't help when you are faced with quiet times. I have started TRT. Actually, you took the words right out of my therapist mouth in that he also does not use total masking in his therapy for the same reasons you explained. He has me practicing listening to sounds (tv, radio, etc.) at a volume just slightly below my tinnitus. I am to concentrate/focus on the other sound not my tinnitus and when the tinnitus becomes my focus point I am to tell it NO and go back to concentrating on the other sounds. He is trying to train my brain not to listen for the tinnitus. He hopes to eventually get me to get up in the morning and not go through a check list of my symptoms daily. I would love to get that feeling back. The feeling of getting up in the morning and not thinking about this crap and how I feel.

I found your words very enlightening and am going to print it out for when I need that extra daily boost. It was easier to comprehend coming from someone who experiences what I experience daily rather than someone who doesn't have any clue what it is like telling me to just ignore it as my reaction to it makes it worse. How would they Know? But you know what it is like so therefore, I can believe what you say.


On another note, I have read and reread the Heal your Headache book and it has helped me tremendously over the last 2 weeks. Headaches every day except 2 days have been very manageable to almost no headache at all. I have an appointment with a migraine specialist the end of next month to talk to him about the possibility of migraine playing a role in my condition. I also have found that Dr. Buchholz is still in practice and may actually try and get an appointment with him as he is only about 4 1/2 hours from me if I don't get anywhere with the headache specialist.

Hbep, you have been a great help to me. Thank you so much for always answering my questions and providing so much support and information to me.

Gloria


P.S. - One last thing, I'm having a hard time understanding the difference between beta blockers and calcium channel blockers. I do not want to try an SSRI's for migraine assuming the headache specialist will agree that there is a migraine factor playing a role in my condition. How do the two types of meds work to control the migraine? I am aware of the different side effects associated with the different migraine meds but just don't understand the difference between these two classes of drugs. I was also glad to read on your other post that you have been doing better lately.

Last edited by gloria2936; 01-24-2007 at 07:33 AM.

 
Old 01-24-2007, 03:31 PM   #4
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Re: For Gloria - how I coped with tinnitus

Hey Gang,

>>>it should be saved in the archives!!!

Done!

Great write up hbep. While I don't have what I would call problematic tinnitus I still do have some at a low level (caused by rock concerts and dance parties years ago) and totally agree with all of what you said re habituation. It's funny because I didn't even realise I had tinnitus until I saw a special on it on 60 Minutes about 10 years ago. I suddenly realised that the nosie I heard in my ears at night was not normal. And guess what happened? It became 10X louder immediately because it was now the focus of my attention. And when exams came that month it was worse again. Of course, eventually I got bored with listening to it and my anxiety of exams passed etc and I no longer noticed it until VN arrived in 2003. Then there was another 4 months of cranked up noise which just disappeared one day. Anyhow, I doubt what I have going on is anywhere near what you two are learning to ignore. Just thought I'd throw in my two cents re the increase in volume by directing my attention on it.

>>>I'm having a hard time understanding the difference between beta blockers and calcium channel blockers.

Beta blockers
: block the action of endogenous catecholamines, epinephrine (adrenaline) and norepinephrine (noradrenaline) in particular, on β-adrenergic receptors, part of the sympathetic nervous system which act on the "fight or flight" response.

Calcium Channel Blockers
: Calcium channel blockers work by blocking voltage-sensitive calcium channels in the heart and in the blood vessels. This prevents calcium levels from increasing as much in the cells when stimulated, leading to less contraction. This decreases total peripheral resistance by dilating the blood vessels, and decreases cardiac output by lowering the force of contraction. Because resistance and output drop, so does blood pressure.

Does that make sense Gloria?

Cheers.....Scott

 
Old 01-24-2007, 05:49 PM   #5
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Re: For Gloria - how I coped with tinnitus

Thanks Scott.....you described it much better, but Yikes!!! Maybe I shouldn't have asked, now I'm scared of what they do to your body.

Well, I don't care.....I surely can't live like this, right? I'm willing to try anything at this point and that is coming from someone who had SJS (Steven-Johnson Syndrome) from an antibiotic.

Ok....I'm not allowed to analyze this stuff anymore....I'm driving myself nuts. I'll just wait until my appointment next month. What is another month after 24 months?

Thanks Scott....Hope you are resting comfortably tonight.....Gloria

 
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