The Feeling of No Escape

[Markku]

I had a horrifying experience last night.

I put my head on my comfy pillow and was pretty tired after a day out.

For reasons unknown I started listening to my tinnitus. I immediately thought that I must have two different pitches in each of my ears. I probably have, one is a bit higher in frequency than the other.

Last night the noise sounded very loud. As if the screeching had penetrated my brain.

For a minute or two I thought I was going insane. I felt completely losing control. I had a quick thought that I can't switch this off, I'm going to live with this for the rest of my life. I remembered the time when I could hear silence. The feeling of no escape was scary. I don't remember having that kind of response to tinnitus for a long, long while, if ever. That made things so bad that I felt like a panic attack of sorts was about to start, for a short while I had trouble catching my breath.

Then I started concentrating on my breathing instead of the tinnitus, and that helped. Quite soon thereafter I fell asleep.

Just wanted to vent now. Today is a new day and after all I have soon lived with this for 3 years so this was just a hiccup and I'm grateful I've been able to habituate so well that these kind of experiences for me are rare. However, this relatively short experience made me even more understanding and compassionate towards those who are having feelings like this on a daily basis.

Thank goodness habituation takes care of most of us sooner or later. But for those whose tinnitus seem to occupy their minds for years on end makes me wonder how they could be helped. It must be very hard if tinnitus has control of one's mind 24/7.


Bless you all. Try and have a relaxing weekend. I myself am putting on some tunes right now.

 

[mock turtle]

Markku

isnt it terrible how we do better for awhile and then things get out of control..keeps us worried

ive experienced what you talked about above, more than once, and it always happens at night or early in the morning

i keep a bottle of benzos close by...knowing its there even if i dont use it, keeps me believing i have some control

sorry you hit an ugly ugly situation

hang in there

mt

 

[Louise]

I definitely identify with what happened to you Markku. Thanks for posting it, it sort of helps to know other people have that type of experience too.

 

[click]

I completely empathise Markku. What you have described is what I have called my 'moments'. I still get them and they are terrifying. It really is the thought that 'it will be with me forever' that's panic provoking. That's why I'm so glad I believe that it will go away eventually - it's my ray of hope and I really need it.

Thanks for sharing your 'moment' Markku.

Jane

 

[Paul D]

I too can relate. Am I that weak? Is this the sign of worse things to come? There MUST be something I haven't thought of or discovered to at least lessen the intensity and allow me to face the day, or at least get to sleep. Breathing, stay calm, relax, minimize the severity in my mind when contrasted to the greater sceme of things...yes, at times that's all there is to do. Tomorrow will be better. If not tomorrow, then at least in a few days. I know some days are oh so much better than others. I look to those.

Thanks for posting, Markku. Reading your comments on various threads for a while, I had mistakenly concluded that you somehow were always able to remain on an even keel and keep the T in check.

 

[Fish]

We all have bad days from time to time Markku. Thankfully there is habituation and the bad days happen less and less often.

I find it really amusing that we sometimes spend the whole day working, shopping and doing other activities without even thinking of tinnitus. But once we stay in a quiet room and start listening for it, the tinnitus appears to be unbearably loud. How is this possible?

 

[Louise]

There's something wrong with me then because I think about it all the time even when shopping or doing something else. Dont even need to be in a quiet room and listen for it to hear it either

 

[Paul D]

Mine's always present too, Louise. Has been for a year or more. Even today, one of the better ones in comparison to the last week, where the noise is mostly in the background, it's still there. The only time I get a total respite is in a situation demanding 100% concentration and attention. Lasts for a few hours at the most.

 

[Fish]

There's something wrong with me then because I think about it all the time even when shopping or doing something else. Dont even need to be in a quiet room and listen for it to hear it either

I am sorry to hear that Louise, my sympathies. But you too do have some better days I am sure!

I am just trying my best to habituate and trying to live a normal life despite the noise. The best thing one can do. I guess I was also lucky to find some treatments that made my tinnitus lower in volume.

Let me explain myself - it is not that I am 100% tinnitus free. I do hear it often throughout the day. But my reaction has changed - I usually think "yep it is still there, too bad". Then I just carry on with everyday activities and forget about T again.

But there are also situations like Markku's - listening to your T is never pleasant and at those times it feels very loud and unbearable...

 

[DezDog]

Really sorry to hear that Markku. I have moments too, usually when trying to sleep, but not of that intensity. Then again, I'm still on ADs. I don't know whether to come off them.

Louise, are you practising any CBT techniques?

 

[Louise]

Mine's always present too, Louise. Has been for a year or more. Even today, one of the better ones in comparison to the last week, where the noise is mostly in the background, it's still there. The only time I get a total respite is in a situation demanding 100% concentration and attention. Lasts for a few hours at the most.

Thanks for posting Paul. It helps to know that there's someone else who hears it all the time. Im not saying other people wouldnt had they not got the knack of ignoring it somehow. I didnt used to be able to hear it all the time though until lately.

The worst is probably when I try to settle down for the evening to watch TV. Its there, spoiling it. It must be me not concentrating on the TV enough or something but when the TV pgm is dialogue or anythnig with quiet bits in then there it is.

 

[Louise]

I am sorry to hear that Louise, my sympathies. But you too do have some better days I am sure!

I am just trying my best to habituate and trying to live a normal life despite the noise. The best thing one can do. I guess I was also lucky to find some treatments that made my tinnitus lower in volume.

Let me explain myself - it is not that I am 100% tinnitus free. I do hear it often throughout the day. But my reaction has changed - I usually think "yep it is still there, too bad". Then I just carry on with everyday activities and forget about T again.

But there are also situations like Markku's - listening to your T is never pleasant and at those times it feels very loud and unbearable...

I dont really have good days, not unless Ive taken Clonazepam and thats because its quietened the noise. Maybe I've not realised how to ignore it, I dont know.

 

[Louise]

Really sorry to hear that Markku. I have moments too, usually when trying to sleep, but not of that intensity. Then again, I'm still on ADs. I don't know whether to come off them.

Louise, are you practising any CBT techniques?

No Dez. Im actually seeing a counsellor who is supposed to be doing CBT but all Ive got so far after 4 sessions is that I have to be 'cognitive'. Just not getting anywhere with it. If you can tell me some CBT techniques Id be grateful.

 

[DezDog]

I think by "being cognitive", I think they mean be aware of your thoughts, and the effect they're having on you. Become an observer of the thoughts as they arrive, critique them. There are several personas you can assume, but one of them is Journalist. Another one is Counsellor.

For example, you think "I can't take this any more, I'm going insane". Instead of just letting that thought happen to you, and letting its effects bring you out in yet another cold sweat, you say to yourself, as if it was your friend/counsellor talking to you: "Today isn't any different to yesterday, and you got through yesterday. And the day before that. You know that you aren't really going to go insane." The internal dialogue is what you'd say to someone else on this forum to reassure them; in fact, imagine that your thoughts are forum posts from someone else on the forum, not you. How would you respond to those posts? How would you help that person? You don't lie to them, you don't say meaningless things, you try really hard to find a meaningful positive response. (I think it's odd how we can do this for others but not for ourselves).

So - when you apply that same effort to your own thoughts, that's CBT. You're kind of questioning the origin of the negativity, finding logical inconsistencies in your thought processes and examining them.

This site did lots to help me understand the insidious nature of our thoughts, even thoughts that I thought were actually "normal" and harmless show up in the exercises: https://moodgym.anu.edu.au/welcome. I think I've linked it before.

ADs helped me get on top of my depressive thoughts, but my own mental approach was to realize that gaining my old routine back would help me feel strong and diminish the "importance" of the T. In the early days I took note of every time I had been unaware of the T (like "I didn't notice my T at all while talking to X"). It seems that when you do this you positively reinforce the idea that you can ignore it, however short the duration is.

That's all I've got. I hope it helps.

 

[Louise]

Thanks DD, I appreciate this.

 

[click]

Back in the early months I used a couple of techniques.

One was that I told people not to say things like,

'how awful' or
'god I couldn't imagine what it must be like to have a noise in your head that you can never escape from'

because I found it made me feel bad. It didn't make the noise worse but I was really feeling bad and I didn't want to be made to feel depressed as well.

Even now I tell them not to - when a friend begins to be sympathetic I stop them... because it make it worse for me.

I've also made myself believe that tinnitus isn't a bad thing to get in comparison to some other things.

This one was hard because I felt as though I'd rather have anything wrong with me other than T. I believed that a terminal disease would be better than what I was going through. I wanted to die anyway so how could it be worse?

It took time but gradually I made myself believe that tinnitius wasn't all that bad. Hey - it was just a noise. I had ear pain (a bit like a red hot needle inside my ear) but it wasn't all the time - some people had continuous pain with their illnesses - so T wasn't as bad.

It was for self preservation... it was to avoid having to resort to drugs... and if you'd said this to me right at the start I'd have laughed because I wouldn't have thought it possible that I would be able to persuade myself that 'it wasn't that bad' - I'd have said that the fact that I knew that I was doing it.. that I was aware that I was trying to kid myself.. would have meant that it wasn't possible. But it was.

It didn't work all the time - it still doesn't. But for the majority of the time I now believe that T 'isn't that bad'.

I really hope that it calms down for you Louise. x

 

[Paul D]

DezDog - Thanks for posting the CBT explanation and examples. I can really see how this might apply to living with the condition and keep the "bad days" at bay. I'm certainly going to look into it, as it's the most practical course of action for me at the moment.

And Click - you remind me of what's been working for me on most days. Thanks! Yeah, there are still days I can't get past the constant, shrill sound in my head, but lately even just accepting that OK, this is a bad day, or series of days, helps me minimize the affects of other days when it's still at high but bearable levels. And just coming through a couple "good days," I surely appreciate those moments, short or long.

 

[Markku]

Thanks for posting, Markku. Reading your comments on various threads for a while, I had mistakenly concluded that you somehow were always able to remain on an even keel and keep the T in check.

Indeed I've been fortunate that even in the beginning I managed it quite well (when compared with some others who seem to go through very rough times for longer). I think for some reason my mind was pretty set on it getting fixed by itself, which helped at the time. I did have a few of those fight-or-flight responses, but I overcame them sort of easily.

I created Tinnitus Talk about one year after my ringing started, and I guess at that point I had started to understand I wasn't going to get that spontaneous self-fix I had hoped for (I tried to increase my chances with the help of several supplements, even substances classified as drugs in Finland, like piracetam. Almost anything went down my throat that had some positive reviews/research on the 'net).

Soon at the 3-year mark it's even more certain that this is a condition not going away anytime soon. I hear the ringing above the music I'm listening to right now, and while it doesn't ruin everything in my life, not at all, it still is sometimes hard to truly accept that I have no control over it and that it - without a question - keeps on diminishing the quality of life. I'd be lying if I said that my quality of life is nowadays the same as it was pre-tinnitus. I don't think that actively, I guess it's some sort of a coping mechanism not to think about it, but oh dear what I'd do to be able to find that off switch.

I guess it's even possible that during the two years TT has been up I've been subconsciously trying to be an "example", sort of - like "tinnitus is not the end of the world". Which might have caused me to post more at times when I've coped better, and maybe sometimes avoid posting when feeling anxious, stressed and hopeless. This hasn't happened on purpose, and I just now thought of this as maybe one explanation now that you mentioned how "stable I've seemed to be" .

I do acknowledge that my tinnitus isn't of the worst kind. I genuinely believe there are varying levels and types of tinnitus and not everything can be attributed to psychological differences. There are physical differences, period.

But I 100% think most of us will habituate sooner or later. And gain back some of that quality of life and happiness everybody wants.

It's worth remembering, too, that tinnitus is a very common thing, and most don't visit any tinnitus support forums, many don't even go to a doctor, or if they go it's a one time thing and then they are able to continue their lives.

...which in essence, I think, means that all of us here on the forums are having it worse than the "general tinnitus population". We are folks who notice it more, are distressed by it more, may have it physically worse than many others, and might even be psychologically the types who worry more, like to control things, and maybe even enjoyed silence more than some.


Thank you all for your replies. They meant a lot.

 

[Louise]

Back in the early months I used a couple of techniques.

One was that I told people not to say things like,

'how awful' or
'god I couldn't imagine what it must be like to have a noise in your head that you can never escape from'

because I found it made me feel bad. It didn't make the noise worse but I was really feeling bad and I didn't want to be made to feel depressed as well.

Even now I tell them not to - when a friend begins to be sympathetic I stop them... because it make it worse for me.

I've also made myself believe that tinnitus isn't a bad thing to get in comparison to some other things.

This one was hard because I felt as though I'd rather have anything wrong with me other than T. I believed that a terminal disease would be better than what I was going through. I wanted to die anyway so how could it be worse?

It took time but gradually I made myself believe that tinnitius wasn't all that bad. Hey - it was just a noise. I had ear pain (a bit like a red hot needle inside my ear) but it wasn't all the time - some people had continuous pain with their illnesses - so T wasn't as bad.

It was for self preservation... it was to avoid having to resort to drugs... and if you'd said this to me right at the start I'd have laughed because I wouldn't have thought it possible that I would be able to persuade myself that 'it wasn't that bad' - I'd have said that the fact that I knew that I was doing it.. that I was aware that I was trying to kid myself.. would have meant that it wasn't possible. But it was.

It didn't work all the time - it still doesn't. But for the majority of the time I now believe that T 'isn't that bad'.

I really hope that it calms down for you Louise. x

Hi Jane, thanks for this. I know what you mean about friends' sympathy not helping. The friend Im seeing most right now keeps saying 'Poor Lou, what a life for you' and it really does not help. We may be out having a bite (I do this to get out of the house) and I'm reasonably ok and he'll come out with that. I must tell him to stop as you have done with your friends.

You've done well to control your mind like this and I know it does help. I also have had thoughts about what could be worse? I was thinking the other day that if I was offered would I trade a leg to be free of T!! I couldnt come up with the answer.

The worst thing for me has been is getting worse. I have so much FEAR. The fear is the worst part.

x

 

[Louise]

Soon at the 3-year mark it's even more certain that this is a condition not going away anytime soon. I hear the ringing above the music I'm listening to right now, and while it doesn't ruin everything in my life, not at all, it still is sometimes hard to truly accept that I have no control over it and that it - without a question - keeps on diminishing the quality of life. I'd be lying if I said that my quality of life is nowadays the same as it was pre-tinnitus. I don't think that actively, I guess it's some sort of a coping mechanism not to think about it, but oh dear what I'd do to be able to find that off switch.

It helps to know that the ones on here who are 'strong' have feelings like this Markku. Thanks for being so open and for being an example

 

[AttackingTinnitus]

Hey guys, I post the same thing all the time just in case someone didn't see my post. I always mention, and I am sure most of you know because like me, you researched the heck out of Tinnitus. But there are 2 ways to get T. Ear trauma and Neck trauma. Mine is through Neck trauma. Neck trauma makes T worse than ear trauma.

Just in case no one knows about this, I have a big bone spur by my upper spine and the Occipital Nerves run from the base of your neck up your head on each side. In the past, when I would press on the right side of my head it felt bruised. I used to think it was because I wear pony tails alot. Well that's not the reason. I found out I have Occipital Neuralgia. The Dr. thinks possibly the bone spur could be pressing on the nerve. Sometimes it feels like an ice pick is poking me in my head on the right side at the top. I will also get migraines. It felt like the base of my neck hurt and the pain traveled up my head all the way to behind my eye. I felt like I wanted to pull my eyeball out, it hurt so much.

When my pain mgmt. Dr. gave me injections in my neck and in the Occipital nerve, my T temporarily spiked for a day then afterwards it was completely gone. It's been almost 2 months being gone then one day at the gym, I bent over and I felt this sharp pain in my head on the right side. After that, my T came back, but NO WHERE as loud as it was when I originally got this.

So, if you think you might have T because of your neck and you ruled out everything else, then try a pain mgmt dr. My ENT has me on a diuretic to make sure I reduce the amount of sodium I have in my ears. That helped because I feel I don't constantly blow my nose as much.

Hope this info. helps.

Julia

 

[jazz]

It helps to know that the ones on here who are 'strong' have feelings like this Markku. Thanks for being so open and for being an example

This is truly a supportive forum, and that is what makes it great!

I also agree with Markku that we all feel our lives are just not the same--there is a diminishment. I so miss not listening to music and just being carefree to do whatever I want without worrying that my T will get worse. Just last week I left a wedding because the music was very loud--even though I was wearing ear plugs.

I also agree that it's critical to maintain a positive attitude. It sounds like many of us do our own CBT, telling ourselves "It isn't that bad." "I can deal with this." Until medicine discovers a cure, all we have is a positive attitude to ameliorate our suffering. But, as we all know, we are stronger than this tinnitus, and thus will get through it!

 

[Sgguy46]

For a minute or two I thought I was going insane. I felt completely losing control. I had a quick thought that I can't switch this off, I'm going to live with this for the rest of my life. I remembered the time when I could hear silence. The feeling of no escape was scary. I don't remember having that kind of response to tinnitus for a long, long while, if ever. That made things so bad that I felt like a panic attack of sorts was about to start, for a short while I had trouble catching my breath.

this is happening to me now.

 

[undecided]

Alprazolam.

 

[Mentos]

@Markku I know the thread is pretty old but what you described is pretty much the same I experience almost everyday at least to some extent. Even though my T is mild and I'm already 2 years in and in terms of dayily activities I do all the things I would be doing without T, my mind is unfortunately occupied almost 24/7 with T, even if i na situation when I don't hear it I remember it's there and sooner or later I'll have to cope with it. It's quite exhausting mentally, it's very difficult to shift my attention from T to other stuff. I stay active to distract, do many things in my life, perphaps even more than I would be doing without T just to keep myself occupied, but it's difficult like hell for me to think about other things, I think it's a kind of OCD I developed around T. The feeling of no escape usually catches me in the mornings and at work when I try to focus but cannot. It's kind of weired since a lot o f people say work is what helps them to forget about the T, in my case it's just the opposite work and concetration issues are the problems which make the impact of T on my life even more prevalent.
Sorry for self pittying, I just had to vent.