3 Years with Tinnitus — the Phases and the Habituation

3 Years of Tinnitus

Today is exactly 3 years from the day my tinnitus started... I saw the Facebook Anniversary post of a check-in at the theater I attended and where a loud sound effect (gun shot) caused me this issue... It reminded me that sometimes, a simple decision like going or not at a theatrical play can change your later life so much...

Phase 1: The Panic

I still remember the terror of the first night when I fell on my bed and noticed the constant ringing in my left ear.

I tried to persuade myself that it is only in my mind or that it is something that will soon end. But it was there the next day and the very next... And my panic was constantly increasing... I was quite lucky because during the day the ambient noise of the city covered the ringing, and only when I was in a quiet room or with headphones muted I could hear it.

I went to the doctor 5-6 days later thinking he would find the cause, he would give me a pill and all would go away...

But it didn’t... The doctor didn’t find anything and told me that is an acoustic trauma. He gave me some steroids to see if it would become better, but he told me that most likely it won't go away...

I was in panic.... I went to another doctor but the diagnosis was the same.. He told me I would get used to it.

I wanted to scream, to cry... What do they say?! How can I get used to this thing?! No way!! I was cursed... My life was miserable and I was feeling so lonely... My family and friends couldn’t understand the struggle... But how could they?! If you haven’t suffered from tinnitus, you cannot imagine it.

Suddenly my life seemed to be very long... How would I live 10-20-30 or more years with this ringing? I was putting on music each night to help me sleep... In cases when I was waking up and once noticing the ringing being there I started crying... I was in denial, anger, asking “why me?!”, and I was really close to depression...

Phase 2: This Forum

Some weeks later I found that forum... It was a bitter-sweet experience... I felt less lonely because I found so many people to understand me and sharing stories, struggles etc. that reduced my panic and stress instantly by a significant amount. But I felt really sad seeing all these people suffer like me or even more, a lot more... I still wonder how, besides the fact that thousands of people are suffering, there is still no cure!

Phase 3: From Denial to Acceptance

This was a very hard step... Accepting you are going to have tinnitus forever. Still no cure, no miracles, no one to help. It will be a part of you for the rest of your life. And you will survive.

I saw many people on this forum having tinnitus for years and they were still alive, many of them were very positive and supportive. And I gradually went to the acceptance phase. Instead of googling “pills from a rare China tree to cure tinnitus” I started to search for ways of living happily along with tinnitus.

I stopped complaining the whole time, discussing again and again of how unlucky I was... I stopped making this a priority in my life.

Phase 4: Hyperacusis

The doctors told me that gradually along with tinnitus I would also lose part of my hearing. Well I was one of the rare cases who instead developed hyperacusis. I heard things around 30% louder in my left ear. This meant wearing earplugs in loud places to bear the pain in my ears and an uncomfortable way of trying to understand from where any sound came from. If a coin fell at my right side, I may have searched for it at my left side because I heard it louder from that ear... Quite awkward but manageable...

Phase 5: Not Hearing Your Tinnitus

At this point I should say a big thank you to @I who love music and the Back to Silence thread. I had started to notice that during nights I was happy and my mind was thinking of a loved one let’s say, I was sleeping without noticing my tinnitus. I was waking up and I was thinking “what the hell, did it go away?” Well no it was there, but I understood I tricked my mind by adding an extra layer of something more important on top to cover its focus from the ringing.

The method @I who love music created affirmed me that yes, we can trick the mind... we can make it believe the ringing is an outside, totally unimportant, ambient noise and gradually ignore it. I used his method: not measuring how loud the tinnitus is... Well I was constantly measuring it hoping it would be quieter, but I was always wrong and it was always louder! And my mind was 100% focusing on it and I was thinking that something bad was happening, increasing my adrenaline levels and making my tinnitus worse. Vicious cycle!

So I stopped to measure it and if I was about to think of how loud it is, I started to think something else... I was thinking of a task I managed to accomplish at work, or a movie I just saw, or simply dreaming of a future happy scenario in my head.. I noticed that when I was thinking of sad or happy stories and had these feelings, I was in silence...

Sometime I was thinking of my mind as the Eye of Sauron in Lord of the Rings... If I was wearing the ring it would stare at me and could destroy me. So I was trying to destruct it to turn to something else and let me, “Mr Frodo”, continue my journey in peace. The ring is still in my pocket though - the tinnitus didn’t leave, it is still there, but I do not hear it anymore!

Phase 6: In Silence

It was hard and still is sometimes. Now for example that I am writing this post, the tinnitus is here with me. Because I write about it, I think of it, I give it attention and it responds back to me. I say to it: «hey don’t think you will stay for long, it is only for a while my friend, after the post button, you will be muted again my dear!”

It is not an easy or straight forward method, sometimes it is worse but I can say that 90% of the time, even more, I totally forget that it exists. If I think of it and try to measure it, yes it is there 100%, loud and persistent. But most of the time I simply do not hear it.

I wanted to share this story because with my “3 years with my friend tinnitus” anniversary I remembered the phase 1 struggles and I am thankful for the phase I am in now and wanted to spread some hope to all.

We are not alone! And I need to thank the members of this community from the bottom of my heart!

Many wishes to all of you for silent days!

With love,
Christina from Greece

 

Dear @Markku I do remember our talk that first day I joined the forum, and you cannot imagine how much it had helped me... The whole forum and you in particular...

Feeling that there are people who understand and are there for you to chat is a great help! For me it was the first step to stop feeling that miserable... Thank you!!!

I was away from the forum for some months as I was trying to work on the “let’s forget tinnitus” process. But now that I find it easier to push it away when it starts, and I accept it without panic when it comes, I will visit more often...

And I hope this thread to help some people especially during the first days..
Have a nice evening!

Christina

 

What caused your T?

 

A loud sound effect (gunshot) at a theatrical play. The whole play was quite low on volume and suddenly from a speaker the gun shot came and it was very loud. Many people closed their ears the same time with me. But I guess I was already sensitive and the trauma was caused. My sister was with me and didn't have any issue..

 

Have you ever gotten anxiety or depression from this? If so, how did you deal with it?

 

Yes, at the first 3-4 weeks I started to have a lot of anxiety and cry spells. I was close to depression.
The first thing that helped me, was finding this forum. I talked with some people around here and saw they had managed to live a happy life despite this problem, and this gave me courage.
So I tried to stay positive, it wasn't easy but the feeling of belonging to a group helped a lot!
I started to feel less lonely and this made me feel better..
So, take your time, not rush yourself to instantly feel super fine.. It takes time and small steps per time..

 

Has your hyperacusis faded ?

Did you have ttts?

 

Do you have TTTS?

 

Thanks for the encouraging words! I am relatively new at this new world of T. I am still in middle or prednisone treatment to try an restore at last a little bit of hearing in my right ear. (It was sudden unexplained hearing loss). I too have received some level of comfort having discovered this website, for the same reasons as yourself. This beast can make one feel awful lonely out there. Depression is always lurking around the corner. Even though I am still receiving treatment, I am resigned to the reality that I will probably be living with this thing for the duration. I sometime feel as if the cruelest joke was assigned to myself. I suddenly loose 100% hearing in my right ear for no apparent reason, and my reward for that is to be left with this never ending noise in my head that is like a smoldering fire that has gasoline poured on it any time I have sound waves entering the good ear.

Anyway, I am getting there. And posts like yours and a dose of faith in greater things to come, offer me and others some hope that our mysterious brains will come to the rescue and spray enough magic water on that fire to keep it just a smoldering afterthought and pave a new road to normalcy. Happy for you.

 

I have to say that you do have one of the best attitudes I've seen in the face of such a nasty condition. Props to you!

 

Does that really help with restoring our hearing? How does it work?

 

I do have TTTS yes. I’ve had it about 10 weeks

 

Mind sharing how you got it, and how it behaves? I do have MEM, but it seems to be related to my Stapedius Muscle instead

 

I got it from an acoustic shock from balloons bursting near me.

My ear thumps when I hear noises or sometimes when I finish talking.

Doesn’t always cause pain and I’m not even 100% sure I have hyperacusis and if I do it’s mild

 

I do not have TTTS but yes, the Hyperacusis is still present. I do hear much louder from my left ear. I lower the volume at my headset at the left side and I always have earplugs with me. And if I go to a bar or live concert I always put it on my left ear, cause otherwise it may be too loud in the degree that my ear hurts.

I was quite embarrassed at first to use them out at a club and was trying to hide it behind my hair, but gradually I am more open with this and start to advice people to protect their ears. Some weeks ago I was with friends at a club with extremely loud music and put my earplugs at both ears. They are designed for music so I enjoyed the music without pain. When we went out I put them off and I was fine while all my other friends started to complain for ringing in their ears. Guess what, the next time they also had earplugs with them

It is a discomfort, this hyperacusis, but it is manageable. It could be useful too: I could spy on my neighbors easily If I needed to hehe

 

What is the thumping like?

For me, with (suspected) Stapedial Myoclonus, my right ear reacts to some sounds with some sort of high frequency distortion.
Ever since this started, I've noticed that my right ear also doesn't hear some high frequency sounds as well as my left.

 

Well, that's one way to make use of it!

 

It’s only noticeable in quiet settings but once a sound occurs or I stop talking I get a single thud sound in my ear.

95% of the time it’s my right ear

If I talk on the phone sometimes my ear flutters. I don’t think I have much if any distortion that I’ve noticed

 

Do you physically feel this? If so, what is it like?

And does your TTTS go along with your T?

 

It’s a weird sensation but yes i can feel it.

It came along a week after. T I can deal with because I’ve got used to it in terms of sleeping. The TTTS is very irritating

 

For what I have (sudden loss of hearing that was not noise induced) the standard treatment is prednisone taken orally and also in my case steroid injections directly into the inner ear. Sometimes they will do both at the same time. I am told by my ENT doc, that the prednisone treatments are only effective if done in the first few weeks following the hearing loss, and the sooner the better. Even at that, there is only a 30% chance of getting any hearing restored. The idea with the prednisone, is that it will hopefully reduce inflammation that might be causing the hearing loss. The truth is, they don’t really know for sure if it even is inflammation. It’s only their best guess. I was told that the only way of actually knowing what happened to me is by means of an autopsy. I almost said “Okay, I can arrange that”

 

Oh man, all this started for me in December last year. Is it too late? The thread below has my hearing test results, do you think I'll need to try Prednisone, if it's available over the counter?

https://www.tinnitustalk.com/threads/has-anyone-ever-regained-their-lost-hearing.34202/#post-426904

 

probably too late for prednisone treatment. But I'm not a ENT doctor. Where I live in USA it's a prescription drug. I did oral, and now I have one more injection to finalize the treatment.

 

Has Prednisone worked for you? And if you took a look at my hearing test results, what did you think of it?

 

So far, the prednisone treatment has had no effect on my loss of hearing, and I suspect that it won’t. I am just doing everything I can right now to give myself the best chance of regaining a portion of my hearing in right ear. I want to be able t tell myself that I tried. I am not qualified to give you an opinion on whether you would be a candidate for prednisone treatment.

 

Are you going to try HBOT?

 

Well, thus far, my ENT has not discussed HBOT ( hyperbaric oxygen treatment) with me. I have recently done some reading up on the practice, and it appears as if they have had some positive results with some hearing loss patients, although it is not conclusive, and also it is best to initiate the HBOT treatment as soon as possible following the sudden hearing loss. It would think that if insurance doesn’t cover HBOT treatment, and I doubt that it would, it would likely be very expensive to have to pay out of pocket for it. So, I am probably out of luck when it comes to this. It’s kind of ironic for myself, as I used be a deep sea diver (I worked n Gulf of Mexico) many years ago, and we regularily used Hyberbaric Chambers for decompression. We just called them decompression chambers, and we breathed pure oxygen as part of the decompression treatment. If I was still connected to the business I would try the oxygen treatment myself. There are virtually no bad side effects to breathing pure oxygen while under pressure in a Hyberbaric chamber. There is a hospital near me that has one set up for diving accidents and I think they also use it for burn victims. But short of insurance agreeing to pay for treatment for my ears it would cost a fortune to pay for it. It is not a one time treatment. HBOT treatment for sudden hearing loss is a series of treatments over a period of weeks, from what I gather.