“Tinnitus Truths”
- Thread starter Jazzer
- Start date
Member
To my knowledge there is currently 'no good news to share about tinnitus.'
No breakthrough, no treatment, and certainly no cure.
Doubtless research is continuing, which is obviously a good thing, but nothing has emerged yet that can have any affect on how we have to live our lives with this affliction.
For myself, I meditate every single day, and find my place of peace and safety.
Yes - the noise is always there - but so is my opportunity to find the stillness that underlies all experience.
Just thought I'd add my own 'two bobs worth.'
Dave xx
Jazzer
No breakthrough, no treatment, and certainly no cure.
Doubtless research is continuing, which is obviously a good thing, but nothing has emerged yet that can have any affect on how we have to live our lives with this affliction.
For myself, I meditate every single day, and find my place of peace and safety.
Yes - the noise is always there - but so is my opportunity to find the stillness that underlies all experience.
Just thought I'd add my own 'two bobs worth.'
Dave xx
Jazzer
Hi Dave,
How are you going?
I really want to be more vigilant about incorporating meditation into my everyday life, not just during a crisis.
I know you focus on your breath during meditation. Do you ever actually focus/actively listen to your tinnitus during your sessions in the bath? Do your cats ever join you? (Joking.)
How are you going?
I really want to be more vigilant about incorporating meditation into my everyday life, not just during a crisis.
I know you focus on your breath during meditation. Do you ever actually focus/actively listen to your tinnitus during your sessions in the bath? Do your cats ever join you? (Joking.)
Most people on these boards are in the early stages of their tinnitus journey.
I have already been through it, lived happily but am unfortunately back through vaccine.
All I can say is that the first year or so is horrendous. I am now just over a month in again and I feel exactly the same as the first time. There is a primitive part of the brain that is shit scared and no amount of talking to yourself etc will calm it. It has to see and feel for itself that you are not in mortal danger from these noises. That takes months, maybe a year. When this part of the brain calms down sleep becomes easier which can speed up the healing process. Then you can kind of live with it. I was lucky because my sounds actually started to disappear after about 2 years. At that point you don't even want to hear the word tinnitus. You go back to what is normal for you.
I have been going over a lot of the old threads from my time in 2016. The majority of the posters are gone. My guess is that most of them have gone through the same process as me.
The one thing I've learned is that you can't hurry healing. It will take its own time. You just have to be able to stick around for the ride.
I have already been through it, lived happily but am unfortunately back through vaccine.
All I can say is that the first year or so is horrendous. I am now just over a month in again and I feel exactly the same as the first time. There is a primitive part of the brain that is shit scared and no amount of talking to yourself etc will calm it. It has to see and feel for itself that you are not in mortal danger from these noises. That takes months, maybe a year. When this part of the brain calms down sleep becomes easier which can speed up the healing process. Then you can kind of live with it. I was lucky because my sounds actually started to disappear after about 2 years. At that point you don't even want to hear the word tinnitus. You go back to what is normal for you.
I have been going over a lot of the old threads from my time in 2016. The majority of the posters are gone. My guess is that most of them have gone through the same process as me.
The one thing I've learned is that you can't hurry healing. It will take its own time. You just have to be able to stick around for the ride.
Totally agree with what you said!
To me, this experience is in the same time better and worse than the first time my tinnitus appeared, in 2012.
It's worse because I have to deal now with at least 5 or 6 intrusive sounds that are constantly getting worse (before I had only three moderate sounds). I also have insomnia, headaches and the worst of all, hyperacusis (a total game changer).
It's in the same time better because I would have never imagined that I could function in such harsh conditions but here I am, though damaged, still alive and kicking.
Well my tinnitus is always there but I just observe my breathing which is determined by my 'tummy.'
"No conscious breathing, just allow your tummy to breath as it chooses."
I drift off into semi consciousness.
I do experience a 'stillness,' a very pleasant feeling.
Funnily enough, if I'm in my meditation too long, perhaps more than half an hour, then Percy gives me his complaining 'Brrrrrrrr!'
Dad - come on - get out!
So I set my alarm nowadays.
Throughout the day, if my tinnitus is a bothering me I just think the word 'stillness' and relax again.
I'm okay thank you Aura.
I came to realise that I've made so many posts on here that I've probably said all I have to say.
Mind you, I do have a quick 'peek' on here every morning just to check if anybody has messaged me or made any queries on my posts.
I wouldn't want to ignore anybody.
My views on coping methods haven't changed. I still consider a daily practice of meditation to be invaluable, and I still champion the views of author / philosopher Eckhart Tolle regarding the best approach to coping with the body of historical psychological suffering from which we are all subject to some extent.
I also know that there are some on here who vehemently disagree with me - well 'so be it.'
Love and best wishes to all of us trying to make a life for ourselves despite this nasty malady.
Dave x
Jazzer
Dear @OnceUponaTime, hi, it's me Daniel. Did I ever say thank you to you? Thank you. Your words and loving thoughts along with @Jazzer were instrumental in helping me to hold on and regain my life, my new life. You guys saved me when I was drowning and in deep despair. Honestly Once, I am so grateful to you and have so much love, admiration and respect for you. I hope you feel better soon.
Brother Dave, I know you miss Sylvie and I am so sorry. I love you friend and hope you're learning to walk again. I am also mega grateful to you and your kind, intelligent, wise, and loving words of support. Thank you.
My tinnitus hasn't changed but I have.
Haven't been logging on but wanted to say hi as I read Once was feeling distressed.
Sending you guys hugs and kisses.
Sincerely,
Daniel
Brother Dave, I know you miss Sylvie and I am so sorry. I love you friend and hope you're learning to walk again. I am also mega grateful to you and your kind, intelligent, wise, and loving words of support. Thank you.
My tinnitus hasn't changed but I have.
Haven't been logging on but wanted to say hi as I read Once was feeling distressed.
Sending you guys hugs and kisses.
Sincerely,
Daniel
Hi Once.
My philosophy class is excellent - very thought provoking. We study all of the ancients of course, but for me Eckhart Tolle is the 'lynch pin' who puts his philosophy so clearly.
No - did you think for one moment that my Valentine's Day could have been lovely, without my adorable Sylvie. She passed away in November 2020. Her loss is so hard for me. I will always adore her.
My tinnitus is still just as loud as before, but I play Sylvie's hypnotherapy tape for me every day that I walk around my lovely park, and also when I go to bed.
So I am coping with severe tinnitus and Parkinson's disease, and my bereavement, but doing my best to survive as I still have responsibilities: children and grandchildren who live me, and three lovely pussycats who depend on me.
I am very sorry to read that you are unwell Once.
Is it the usual 'T' problem, or do you have more to cope with?
Love to you,
Dave xx
Jazzer
Hi Daniel - a lovely post from you.
If I managed to support you at all then I am very pleased - but I will tell you that the warmth of your friendship for me helped me also to bear my load. I saw it as if we were brothers, both in pain, but still doing our very best for each other.
I'm very pleased that you came back to say 'hello' Daniel.
Love,
Dave xx
Jazzer
Sentinel
Member
- Apr 6, 2021
- 96
- Tinnitus Since
- Late November/Early December 2020
- Cause of Tinnitus
- Really epic hobbies
I lacerated my toe to the bone a month and a half ago. It required crutches and stitches.
Following that incident and medical care, I received more sympathy in a week for something comparatively minor than I did the entire time I was suicidal due to tinnitus prior to OTO-313. I had a little cut, and therefore, people care a lot. They saw me on crutches and asked what was wrong and what happened.
That laceration took 0.01% of what the destruction of my life in the first half of 2021 did. It is invisible, and when it's at the worst possible level you face it completely alone, and no embrace or care of your closest family member can change what you are going through. You are locked in a room with it, and there is no escape.
I'm thankful for my positive changes over the last year, but the scars and PTSD that it has brought are with me constantly.
Following that incident and medical care, I received more sympathy in a week for something comparatively minor than I did the entire time I was suicidal due to tinnitus prior to OTO-313. I had a little cut, and therefore, people care a lot. They saw me on crutches and asked what was wrong and what happened.
That laceration took 0.01% of what the destruction of my life in the first half of 2021 did. It is invisible, and when it's at the worst possible level you face it completely alone, and no embrace or care of your closest family member can change what you are going through. You are locked in a room with it, and there is no escape.
I'm thankful for my positive changes over the last year, but the scars and PTSD that it has brought are with me constantly.
- Jul 8, 2019
- 1,160
- Tinnitus Since
- 1991
- Cause of Tinnitus
- Loud Music / family history
You've just hit the nail squarely on the head.
Humans respond best to basic stuff, like an X-Ray, or someone hopping along on crutches. This is why it's so important for science to develop genuine tangible diagnostics for tinnitus because trying to explain it to people with quiet ears can be nigh on impossible.
In the latest podcast episode, Christopher Cederroth mentioned developments in EEG, which could indicate cases of tinnitus and distinguish them from 'normal' readings. It's not an X-Ray nor is it crutches but at least it would be something to show others and help them understand.
Sentinel - I understand you fully. Severe tinnitus is total devastation.
Can you please tell us about the OTO-313 that you mentioned, and how it helped you?
Dave xx
Having read other posts on OTO-313 it looks like it's yet another miracle treatment, that's dead in the water!
- Jan 1, 2019
- 708
- Tinnitus Since
- Steadily worsening since 2018
- Cause of Tinnitus
- Unknown
Dear Daniel,
Thank you for this
With a few words you were able to lift me up. Your kind words warmed my heart. I am humbled and glad that I was somehow able to help you when you needed support.
I often wondered if my presence here on Tinnitus Talk and my words ever helped anyone.
I often got mad at my doctors for telling me to stop coming to the support group, but I kept coming because it is where I felt understood and I always want to encourage others to never lose hope.
You may know that I have severe low drone/hum tinnitus and also the hiss, "eee," and at times morse code. The low drone is... indescribable. It is distressing. The loud hiss I've learned to live with it.
Three weeks ago, I had a noise related incident (which was not very loud at all, but the low frequency probably hurt me) and gave me a spike on my low drone/hum tinnitus. The hiss stayed the same. The pressure headaches, vibrating, hum, dizziness, are some of the symptoms after the incident.
After 10 years of going through the ups and downs of tinnitus, I feel almost embarrassed to come here for more support. I know I shouldn't feel that way, but I do. How can a "veteran" not know how to keep it together? After all I have tried everything in the book, right? I feel almost like by this point, I have to somehow know what to do and keep it together... at least for the newbies sake so that I don't scare them.
I agree with @Jazzer as he has always said that not everyone can "get used to it" or "move on" if you just ignore it. There is a form of tinnitus that one just can't ignore. It is debilitating, and no one should make those people feel like it is their fault that they are still suffering after all these years. It is a matter of finding ways to cope with it. It doesn't mean we stop suffering; it means we find a way to go through the suffering each day. As unpleasant as it is, we continue to live and carry our burden as best as we can.
Anyways, I am babbling now.
Your words came on time to help me heal a bit as I go through this spike. (I hope it's a spike and not permanent.)
Glad that you are doing well, my friend.
Please do tell me what have you been doing lately?
Much love to you too and a big warm hug,
Once
I am sorry Jazzer. I was just hoping you had a lovely time with your children and grandkids. Of course it would never be as lovely without Sylvie. She lives in your heart now and yes, you will always love her.Yes, I have a "spike," but as I was telling @Daniel Lion, I'm hoping it calms down. It has been 3 weeks now. Sigh.
I am glad your philosophy class is going well. I am not much into philosophy, Took a few classes while in college and discovered I prefer the "keep it simple stupid" method... lol. I know it sounds funny...
What Does Keep It Simple Stupid Mean? The Untold Story. (buildstrongmarketing.com)
How are the pussycats doing? Me need more pictures of the darlings.
Warm hug,
Once
- Jul 8, 2019
- 1,160
- Tinnitus Since
- 1991
- Cause of Tinnitus
- Loud Music / family history
Don't be. I'm 30 years in and still need a bit of a helping hand every now and then.
Sending you good vibes.
Ken219
Member
Your words are thoughtful and caring! You're an inspiration to all that read the board. I am in a spike. It has been 17 months. I hope to habituate soon. I know the drill. It takes time. Bottom line, your posts count! Praying for better treatments or cure. ❤
Sentinel
Member
- Apr 6, 2021
- 96
- Tinnitus Since
- Late November/Early December 2020
- Cause of Tinnitus
- Really epic hobbies
It reduced the severity of my most prominent and irritating tone. I wore sound canceling headphones before, during, and after the trial as a control. It used to drive me insane, about a month after the injection the sound reduced and I'm able to use my headphones to block out the sounds of my neighbors and nearby traffic and only hear what my original tone was reduced to more a hiss, my center of the head hiss, and my oscillating dial tone/drone in my right ear.
It's much improved and I've not seen a return to that original level.
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