Tinnitus, My Dear Friend

Very insightful, Autumnly:
Let's all visit every Medical School and Medical Research Facility and announce that there is no exigency for further effort since "suffering will go away if you only observe what causes the suffering."
In torture centers in Syria, men are hanged from their wrists for over 10 hours until the blood flow is stopped and their hands have to be amputated.
It would be rather obscene to suggest that they should just blithely discard this unimaginable horror and pain since "such suffering will go away if only you observe what causes it."
This is the only condition that produces such ludicrous advice. This is only because no effective treatment and/or drug yet exists.

 

Sigh, not all suffering of course. Pain will not go away but mindfulness can make it easier to bear.

 

Yes. It made no difference when it comes to my tinnitus perception/awareness, loudness or distress. It's still just as debilitating.

 

That is a pity.

Still, many people benefit from it.

I find it sad that so many people on this forum write in a negative way about possible paths to relief. I just don't hope that it withholds other sufferers from trying them out. Due to such negative posts they might lack the determination that is needed to obtain results.

Mindfulness is a possible path to relief and in my eyes a very promising one. A bit of believe can already help a lot. A piece of hope. False hope on the other hand can destroy you.

Either way. I just want to do good. I don't want people to suffer. I suffered and I no longer suffer. Observing made the difference for me.

 

About false hope. If something you try does not bring relief, then that can bring disappointment. But there is only disappointment if you had expectations.

In the beginning I was often disappointed. That cost me a lot of energy. But then I started to manage my expectations. I tried and did my best and if it did not work, I would take a turn on my path to lasting relief. There was no false hope for me anymore.

 

Most severe sufferers make it abundantly clear that they're not against CBT/mindfulness in general but against the harmful misconceptions that are being spread about tinnitus. This thread about a clinic offering CBT for tinnitus in Holland shows this as well.

If TRT teaches someone that

• tinnitus loudness is the same for everyone
• only your perception makes it seem loud
• the brain can tune it out
• it's just your attitude that decides whether you suffer or not

then TRT does more harm than good. Throwing severe sufferers under the bus while saying "but it gave someone hope!" isn't something we should support.

Taking hope away from severe sufferers by implying we don't need medical treatments and thus not supporting them, can also destroy many people. The heavy focus on managing and coping instead of actually treating the condition already has devastating consequences.

We can promote CBT/mindfulness and so on without perpetuating misconceptions and lies and without glorifying the absence of real treatments.

 

I do not know whether the bullet points above are referring to what Jastreboff actually states in his book or that is derived from my posts. In the latter case, all that I have said about TRT is merely my interpretation of it. It might not be completely in line with TRT.

 

Hi Allen Y.,

Thanks for your post.

Habituation means: 'decrease in responsiveness upon repeated exposure to a stimulus.'
If someone 'only habituates', then, in your eyes, what changes for this person?

In mine it is the negative reaction that causes the person with tinnitus to suffer. Thus if someone habituates, the negative response is gone and the suffering with it. Thereafter the sound is there still, but one doesn't care about it any longer. That is where I am now.

I don't like your comment about boiling until you die. I can see that you think this way if you have suffered for a long time. Please keep in mind that tinnitus sufferers can be very sensitive to such statements (I was). They might even think of it as their destiny (I did). Such believes can lengthen the time it takes for people to recover. I believe that mine was delayed by such negative thoughts. Perhaps I am just one of a few that is sensitive to such messages.

 

And these positive optimistic people, they still suffer from tinnitus? If so, then I wonder what causes those people to suffer. I guess this is one of the riddles that still needs to be unraveled?

 

Look at people like Jazzer, Fishbone and Ed. They have had severe tinnitus for years and they are trying as best as they can to keep going but that doesn't make their tinnitus any quieter.

If you truly don't understand how severe tinnitus can be exhausting and debilitating, then you haven't experienced it. It's not a mystery or a riddle, severe tinnitus patients are telling the world why they're suffering. It's loud, intrusive, the brain doesn't tune it out, there are no quiet moments.

Why do people turn down the music in their car when looking for a certain street? Why can music and other sounds be used as torture? Why do people perform better in exams in a quiet room compared to a loud one? Why does it annoy people when their neighbors are listening to loud music?

This is just getting insulting, honestly. Why do people suffer from chronic pain, severe visual snow or migraines?

And you are worried about negatively impacting people new to tinnitus but apparently don't care about hurting severe tinnitus sufferers? Priorities.

 

You may not know this but Jastreboff has directly stated that CBT is not as effective as TRT.
The CBT'ers and TRT'ers are not two peas in a pod, they are competing against one another. In the United States TRT remains domnant but it seems in the UK, CBT is replacing it successfully.

The field is not just TRT vs Scientist, but rather TRT vs CBT vs Scientist.

The scientist are also divided in ideology rather to treat tinnitus through brain stimulation or through repairing a damaged cochlea. Scientist are even further more split on bio-companies and financial interest. ie Frequency Therapeutics vs Decibel Therapeutics vs Otonomy.

This whole field of tinnitus research is starting to become highly competitive and we don't know what will happen next. But historically Mr. Jastreboff has been a unchallenged monopoly circa 90's-late 2000's. Most scientist in the field (especially otologist) no longer take him seriously because they know his theory of hyperacusis has major flaws. But he still has extremely powerful influence towards ENT's and the clinical world. Everything ENT's know about tinnitus and hyperacusis they learn from him. There is no mandate for ENT's to stay up to date with scientific inquiry on tinnitus and hyperacusis.

 

Interesting debate. There is a therapy called ACT (acceptance and commitment therapy) that makes an explicit distinction between pain and suffering. They teach cognitive defusion, willingness, mindfulness and living according to one's values. This has been applied in trials to many conditions, including chronic pain, anxiety and depression, and tinnitus. My view is that in theory one can learn to live productively with pain, releasing the suffering, as per ACT, but in practice the stronger the pain the more skills and training one needs. With very loud intrusive severe tinnitus you must be the Dalai Lama to make it work.

 

It's just a scam to take away a suffering person's disability check and make them feel guilt for being injured.

 

Not really. It is applied also to people who are officially disabled and suffer with chronic pain. There is a lot of science supporting it. It doesn't do miracles though and we all agree that eliminating the pain would be best. But in anxiety, depression, tinnitus and chronic pain this is not possible yet, so we are down to therapies like ACT.
This is a paper on ACT vs TRT

Acceptance and Commitment Therapy versus Tinnitus Retraining Therapy in the treatment of tinnitus distress: A randomized controlled trial

APA Citation:
Westin, V. Z., Schulin, M., Hesser, H., Karlsson, M., Noe, R. Z., Olofsson, U., Stalby, M., Wisung, G. & Andersson, G. (2011). Acceptance and Commitment Therapy versus Tinnitus Retraining Therapy in the treatment of tinnitus distress: A randomized controlled trial. Behaviour Research and Therapy, 49(11), 737-747.

Abstract:
The study compared the effects of Acceptance and Commitment Therapy (ACT) with Tinnitus Retraining Therapy (TRT) on tinnitus impact in a randomised controlled trial. Sixty-four normal hearing subjects with tinnitus were randomised to one of the active treatments or a wait-list control (WLC). The ACT treatment consisted of 10 weekly 60 min sessions. The TRT treatment consisted of one 150 min session, one 30 min follow-up and continued daily use of wearable sound generators for a recommended period of at least 8 h/day for 18 months. Assessments were made at baseline, 10 weeks, 6 months and 18 months. At 10 weeks, results showed a superior effect of ACT in comparison with the WLC regarding tinnitus impact (Cohen’s d = 1.04), problems with sleep and anxiety. The results were mediated by tinnitus acceptance. A comparison between the active treatments, including all assessment points, revealed significant differences in favour of ACT regarding tinnitus impact (Cohen’s d = 0.75) and problems with sleep. At 6 months, reliable improvement on the main outcome measure was found for 54.5% in the ACT condition and 20% in the TRT condition. The results suggest that ACT can reduce tinnitus distress and impact in a group of normal hearing tinnitus patients.

 

I actually had a course of this recently (12 times - 1 each week) I am trying to remember and implement some of the stragedies from the therapy, into my life (like when I am going forward or backwards in terms of my life values) but in essence it is about accepting the pain and suffering and that for me is totally against my very strong fundamentally opinion that life has zero value if it mostly, or entirely only consists of pain/suffering. That opinion is so deeply buried in my personality and I don't see it as something I am able to change.

I have found I can make the stragedies from ACT work (somewhat) for me when the pain/suffering is mild/moderate, fleeting and sort of manageable, but when the pain is bad......it makes absolutely no sense to me.

 

Many people benefit from it, that's great, good for them, and it's helping them cope within their life, possibly living a full life again with some limitations, but mindfulness is just a possible PATH like you stated yourself, not the end-all destination for people with this condition. Each person has their own path for tinnitus, one works for the other, one does not, so on and so forth, but at the end of the day -- no one wants to LIVE with this condition if given the opportunity to be rid of it.

I don't see anyone here speaking with negativity, I see people speaking their TRUTH and their struggle with tinnitus which they shouldn't be shushed over, because this is what rallies up people to speak on their own story for this condition, hopefully letting the majority of people know, this isn't just a sprained finger. It could get worse, it could change, it could cause anxiety, a malfunction to the brain and push someone over the edge. It could demoralize someone and ruin their life, I guess, in your mind, if they allow it. The point is -- That is the truth of Tinnitus for severe, chronic, long-term sufferers who aren't able to reach the end-goal that people like you, preach about and worship.

I don't like your comment about boiling until you die. I can see that you think this way if you have suffered for a long time. Please keep in mind that tinnitus sufferers can be very sensitive to such statements (I was). They might even think of it as their destiny (I did). Such believes can lengthen the time it takes for people to recover. I believe that mine was delayed by such negative thoughts. Perhaps I am just one of a few that is sensitive to such messages.
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You also preach about people being insensitive, but this whole post is you stepping on the toes and feet of severe suffers who are speaking their peace to you. You are coming off hypocritical here, even if it may not be your intentions. Also, sure, be proud you were able to conquer your reaction to tinnitus, the negative offset of emotion. Another reality is that everyone's brain, or chemistry make up is not capable of this. And if they're not, now, what do you have to say to them?

 

Very well stated, DanishGirl:
For me your "opinion" is the equivalent of a sense of self-worth, and even of a cosmic sense of what humanity should reasonably be compelled to endure (especially since we have committed no particularly heinous crime that would warrant such punishment).
Or, agreeing to endure this is a capitulation of one's own core values regarding what constitutes fundamental humane treatment; or, what one should willingly internalize as an accepted, accommodated state of misery.
Being outraged about this implies a self-assertiveness that maintains an essential integrity component of my ego formation.
Such outrage solidifies a certain necessary sense of justice; without it, I feel as if I have caved in to a "Stockholm Syndrome" regarding this woefully cruel affliction (and would seduce me into championing all of these various quack remedies).
And such outrage most importantly makes me regard this as an enemy to be combatted so that my resolve to keep searching for some sort of real, legitimate, scientifically based relief is not undermined.

 

Of course my tinnitus has never been as severe as theirs, but it did drive me insane. There was hardly anything else I could think of or focus on. The loudness was unbearable. These were extremely dark times for me.
So I get it that tinnitus can be devastating, delibitating, w/e. I have been staring for weeks. There were no quiet moments, only terror.

Yes, these "sounds" one day drove me absolutely insane. But somehow (see my success story) I managed to see these sounds as a garden variety of neutral brain shizzle. I broke out of the loop.
I understood why I was suffering: I had subconsciously associated tinnitus with danger. No wonder it was driving me insane.

So for me still the question stands: why do they suffer? In my eyes this is not insulting, but a rather important question. FYI: I do not mean to insult, I just mean to help.

 

I understand this last part and i agree. That was why I wrote half-jokingly that to make it work with strong pain you have to be the Dalai Lama. However, it is not about accepting the pain and the suffering. It makes a very important distinction between pain and suffering. It all moves from there.
Your opinion that life has no/little value if you have a lot of pain is where part of your suffering comes from, according to ACT. It is an opinion ACT invites you to suspend and to observe, and possibly to defuse from. There are many techniques to achieve this cognitive defusion. You may not want to challenge that opinion and that is perfectly fair and reasonable but then you sabotage ACT from the start. Once the cognitive defusion works, you may become willing to feel your pain and to experience it in a new way while moving toward your values. I agree this all sounds very theoretical but there are people who make it work, even people with strong pain. But it is not easy and if the pain is strong it is actually very hard. Having said that I obviously fully respect your opinion. I have struggled to make ACT work as well.

 

Unfortunately there is always a lag between science and medical care.
I guess in the end everyone has no choice but to find their own way in this mess. I picked a combination of (or pieces of) CBT, TRT and mindfulness and it has helped me tremendously. Why should they compete really? It makes no sense to me.

 

Hej der,

I am very sorry that you feel this way. I just want to say that I feel for you and I hope that things get better.

Life isn't easy, that's certain. I have similar nihilistic thoughts, but they do not disrupt me as much anymore. I have come to use them to my benefit. Yes, life is pointless. But then my negative thoughts and anxieties are so too. I do not have to takes these feelings and thoughts seriously, it's just all rubbish. That helps me to bring things into perspective.

Possibly you cannot do anything with what I am saying here. But... I just what you to know that I mean to help.

 

So referring to tinnitus as being boiled alive is not negative to you? I'd say go sit in a bath of boiling water and see what kills you first; your tinnitus or the heat.
Of course it is not a sprained finger, but being boiled till Death comes to get you is yet another extreme!

Yes tinnitus can ruin your life: in your mind! It is a mental disease. Tinnitus phobia. Misophonia with some extreme bad luck. But it doesn't really physically hurt you one bit. I wonder: is it only the sound that makes people suffer, or anxiety or depression? I just have such a hard time believing that sound can be the actual cause of the suffering. In my case it what extreme anxiety.

But still, damn. You hit the right spot. What to say to people that are not capable of habituating? I honestly don't know. It's truly sad if people exist that are by birth incapable of habituation. I feel for them, that's for sure.

Sorry guys. I do not mean to cause any distress!

 

And how do you plan to combat something you do not have control over? There might not be a scientific breakthrough within decades. I have heard a few things about this Neuromod, but what if it is available for you and does not help you?

Sure, you should keep pushing scientists to discover a cure. How lovely would it be if there is a device or medicine that eliminates the phantom sounds that you constantly hear.

But what do you do in the mean time? Fighting it is pointless, you cannot punch Mr. Tinnitus in the face. You can become angry about him, but the chance is large it will cause him to shout a bit louder.

Surrendering surely is an option. Let him shout, let him be. You don't need to love him (Stockholm Syndrome), you just need to let him be.

Of course this is no option for you (at least not yet), because you see him as a great threat that you need to battle.

Yes I am talking about tinnitus as if it is a person. In my head I have talked to him many times. Call me crazy, but now Tinnitus is my nice neighbour of whom I do not mind if he makes noise.

 

ACT sounds very interesting. Thanks a lot for mentioning it. I will look into it. Perhaps it can help my wife (fibromyalgia / depression).

 

Sure. Maybe once you develop a new tone every year and pain-hyperacusis so bad you can’t even whisper anymore you’ll understand.

Everyone can develop tinnitus so loud and intrusive that they can’t live a normal life anymore. Your tinnitus just hasn’t reached that point. People like you are one of the main reasons why severe sufferers are not being taken seriously and why there’s no bigger movement towards medical treatments.

Genuinely wondering whether you’re just a troll. Can’t imagine how a person can post such horrible things when severe sufferers on here have made so many posts explaining why they’re suffering. Absolutely no understanding.

Also, you privately messaging me asking whether I still suffer - that’s irrelevant. Millions of people worldwide are debilitated by severe tinnitus to the point they can’t even work anymore. It’s not about me. “As many as 2 million people can't work or carry out other daily activities because of the tinnitus itself, or the psychological distress it causes them. Tinnitus is the most common cause of service-connected disability among veterans of the U.S. military.” Source

Just because it’s not pain doesn’t mean sound can’t be debilitating.

Edit: Also, you don't make it clear whether you still have severe tinnitus or not but you say you rarely notice it. This is not the kind of tinnitus severe sufferers are usually talking about, it's intrusive and the brain doesn't tune it out for most of the time, it's mostly at the front. The process of tuning it out doesn't work for millions of people and I have linked two studies showing this.

 

I developed a new tone almost on a daily basis and it changed constantly. I could no longer concentrate on the things that mattered. It was extremely loud. I feel as if I have skipped a whole year of my life.

I hereby stop my discussion with you, Autumnly. Which is probably for the best for both of us. Apparently we are not able to understand each other and that is fine.

I wish you all the best in your life.

 

The main source would be "get out of your mind and into your life" by Stephen Hayes. It's a good self help book but it's not easy. It does not do miracles, especially if the pain is severe

 

Yes, mindfulness, ACT etc do not work for everyone, and they are unlikely to help significantly in very severe cases anyway. There are people who manage those but I suspect they are exceptions, or perhaps their brains are wired differently.
We need a cure.
We need to respect people for whom mindfulness does not help.
And we need to acknowledge it can help other people.
Nobody's suffering should be underplayed or discounted.
I think we can all agree to these points.

 

Hi all,

In my story I forgot to add that I had greatly underestimated the effect of my behaviour. Searching on the internet, reading books about tinnitus, talking to people about tinnitus, going to a quiet place when I noticed a new sound to check whether it was actually coming from inside my head, stopping to listen to music, wearing earplugs, stopping visiting the cinema, rejecting requests of friends to go for a drink, socially isolating myself, stopping with studying; all these kinds of behaviors contributed to me teaching my brain the importance of tinnitus, up to the point that it was so loud that I wasn't any longer capable of functioning. Reversing to what I behaved like before I suffered from tinnitus wasn't easy and I did so in many small steps, with plenty of fallbacks to old behavior. With each fallback I tried to be kind to myself and in the end I managed to get my life back.

Some of you might wonder whether I have actually suffered as much as I claim to have (Autumnly at least doubts it). Her 'accusation' initially that hurt me; I don't like it when people do not take me seriously. Possibly you are in a place worse than I ever was, but there is no way for us to know and what is the point in comparing the severity of one other's suffering anyway? You might feel that the way I described my suffering is not coherent, or that my story simply doesn't add up. If that is the case, please consider that I have been feeling immensely better for quite some time now. The past version of me that suffered lived in another world all together, my life is so uncomparibly different now. On top of that, my brain tends to forgot the negative stuff that it has experienced throughout its life. I am so very glad that I am no longer there.

I will now quit going to this forum. I feel there is nothing else I have to add. I have shared my personal view on tinnitus and it is up to you what to do with it. Since I notice that my comments here are causing friction and frustration, I guess it's better to just go. I need you (again) to know that I did not mean to do any harm. I shared my story and views only in the hope that I could help you.

Of course we are all different and we all need to find our own paths to longlasting relief. But please do not think that you cannot habitaute, because so many of us can. Do not lose the hope that it will someday get better. Find professional help if need be.

Lastly, I hope there will soon be a medical treatment for those who suffer from tinnitus from which they cannot habituate. Nobody should have to suffer like that.

I wish you all the very best.

Best regards,
Rudy

PS: I will not fully leave the forum yet, I will still reply to personal messages.

 

RudyL90,

I haven’t viewed the responses to your original post because stories other than success stories give me anxiety. I’m curious as to how long it took you to get out of your “funk” period and start feeling like yourself again? It’s been a couple months since this started for me and I do good, then fall back into a funk. I just need to stay off the internet but wanted to ask this question first!

Thanks!