@Ava Lugo, I am sorry that you have been suffering from your tinnitus, I hope that I can help or at least answer some of your questions. I am glad that you are searching for the beauty in life. You sound like a decent and kind person. You deserve to be loved, safe, happy and healthy. These are a lot of deep questions.
First let's talk about tinnitus in general and then the 0.1% club. Tinnitus affects around 15% of the population so that's around a billion people. Most deal with it well enough that it does not have a serious impact to their quality of life. I know five tinnitus sufferers personally, they are all in this group. For many it gets better with time, and can even go away completely. For some it's better with coping skills. For some the removal of irritants like certain drugs or food helps and for some correcting a deficiency like B12 can help. For everyone, the less stressed we are about it and the better we manage our overall health, the better it can be. Hearing protection is also a good tool when used properly.
So what's the 0.1% club as they call themselves here? Everything in nature has a bell curve and at the tail ends of that curve sits "miracles" and truly devastating cases of all diseases, cases for which their will likely be no relief. This is an extremely small number of people, unlikely to be any one of us in particular. I acknowledge this small population because I have learned that posting can be more productive if you recognize these extreme sufferers and acknowledge that your suggestions cannot help everyone. I come here to help because I believe that the other 99% can find some relief and I have gotten many thank yous and encouragement from people asking me to keep posting here. That is one way that I find beauty in life, being in the service of others. I do not consider myself in the 0.1% club for tinnitus, I will never stop trying to get better and to find the beauty in life. I have two cancers, reactive tinnitus, pain hyperacusis, unspeakable recent loss and many other health problems, including recently depression from my chemo. I find beauty in things almost every day. A few days a month are pretty dark but just a few.
I don't think that any form of this suffering means no improvement is possible. I can't hear what you hear and I don't know how much you suffer compared to me but: I have reactive tinnitus with many changing tones that cannot be masked. It does not bother me anymore but it was really scary at first. A few nights a month it is so loud after the shower that it takes a couple of hours to fall asleep but that's it. I have pain hyperacusis that kept me out of the music studio for a year while I worked on it. Pain shoots up and down the side of my head, dull and stabbing pain in my ear and jaw, my brain burns like acid. This is my bigger challenge but I recently finished two new songs. My other problems are too long to list. Yesterday was cold packs, hot showers on the joints, Motrin, vitamin D and I got off the floor from my lower back and hip collapse (chemo) and was able to get out and walk in the fresh air and get groceries (curbside) with cold packs shoved down the back of my belt, literally. Last night I stood in the hot shower until the hot water ran out. It only woke me up once last night.
Your stress level, relationships, noise levels, energy in your life all affect your health and your tinnitus. I encourage you to resolve the stressful things like an abusive family member when you are able to and learn relaxation and stress management techniques. I grew up in a very dysfunctional family with many PTSD style hardships so I understand. I developed OCD and tics at age 10 during these hard family times. Those problems have been left very far behind me now and no longer affect me but they did for a long time.
How do I cope with it?
I don't like masking, at least not sound enrichment style. It helps many here so it has its place. I like just the right amount of background noise to not hurt my ears, it keeps my brain from turning up the central gain and make all that noise. So working in the garage with the big door open, walking in the woods, etc. I have gotten pretty good at anticipating the need for hearing protection. The gas station was hammering me. Big street, stop light, big overhead amplifier. I mask up now so when that screaming motorcycle off the light flies past me he is only destroying his hearing. You get the idea.
I have removed most irritants like sugar, salt, stimulants, certain foods and vitamins, etc. I did some testing and am correcting deficiencies like vitamin D and B12. I eat things that help with inflammation like fish and olive oil. I experiment with the supplements discussed here on a rotation, looking for help.
I have accepted this, acknowledged that it has happened and I cannot change the past. I did not get screwed by the universe or any one uncaring person to get this. It's just life. We can't wait for the perfect hand, we need to play the hand we are dealt the very best we can. The tinnitus sounds are probably permanent, they will vary all day and I will have some pain attacks. Old experiences with chronic pain taught me that our emotional reaction to this, how we process this, how we deal with it is part of the total package that equals our suffering. The noises and then our reaction. I can do something about the latter so I have worked with techniques like the Back to Silence thread, read books an the brain and pain management and I am also working on my posture because of the link to ear pain. No measuring, monitoring, comparing, labels, hyperfocus. When I get a sound exposure and ear pain I protect up and go do something with a positive outcome and then focus on that accomplishment. Every ear pain episode is now rewarded with a satisfying accomplishment. I visualize what I want, not what I don't want. When my pain was at its worst, I upgraded my music studio and its equipment and sat in there every single day imagining being able to do what I love again. It's harder than it used to be but I am back at it on a limited schedule with new work to be inspired by. When the tinnitus sounds get louder, I get to work, I replace every troubling moment with something positive.
You have more power over your health and well being than you know. You have more capacity for good days and beauty in your life than you know. Please don't place limitations on yourself with labels, you get to decide what's possible. Millions of people all over the world deal with arthritis, cancer, many forms of health problems that they manage and then go about their lives filled with joy and beauty. Sounds that never go away, sure, big challenge but it can be managed. It can be better. You deserve to be healthy, happy, safe and loved.
I hope this helps.
George
Member
