Please Don't Say There's No Cure for Tinnitus

Who I am today.

The posts that I write in this forum.

Loving, caring, and motivating people is all because of my afflictions.

I am thankful for the lessons and hope to still motivate others...

 

Many of us know exercise is good for the body and mind. I agree with @fishbone that we are all different and therefore, someone that has tinnitus with or without hyperacusis needs to assess the gym environment for themselves, to see whether they are able to cope with the inevitable noise that's going to be created from people using exercise machines and weightlifting equipment.

I believe anyone that has tinnitus with or without hyperacusis should think carefully before attending the gym, as they risk making both conditions worse. At first everything may seem fine but gradually over time things can change especially if the tinnitus is noise induced. I understand the gym can create camaraderie and enthusiasm among those that attend which can help a person achieve their goals, something that is amiss in the solitary environment of one's home. One will have to consider these pros and cons because the sobering truth is, once tinnitus increases and this is sustained for a period of time, it seldom returns to its previous baseline level.

Alternatively one could buy an elliptical/cross trainer machine to do cardio exercise at home and possibly weights too. The home environment will be much quieter and have low level music playing in the background whilst working out.

The elliptical machine prevents the feet coming into contact with the floor so impact underfoot doesn't occur. Hard impact underfoot can travel up through the legs into the upper body towards the head and has been known to cause irritation to the inner ear. Some people have noticed a temporary spike or gradual increase in their tinnitus when doing strenuous exercises when the feet regularly impact with floor.

Michael

 

At some point I saw you mentioned that for 37 years you have been involved with pain management technics from an emotional reaction point of view, that can also be applied to tinnitus. I would like to learn more about this, would you be able to share some resources for someone new in the topic? Books/courses/institutions/locations/etc. The focus here being tinnitus management. How did you get into this originally and how come you had formal training in this?

Thanks @GeorgeLG!

 

@tniuf, my first experience with these concepts happened in the '80. I had debilitating back pain and panic attacks at the time. I heard a guy on the radio talking about a medical doctor that gave him his life back regarding his back pain, all without surgery or pain meds and he was very grateful, so I bought the recommended book:

The Mindbody Prescription: Healing the Body, Healing the Pain

This book then did the same thing for me. This doctor was successful at helping people manage chronic pain by educating them about the mind body connection. He has some books that are more general than just back pain. I also read this one which briefly touches on tinnitus:

The Divided Mind: The Epidemic of Mindbody Disorders

I also read this guy's summary on the work of Dr. Sarno:

Dr. John Sarno's Top 10 Healing Discoveries

So even though we are not talking about tinnitus at this point, I learned that our mind has a very powerful connection to the body regarding pain, anxiety, etc and that we have control over this. Our emotional reaction and how we focus on chronic illness can have a profound effect on our health both positively and negatively. Hyperfocus, destructive feedback and reinforcement loops, manipulating our body chemistry, etc.

Years later my wife and I went to Minnesota multiple times and became certified in Qi Gong (an ancient Chinese healing method), by a master from China. There is a lot of overlap, quieting the mind, visualizing healing, ... I read this guy's book and then went to my wife and said, let's go to Minnesota. She said what's in Minnesota and I said healing. This was the first book:

Born A Healer: I Was Born a Healer. You Were Born a Healer, Too!

What I have learned is life is suffering, it's unavoidable. Although some of these things may not be completely healed, we have much control over how chronic problems affect our lives. Some people just naturally blow off things like tinnitus but some of us need some training. I am an engineer who developed OCD from childhood trauma. Professionally this was a plus but not so much here. When things like chronic back pain or tinnitus show up my tendency used to be hyper focus, catastrophic what if thinking, constant obsession and fear. These techniques have taught me how to break that loop and reduce suffering significantly. When my wife lay dying in the ICU, the pain was unbearable and when even the maximum allowed IV Fentanyl was no longer controlling her pain, I would ask the nurses to leave us alone and I would perform Qi Gong on my wife and 3 minutes later she would be peacefully sleeping. One time I looked back and two nurses had been watching through the nurse station window and were crying. One of them brought her young daughter to meet us because she was so moved and said that she had never seen such caregiving in all her years in the business.

Next up was tinnitus. After this started I came here. I was reading a thread when the person mentioned Dr. Sarno (above) and I thought holly crap that's the 80's guy and while I was thinking this, my tinnitus went completely away for a few minutes. Then I thought, same basic concepts so I need to get back to work. So I started reading threads along these lines and wound up studying Back to Silence and two of Jack Rubinacci's books.

I also read Julian Cowan Hill's book but let's not go there or the flamethrowers will completely derail this thread.

I have accepted tinnitus, I assume now that it's never going away but it does not bother me anymore. A couple times a month it's so loud after the shower that it takes a couple hours to fall asleep and every so often it's so loud that I think holy shit that's loud but I don't care anymore. So then it was on to the pain hyperacusis, which is a much more stubborn beast. Shooting pain and burning in my ear and up and down the side of my head and neck, burning in my brain like acid. These techniques made it way better and got me back into the studio on a limited basis. I also combined the only useful thing my ENT told me (TMJ) with some input from my chiro (forward head posture) and I am working on my posture, which is also helping.

So why does all of this apply to tinnitus even if its roots are in pain management?

Because I see many parallels in the threads here for many (not all) people:

• Hyper focus
• Daily obsession
• Reporting, counting, labeling, comparing
• Going into quiet rooms looking for it if it goes away
• Comorbidities with depression and anxiety, OCD, trauma, abuse
• Anger, fear, rage, cant let go of the thing or person that caused this
• Constant comparing, frequently declaring mine cannot be fixed
• Anger at those who report progress
• Catastrophic what if thinking
• Panic and runaway fear

I have been almost every one of these things so I speak from experience, not a perspective of judgement. No one "treatment" will ever apply to everyone, including the things that I use but I believe that what I have learned over the last three decades can help many people so I come and try to use what I have learned to help.

George

 

Oh boy sounds like some amazing advice for mild tinnitus lol

 

How do you know my tinnitus is mild? You can't hear what I hear. You can't feel my ear pain. You can't experience my isolation and suffering. Same in reverse. What we know is that some like me and others here can improve in spite of their suffering or the reason for it and you have not been able to improve. We have no idea how the initial severity and stability compares. What if this has absolutely nothing to do with the initial level of sounds and variations? What if that is not the limitation that binds you to daily hell and no improvement and constant suffering? What if you have a need to construct this artificial barrier that places you in the penalty box, that your limitation to healing is created entirely by you? What if the root cause had nothing to do with tinnitus? What if you could get better?

That's what I hope for you, that you decide that you can and should get better and that you do. I am sorry for your suffering and I am here to help you if you ever want help and want it from me. If that's not gonna fly, then please get some help to deal with this from a trusted source, you don't have to suffer like this and then come here to dash the hopes of desperate people looking for relief. Something besides tinnitus is bothering you. If you can address that, then you can get better.

If you don't want to get better, I was responding to someone asking for my help. If you don't agree with what I say, then why are you here, why don't you hang out in the giant threads of like minded people? Why come here to hurt people?

I love you brother but you are really stuck.

George

 

I don’t think @GeorgeLG has mild tinnitus lol.

 

Still gatekeeping I see... I consider my tinnitus to be very severe and I think a lot of what @GeorgeLG's saying here is solid.

Is this the part where you tell me that I'm actually mild now?

 

I beg to differ regarding your above comment.

There are approximately 800,000 Vets who are on permanent disability from this (and believe me, it has to be pretty bad for the Government to rubber stamp such an application).

On Memorial Day CNN reported that on average one Vet per hour has commited suicide for the last several years (about 8,000 during the worst year).

Given how pervasive tinnitus is among the Armed Forces, to what degree did tinnitus play a role in their decision that life was not worth living under these circumstances?

During last year's block party a neighbor saw me wearing sound blocker headphones (which, given my desperate state, is more like a totemic talisman than anything else). She mentioned that her 70-year-old cousin has this so severely that he is an absolute recluse. I find it incredible that, all you have to do nowadays is bring up the subject and someone will know someone who has this condition debilitatingly.

So many firemen have had to go on permanent disability from this that (at least around here) wearing those sound blocker headphones in the fire truck cab is mandatory.

I personally know four men around my age who will admit that this has in some irretrievable way deformed their personalities.

11 million Americans have jobs that expose them to dangerous levels of sound; how many unbearable manifestations of tinnitus will this produce?

It is still an incomprehensibly underreported malady; given the above, it should be given the concentrated attention that terminal illnesses are shown.

 

It's a big problem and there is a lot of suffering but the denominator is 1 billion. Most discussion here and papers cited talk about anywhere from 1% to 15% of tinnitus sufferers with debilitating disease. The most afflicted here call themselves the 0.1% club. I understand how personal this is to you and that for you it’s 100%. In my mind this makes both things true. Most people are not severely affected and many people suffer.

We need to keep working on this as a society and protect veterans and first responders. In addition all occupations with a high propensity to depression and suicide need to offer all the appropriate assistance there as well. We also need to offer relief to as many as we can here and anywhere else sufferers come for help. From an anecdotal perspective, I know dozens, maybe hundreds of people suffering from depression, cancer (many terminal), devastating autoimmune diseases, debilitating arthritis, etc. I personally have never met a single person with debilitating tinnitus or hyperacusis.

I presume your reaction to my comment is because you believe we have to keep the pressure and focus on this affliction and comments like me saying most are not affected offend you because you believe that I will singlehandedly reduce research into curing tinnitus. Only 3% of men with my type of cancer die from it and I am in the 3% club, I just became stage four last year. I say all the time that most guys don't die from my kind of cancer but they're spending billions in researching the crap out of it. The research dollars go where the ROI is. What guys like you and me say about this on this forum will not affect the worldwide aggregated research dollar allocation. In the meantime I'm just here trying to help people with what I know.

George

 

Hi @AnthonyMcDonald, you once asked me this.

"Hey Greg! I've seen many of your posts and am very grateful for your reply! You're a legend here.

I do have a slightly herniated C3 - C4 disk as well as osteochondrosis and some small growths to the side on my spine. Is there any way to treat this condition? Can cervical spine issues also cause hyperacusis? As I suffer from moderate hyperacusis.

Cheers."​

When a patient in our trauma ER complains of long term severe tinnitus/hyperacusis, we conduct proactives. Many considerations beyond blood pressure and audiogram. One is examination of efferent and afferent neurons - various types that form the motor and sensory parts of the peripheral nerve, and vice versa. Neck is also considered even if it's believed that noise was sole cause of tinnitus.

One of the first questions asked is do you remember having pain, sickness or injury as a child - much physical discussion with that. Those with severe tinnitus often had physical pain from an illness or injury as a child.

Osteochondrosis is a family of disorders that affect bone growth in children and adolescents. The disruption of blood flow to the joints is often the cause and this alone can make it easier to get or be part of noise-induced tinnitus. Scheuermann’s disease, or juvenile kyphosis is sometimes found. This condition affects the intervertebral joints of the spinal column. These are the joints between the bones of your spine. Osteoarthritis and inflammation can set in. I remember you once saying that sometimes when you move your jaw, your tinnitus goes eeeee - or something close to this.

You could have severe tinnitus from this and coping would be difficult.

Regular strengthening exercises and stretching can help keep your bones, joints, and muscles strong. Complete everyday activities in safe ways. Maintain a tall posture to prevent back and neck pain, be careful when picking up heavy objects, and try to keep repetitive motions to a minimum. Not to sit in same position all day. Occupational professional treatment may help lower your tinnitus by 10% - 50%.

--------------------------

To me, showing compassion and understanding to those with more severe tinnitus/pain is not to say improvement will happen, but to show emotional support and physical treatment ideas. I don't see anyone on this thread being unreasonable. Love to all.

 

You are a very positive soul, @GeorgeLG, and your positivity is a massive quality and an invaluable asset on here. Thank you.

 

Any chance of recovery for you? I hope.

 

I have had all of the treatments that have the potential for cure and they all failed to stop the cancer. I am currently on treatments that slow it down but do not stop it. You never know what the future can bring because they are always working on new things but that cure does not exist today for somebody in my position. My second cancer which was discovered last fall is a better story so far. The surgery in February was successful and the first surveillance scan shows a clean surgery bed. The physical problems that it was causing (breathing and heart arrhythmia), have gotten much better. That one may be cured, time will tell. Next scan is September. I appreciate you asking. Cancer is a whole nutha beast which will test you. It starts taking from you long before the end. That said, I have had a great life with many things to be thankful for and I will get more good days out of this life, as many as I can put together.

To answer @Ava Lugo, we can all still find beauty in life, if that's want you want. Have passion for what you want and that helps you get there.

lol

George

 

Thank you so much, this made my day, another good day.

George

 

I never said you have mild tinnitus, where in my comment do you see that?

No.

I do not think he has mild tinnitus.

I should have rationally explained my opinion, as my comment may have seemed like I am "gatekeeping".

Here is my humble opinion:

1) Hyper focus is not something that people with severe/catastrophic tinnitus can even have an issue with. It does not matter what you focus on, because the tinnitus is so horrendous that focusing on something else is not a viable option.

2) Same thing with obsession. OCD isn't the issue here imo, these people can't not be "obsessed" with their tinnitus because it causes such insane suffering. Or is @Chinmoku obsessed and hyperfocusing on his tinnitus? I have pretty bad OCD/chewed nails always, and at onset I was having a very hard time even with much quieter tinnitus. But I eventually adjusted. What I had in February does not even remotely compare to what I had in the beginning and my OCD had no part in my suffering.

3) Going to quiet rooms does not matter. It is the same in quiet rooms as it is outside or for example on the subway (I cannot take the subway because of hyperacusis, but I know some who have it like this) is this perception? I honestly don't think so. If I needed to go to quiet rooms to check my tinnitus I would consider myself cured.

4) Depression and anxiety and fear certainly has a major role in tinnitus, but I have heard "depression and anxiety" so many times when gaslit by Doctors or seeing my catastrophic friends gaslit by Doctors for suffering with catastrophic tinnitus that I do not like these words at all, so many suffering people with catastrophic tinnitus are told its their perception, depression and anxiety.

I do respect you @GeorgeLG and your positivity. But I do not think this above advice can apply to someone with severe or catastrophic tinnitus. Cheers.

 

I agree with majority of what you said. I think George is just trying to offer what he can to help. Yeah it’s not going to help 99% of severe folks, but it may help the 1% like him. I don’t know.

 

Wow that’s a bummer... I don’t know how you find comfort and joy but you do. I can’t even imagine to be in your shoes, how much suffering you have to endure while still remaining positive. Let’s hope for a hail Mary here...

I think we can all take an outlook on life the way you do, it’s pretty inspiring.

 

If there is no value for you in what I or others like me offer, if you do not see that it can apply to you then I am sorry that I cannot help you.

People are here communicating at many different levels of severity and suffering from cured to suicide and almost nothing offered at any level can help everybody. Those bullets that you highlighted are either direct comments from members here or are summaries of what I read here every day. They are things that do apply to hundreds or thousands of people here and that’s who I am trying to help because that’s what I know. There are a handful of people here that have hit me with the flamethrower, that take offense at what I have written but there are dozens more who appreciate what I have offered. They find relevance and comfort in my words.

I spent some time in the Suicidal thread, the largest thread on this forum and posted a few times. I found out I was in way over my head and I am not equipped to help there and I also found out that this was very unhealthy for me personally so I left. I didn’t start lobbing grenades at some of the shocking things I read, I did not stick around criticizing people who I thought were way out of bounds in my view. There is enough pain in that thread so I just quietly left. Now I spend my time in threads like this.

Why do you keep coming over here and taking sniper shots at people working together to help this crowd? Why do you have to keep smacking people with snarky and condescending comments judging other people’s level of suffering if this cannot help you? I see you Anthony. I hear you telling me that you have severe unstable tinnitus. I know that you suffer. I am sorry for your pain. I am sorry that this happened to you. It's not your fault. I am sorry that you may never get to experience a success story like is found here. Life is not fair and sometimes it’s hard to watch others sailing through life without a care but rise to this challenge and let what we are doing over here help people and if you cannot be happy for those that find relief, please just read in silence or don’t come here. Your brand of dealing with this has the largest crowd on this forum so there is plenty of action for you and I can’t help in those cases so maybe you can help people find comfort in sharing their frustration and venting.

I have nothing but love for you Anthony but hurting other people who have a better fate than you is not going to help you or make you feel better, not in the long run. I would help you if I could, I wish I could. I am sorry that I cannot.

George

 

Can over encouragement for someone with tinnitus and/or physical/emotional pain be bad for someone?

The answer depends on many variables. It depends on how severe the person's tinnitus and/or pain is; as well as the cause. It depends on if the person offering the encouragement knows the limits of the person they're encouraging, and if the person receiving the encouragement knows their own limits.

If someone is being overly encouraging to be nice/caring and they don't know your limitations, this could set you up for failure, rejection, misery and depression. I don't like encouraging an audience, believing it should be done on an individual basis. Most here don't have have severe issues, but a few do.

There are those that sometimes require a dose of encouragement because they don't believe in their own abilities, I like posts that offer compassion and ideas on care treatment.

With all this, we must be careful to what is said to someone with severe tinnitus and or pain.

It's needed to know the variables between expressing compassion, physical care ideas and encouragement.

I have severe pain and disease in seven bodily areas and three diseases are terminal. I never leave my house, unless to go to the doctors. My legs and feet are so swollen from edema - peripheral artery disease, that I have to wear surgical covers on my feet instead of shoes or sandals when going to the doctors. I have major nerves in my mouth that were cut from a dental implant procedure - talking about unbelievable pain with that.

 

Agree with you @AnthonyMcDonald, if I had to go into a quiet room looking for my tinnitus, I would also consider myself cured.

Your comment about focus is also spot on. I don't focus on my tinnitus but it bloody well focuses on me.

But hey, we're all different, that's just me.

 

So would I but if it causes them panic and stress then they need help too.

George

 

Like.

 

I just told my mother-in-law the other night that if I made 10 people’s lives better on this forum I would be happy. I like your number better. I’m going to sleep on that possibility tonight. This forum represents a cross section of the tinnitus community and was created to serve everyone regardless of type or severity.

Thank you.

George

 

You are 100% spot on @GeorgeLG.

Well put.

 

That is a good point. I always assumed I have a mild case - unilateral - and this is why I seem to be coping. I was in my car yesterday listening to a Mozart mass - the Gloria chorus - quite significant volume level, must be something like 7o dB as it obviously exceeds the road noise. For a moment I noted I could still hear my tinnitus hissing away in my left ear. Maybe the level I am experiencing - which I find tolerable - is intolerable to others? I suppose it is irrelevant - except that when we talk about mild and serious cases - our baseline reference is our own tinnitus and how tolerable we find it.

 

Have to say regarding the opening question, what about some realism?

I have had tinnitus since I was 23. 36 years later and thousands and thousands of pounds spent, I reckon there really is no cure at the moment.

As for habituation, depends how loud your tinnitus is. I did habituate but in 2010 it really ramped up again. Without my hearing aids which eases the pressure and tinnitus noise by 50 %, I would be in real trouble, so much so that I am not sure how I would cope.

Agreed, tinnitus can go away on its own but when it doesn't, there really is no cure.

 

Hi friend of years. After I started this thread with the opening statement, I then for several pages give explanation per tinnitus types where improvement is possible.

For some with physical tinnitus, great improvement can happen even if there's also some hearing loss.

In my community, physical tinnitus is the most common type. I had way more community involvement than on this site.

There's lots of discussion about this all over. Someone without tinnitus as loud as a fire alarm has no business telling others who do have tinnitus as loud as a firm alarm, that they can be completely habituated. No one on this thread has been insensitive.

 

Been thinking a lot about the last couple of days on this thread. Some thoughts:

I know that tinnitus comes in many forms and levels of severity and everyone deals with their version differently. No one treatment or coping strategy works for everyone including anything that I say here. For instance I cannot use sound enrichment or sound generators at night but I know that they help a great many people and I am glad for that.

This website caters to the entire worldwide tinnitus population so people all along that wide spectrum come here for help. I am sorry for all severe sufferers who have not and may not find relief, I have heard you and I grieve for your suffering and I wish that I could help you, I am sorry that I cannot. Life is not always fair, something that I am keenly aware of.

My purpose for being here is to help the population that may benefit from what I have learned and experienced over decades with chronic pain management and the mind body connection, including now with my own tinnitus and pain hyperacusis. I hope that my journey here has humbled me enough to be sensitive to all who suffer, at every level. I have learned a lot since I started here. I know that posting here to address the larger less severe population risk offense and anger. This will never be my intention but I will also never stop trying to help people. I love all who suffer here, even if some don't agree with me.

George

 

This view is also something I would like to advocate and I'm extremely fed up with the contest between non-severe and severe. I believe this whole "conflict" is an illusion, as what is severe to one may be non-severe to another and catastrophic to a third. We all deal with this differently.

Also, I have to say George, what a beautiful soul you are. The amount of bitterness and resentment one can grow after being robbed of EVERYTHING over this condition (it takes your soul) is nothing to sneer at, yet you've somehow managed to not only retain your sanity but also your dignity and your warmth. I think of all the things I want to do if I ever get rid of this and while I can say I have grown enormously in the last 10 years (I am basically a completely different person now) I'm sad that I'm not able to use any of my newfound personality traits to help anyone, since I'm stuck in my apartment.