“Tinnitus Truths”

[Wrfortiscue]

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. ❤

How often do you have those spikes that last that long? Is 17 months considered a spike?

 

[OnceUponaTime]

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.

Thank you for the good vibes, @UKBloke. And thank you for reassuring me that it is ok to seek help even after 10 years. That for sure is a tinnitus truth!



I am usually optimistic and can keep going even when the going gets tough but these past days, I've just been in need of a little push and reassuring words to get me pass this moment.

Outside of Tinnitus Talk, no one can understand what we go through, every day. No one.

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. ❤

You are so sweet @Ken219. Thank you for reaching out. I am sorry you have had this spike for so long. Yes, it almost feels like a "drill" when it hits us again out of nowhere. I hope it settles down for you. Praying for you.

 

[Ken219]

How often do you have those spikes that last that long? Is Bbspike?

In the 30 plus years I have gotten a spike approximately every 6-7 years and usually it takes 12-18 months to rehabituate. The spikes usually come when I'm super stressed.

Is 17 months considered a spike? From my experience unfortunately yes.

 

[Wrfortiscue]

In the 30 plus years I have gotten a spike approximately every 6-7 years and usually it takes 12-18 months to rehabituate. The spikes usually come when I'm super stressed.

Is 17 months considered a spike? From my experience unfortunately yes.

Geeze man, I'm sorry. Sounds like your baseline increases and you habituate. Luckily it doesn't happen often with you.

 

[mrbrightside614]

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.

In regards to your center of the head hiss, is it maskable? Did it not used to be? Does it react to headphones and/or external stimuli to force its way to be louder than it? Thanks ahead of time.

 

[Elmer B Fuddled]

In regards to your center of the head hiss, is it maskable? Did it not used to be? Does it react to headphones and/or external stimuli to force its way to be louder than it? Thanks ahead of time.

That centre of the head hissing can be unbearable sometimes for sure. I use my white noise app in my hearing aids to help block that damn hissing. It helps, doesn't cure, but at least takes my brain off the damn noise.

 

[mrbrightside614]

That centre of the head hissing can be unbearable sometimes for sure. I use my white noise app in my hearing aids to help block that damn hissing. It helps, doesn't cure, but at least takes my brain off the damn noise.

I was successful masking that noise for 40 minutes with low-volume pink and brown noise through headphones, then it reacted to be louder than the headphones. I'm hoping in time my reactivity will fade and I'll be able to do just this.

 

[Elmer B Fuddled]

I was successful masking that noise for 40 minutes with low-volume pink and brown noise through headphones, then it reacted to be louder than the headphones. I'm hoping in time my reactivity will fade and I'll be able to do just this.

I went through the same, at first with white noise app, the hissing and ringing was trying to outdo the white noise app. I realized if I set the volume of the white noise app just below the ringing by a decibel it kept the ringing under control. Other than that I really have no explanation as to why or what the hell is going on.

 

[Lane]

I'm not well at the moment but holding on for better days. Warm hug.

So sorry to hear this @OnceUponaTime, but I'm really happy to see the great support you're getting from others. Was especially nice to hear from @Daniel Lion again; have missed his presence on the board.

Perhaps I should thank you for bringing him out of hiding? I do hope things can improve for you soon!

That for sure is a tinnitus truth!

Careful, @Jazzer might want to get some royalties from that. (Hi Dave!)

 

[UKBloke]

Careful, @Jazzer might want to get some royalties from that. (Hi Dave!)

Lol

 

[OnceUponaTime]

I do hope things can improve for you soon!

Thank you, @Lane!
One day at a time is all we can do.
Maybe more relaxation exercises?

Careful, @Jazzer might want to get some royalties from that.

Oh, boy...

 

[Sentinel]

In regards to your center of the head hiss, is it maskable? Did it not used to be? Does it react to headphones and/or external stimuli to force its way to be louder than it? Thanks ahead of time.

It's pretty stable, Klonopin reduces it somewhat.

It's maskable but it's gotta be pretty loud or rather specific not to perceive it at all. I have an air purifier I got a year ago and that usually masks it during the day but when I lay down at night for some reason I perceive it more. It doesn't get louder when there is the noise, it just cuts through easier than the standard tinnitus "eeeeeeeee" sound. Being around actual flowing water completely masks it, it's more a matter of finding what sound to use than a volume thing. When I wear my sound-canceling headphones or listen to music (quietly) it doesn't react. If I'm exposed to a loud sound and have a temporary spike, it's a completely different sound for a while although the hissing seems to be an extension of that.

Sorry, it is so complicated. But like I mentioned, if I listen to a 10-14 kHz ACRN track for long enough it'll go away or reduce by 90% for a while. I listened quietly to it one time for a while and had 30 minutes of silence from this tone.

 

[bobvann]

I am binge watching Babylon 5. In it the planet of the shadows (mortal enemies) is called Zahadum, pronouced Zahadoom. Ours would be called Zahadommed!

Sung in Kiss's cold gin.

It's tinnitus time again (guitar riff), you know it always wins...

 

[Daniel Lion]

Hi @OnceUponaTime, just a thought, something that helps me regularly cope with 24/7 tinnitus.

Head massage. Having your temples rubbed and all over your head. I do this regularly and after about 20 minutes of knuckles rubbing into my scalp a lot of physical tension dissipates. I know this would be costly, but you could literally find a local in need of some cash and train them up. Maybe one of your family members could give it a go. I'm not very good at relaxing and generally do some hardcore exercise to calm things down.

If you haven't tried a head massage, please do, and if the person giving it is good you can even have them gently pull your earlobes and hit some pressure points in the ear lobe. It's been a godsend for me.

Once, I am making art again and have started in earnest a new life where I am handicapped, have my 24/7 tinnitus, PTSD and other body aches.

I feel gratitude daily and often feel happy despite my fear, my noise and other negative thoughts that pass my way. With this condition, I know things could change for the worse at any moment so generally I try to make the best of the moment. I'm not writing much these days but read the forum regularly to see how folks are doing. I make a lot of art again... My son Noah encouraged and helped me to get that going in my life again, he would counter my desperation with encouragement and a belief that I could function again. My entire family has been awesome, not just Noah.

I will be so happy when I get word that you are feeling better. We all know each other's pain to well and we are a family.

So my sister. Take good care and know we are all pulling for you and praying that the noise and pain calms down ASAP.

XX

 

[bobvann]

Crap I misspelled Zahadoomed!

 

[Damocles]

I am binge watching Babylon 5. In it the planet of the shadows (mortal enemies) is called Zahadum, pronouced Zahadoom. Ours would be called Zahadoomed!

Zahadoom, eh?

I've got a strong feeling I've visited this planet before... (≖_≖ )

Oh yeah!

 

[Greg Sacramento]

@Daniel Lion, thanks for checking in with me and for the love a while back. So special to see you posting.

About the only thing that I still have going is a good memory. I remember giving your loving post a "like", but I didn't respond. I want to respond now because I may not have many more chances.

I have so much serious disease and pain. An abdominal aortic aneurysm has enlarged along with loss of most eyesight from a hypertension crisis. My legs and feet are swollen to the size of balloons from this trauma. Cut nerves in mouth have destroyed all my teeth. The pain everywhere ----------------. Then I got this tinnitus thing, so many sounds. This is just a starter list. I'll shut up now.

I guess we will never meet in New England.

Wishing you love, my friend.

 

[Lane]

During several decades of dealing with a chronic, debilitating health situation (CFS), I often relied on music to "soothe my Soul". The following is one of my favorites. It has sort of a mystical, haunting quality to it. I've often thought many on this forum might find some comfort in it as well, especially during times of crisis. Thought I'd go ahead on post it here for anybody who might want to take 5 minutes to enjoy some artistic beauty. And maybe find some comfort as well.

Best to all...

Dante's Prayer -- by Lorena Mckennitt

Dante's Prayer Lyrics
Artist: Loreena McKennitt (Buy Loreena McKennitt CDs)
Album: The Book Of Secrets

When the dark wood fell before me
And all the paths were overgrown
When the priests of pride say there is no other way
I tilled the sorrows of stone

I did not believe because I could not see
Though you came to me in the night
When the dawn seemed forever lost
You showed me your love in the light of the stars

Cast your eyes on the ocean
Cast your soul to the sea
When the dark night seems endless
Please remember me

Then the mountain rose before me
By the deep well of desire
From the fountain of forgiveness
Beyond the ice and the fire

Cast your eyes on the ocean
Cast your soul to the sea
When the dark night seems endless
Please remember me

Though we share this humble path, alone
How fragile is the heart
Oh give these clay feet wings to fly
To touch the face of the stars

Breathe life into this feeble heart
Lift this mortal veil of fear
Take these crumbled hopes, etched with tears
We'll rise above these earthly cares

Cast your eyes on the ocean
Cast your soul to the sea
When the dark night seems endless
Please remember me...

 

[Sentinel]

During several decades of dealing with a chronic, debilitating health situation (CFS), I often relied on music to "soothe my Soul". The following is one of my favorites. It has sort of a mystical, haunting quality to it. I've often thought many on this forum might find some comfort in it as well, especially during times of crisis. Thought I'd go ahead on post it here for anybody who might want to take 5 minutes to enjoy some artistic beauty. And maybe find some comfort as well.

Best to all...

Dante's Prayer -- by Lorena Mckennitt

Dante's Prayer Lyrics
Artist: Loreena McKennitt (Buy Loreena McKennitt CDs)
Album: The Book Of Secrets

When the dark wood fell before me
And all the paths were overgrown
When the priests of pride say there is no other way
I tilled the sorrows of stone

I did not believe because I could not see
Though you came to me in the night
When the dawn seemed forever lost
You showed me your love in the light of the stars

Cast your eyes on the ocean
Cast your soul to the sea
When the dark night seems endless
Please remember me

Then the mountain rose before me
By the deep well of desire
From the fountain of forgiveness
Beyond the ice and the fire

Cast your eyes on the ocean
Cast your soul to the sea
When the dark night seems endless
Please remember me

Though we share this humble path, alone
How fragile is the heart
Oh give these clay feet wings to fly
To touch the face of the stars

Breathe life into this feeble heart
Lift this mortal veil of fear
Take these crumbled hopes, etched with tears
We'll rise above these earthly cares

Cast your eyes on the ocean
Cast your soul to the sea
When the dark night seems endless
Please remember me...

Thanks for posting this.

I love this song and have returned to it many a time for solace and comfort. My parents have her CDs from her early output, I'm 22 now but when I was little we'd listen to her on car rides. It's one of those fond childhood memories I return to when life overwhelms me. Such powerful nostalgia. Her 2014 album "An Ancient Muse" is great too and worth checking out.

 

[Daniel Lion]

@Daniel Lion, thanks for checking in with me and for the love a while back. So special to see you posting.

About the only thing that I still have going is a good memory. I remember giving your loving post a "like", but I didn't respond. I want to respond now because I may not have many more chances.

I have so much serious disease and pain. An abdominal aortic aneurysm has enlarged along with loss of most eyesight from a hypertension crisis. My legs and feet are swollen to the size of balloons from this trauma. Cut nerves in mouth have destroyed all my teeth. The pain everywhere ----------------. Then I got this tinnitus thing, so many sounds. This is just a starter list. I'll shut up now.

I guess we will never meet in New England.

Wishing you love, my friend.

Wishing you love and peace as well my friend and big brother.

Praying for you always.

Talk soon,
Daniel

 

[OnceUponaTime]

Hi @Daniel Lion,

I have not tried head massages, but I will definitely give it a try.

Makes me happy to know you are making art again. Can you share some with us?

I am still sewing and enjoy learning herbalism. I was studying to take my ham radio test but had to stop because of the severe headaches. I also like to can my food (mastering the art ) but my favorite thing to do right now is crochet. It helps me to relax. So doing the things we love and enjoy can definitely have a positive impact in our life.

I feel gratitude daily and often feel happy despite my fear, my noise and other negative thoughts that pass my way. With this condition, I know things could change for the worse at any moment so generally I try to make the best of the moment.

I am so glad you are doing much better and feel happiness in your life again. I understand exactly how you feel about this condition changing at any moment. I am still going through this spike and just praying it will calm down.

You have been blessed with a good son. I'll keep you both in my prayers.
Thank you for your well wishes and prayers, Daniel. Keep in touch.

Warm Hug,
Once

 

[OnceUponaTime]

I have so much serious disease and pain. An abdominal aortic aneurysm has enlarged along with loss of most eyesight from a hypertension crisis. My legs and feet are swollen to the size of balloons from this trauma. Cut nerves in mouth have destroyed all my teeth. The pain everywhere ----------------. Then I got this tinnitus thing, so many sounds. This is just a starter list. I'll shut up now.

Hey Greg,

So sorry to hear of your health problems. Some of us don't really know the heavy burdens others bear. I will pray for you... for peace, for relief, for healing and for strength to face each day.

I was going to ask you about low drone tinnitus but, I won't bother you with that. @valeri gave me the information you gave her a couple of months ago. I hope and pray this drone will calm down.

Wishing you pain free days,
Once

 

[Greg Sacramento]

@OnceUponaTime, thank you and I wish you peace.

I remember when we first met here, years ago on a Friday - I was hurting. You checked back with me on Saturday morning.

Hugs.

 

[Jazzer]

So sorry to hear this @OnceUponaTime, but I'm really happy to see the great support you're getting from others. Was especially nice to hear from @Daniel Lion again; have missed his presence on the board.

Perhaps I should thank you for bringing him out of hiding? I do hope things can improve for you soon!

Careful, @Jazzer might want to get some royalties from that. (Hi Dave!)

Hi Lane, Once, Daniel.

I haven't been coming here recently - so much to cope with just now, but I have noticed that when I stay away I do miss you guys.

As well as my considerable medical issues I am still having counselling for the loss of my sweetheart. That is really hard for me.

I will make a resolution to look in more frequently. Best wishes to all of us that suffer,

Dave x
Jazzer

 

[Jazzer]

Dear @OnceUponaTime - I have just read through this recent thread having been absent for the best part of a week with crippling migraines. I see you have been struggling dreadfully, and with similar issues. I am so sorry, but very pleased to see that all of the stalwart caregivers have been supporting you so well. You sure are loved Once.

If love alone could cure us we would all be better, I do know that.

My head was so painful that I told my lovely bereavement counsellor that I didn't want to go on.

She said "What would Sylvie say if she heard you say that?"

I said "She wouldn't be too impressed."

"Wouldn't be too impressed?? I can tell you - she'd be bloody furious!!"

Despite my distress she got me laughing again.

My head seems back to normal now, that is pain free but still noisy as hell. My daily meditation - when I let all thoughts just fade away, is my real secret weapon.

Peace and love Once,
Dave xx
Jazzer

 

[DebInAustralia]

I was successful masking that noise for 40 minutes with low-volume pink and brown noise through headphones, then it reacted to be louder than the headphones. I'm hoping in time my reactivity will fade and I'll be able to do just this.

Are you ok?

 

[Damocles]

 

[Damocles]

 

[emmalee]

View attachment 49347

~Your body's ability to heal is greater than anyone has permitted you to believe~

 

[emmalee]

View attachment 49348

"Keep your dreams alive. Understand to achieve anything requires faith and belief in yourself, vision, hard work, determination, and dedication. Remember all things are possible for those who believe."