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

Discussion in 'Support' started by Greg Sacramento, May 2, 2022.

    1. GuitarMan

      GuitarMan Member

      Tinnitus Since:
      2010
      Cause of Tinnitus:
      Mild hearing loss due to high volume sounds
      I understand that there is no cure in general. But it doesn't make sense to me that if mine (and most other people's who have somatic tinnitus) responds to adding or releasing pressure to the nerve behind my ear there wouldn't be a way to permanently reduce the pressure on that nerve to at least improve it. Or maybe block the unwanted signals via something like acupuncture. There has been a recent study that suggests acupuncture may be at least somewhat effective in some cases.

      Sounds to me like ENTs and audiologists are "habituated" to the word tinnitus.

      I will be taking your advice and using an external speaker instead of headphones as often as possible. A lot depends on my GF and whether she's able to sleep with the sound of crickets. I know that I can't sleep without some sort of noise and even with the noise, if I wake up in the middle of the night I can't get back to sleep.

      As for manipulating the volume by pressing on the nerve, much of that is out of my control since just moving my head to do something as innocuous as looking up will put pressure on it and increase the volume of the whistling noise.

      I can say though that if I press on it while at the same time tilting my head back it intensifies by at least 5 times louder but then when I let it go, it leaves the perception that the baseline level is lower even though I know it's not.
       
    2. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      You should follow the work of Dr. Susan Shore. There is a presentation where she describes the mechanisms involved in the somatic variability of tinnitus, which is the basis for the device that she is working on.

      In short, the answer isn't as simple as you describe, but she has established an understanding of why what you are experiencing happens.
       
    3. Jerad

      Jerad Member

      Location:
      Ohio; United States
      Tinnitus Since:
      2002
      Cause of Tinnitus:
      Medication ototoxicity
      For tinnitus and hyperacusis, a big reason there isn’t a good treatment or cure yet is because the government — USA in my case — doesn’t provide adequate funding to research / figure out these problems. AIDS gets 28 billion dollars funding a year. Billion. Parkinson’s gets 52 billion. Guess what tinnitus and hyperacusis get? Basically nothing. The ATA has raised 6 million since 1971. Million. The DoD gave Prof. Thanos 2 million to work on his drug, but that’s just cookie crumbs. Two million with an M. Heck, Texas Roadhouse — a restaurant chain — matched that same amount when they raised money after Kent Taylor’s suicide. It’s pretty pathetic that a restaurant chain matched the funds of an all-powerful, top-tier, money-machine government, the richest in the world, mind you.

      Many vets in the military suffer from tinnitus and hyperacusis, too, so the government owes them the effort of finding a solution.

      We went to the moon in ‘69, like you said, but that stuff costs money. Space exploration gets 54 billion in funding a year. You have to spend money to solve problems or make things happen, and the government isn’t interested in doing so for tinnitus and hyperacusis. Had they aggressively took charge against these ear ailments in the same way they did others, we’d probably have solid treatments or even cures by now. If they can come up with ways to effectively treat AIDS and Parkinson’s, for example, they should be able to crack tinnitus and hyperacusis.

      I remember back in the ‘90s when AIDS was seen as a catastrophic illness with no solution, but one was found because of persistence and determination, and most importantly, cash.

      Tinnitus and hyperacusis receiving next to nothing monetarily is a tragedy of mismanaged funds. IMO, the blood is definitely on the government’s hands, at least in large part, and the suicides of many vets, and citizens. It is our responsibility to hold the government accountable when they clearly fail us. That’s corruption, basically.

      I can tell you right now: until the government opens up its wallet, an effective treatment or cure won’t be found, unless we get lucky with something like XEN1101, which is for epilepsy and MDD. It takes millions upon millions, and often billions, to make medical magic happen, and that’s just not happening with tinnitus and hyperacusis. That’s the shameful, unfiltered reality of the situation, and it should make a lot of people mad.
       
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    4. ThomasF
      Creative

      ThomasF Member

      Location:
      Florida
      Tinnitus Since:
      2001
      Cause of Tinnitus:
      Probably loud music
      There will likely be a cure for tinnitus. Most doctors don't seem to give a shit outside of med school. It honestly could be that tinnitus itself as a symptom needs its own field of study with all of its variables in mind. If medical science can pin down the damages or faults that are causing tinnitus and simply develop a battery of treatments to tackle each cause then there can be progress toward a cure. Hair cells? Regenerate with stem cells or molecular treatment. Is your brain stupid, boom, here's a computer chip that fixes your dumb brain acting weird. Or the nuclear option. Just transfer your consciousness into a freaking clone. I'd do it. It's not like the UN is going to stop me from cloning myself.

      On a less flippant note. Tinnitus is not taken seriously at large as a symptom and hearing loss is also just bubble gum fixed with stuff like hearing aids. Figuring out how hearing works, how hearing loss works, and how to fix hearing loss are being pursued by a bunch of different groups and humans might be stupid but we're not so stupid or unlucky enough to attempt every approach to fix a problem and still come up empty. People shouldn't be overly negative on the possibility of a cure, doctors included. There eventually being a cure is a certainty. There being a cure within our lifetime is a probability. There being a cure in 10 years is a possibility. There never ever being a cure is impossible.
       
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    5. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      Somatic tinnitus does exist but I think the root cause of your problem is noise induced tinnitus, as a result of being exposed to the handheld air horn. If you were not overly affected by somatic tinnitus prior to the recent noise trauma then I believe my suspicions are correct.

      The auditory pathway consists of many nerves, when they are exposed to loud noise they become traumatised and there is a risk of developing tinnitus or make existing tinnitus increase. It will take time for them to settle down. You might want to consider taking Magnesium supplements to help in this process. When I first got tinnitus with severe hyperacusis 26 years ago, I was advised by a herbalist to take a Magnesium supplement as it can help repair nerve trauma. My ENT doctor said this was good advice and recommends it to all his tinnitus patients. He also suggested taking Ginkgo Biloba which I still take to this day.
      I know how frustrating tinnitus can be but there is only so much ENTs and audiologists can do for tinnitus. The ear is a very delicate organ, sometimes the best treatment is to leave it well alone and allow it to settle down. If you are feeling stressed and have difficulty sleeping, talk to your family doctor, as medication can help with this. Medication can help a person get through a rough patch and doesn't have to be taken long term.
      You can place a pillow speaker under your pillow. They are available online and connect to the sound machine or other sound source for privacy. Pillow speakers are also available. These pillows have in-built speakers and connect to the sound machine via a cable that has a 3.5 mm audio jack.

      Michael
       
    6. AUTHOR
      AUTHOR
      Greg Sacramento

      Greg Sacramento Member Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      04/2011
      Cause of Tinnitus:
      Syringing + Somatic tinnitus from dental work
      We have results within my community for any type/cause of tinnitus with liquid Glycinate Magnesium. 100 mg four times a day where about half receive a small reduction. Some had tinnitus for years. No real results with a Magnesium pill taken once a day. Hawthorn berry is also used as an antioxidant, support for blood lipids and blood pressure. A small reduction is a big deal if tinnitus is high pitched and loud. Not everyone can take these two products - best to ask your doctor first.

      For somatic tinnitus, X-rays of neck is often needed. I twice posted a long list of tinnitus problems that can relate to neck and jaw where many indications will show up on neck X-rays. With knowing the problem and then treatment, a 25% or 50% reduction is sometimes possible. Even with having somatic physical tinnitus for awhile, but the sooner treatment is started, the better, as arthritis can set in. A few may see tinnitus completely resolve if the problem is within the neck or caused by infection. Blood work and correct shoulder and head posture is also important.
       
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    7. GeorgeLG
      Wishful

      GeorgeLG Member

      Location:
      USA
      Tinnitus Since:
      05/2021
      Cause of Tinnitus:
      Leaf blower, rock band, constr & comp shooting, chemo
      I came to believe that my noxacusis is due at least in part to posture and head position. In coordination with my chiropractor I’m doing stretching and strengthening associated with forward head posture and have just started to see improvement. With restrictions I am back recording music after a year without being able to.

      George
       
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    8. lusiol
      Frustrated

      lusiol Member Benefactor

      Location:
      France
      Tinnitus Since:
      2003 > 2010/2019/Jan2022/July2022
      Cause of Tinnitus:
      Noise/Drugs/Anxiety/Injury
      Hello, have you relied on some medicine at some point to reach that state?

      That's impressive, wishing you to stay this strong :)
       
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    9. fishbone
      Shitfaced

      fishbone Member Hall of Fame

      Tinnitus Since:
      1988
      Cause of Tinnitus:
      loud noise and very bad sickness
      My tinnitus journey, has been a roller coaster ride and it still is. The tinnitus has taken a lot away from me, at the same time it has added a lot of value in my life as well. I base how I deal or have dealt with my tinnitus, based on the experiences and lessons that it has taught me, the lessons that life has taught me.

      I recently made a post here.

      The reasons and logics that I talk about in this post, can be very powerful. That "inspiration", that is mentioned in that post, has carried me and still carries me to this very day, when my tinnitus is at beyond "hell" level.

      I stand on my own, I create my own opportunities and life moves forward for me with or without the tinnitus. I wake up (at times, I really want to go back to bed :)) and I have to do what needs to be done, to move forward.

      At times, I want to question "WHY" am I doing all of this? The ringing is at its worst, what is the point? I take a "look" and my two dogs, and say "They are the reason", I take a look at my "Rocky" posters, and I say he is the reason.

      I think of all the people, that need support and love, "they are the reason."

      I have enough "reasons" to carry on, even though the tinnitus is at its worst.

      Life can and will always bring a transformation, "if we let it."

      Life will always evolve and we can evolve with it, as well.

      It's the reasons I "choose", that keep me going.

      Every day, that we move forward, is a small "step."

      It's those "small" steps, that can eventually lead to something greater.

      I am taking those "small" steps like you folks.

      Keep moving forward!
       
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    10. GeorgeLG
      Wishful

      GeorgeLG Member

      Location:
      USA
      Tinnitus Since:
      05/2021
      Cause of Tinnitus:
      Leaf blower, rock band, constr & comp shooting, chemo
      Great attitude brother!

      George
       
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    11. Nick47

      Nick47 Member

      Tinnitus Since:
      2015
      Cause of Tinnitus:
      Viral/noise
      What symptoms did you get? When did you get infected?
       
    12. jasonbourne

      jasonbourne Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      noise
      I'm sick of the truth. Thank you @Greg Sacramento for posting something positive.
       
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    13. Marshall

      Marshall Member

      Location:
      ND
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Not sure/virus/noise trauma/cumulative noise damage
      Tinnitus started a week after I was done being sick.
       
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    14. Travis Henry
      Cynical

      Travis Henry Member

      Location:
      Dallas,TX
      Tinnitus Since:
      10/2021 textme2146428395
      Cause of Tinnitus:
      1 Moderna Vac, Noise and stress I guess, its killing me
      Man wish I had a case of this "severe tinnitus." I would consider myself cured if I didn't hear it during the day.
      God wish they would have given me their tinnitus. :( I could deal with screaming tinnitus if I could listen to music and exercise.
       
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    15. NYCGuy
      Suicidal

      NYCGuy Member Benefactor

      Location:
      NY
      Tinnitus Since:
      10/2021
      Cause of Tinnitus:
      Neck, Jaw or Stress, who knows.
      Now I have TTTS so back to square one.
       
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    16. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      Do you want my tinnitus?
       
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    17. GeorgeLG
      Wishful

      GeorgeLG Member

      Location:
      USA
      Tinnitus Since:
      05/2021
      Cause of Tinnitus:
      Leaf blower, rock band, constr & comp shooting, chemo
      Life is suffering. Everyone will suffer at one time or another, it's the human condition, it cannot be avoided. Illness, loss, pain, fear - we will all see these things at some point in our lives. People live beautiful and happy lives all over the world while facing these challenges, that is also the human condition.

      When we compare our suffering to others, get angry or jealous of the perceived difference in our relative fates, we prevent healing or coping. We prevent the process of living a good life despite our illnesses. Illness and suffering are horrible. Pain is horrible. Being at the wrong end of random suffering being handed out by the universe is horrible. I get it, I suffer with everyone else here. Tinnitus, pain hyperacusis, two cancers, one stage IV and incurable, chemo Friday so my monthly weekend of hell, lost my wife to cancer, eyes so sensitive to light I can’t go outside some days, ... I have my share but I have no idea how my suffering compares to anyone else and it does not matter.

      It is pointless for me to spend any time being angry or feeling a victim or persecuted by whatever one believes in. Saying that "if only I suffered like that other guy" is kicking the can down the road, it evades our personal role in living the very best life we can working with what we are given. When we talk like this we are not willing to face our reality, accept it and then make the best of what we have. I know, I used to think and talk like this for more than a decade, and I stayed sick with multiple chronic illnesses during that time. My life sucked. It also prevents us from going outside ourselves and being in the service of others, something that can really bring joy to your life once you understand it, regardless of our pain.

      This is our fate, our reality. It is the beginning of our day today and nothing can change how we got here. We can't do a damn thing about where we sit on the pain scale compared to anyone else, even if we could measure it. What we can do something about is how we will deal with this, how we will live our lives with all of it. It's all we have, it's what we have to work with. Life is not about getting dealt a great hand, it's about playing the hand we are dealt the very best we can. I am just now getting out of bed from chemo this weekend, my tinnitus screaming in my head, thunderstorm came through last night with no earplugs so pain in my ear, pain in my joints, feet swollen... I can't wait to get outside and breathe fresh air, to see nature in its infinite beauty, to see a friend outside with my earplugs in, to work in my tomato garden, to go get tacos for lunch and later tonight work in my music studio for as long as I can until the ear pain tells me its time to take a break. You have more power over your life than you know, your brain is more plastic than you know, your attitude has more effect on your suffering than you know. For the 0.1% club as it is called here, I have nothing but sorrow and love for you, I wish I could take it all away for you. Sometimes life is indeed cruel and it randomly lands on a few of us at the very tail end of the curve. For the other 99%, we need to get on with it. I will not live a normal life expectancy and I am in pain every day but I promise you that I have hundreds of good days left and today is going to be one of them. Tinnitus and cancer are just going to have to kiss my ass today because I will figure a way to get a good day out of whatever I have to work with and I will never ever stop trying to get better. Never.

      George
       
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    18. Lane

      Lane Member Hall of Fame

      Tinnitus Since:
      02/2018
      Cause of Tinnitus:
      Single 25 mg dose of (anticholinergic) drug Promethazine
      Hi @GeorgeLG -- Based on your above comments, I think you might very much appreciate the following video. I started it at a point where a young woman says an incredible thing about life, which seems to mirror some of your own philosophy. Be sure to watch the whole 7-minute video.

      Nightbirde's Original Song Makes Simon Cowell Emotional - America's Got Talent 2021

      BTW, this is one of my ball-time favorites on AGT. Also, the young woman died a few weeks after her appearance.
      @GeorgeLG -- So many good points you made in your post, but the one about being of service to others caught my attention. As you mentioned, everybody carries a burden of some kind, usually a good number of them. One way to live our lives is to be on the alert to how we may be able to help another person with their burden(s). Sometimes the easiest and most effective thing we can do is just listen to their story. In a sense (the way I look at it), the dealing with our burdens becomes to a large degree our spiritual journey. In recognizing that, I think we honor the life experiences we're having, and appreciate them for the value they have.

      One thing that has helped me (considerably) is to feel gratitude for the things I do have, instead of focusing intently on the discomfort my challenges present me. For many years, I spent 20+ hours a day in bed from a complex health condition known as Chronic Fatigue Syndrome (a misnomer if ever there was one). Then a couple of years ago, after decades of being mostly bedbound, I discovered a "thoracic extension exercise" that gave me much better health and functionality. I was even able to work again, doing delivery work for DoorDash and Uber Eats. Almost every day I did my "menial" delivery work, I was ecstatic I was able to be so funcitonal again. My gratitude (and happiness) was so powerful that it drowned out the misery of my tinnitus.

      I can't say my myriad of challenges will never get to the point where I can no longer experience a great deal of gratitude, or happiness, or love. But I'm pretty confident that if I continue to cultivate these attributes on a daily basis, I can survive just about anything life may throw at me. Because there's so much to be grateful for, and so much love in this world if we seek it out. It all makes life not only worth living, but a great joy to live.
       
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    19. tniuf

      tniuf Member

      Tinnitus Since:
      04/2016
      Cause of Tinnitus:
      Viral infection
      I just wanted to say that you are a true inspiration. Looking at your profile pic (not sure how recent it is) anyone would have guessed you are such a handsome, lucky, successful, healthy man, yet once you read your post you can tell how much suffering you have had to endure (and still do) on a daily basis.

      At the same time there's a part of me that thinks having terminal cancer is not that bad in the sense that you know that very soon all of that suffering is going to come to an end. Life after a certain point loses its novelty, it gave you whatever it had to offer you.

      In any case I agree with your points, we should be kind to each other, and help each other with our sufferings - however possible, despite how big or small, suffering is never fun.
       
    20. SamRosemary

      SamRosemary Member

      Location:
      Canada
      Tinnitus Since:
      05/2022
      Cause of Tinnitus:
      Unknown
      George, you are a very wise man.

      Thank you for your beautiful words. I feel these things in my soul, but get lost daily in my own issues. Appreciate you.
       
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    21. GeorgeLG
      Wishful

      GeorgeLG Member

      Location:
      USA
      Tinnitus Since:
      05/2021
      Cause of Tinnitus:
      Leaf blower, rock band, constr & comp shooting, chemo
      Will do, thank you.
      Well said.
       
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    22. GeorgeLG
      Wishful

      GeorgeLG Member

      Location:
      USA
      Tinnitus Since:
      05/2021
      Cause of Tinnitus:
      Leaf blower, rock band, constr & comp shooting, chemo
      I was on top of the world both literally and figuratively back then. That picture was 20 years ago, a few years before my wife's first cancer and our long challenging road (6 cancers between the two of us). I have always been strong willed and tough, willing to face impossible challenges. I cannot know how I would see tinnitus without stage 4 cancer, I do not know if it makes it any easier or not. I can tell you that I would use every good day/month/year up to 500 years if I could have them, I love life and love learning new things. I am not afraid to die but I don't want to die. The hardest part is missing my wife, she was my best friend and a happy joyful powerful light. If anything would ever change my mind about wanting to live, it would be her loss, not tinnitus.

      I have faced a lot of challenges in my life, gotten through many tough situations. My parents made me tough but my wife taught me grace and being in the service of others.

      George
       
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    23. GeorgeLG
      Wishful

      GeorgeLG Member

      Location:
      USA
      Tinnitus Since:
      05/2021
      Cause of Tinnitus:
      Leaf blower, rock band, constr & comp shooting, chemo
      We are born completely helpless and selfish. Then starts the beautiful journey, all of it. The growing, the sorrow, the suffering, the happiness, the joy, the love, the giving. We are capable of so much, even if we suffer. Thank you for your words.

      George
       
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    24. BrOKeN_1

      BrOKeN_1 Member

      Tinnitus Since:
      10/2020
      Cause of Tinnitus:
      High Frequency Hearing Loss
      You know. I woke up today with tinnitus. Anyone surprised? Didn't think so. This is routine. After the initial pity party and bemoaning of my fate I decided to visit Tinnitus Talk and see how my friends were doing this morning. Usually it's a quick browse, then off I go to practice distraction.

      I don't know what caused me to browse this thread today but Thank God! I'm amazed every day at the struggles people face and continue to power though with a positive attitude.

      I also love the in your face truth to each one of your experiences with life. I look back at the last couple years with tinnitus. From the suicidal to stable phase. From the desperate to habituate to the acceptance phase. And even now as I type the ringing is hellish but I'm still going to go have a good day.

      I had to quit comparing my condition to others some time ago (it's subjective and very much individualized) Thank you all for helping to put things into perspective today.

      Much Love.
       
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    25. Travis Henry
      Cynical

      Travis Henry Member

      Location:
      Dallas,TX
      Tinnitus Since:
      10/2021 textme2146428395
      Cause of Tinnitus:
      1 Moderna Vac, Noise and stress I guess, its killing me
      Yes, yes I do. I can't do anything. Miynes so loud and reactive. I have no QoL.
       
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    26. GeorgeLG
      Wishful

      GeorgeLG Member

      Location:
      USA
      Tinnitus Since:
      05/2021
      Cause of Tinnitus:
      Leaf blower, rock band, constr & comp shooting, chemo
      @Lane, can you direct me to a resource for this? I have started a similar process but could use some help.

      Thanks,
      George
       
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    27. tpj
      Depressed

      tpj Member Benefactor

      Tinnitus Since:
      08/2008
      Cause of Tinnitus:
      probably noise
      I understand where you're coming from. If you or if any of us are feeling negative, angry, jealous, resentful, sad, bitter, scared or victimized, then so be it. Some of us will get passed these feelings and I hope that for everyone but some can't. I don't think that should be dismissed.
       
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    28. Lane

      Lane Member Hall of Fame

      Tinnitus Since:
      02/2018
      Cause of Tinnitus:
      Single 25 mg dose of (anticholinergic) drug Promethazine
      Hi @GeorgeLG -- I first got this thoracic extension idea from my Osteopathic Physician, which he recommended for some shoulder pain. Quite unexpectedly, I began to see significant improvements in my overall energy levels within just 3-4 days of starting a couple of different exercises.

      The following :37 second video shows how a rolled up towel or foam piece can be used for the upper thoracic area.

      Thoracic Towel Stretch

      Below is a link to a 5-minute video which goes into more detail on how to use a towel or foam piece to loosen up the upper back:

      The Simplest and Most Effective Exercise For Thoracic Extension

      I "think" this was the most important exercise I did that shifted things so dramatically for me. But I also started doing another one, called a pelvis stabilization technique (link below), at about the same time (2 years ago+). It really helped my lower back a LOT, and most likely helped my neck area, possibly as much as the towel exercise (I use foam instead of a towel). I think these two techniques work really well together.

      Natural Pelvis Reset

      Just to mention George, I'm not certain what the specific reason(s) was that I got increased energy from doing these exercises. At first I thought it was because I opened up some new nerve pathways in my upper spine to various areas of my body. But I think another plausible explanation--that is somewhat similar--is that I increased a lot of nerve energy going to the gall bladder, upper intestinal area. My understanding is that this area is responsible for a large part of the body's immune function.

      The way I speculate about this, is my CFS "could" have been caused by a chronically active virus (or bacteria) which my body could not eradicate. Since I noted an improvement in my overall immune function following the startup up of these exercises, I've come to believe this is the main reason I was able to improve my overall health. If improving my immune function is the reason for my improvement, I would think it "could" be relevant to your cancer situation.
       
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    29. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      I was like you as you were in January - loud but stable tinnitus... I had an ok QoL. I had a girlfriend, I drove long distances and listened to music in my car. Aaaand I still took that for granted! I thought hell this shit can't get worse than it is... I had it for a decade and I accepted it after 2 years. But since 3 years ago, after being careless, it began to worsen and worsen right in front of my eyes and is STILL getting worse. I now cannot leave the house without earmuffs. I cannot do any of the things I did with my old severe tinnitus. The only thing left to do is go into the woods but I will not be able to survive because wilderness survival can get noisy.

      So when you say you can deal with your current loud tinnitus, if only you could listen to music and mask it, well that is a good thing because severe tinnitus is unmaskable anyways.
       
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    30. GeorgeLG
      Wishful

      GeorgeLG Member

      Location:
      USA
      Tinnitus Since:
      05/2021
      Cause of Tinnitus:
      Leaf blower, rock band, constr & comp shooting, chemo
      @Lane, thanks I will try these. When I got started, my thoracic spine was so rounded and my head so far forward that I could not lay flat on my back on a carpeted floor, I could not get my head to the ground. Now I can but this takes it up a notch.

      George
       
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