"Your Tinnitus Is a Mild Case and Mine Is Severe"

"You only habituated because you have a mild case".

"It is impossible to ignore this hellscape of loud and varied tones, you don't know what suffering is. I have a severe case."

"I am just trying to hang on until a cure is found."

"I am sick and tired of people with mild cases parading their success stories around, it pisses me off."

Many people with tinnitus and its close cousins hyperacusis and noxacusis suffer tremendously. Tinnitus Talk is filled with people deeply affected by this condition. The largest thread on this forum is called "Suicidal" so clearly many people have their lives deeply affected by this condition. The sounds are real, the suffering is real, the devastation of so many lives is real. Here's the thing. Tinnitus Talk is also filled with success stories. In addition, tinnitus affects 10-20% of the entire population (that's a BILLION people) and the vast majority of people with tinnitus do not have their lives brought to ruin. How many have you discovered to have tinnitus only after you started talking about it? About 35,000 of us are registered here, a relatively small number.

Some statistics from a scholarly article on the subject:

"Tinnitus, described as a sensation or awareness of sound that is not caused by an external sound source, affects approximately six million people in the UK -- 10 percent of the UK's population. Approximately 1 in 100 people are very distressed or disabled by it and as many as 1 in 20 people are at least moderately distressed by it. Tinnitus is associated with complaints of emotional stress, insomnia, auditory perceptual problems and concentration problems"​

So why are most people barely affected and some pushed to the absolute limit of survival? Are there mild and severe cases? To be sure, but what does that mean? Is it decibels, frequency, number of discrete noises, distortion levels, ... It's a lot easier to ignore a pleasant low level hiss that sounds like a sea shell than perhaps jackhammer noises and possessed screech owl noises for sure. The latter is a bigger hill to climb. Consider, however, that the physical characteristics of the sounds does not tell the entire story. There are multiple threads here where a member is absolutely devastated by their tinnitus but yet they report that they have to go into a quite room to find it. Others talk of tinnitus so loud that they can't hear the people talking in the room but yet they habituated. So what gives, what does mild or severe case really mean? Why are the numbers severely devastated so small compared to the universe of tinnitus?

The clinical experience of professionals studying the workings of the brain as well as those who treat tinnitus and other ailments with a high distress component talk about a model where there is the original arrival of the sounds, the initial shock of this new unwanted visitor living rent free in our heads AND then our reaction to the new visitor. Some people have a much higher tendency to having a hypervigilant reaction to these sounds, they have a harder time accepting the freeloader as the new normal, a non threat, an unimportant change that is merely the result of ageing and/or exposures to life (and headphones of course). It's the same reason why some people absolutely love living in NYC with traffic noises, constructions, jack hammers, car horns, etc and some people cannot fall asleep if they faintly hear a TV 3 doors down the hall. It is the combination of the original new sounds and our reaction to them, our emotional relationship with the "beast".

I have no idea if there will ever be a "cure" for tinnitus but there is something that you can do right now to get relief if tinnitus is ruining your life. There are lots of names for exploring our emotional reaction to our tinnitus - Back to Silence, CBT, mindfulness, ... Bullshit or effective? A published study on the subject:

“In a study of 182 adults with chronic tinnitus distress, MBCT-t resulted in significant, reliable improvements. These improvements occurred regardless of tinnitus severity or comorbidity (e.g., hearing loss, hyperacusis).”​

Another study on the subject:

“Results: A total of 75 patients were randomly allocated to MBCT (n = 39) or RT (n = 36). Both groups showed significant reductions in tinnitus severity and loudness, psychological distress, anxiety, depression, and disability. MBCT led to a significantly greater reduction in tinnitus severity than RT. Treatment was effective regardless of initial tinnitus severity, duration, or hearing loss.”​

And finally, a search of published literature on the subject:

"Results: The systematic search yielded seven articles (425 patients). Three randomized controlled trials (RCTs), three cohort studies and one comparative controlled trial. Different types of MBIs, including MBCT and MBSR, were assessed with various questionnaires. Two of three RCTs showed a statistically significant decrease in tinnitus distress scores directly after treatment in the mindfulness group compared to the control group. Six of seven studies showed statistically significant decrease in tinnitus distress scores directly after mindfulness therapy. One of three RCTs showed a statistically significant improvement of depression questionnaire scores after MBI compared to the control group directly post treatment."​

There are two takeaways from this research. First, techniques such as mindfulness or CBT where you learn to accept tinnitus and reduce the relevance of and focus on tinnitus makes you better AND it does not matter how severe your initial reported symptoms and perceptions are. Yes, there are more mild and more severe cases but our emotional reaction to the new condition are part of mild vs. severe and all cases can be helped by improving our reaction to it, our relationship with it. Our emotions about it.

Get out the flamethrower if you must but consider the reasons for such a reaction should you have it. If you need your tinnitus, if your current goal does not involve getting better, if you're here for other reasons that's cool, continue on your journey. Your life, your choice but for those who are here to find things that can make them better there is an opportunity for a better life for every one on Tinnitus Talk. If you are looking for hope and guidance, science based options for relief then this may help you. I have no dog in this hunt, just my own life experiences with chronic illness and unspeakable loss and what I have learned through research. Also remember that not all books and practitioners are created equal. Sometimes you have to bring your car to several mechanics before you find one that fixes it right.

No judgement, I just have a heartfelt need to try to help people get better. It's a calling born out of the loss of my dear wife and all of my friends to cancer and my struggles with my two cancers. Tinnitus brought me here but these events have elevated my purpose in life.

George

 

It has been a while since I have posted here. First, I want to thank everybody who responded to my original post.

I have to disagree with some of the points you make here, sadly.

I will not say CBT doesn't work. It does, but I can tell you by personal experience it works for mild/moderate and STABLE cases, especially. When tinnitus can only be heard in a quiet room or get easily masked with ambient noise, from a logical point of view, it will be much easier to ignore and therefore CBT will work much better, and this is just a fact (I was like this in November/December).

But anyways, let's say severe stable tinnitus, like a 70 dB perceived sound that is 24/7 relentless, can also be treated effectively with CBT, I can still buy that, some people will be able to do it.

But here comes the thing, when you have a tinnitus that grows louder EVERYDAY, spikes with ANY MINIMAL SOUND, spikes RANDOMLY for no reason, and increases CONSIDERABLY everyday in volume permanently, and you also get NEW TONES, some HORRIBLE tones like a subwoofer noise when a jack 3.5mm is not plugged properly or a jackhammer, I can tell you CBT, hypnosis, yoga or whatever, won't work. I am describing one of the worst tortures you can ever imagine, and not even in your worst nightmare you would imagine to be there. And yes, I am describing my situation unfortunately.

I am eating once every 24-48 hours and brush my teeth slowly and gently to spike less. I eat stuff that I do not have to chew. I do not talk at all, not even whispering, I am mostly isolated in my room, to try to avoid spiking. I am mostly not reacting to any of the increases EVERYDAY. Some days I am lucky enough to have my jackhammer/subwoofer sounds in the right ear masked by other low engine tones - mid tones. I feel like I am in a factory, that's how my head feels.

I have other stuff going on like moderate visual snow, tons of floaters, but guess what, is NOTHING, not even 0,000000000000000000000000000000000000000000001% of the torture of my tinnitus.

I sleep well mostly, Some days I have been sleep deprived though, and I am not on any med (just occasionally Melatonin). Sleep would seem impossible with such loudness and such tones, I don't even know myself how do I do it, but it is probably because I am not reacting almost at all, I don't have any panic attacks or any anxiety, and also, my tinnitus seems to get shut down while sleeping (much less in volume) and ramps up fast, gradually, once I am waken up.

Sadly, I am still homebound after 7 months, and I have to wear earmuffs 24/7, because minimal sounds spikes me. So yes, I just hear increasing daily tinnitus 24/7 without relief, go figure out the torture I have. Because for me, even if I do not react, it's impossible to not to feel tortured, it's physically exhausting having to ignore such loudness, with such tones, with increases daily in volume. I have been suicidal, extremely suicidal, but I still have my survival instinct...

One of the posts that motivated me to keep going on and changed my mind of what life is, it's @danielthor's post, where he explained he prefers the known suffering than the unknown death... I fear nothingness, and also eternal hell, but I do not know how much more I can keep going... A lot of days I cry from desperation, when I see how trapped I am into this nightmare, where I can do absolutely nothing but just suck it up and survive if I want to live.

I was about to have a bright future, basically I was in college, I had only 1.5 years more to achieve my biggest dream, and I got stopped because of this damn condition. I studied months for 18 hours a day, I sacrificed my youth to study, to try to achieve my goals, and now I have this. I have no words to explain my suffering/devastation, and it's unbelievable how life can turn around from happiness to the worst nightmare you could ever imagine.

With all this personal experience post, I just want to make clear some cases are just impossible to be habituated to and only a drug/Deep Brain Stimulation or any treatment that reduces volume and gives stability would work to give relief. CBT will NOT WORK, just trying to speak with a psych would spike me a lot, so basically I am trapped in my own body, that's how I feel, like someone with locked in syndrome.

To sum up, as someone who had mild tinnitus, and converted into extremely catastrophic tinnitus WITHOUT REASON (I have been protecting and isolating myself) I can ensure you loudness matters, tones matters, and STABILITY matters (probably the most important).

This post isn't about negativity, I have been positive, a lot of the months, thinking things would turn around and get better, but it didn't, just worse and worse and worse.

For all the anxiety folks out there reading my post, do not worry, it's extremely unlikely you will end like me (basically I'd say the chances are <0,0000000001% or less, fortunately).

Unfortunately I won the lottery of hell, unbelievable.

 

Stability. Without it all this mindfulness, CBT, yoga shit won't work, period. My tinnitus is some of the loudest/worst in the world together with @DocTors_94. Yet when I stopped spiking EVERY DAY or from minimal noise, guess what, I suffer less. Gaslighting truly severe sufferers for not being able to "habituate" to catastrophic unstable tinnitus is what's keeping Jastreboff in charge and research to a minimum. Yes, volume does matter, certainly does. Stability is the most important though.

 

Touching posts from @GeorgeLG and @DocTors_94 above. Please read them. George just wrote another post I consider one of the best. This can be seen from viewing his posting history.

Just a few words as physical pain is in my way to say more. Required thought for me is harder to express than use of memory.

I first got hearing loss tinnitus from a loud ear cleaning process and it was severe. Then I got physical somatic tinnitus - very severe.

I was doing the same when I had hearing loss tinnitus. Now that I have physical somatic tinnitus caused from dental whiplash and cutting of nerves within mouth, I need to be extra careful with brushing teeth as my mouth is very painful.

I'm in serious pain from many health issues related and unrelated to tinnitus. I don't know which is harder to cope with - my tinnitus or the pain. George has other conditions as well.

If one has pain as a child - even a toothache or emotional upsettings of no fault of self, then any discomforts later in life could be harder to deal with. So someone with mild tinnitus could have the same acceptance issue as someone with severe tinnitus.

In development are new ways to administer nerve blocks for tinnitus. We also need safe drugs for tinnitus, pain, anxiety and hypertension.

For some, certain medications may help. To know if a medication may help or make tinnitus worse, I'm in the camp of those who feel that a blood pressure study is needed first. Even a wrist watch that tests pulse and blood pressure will do. If pulse and blood pressure is stable from several readings over a week, then medication may have a less chance of making tinnitus worse.

Magnesium can help tinnitus from getting worse, but small amounts taken several times each day is needed. Liquid magnesium is better than pill - not to exceed 400 mg within 24 hours. Some of us can't take magnesium for various reasons including stomach upset. Taking magnesium one hour before being in a high sound environment including dental drilling may help a tinnitus spike from happening.

I don't have many answers for coping, but I have plenty of thoughts about ways in trying to bring tinnitus down a notch and for those with physical or pulsatile tinnitus there is much that may help.

 

The article is informative and in-line to research.

I would consider Bose noise-cancelling Headphones 700 and try using the 10th of 11 levels of noise cancellation. In time, you should be able to use levels of less cancellation.

https://www.amazon.com/Bose-Cancelling-Wireless-Bluetooth-Headphones/dp/B07Q9MJKBV

 

For anyone who has tried with an open mind and in earnest to get better and who has and will not see any improvement in their condition, then my heart goes out to you and I am sorry for your suffering.

I have incurable cancer that makes me suffer every single day so I know all about winning and losing life’s lottery’s.

But I do not go to cancer websites and try with all of my limited energy to dash the hopes of those who will find a cure or live longer than me. I am happy for them and direct all who ask to their success, as I am losing the cancer lottery. Being angry and convinced that there will be no relief limits healing, what is possible.

On the worst day of my cancer or tinnitus I use these techniques and they always help me. Always. I used them on my wife even as she lay dying in the hospital and they always helped. So much so that nurses watching would be brought to tears. One nurse was so moved by what she saw that she brought her daughter to the ICU to meet us. Don’t be your own biggest limitation, you have more power over this than you know.

The truth is that for every single disease there is a certain percentage that will never get better. This is true, there is always a bell curve and at one tail end is a small set of needless suffering.

As @DocTors_94 points out however, the odds of any one person on this site having that infinitely small chance of an immovable tinnitus condition is well, infinitely small. The study results that I posted still stand. The experiences of clinicians in this field still stand. The “beast” is in part, our emotions about what has happened. We can learn to get out of our own way to reduce the suffering. In some cases we suffer because we are stuck emotionally, we cannot accept was has happened.

We all have an opportunity to get better by exploring the power of our mind and its connection to our physical suffering. Every person here can get some measure of relief. To those seeking relief from tinnitus and its related conditions please explore this process and do not get stuck in a cycle of worry, catastrophic thinking, anger, victim hood or unrelenting despair. It is a self reinforcing negative loop that prevents healing. Do not be passionate about what you don’t want, be passionate about what you do want, it will deliver relief.

The overwhelming majority of tinnitus sufferers lead normal lives and this is in part due to their innate brain wiring, something that you can learn if you do not possess it.

I for one will never give up getting better, not with cancer and not with tinnitus. Life is not about getting dealt a perfect hand, it’s about playing the hand we are dealt the very best we can.

George

 

Hi @DocTors_94,

Wow, sorry to hear of all this suffering, life is so cruel sometimes. I got hyperacusis & tinnitus but not as severe as yours.

Can I ask you how did your tinnitus become so severe?

I can see you live in Spain, so do I. Have you got any help at all any doctor (neurologist etc..) in Spain?

 

I have offered study data from clinicians who treat and observe tinnitus sufferers of all levels of suffering. Since this site is filled with anecdotes as evidence of outcomes, including in this thread I will offer the most powerful anecdote in my 67 years.

As my 54-year-old wife lay dying in the ICU with unimaginable pain not being controlled by the maximum amount of IV Fentynal and oral narcotics, suffering at a level that most of us thankfully will never know, I applied these techniques to her in her hospital bed. I could calm her down and put her to sleep so that she was resting peacefully with no additional pain medicine. Nurses would be crying, doctors would stare with confusion. Words, the mind, thoughts, emotions could do as much as the maximum allowed level of IV Fentanyl for a dying cancer patient.

After my wife passed away, her sister wrote me a letter thanking me for adding time and comfort to her sister's life and said that in her long career as a registered nurse she had never seen such effective caregiving. I know what is possible at the highest levels. I have been working on these techniques for almost 40 years. Don't limit your possibilities for relief. The "beast" is our minds from start to finish. Every bit of this has been made up by our minds. Our minds keep it alive. Make peace with this and accept it, then move on to unleashing your very own healing potential to get relief. You deserve to be happy, healthy and accepted with love and purpose. If you are stuck believing that you have been screwed by the universe to eternal suffering with no possibility for relief, explore why you are stuck. It is literally not possible to know that you have no opportunity for relief after one year of tinnitus. Give yourself a chance for a better life in total. I had chronic pain in the 80's that lasted years and has now been gone for decades. This was my first experience with the power of the mind.

If you are stuck on this, angry, dismissing thoughtful help and hurting people who are trying to get better there is much work to be done young Skywalker. I used to be angry and pissed off about my health problems and it prevented healing. Knowledge is power and healing. Love and kindness is healing.

George

 

No, it's because they have stable tinnitus that doesn't spike permanently from softly closing a door. We don't need toxic positivity, we need effective treatments.

 

@GeorgeLG, I wonder if you having cancer, perhaps knowing subconsciously there is an end or knowing you can pull the plug when things get bad enough, may be making things easier to deal with? I did mention in another post that I can tell you truly want to help others unlike our resident bully.

I am in the middle. I don't feel so hopeless. I move on with my life but yet I suffer greatly on some days.

I did the 8 week MCBT course. I use some of the techniques but they do not really do much overall. I do believe there is a psychological angle to it.

I do not fear hell. I believe there will be nothingness.

Like I always say, I rather party with red skinned strippers in hell fire!!!

 

I am sharing techniques that I have personally experienced for me and my loved ones for tinnitus and terminal cancer at pain levels that are unspeakable to help people.

"Toxic positivity" is really digging in man, that's some epic resistance to change and knowledge. You have some energy and a strong will, that's a good start.

I respect where you are on your path and you will have to travel this road in your unique way but today there is no "cure". The universe will not deliver the redemption you seek and right the wrong that has been randomly delivered to you. Not at this moment anyhow. You have to get involved, to own this, to accept this and then to deal with this.

I am offering you a path to be involved in your healing, to make you better. In life we do not always get solutions delivered to us without sacrifice or work making all of our problems go away. We have to be involved, we have to be part of the solution.

I didn't ask for cancer or tinnitus. When they were scanning my body last fall for the unrelenting progress of my first terminal cancer they found a new cancer covering my heart and slowing preventing me from breathing. I did not ask for this, the cavalry has not arrived to solve my problems for me but yet here I am, recovering from my second surgery, getting back to my remaining life and offering hope to those affected by this illness all with tinnitus screaming in my head. The three days of ototoxic drugs and screeching monitoring machines has delivered a devastating setback but now I can breathe properly and now I can get back to healing and to come here to help others.

I type this with headphones and foam earplugs so that the pain of my computer fan does not prevent me from trying to help people and to heal. Trying even to help you, as you criticize my work.

We should seek to be in the service of others, to leave this place better than when we got here. It's better for us personally and it's better for others. Toxicity is indeed real and it prevents healing and it hurts other suffering human beings. It is part of the "beast".

George

 

@Greg Sacramento, thanks for your replies. I ordered liquid glycinate magnesium, I wish it can give me at least a bit of relief, it would be amazing. Unfortunately I do not have the money to buy noise-cancelling headphones.

@GeorgeLG, I feel called out when you said "But I do not go to cancer websites and try with all of my limited energy to dash the hopes of those who will find a cure or live longer than me. I am happy for them and direct all who ask to their success, as I am losing the cancer lottery. Being angry and convinced that there will be no relief limits healing, what is possible."

I think I haven't posted on this forum for 2-3 months, the last post I made was about a DBS trial in France. So I do not waste the little energy I have to live coming here posting "negativity". I made it clear before, I have been positive for MONTHS, each day I went to sleep thinking tomorrow my tinnitus will get a bit better or plateau, but no, just worse. I know you don't have bad intentions, I know you want everyone who is suffering to such degree, to have relief. Believe me, I want the same, I do not want to suffer anymore, and I do not wish this on my worst enemy.

I want to also make it clear, I do not want to tell people CBT will not help them, for sure some will get helped by it, some will not, and others like me will just think CBT is an insult when you are suffering to such a degree. Just how are you supposed to tune out jackhammers, bass notes, low engine drones that are 24/7 at music volumes and you have to wear earmuffs 24/7 because if you take them off you will spike instantly. Put on headphones, at 90% volume and listen to these sounds altogether on a YouTube video and just try to even hold it 10 minutes... You will see the hell I am living every second...

Furthermore, 3 weeks ago I took off earmuffs after waking up just for 10-20 seconds because my ear was hurting so I wanted a bit of relief, and I heard a bird chirp in the distance (with closed windows), it probably was 30-40 dB maximum. After that I put my earmuffs back and guess what... The bird chirp stayed as tinnitus, and I still hear it. Yes, unbelievable. I thought the same, this can't be happening... And this is the LESS ANNOYING TONE, like I could live with this bird chirp without issues, I just want to give a perspective of HOW DAMN BAD TINNITUS can get.

I believe the mind can be really powerful and can make you cope with conditions without treatments/cure, but I think everyone has a limit... That is my true and harsh opinion. And I am not limiting myself with negative thinking, I doubt anyone would be alive with my torture at this point, and I am still living for few reasons, and if I was negative or I had clinical depression I am sure I wouldn't be alive today. I haven't heard of anyone, literally ANYONE, living properly with such tinnitus as mine, just because it is impossible.

But I want to make it clear, I am not against you and I am not against ANYONE. I call CBT and also TRT useless because they are not true treatments, they do absolutely nothing for volume/tones. So calling these things treatments just makes clinicians or other professionals think they are helping out people and that nothing more has to be done, when in reality there's tons of research that has to be done in tinnitus area, urgently.

If you aren't one of the unlucky ones as me, you will be able to live your life full with caution (protect your ears from loud stuff) and with almost any level of tinnitus, I think. But stability is key, if you don't have that it's game over and you are just into survival mode 24/7.

I also wanted to add one thing, some clinicians who work with tinnitus are just people who gaslight severe sufferers for being negative. I hate those kinds of professionals, just like Jastreboff, who calls the people for whom TRT (which we all know already a Cochrane Review showed works the same as standard of care, so basically it's just the same but +$5,000 for Jastreboff) doesn't work "white flag wavers". Just how can a scientist be SO confident his treatment does work when he clearly knows it doesn't + you know in medical field EVERYTHING is possible. If there's someone in this planet who I hate, it must be him.

Also, many "severe" sufferers are not really severe volume wise (they can probably mask their tinnitus with little ambient noise), and they overexaggerate their tinnitus, or they are extremely distressed emotionally, which can be successfully managed with CBT. So I do not trust fully those studies. Unless they provide data like minimum level of masking, number and quality of tones... And not even then is fully reliable... We should wait for Bionics Institute from Australia to have truly reliable studies. And my guess is we will see how useless CBT is in extreme cases like mine or catastrophic stable cases, and that's when researchers, hopefully, and medical field will start moving faster...

Again, I am not saying do not seek for help, or treatment, or that CBT will not help many cases to recover their quality of life. But clearly in my case, and many other extreme sufferers, even 1 session of CBT would make us catastrophically worse. And honestly I am applying CBT on myself each second, I literally have NO panic attacks, but I still suffer physically, despite trying to ignore this hell's orchestra... So basically I am stuck.

@Diego LR, hi, I forgot to update my case, I had tinnitus since 2016 or so, I could hear something like a slight hiss or something, sometimes, in dead quiet room and with earplugs... I have never been bothered by it because it was probably 0,00001/10, like I needed to look for it and I didn't know if I was imagining things or what. It probably came from noise exposure, because back then I started listening loud music on earbuds, and playing guitar...

I basically couldn't hear it around 2018-2019, not even looking for it so I am almost positive it probably disappeared. I have been using earbuds, but much less these last years, occasionally during 15 minute trips with the subway when going to college. I never thought I was killing myself slowly as my tinnitus did not spike at all or appear these last years, it was all normal, I didn't know I could make things works, for real, I didn't. I wouldn't have risked a penny if I knew what tinnitus is and how bad it can get... I also used to game on headphones occasionally, but I would say I had it on moderate volumes. But seems that was enough.

After some benzo withdrawal and a surgery in November 2021 my tinnitus spiked (new tone emerged), I went to the ENT, got a microsuction (it was so damn loud, I told him to stop but he kept doing it ) which maybe started the instability and the worsening cycle... I was protecting all the time my ears from loud noises with earplugs (with this I mean walks through the city or in the subway) and I avoided earbuds and headphones (in fact I was using them very rarely since summer). In December I started to isolate myself from noise since I was worsening everyday during November, so I thought I needed absolute silence. I have been since then homebound to no avail, just worse and worse and worse and worse.

I haven't been to a concert in my life and the last time I went to a nightclub was 3 years ago (I went probably 10 times at maximum in 27 years of life). I went to a bunch of ENTs to no avail. I tried to go to a neurologist last week. I spiked from shaving gently and I had to cancel the appointment. They will most probably be unable to help me. I am doomed.

As I am writing this, my left ear's high pitch beam started spiking and it's at fleeting tinnitus levels, for no reason. I am just exhausted, exhausted of suffering like a pig without relief. Everyday is waking up to suffer.

 

I suffer with you brother, my bad days are shit. I like your attitude. Today is another day where the universe is just going to have to kiss my ass.

I was born with an unrelenting will and drive to keep going. I want to live to be 150 if I can. I love life and I never give up. My work here is because of my dear departed wife. She was an angel on earth and she taught me to be in the service of others. I am here in honor of her selfless caring and limitless positive attitude. Yes having terminal cancer changes everything, losing your wife to cancer changes everything. Losing every single good friend to cancer changes everything. But it did not make me feel fatalistic, it has not given me an out, a trap door to escape my lot in life. It has humbled me and given me a perspective on how precious life is, how precious every good day is. To never waste a good day. For all my suffering and loss I will be forever thankful for the awesome experiences and relationships in my life. I will most likely not live another decade and those last few years will not be as good as the first but I will use every single good day I have to the maximum possible effect.

George

 

@DocTors_94, I am not trying to call you out specifically and I understand your suffering, the frustration, and the feelings of helplessness that this can bring to us. I did appreciate your comment about the small chance of others having the worst possible version of this.

There is dismissal everywhere in life as people get confronted with things that they don't understand, it's human nature, even with doctors. They don't want to add anything new to the basket of uncontrollable possibilities in a fear based life or to be embarrassed about their lack of knowledge or skills. I was just told this week, oh I have that, it's nothing. My reaction was that I am glad that her tinnitus does not affect her life. I have no idea what it sounds like or how loud it is or how unstable it is. I am glad that she is not suffering. She is a very positive person who has buried two husbands, she knows loss. I try to learn from her attitude, not try to get into a contest of who suffers more.

Lack of stability equals additional lack of control. We can't control everything in our lives. A friend with terminal cancer once asked me "why me?". I responded "why not us". The universe did not single us out in some galactic game of cruel punishment. It's random and it's just us. We have to work the problem. We went on to have a really nice day.

George

 

Words of a stable mild case. It doesn't affect her life because it's stable and mild. We cannot have that attitude no matter how much we strive for it because we are not stable and mild.

 

I will let people far more powerful with words than me help to reflect on what has been said here:

“Suffering becomes beautiful when anyone bears great calamities with cheerfulness, not through insensibility but through greatness of mind.”

- Aristotle

“Too much self-centered attitude you see brings isolation. Result: loneliness, fear and anger. The extreme self-centered attitude is the source of suffering”.

- Dalai Lama


“We shall draw from the heart of suffering itself the means of inspiration and survival”.

- Winston Churchill


“People have a hard time letting go of their suffering. Out of fear of the unknown, they prefer suffering that is familiar”.

- Thich Nhat Hanh

George

 

I have no idea what she hears or how she copes, none of us do. You have never even met her. She said it was much worse when it started with the stress associated with the prolonged illness and death of her husband and scared her quite a bit at the time but that she has mostly recovered. She now uses a sound generator to sleep at night. I never asked her what the depth of her suffering was in the beginning. I don't know how much she had to overcome but she is a positive person and has overcome a lot in her life. She has buried two husbands and lives alone as a grieving widow.

The severity of any case is a combination of the sounds and how we react to those sounds. The entire thing is made up in our brains which we have influence over and comparing each other has no value. I can never hear and fell what you experience. All I know is that you suffer more but I don't know why. I know that your reaction is not mild but I dont know what you hear. My recovery has nothing to do with where you started or are currently. All I know is I want to get better and I can get better and that millions get better all over the world.

"The seed of suffering in you may be strong, but don't wait until you have no more suffering before allowing yourself to be happy."

"Pain is certain, suffering is optional."

George

 

I just want to thank you for your reflective and insightful posts on this thread (and on this forum in general) @GeorgeLG.

It's a fresh asset, especially given your own struggles.

Stay strong - and keep working and believing towards better days!

 

Thank you @MindOverMatter. I appreciate your kind words of encouragement.

George

 

I almost never catalog these details but in the spirit of helping you understand what is possible for you:

In reaction to 75 dB sounds at just the wrong frequency I have severe stabbing pain in my ear, jaw, neck, like from acid. A burning that radiates into the center of my brain. Throbbing migraine headaches and nausea. My tinnitus is like a jet engine on steroids most days. Chemo has given me severe joint pain, fatigue, light sensitivity and horrible nightmares with only a few hours of sleep most nights and the loss of my wife just about did me in. My heart would go from 50 bpm to 160 bpm with terrible arrhythmia, blood pressure at 80/50 and passing out - while she was dying and in the horrible weeks that followed. What I watched in the hospital is not fit to post here. There is more but this is not a contest.
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My challenges have not been stable or mild, I have lived through hell, fucking hell. This shit makes me stronger and more determined. I will get the very best out of every day no matter what the universe throws at me. Cancer and tinnitus can kiss my ass today and almost every day. The people around me tell me that I am the strongest and most positive person they know, even with all of this. Yesterday my mother-in-law called me a miracle and said that I have overcome impossible obstacles and odds and thanked me for giving everything I had to take care of her daughter. 24/7 in the hospital for 11 straight weeks. This post is necessarily focused on me because that's what I know for certain, what I have been through.

You can have a better life and I am trying to help you get there but man you are fighting me with both barrels. You are really stuck. You should ask yourself why you need this so much. No judgement brother, I was where you are in the 80's with back pain so debilitating that I would spend weeks at a time on the living room floor working from home all doped up on pain meds and hopeless for recovery. My wife and kids used to have to carry me to the car and emergency room multiple times per year. This is when I first learned about the power of my mind over illness and suffering. I built a wooden fence with a sledge hammer and post hole digger carrying 90 pound bags of cement a month or so ago, one month after major thoracic surgery to remove the biggest tumor that the surgeon from Mayo Clinic has ever removed robotically. He is going to present my case at a medical conference. I am 67 years old. You possess more power over your suffering than you will accept right now. Give yourself a chance to get better. This is what I wish for you.

Respectfully,
George

 

I could have had wrote this. The same:

My sound sensitivity improved, but not so much tinnitus by playing a bubbling brook on my computer in a kitchen sitting area with volume of 25 decibels. I then went into the bedroom with noise blocking headphones off for just 15-20 minutes. I really could not hear the bubbling brook in the bedroom, but my ears must have picked up some sound as doing this routine twice a day for two weeks made my sound sensitivity improve and my brain stopped recording sounds. I also used gentle rain sounds when I had hyperacusis.

 

George, I preface this by saying that I have great respect for you, for what you went through, for how you handled the care of your dying wife, for your approach to life more generally, and for your personal suffering.

Unfortunately, your thread is turning into a copy of the other one, Unleashing the Power of the Mind to Manage Tinnitus? | Tinnitus Talk Support Forum.

This has been a recurring discussion here for years.

I started from your side, but unfortunately after years of continued worsening and torture, merciless 24/7 torture, I had to humbly accept that people like @DocTors_94 and @AnthonyMcDonald are right.

On the other hand, think of people who haven't made it. Think of Gaby Olthuis. This poor woman stood her ground with impossible fortitude for years and years, she was down to living in a letter stamp, as she put it, because her hyperacusis was so bad and the tinnitus so maddening she eventually couldn't go on anymore. Do you seriously believe that a mother of children with her willpower would have gone that way if any alternative were possible? If mindfulness or CBT worked? If your soothing techniques worked universally? You would be disrespecting her, her memory and her suffering if you claimed this.

So my friend, I'm sorry, I appreciate your positive attitude, I have great respect for you, but quoting Thich Nhat Hnan or the Dalai Lama is not going to work. I told the story in the other thread, but even a mindfulness expert (not a wannabe who becomes a mindfulness therapist with a 6 months MSc) who studied in India for years said there are levels of pain that cannot be helped by mindfulness, unless you are wired like the Dalai Lama. I think the same extends to hypnosis and CBT.

We are probably the 0.1% of cases but we exist, our pain is valid, our desperation is real, our impossible suffering is real, and there is no amount of mindfulness or CBT that can help us significantly. I was an expert meditator for years, you can read my exchange with @StoneInFocus (great guy) in the other thread if you are interested in the details.

But we need a cure for these atrocities, and we need them yesterday, or a few people will continue to die, and it's not their fault, and they will not be saved by CBT or ACT or mindfulness, radical acceptance and the likes.

With respect.

 

It's really great to hear this positivity from you.

We can all feel like there will never been any joy in our lives again but it's important to at least try to keep a positive outlook.

Still working through many issues myself.

Thanks for the kind words.

 

@GeorgeLG, sincere thank you for your post. I rarely post but just wanted to express my admiration for the strength and resilience you've displayed -- and your willingness to share your story in the spirit of helping others. It's inspiring.

I'm about 14 months into my tinnitus journey and the noise hasn't subsided one bit. When I was first struck with it, it was horrible: I thought it was the worst case ever, heard it everywhere, couldn't sleep, vomit-inducing BPPV, etc, etc, had the same initial response as most other stories I read on this site. I spent countless hours on the internet trying to self-diagnose and figure out what caused it. Threw any and all resources at it I could: Had X-rays, CAT scan, MRIs, EEGs, hearing tests, physical therapy, massages, chiro, acupuncture. Also tried, in roughly sequential order, vitamins, teas, alternative medicine, meditation, sleep meds, benzos, SSRI, stronger meds, new technologies (e.g., sound generators, Neosensory), CBT, and more. Nothing worked at the time.

About 8 months in, I took a step back and reexamined everything since it was making everyone and all that I love miserable. How was I going to live my best life in spite of the tinnitus? I stopped trying to figure out why I got it. Reengaged in mindfulness, gave my sound generators another shot and tweaked the settings, signed up for a CBT app, and vowed to put myself on a path toward recovery.

How am I now? Tinnitus is as loud as ever, but I'm getting better. Basically, my response to tinnitus is better. I got off all meds via a 3-4 months tapering process. My sleep still sucks, but I feel better trying to heal naturally. There are days that I still struggle, but I'm working on it daily and feel like I now at least have the tools to live my best life.

Frankly speaking, I get sad and sometimes frustrated by what I read on the site. For example, in this thread, which I perceive was authored with the best of intentions, in no less than a few hours (and sadly in Tinnitus Talk fashion), negative responses immediately followed, even inconceivably accusing the OP of "toxic positivity." But, I can sympathize with the despair those respondents are going through that perhaps sparked them to retort so strongly, as well as the despair I read from many new posters who join the board looking for answers upon first onset. I was there as well last year, angry and hopeless. Over time, getting in the right state of mind and mindfulness worked for me. Those of you in the 0.1% who claim to be unable to be helped by all this -- I'm not going to try to convince you otherwise, I'm just sorry for you, I really am.

For those other 99.9% sufferers, maybe some of these techniques mentioned by George will work for you. In response to those 0.1%ers' claim that it hasn't "worked," I would say that it isn't something that is done for a finite period; it should be an ongoing practice. For me over the past many months, I've dabbled in many different mindfulness techniques from full-on monk-like hours per day to a simple 10-20 minute per day via Calm or Headspace. Since I've resumed my life, I find the latter is sufficient. In hoping for a "cure for these atrocities," the hard truth is that it ain't coming. As I understand it, "cures" in the pipeline will only reduce the perception of tinnitus, and that ain't happening in anyone with a negative mindset no matter how miracle the drug is.

Anyway, I felt compelled to draft this as a parting message of sorts. I originally joined Tinnitus Talk hoping to read posts like OP's, but often caught up the negative ones where folks seemingly instinctively shit on anyone who has a positive experience, or worse spew vitriol at one another with personal attacks. Reading those made me feel worse and did more harm than good to my own personal recovery, yet I often would come back like a fool. Hopefully, my post will help at least one reader, but for my own mental sake, I gotta bounce.

 

@tofurky, thank you for taking the time to write your story.

George

 

@SmallRonnie, thank you.

George

 

There would be so much to say about these two lines, but the OP said a lot already.

Yet, please, take a minute to re-read what you just wrote, then re-read the OP's posts. Maybe you will find something beyond the words that resonate within yourself, even though it might sound unpleasant.

I will not go over the details of my case again, you can find it in other threads and I believe it's becoming a bit sad to have to justify your own catastrophic case to be heard.

All of you who are in a dark place can get out of it one day, with or without a cure. I just wish you knew that too.

Stay strong

 

To @tofurky:

I suggest you look up the word "gooberish", since its meaning is fully applicable to you.

 

@Chinmoku, I am sorry for your suffering and I am sorry for others who could not find relief. I know suffering and I know how frustrating it can be. I know your pain is real.

I have done my best to bring what I believe can and will help others and it is my hope that at least a few people will be helped by what I have offered. To those who read this that are on their journey please know that the worst cases of desperate tinnitus are sad and unfortunate but a small number and in all likelihood will not apply to you. For most there is always hope and a path to improvement. Grieve for these unfortunate souls and move forward.

I hope that something eventually helps you find relief. There is beauty everywhere, even in pain.

George

 

OTO-313 plans on reducing receptor hyperactivity in the cochlea. Susan shore's device also plans on reducing misfirings of the fusiform cells in the DCN. XEN-1101, a much safer reformation of Retigabine (which silenced some people's tinnitus) aims to reduce neural hyperactivity. How is this in any way related to perception?

With all due respect, our claims aren't without reason. There are no personal attacks here from us. Our despair is quite different and should not be grouped with those who have first joined with initial onset anxiety, as awful as it is. Yes, I first went though it as well. I had tinnitus that I could "hear" everywhere, and after some months I really did get better mentally, despite tinnitus not changing. Then I was plunged into the 9th circle of hell with daily worsening and hyperacusis that wouldn't allow me to breathe. So I fully understand what it means and how to adapt to loud unchanging tinnitus. I did not, however, coach others who I knew to be much worse than myself on how to improve, knowing full well that what has helped me could not work for them, as they were on another level entirely.

I'm truly glad that you're getting better and I do truly understand what you went through. But do you spike permanently from low level noise? Does your tinnitus permanently increase for no reason every day? I really, really don't understand how anyone can possibly relate to us, knowing well that this isn't the case for them?

I understand that you & others have good intentions, but is it that hard to realize that there are some cases where this, yes, even persevered, CBT and mindfulness doesn't work? Why is it so hard to realize that this can be the case? Mindfulness being considered a cure to tinnitus has pushed back research by decades. Yes, the vast majority of people will never be bad as us, and I hope they do understand that and don't give up hope. But that does not mean that catastrophic unstable cases should be pushed to the side, as little as there are.

@Chinmoku has made a very good point with a very well organized reply. Why has everyone seemingly ignored it? Cases of constant permanent worsening cannot be grouped together even with severe, stable cases. We are, unfortunately, without exaggeration absolutely the worst of the worst.

Does Dr. Hubbard, who advertises CBT to have basically cured him, say that he permanently worsens daily? No, he does not. He can play the saxophone without spiking. CBT and mindfulness certainly can work, but it does not work for everybody. Why is this so hard to understand? Why is it that whenever someone says it doesn't work for them the reply they get is "you're doing it wrong", or "haven't done it long enough"?