Worried I’ll Never Get Better... Help?

Can people who have habituated or gotten better at managing their tinnitus offer advice?

Struggling at 9 months in.

 

Yes you will. Once you lose the fear of hearing it it will fade to the background and you will not care what it is doing. Your brain will work its magic over time and just not care.

There is a rugby star I met in my playing days named Ben Cohen (one of the best players in the world at the time). He was a winger and now has profound hearing loss and severe tinnitus to boot. He has had tinnitus since he was young. His father was murdered in his teens and he still has went on to become an international icon. He had even been on Dancing With The Stars. Eventually you just won't care. That kid looks like something else! Give her lots of hugs.

 

Thank you @Jason37!
This is so encouraging. I just get so scared when I see so many people talk about suicide from tinnitus and they have been struggling for a long time.

Why do some people habituate and others not at all?

 

Why do some people get hooked on heroin and not others? Because we're all different. One thing I see pop up over and over here is that when someone offers advice, or wisdom, or whatever you want to call it, on how they have habituated, they are immediately told that their T must not be that bad then. I think that is BS. For sure there are levels of T that are simply impossible not to hear and be effected by, but you just because someone else has achieved habituation doesn't immediately relegate their T to the status of "must not be that bad".

This forum loves splitting hairs.

 

Because people get depressed and want to vent and seek comfort from others, and that is ok until they start advocating that everyone will end up there. That's when you CAN NOT feed into that fear. We just want to be our old selves, everyone thinks about "better times" but life is linear and everyday there is something that changes, we can never change the past so why dwell on it?

These are stupid noises that our body makes and our brain just isn't filtering them out right. I am sure I'll be attacked for such a rational message but hey, this is the way most tinnitus sufferers think, even ones with loud tinnitus.

Michelle do me a favor and check out TED Talks on YouTube, look up Rebecca Alexander and watch her story. You'll understand after you watch it. PM me if you need to talk.

 

Don't worry about others, just worry about getting yourself better for you and your family. Habituation works and has worked for many people, it's not going to be a cure, it's not going to be better than silence, you're going to still struggle with fears and anxiety once in a while... But it helps tremendously those 90% of times where you hardly notice that you even have T.

Maybe if your T is so obnoxiously loud that habituation seems impossible, but those severe cases are rare and far in between. For most of us, habituation is the best thing until a cure comes along.

 

Everything depends on individual brain chemistry, genetic makeup, built in tolerance level and the intrusiveness or type (pitch, sound, loudness..etc) of their tinnitus.

For example I can drink a 6 pack of beer in no time and still function...but I know lot of people who can barelly stand up doing the same.
People process alcohol differently...I just happen to be lucky (or not if you consider the financial factor)

Same with tinnitus...everyone will process it slightly differently.

Some will be able to habituate, some will not...but if they are unable to do so, it is not their fault and there is nothing wrong with them.

Do not blame yourself if you are unable to habituate.

 

@Wolfears I very much want to habituate. I can’t imagine having this fear and anxiety inside me forever. I want to learn how to let go of the fear. I do have bad tinnitus that I can always hear but I don’t know why this means I can’t habituate. Others with worse tinnitus have made it. I want to make it too.

@coffee_girl I am worried because I can always hear my tinnitus I will not be able to habituate. I just hope that time is my big healer here but I’d like to learn coping methods.

 

@Jason37 I watched her video the other day. I wish I was strong like Rebecca Alexander. She is a source of hope. I totally think the noises we hear are natural and have always been there but we unfortunately tapped into the sound and it’s hard to let it go. Are you habituated?

 

@MidnightOilAudio have you habituated?

 

There is a drug in existence right now that may help us. It is just still in trials. it is called fx322

 

So did you give up on mute button or nah?

 

I thought mute button was a temporal treatment for silence but not a cure...

 

Physiological, Personality, Mental Health

People who have trouble habituating:

Physiological-Loud T with/without annoying/multiple tones. Pre-existing health conditions that make T management hard. Co-morbidity of hyperacusis and measurable hearing loss.

Personality/Mental Health-Anxious,obsessive, OCD, inability to manage stress, happiness and interests dependent on activities that can make T worse (concerts, playing instruments, loud events, parties) Depression, again having to manage multiple health problems at once

 

do you also have hyperacusis or noticable hearing loss, balance problems?

 

I have hearing loss on one side....and hyperacusis.

 

You want to know the truth about why people habituate (to severe tinnitus)? They don't have a choice. If suicide is not an option for you, then you will live a sub standard life till you die. That is habituation. Habituation isn't even possible for severe tinnitus sufferers. All the word means is Im too afraid to end this madness so I'm just going to live a shit life.

When it comes to mild and moderate tinnitus however, habituation is very possible. Mild being easy mode and moderate a challenge.

 

I have what is probably bog standard tinnitus, in the sense that it varies from loud to very loud (with occasional quiet days thrown into the mix). It's reactive too, and consists of several tones and sounds, though they all seem to coalesce during a spike.

I can tell you that it took a lot longer than 9 months to get a handle on it. The cerebral method of CBT didn't help much because it involves engaging with the way one thinks about tinnitus, whereas my issue was managing the tsunami of overwhelmingly aversive emotions that quite naturally arise in relation to a noise that hogs the auditory landscape. That said, a lot of people swear by Jane Henry and Peter Wilson's The Psychological Management of Chronic Tinnitus, which serves both as a guide and workbook to achieving habituation.

The approach I used that was finally successful was Mindfulness, specifically the programme outlined for dealing with chronic pain in John Kabat-Zinn's Full Catastrophe Living. But even then, it wasn't easy. There were false starts and a period when I went around looking for trees near where I live with branches that might support the weight of a suicide attempt. I should also add that I was chaperoned by sporadic but profound suicidal ideations at plenty of other times too.

One experience that marked a turning point was when I was sat in meditation but caught up in the usual cluster of catastrophic thoughts that are a constant accompaniment to the onset and onslaught of tinnitus and the descent into torment, including, on this occasion, 'This method isn't working either.' But at that juncture I also realized that I had a choice. I could carry on buying into the tinnitus persona I had created, one that had grown to be as substantial as that of a well-drawn character invented by an accomplished novelist. Or I could go about things differently.

Existentialist philosophers claim that we can never think away free will. Or at least that's what the great English interlocutor of this brand of philosophy, Mary Warnock, claims. Personally, I find the case for hard determinism more convincing. But that's another story.

Anyway, after that, things got slightly, very slightly, better. Progress with tinnitus was still almost imperceptibly slow and incremental, proceeding in baby steps. Plus, it was also a game of snakes and ladders. I'd think that I'd finally got there, and then the shape-shifting tinnitus would try to convince me that it morphed into something even more malign. Plus, I had to deal with the onset of Tensor Tympani Syndrome for a while too.

Looking back now, I see this state, which persisted for quite some time, as indicating that I was only shakily and partly habituated. But in the end, I got to the point I am at now, where tinnitus is occasionally annoying and intrusive, but for the most part gets relegated to the background, in spite of its volume.

So there you are. This journey took about 5 years. But I am a slow learner. Typically, many get to this point in much less time.

One other thing that helped was reading the writings of the late Darlene Cohen (who successfully dealt with rheumatoid arthritis and eventually even achieved an admirable kind of Mexican stand-off with terminal cancer), a formidable character who was also an excellent prose stylist.

So her book Finding a Joyful Life in the Heart of Pain is entertaining as well as inspirational. In spite of the off-puttingly New Agey sounding title, it is light years away from anything in that dodgy genre of literature.

Anyway, it's early days yet. So don't beat yourself up if you aren't doing quite so well right now.

Hope this helps in some way.

 

My tinnitus was 4 years ago from a concussion in a car accident. It came on strong and suddenly. I logged into this forum back then, and I was miserable. Not just because of the tinnitus (which sucked), but because I was also dealing with doctors and specialists and insurance companies and lawyers -- all due to being rear-ended in an accident. Plus I had work. It seemed like a lot to juggle. Mine was a brain injury, so I was dealing with headaches and other symptoms of TBI.

Let me start with the good news:
* You get used to it. It doesn't mean that it doesn't bother you, or weigh you down. I mean, life is long, and stuff is going to happen along the way. But you just accept it, and don't dwell on it as much. It becomes a part of you.

My experience:
1) For me, tinnitus is still a mystery. You can go nuts trying to read all the research, and get your hopes up about some promising cure. I'm a computer programmer, and I tend to research a lot, and I really tried hard to find a cure. But tinnitus just seemed like a moving target. My tinnitus fluctuated, so some days I would have relief, and other days it was crazy noisy -- like today.

2) I tried everything -- physical therapy, stretching, TENS, hearing aids, weight-lifting, cycling, and jogging. And muscle relaxers. I saw ENTs and neurologist and neurotologist. Had MRI and CT. I did not find the doctors especially helpful, and I even saw some renowned specialist at UCLA. Muscle relaxers helped only because they numb the brain, and who wants to live like that. Lots of things offered me temporary help -- like hot showers and physical therapy. But nothing permanent. In terms of exercise, jogging aggravates it because my head is bouncing up and down. But weight lifting seemed to help the most -- I don't know why, but maybe it offers me some stability. I still jog -- because I've moved on.

3) It's the brain. Even though I can modulate the sound by turning my head, I've come to the conclusion that it's something with my brain. During the accident, I felt my brain bounce off the top of my head. Now that I realize how much the brain is connected to sound, I feel strongly that it's the brain.

Getting better:
1) For me, I think it's okay to understand tinnitus if you don't focus too much on a cure. The sooner you accept it, and come to the conclusion that it most likely won't go away, the better. See doctors to rule out anything serious, but just don't expect much.

2) Look for relaxing external sounds. Rather than internalize the sound, it helps to focus outward. I had minor hearing loss before the accident. My tinnitus is due to a head injury, and not hearing loss, because I never experienced tinnitus until my concussion. That said, hearing aids do offer me relief (then again my tinnitus gets really loud). Also music -- it's hard to work in a quiet office with just the noise in my head. My tinnitus is white, static noise. So I listen to ambient techno music with headsets. The music helps me concentrate at work. I really like music by Aes Dana for coding -- so I put that into Pandora or Spotify.

"A Tribute to Aes Dana" [Downtempo Side]

3) Because my tinnitus came on loud and sudden due to an accident, it ruined me for a year. Even for years after, because of the frustration of not getting better. The sooner you move on, the better. And find the right music -- seriously, Aes Dana saves me. I never listened to techno before my tinnitus, but now I love it.

4) Lastly, eat right, sleep right, and exercise. Sleep does help. You may not be able to cure tinnitus, but these are the things that you can control -- so focus on them instead.

 

Yeah. I just want my haircells back.

 

@Michellejean keep in mind also the reason some have not habituated yet is because their tinnitus worsened and got louder. So try your best not to make it louder and that will help greatly towards habituation. Even if it does get louder, it doesn't mean you can't habituate either. I habituated to my tinnitus which I can hear over a shower, and when I drink a glass a milk, holy shit batman, its twice as loud, but I still doesn't agitate me at all. two things Ive done a bit differently that may have contributed to my habitation. One, I never used any masking sounds. Ever. I have reactive tinnitus and so I eliminated all sounds from a speaker and protected against sounds from the outside and things like the washing machines and air conditioners. So I was forced to really hear my tinnitus and soak in it like warm bubble bath. Also when I go out I wear ear plugs and ear muffs and sometimes for hours and when doing that its really loud. So again, Ive kinda been prevented from avoiding my tinnitus and faced it head on which may be why I've habituated so well. So some food for thought.

 

To the extent that I can sit in an otherwise silent room and it doesn’t bother me, yes. When I’m in a silent room it fills up my entire head, I can feel it as much as I can hear it, but I don’t care.

The only times I’m ever bothered by it are when I get the random fleeting bursts or a strange new noise comes out of nowhere, that stresses me out.

 

@MidnightOilAudio how long did it take you to get to this point. Mine fills my whole head to and is loud in silence, and loud around other noises. But I’m determined to make peace with my tinnitus.

 

I'm closing in on 4 years and I can say it takes years. At least 2. But like I said earlier, everyone is different. There is no set amount of time that you will reach and all of a sudden you will be OK. You will have moments where you feel better, days where you feel better, and you will have setbacks. You can be sure of that.

Keep fighting. Your little one needs you.

 

is the hyperacusis characterized by things sounding too loud, or ear pain?
or both?

 

Did it ever calm down after your surgery?

 

Some sounds seem loud out of my right ear and I get the pain sensations in that ear as well.

 

Seek support from a therapist. Meds are not always needed, but the words and connection of a face to face meeting can really help a person out. The therapist does not need, to have tinnitus to understand. If you want to educate the therapist on what sounds you are hearing, play some tinnitus vids and it can let her/him know how others feel about tinnitus and what it sounds like.

I have been able to manage my tinnitus and my chaos in my life by having support, my faith and my fitness routines. Having the proper mindset is also needed to live life with tinnitus, all of this is very possible.

Good luck!