Need Support from Loud Tinnitus Sufferers

[Elliott.S]

Hi guys,

Been suffering with this condition for 15 years but the last 2 weeks have been hard to cope with. I've been hearing new sounds in my right ear, and I just can't mask it.

I have 3 different sounds in my left (low, medium, high), 2 different sounds in my right (high/ super high: 13 000 Hz), and I am super tired of it, really.

Nothing will mask the 13 000 Hz tinnitus. Plus it is sound reactive... The more noise, the more it's ringing.

I need support and advice from people who suffer with severe tinnitus and handle it. I'm sorry to say I'm not interested in feedback from people who can only hear their tinnitus when in complete silence and still complain about it being unbearable. I hope to read from people who have actual severe tinnitus.

I know suicide is not a option because I have a 12 months baby, but each day feels worse than the day before. Obviously, I've seen an ENT for a checkup, been taking Clonazepam to help, seen 3 hypnotherapists, acupuncture, etc. etc...

Nothing helps.

Only maybe taking huge doses of Clonazepam do bring some slight relief for one hour.

Thanks.

 

[Daniel Lion]

Hi Elliot, you got me stumped...

My tinnitus is loud and relentless, it rarely changes. I hold it together for my kids.

Your condition and your suffering sounds worse than mine, and I'm really sorry. You don't deserve this suffering, you should be enjoying your baby.

Having said that, there are actual treatments that are going to be available, whether it be bimodal stimulation such as Neuromod, or the REGAIN, Frequency Therapeutics hearing regeneration programs, if they work... in a few years.

I do saunas, I swim, I cried this morning after dropping my kids off to school, and now I'm just chilling as I write you. Hold on for the new therapies, perhaps try a different medication, and hang on bro...

I wish I could be helpful but I myself am just learning the ropes.

Jazzer, a member here has bad loud tinnitus and he uses meditation to cope, and he copes rather well... I think he started two threads, one on meditation and the other called coping variables.

My heart goes out to you... hold on tight to your loved ones.

 

[Elliott.S]

Thank you very much for your message Daniel. I am sorry that you have to endure loud tinnitus too, and I deeply understand what you mean by "I hold it together for my kids".

 

[Ken219]

I have loud tinnitus. I have had several relapses, currently having one now. I pray, I cry, I hope for a cure or treatment. I take Xanax, Prozac, sleeping meds. It takes months but I've always habituated. Meaning the sound doesn't go down but I'm okay with it. I won't kid you, during the relapses it is a living hell! I work in computer systems and applications. At work it is quiet. I cry inside. I hear you have a reason to go on. Hang in the best you can and may God bless you.

 

[Jazzer]

@Elliott.S, @Ken219, @Daniel Lion,
Dear chaps
- as Daniel has said, my tinnitus is severe; voice matched to 60 dBs, permanent and constant.
I won't go through the whole story just now, you can find that on other started threads, but I'll just tell you that I've been a professional jazz trombonist for over 50 years (now aged 76).
I was first call trombonist for five bands when I decided I had to pull out of the jazz scene, or risk further damage.

My spike came in 2014 and never went down.
I was absolutely positive that I would have to die.
I would never get used to it.
I couldn't get off of my couch - laying there sobbing, totally distraught.
It took quite a long time, but things are better for me now.
I look back at that time as 'active sufferance' whereas now I have 'passive sufferance.'

Largely by using my daily routine of meditation I have managed to acclimatise to the noise.
It is still there of course, but I no longer 'dwell' on it.
It took my career, my passion in life, my musicality, my skill, my artistry, and my silence.
That is enough.
It will not take my determination, my sense of humour, my love for my family, not forgetting three adorable pussycats, and my life.

If you guys can just hang on, maybe learn to practice some meditation, give yourself some time to acclimatise a little, I honestly think you will come to feel better.
(Active suffering may become more passive.)

My meditation is dead simple.
I will share it if you wish.

Love to all
Dave x
Jazzer

PS - see Jazzers Videos on this site,
and watch 'Dave's Tinnitus Story' on YouTube.

 

[Elliott.S]

@Elliott.S, @Ken219, @Daniel Lion,
Dear chaps
- as Daniel has said, my tinnitus is severe; voice matched to 60 dBs, permanent and constant.
I won't go through the whole story just now, you can find that on other started threads, but I'll just tell you that I've been a professional jazz trombonist for over 50 years (now aged 76).
I was first call trombonist for five bands when I decided I had to pull out of the jazz scene, or risk further damage.

My spike came in 2014 and never went down.
I was absolutely positive that I would have to die.
I would never get used to it.
I couldn't get off of my couch - laying there sobbing, totally distraught.
It took quite a long time, but things are better for me now.
I look back at that time as 'active sufferance' whereas now I have 'passive sufferance.'

Largely by using my daily routine of meditation I have managed to acclimatise to the noise.
It is still there of course, but I no longer 'dwell' on it.
It took my career, my passion in life, my musicality, my skill, my artistry, and my silence.
That is enough.
It will not take my determination, my sense of humour, my love for my family, not forgetting three adorable pussycats, and my life.

If you guys can just hang on, maybe learn to practice some meditation, give yourself some time to acclimatise a little, I honestly think you will come to feel better.
(Active suffering may become more passive.)

My meditation is dead simple.
I will share it if you wish.

Love to all
Dave x
Jazzer

PS - see Jazzers Videos in this site,
and watch 'Dave's Tinnitus Story' on YouTube.

I would be very much interested in your meditation process. To be honest, I'm interested in anything that could help me a little bit right now.

 

[Jazzer]

I would be very much interested in your meditation process. To be honest, I'm interested in anything that could help me a little bit right now.

Okay Elliot.

I am not some super-duper meditational guru, so my method is very simple.
When I stared meditating years ago, I used to do it sitting up in a comfortable chair.
With the advent of tinnitus I found that I needed more help to 'put myself out.'
I experimented and found that a nice hot bath was perfect.
I now drift off in less than a minute.

Teaching yourself relaxation may help you acclimatise to the sound, and eventually concentrate on it less.

My own daily meditation.
(I am five years into this thing.)
Straight from my bed I am into a hot bath.
I make myself comfortable.

Make sure that your teeth are apart with a hanging jaw, but your lips are closed.
Allow your mouth to go quite quite soft.
Your tongue is now floating in water.
Head to one side to free up your airway.
Ask your tummy to take over your breathing.
Allow it to assume a natural rhythm of its own.
Hear your tinnitus, but do not listen to it.
Do not concentrate on it. It is just there.

With each 'Out Breath' think the word 'deep,'

With each 'In Breath' think the word '-er.'

'Deep-er.....Deep-er.....Deep-er.....Deep - er.'


You may lay there gently concentrating on your involuntary breathing as you drift off into a meditational doze.
You may fall asleep.

Either way, you are hearing tinnitus to begin with but replacing the experience with deep relaxation.
It may take several attempts to start to achieve an easier state of mind where a degree of acceptance becomes the norm.
For me, a daily practice of meditation is vital.
Whatever my level of Tinnitus, whatever practical worries I have going on in my mind, I find I can still calm down, relax deeply, and reach my own personal place of safety.
I indulge myself in this position for as long as feels good.

Later in the day when things may start to bother me, I remember my meditation, ask my tummy to take over my gentle breathing once again, and reset my mood.

Best wishes
Dave x
Jazzer

 

[Jack Straw]

Hi guys,

Been suffering with this condition for 15 years but the last 2 weeks have been hard to cope with. I've been hearing new sounds in my right ear, and I just can't mask it.

I have 3 different sounds in my left (low, medium, high), 2 different sounds in my right (high/ super high: 13 000 Hz), and I am super tired of it, really.

Nothing will mask the 13 000 Hz tinnitus. Plus it is sound reactive... The more noise, the more it's ringing.

I need support and advice from people who suffer with severe tinnitus and handle it. I'm sorry to say I'm not interested in feedback from people who can only hear their tinnitus when in complete silence and still complain about it being unbearable. I hope to read from people who have actual severe tinnitus.

I know suicide is not a option because I have a 12 months baby, but each day feels worse than the day before. Obviously, I've seen an ENT for a checkup, been taking Clonazepam to help, seen 3 hypnotherapists, acupuncture, etc. etc...

Nothing helps.

Only maybe taking huge doses of Clonazepam do bring some slight relief for one hour.

Thanks.

What was your tinnitus like before the worsening and now after. Please use this chart as reference.

Is it the pitch that makes it unmaskable or the volume?

 

[PeteJ]

Mine is between 8 and 10. I don't have a s/o or kids.

 

[Jazzer]

What was your tinnitus like before the worsening and now after. Please use this chart as reference.

View attachment 29803

Is it the pitch that makes it unmaskable or the volume?

Hi Jack - I know that your enquiry was not to me, but I thought I would just mention that my tinnitus is no. 9 on this scale.
Yes - after my acoustic trauma five years ago I have heard 'T' every second of my life, and no other sound can match or mask it.
As a result I experienced anxiety and panic attacks all of the time.
'Must constantly use masking to sleep' does not follow.
I have never used masking to sleep, because there is nothing that could mask it.
I use meditation techniques to fall asleep.

My noise is 'indoors' of course, and has never once relented.
I have trained myself not to freak out or panic, so according to your chart no. 9 is not applicable to me.
I really dispute the parameters of the grading.
Sorry to interrupt.
Dave x
Jazzer

 

[Jack Straw]

Mine is between 8 and 10. I don't have a s/o or kids.

I thought you said you can hear yours when the radio is playing on low volume?

 

[Jazzer]

Mine is between 8 and 10. I don't have a s/o or kids.

Pussycats are a tremendous source of love and support. I have three and they virtually pulled me through.
Just a thought Pete. xx

 

[Elliott.S]

What was your tinnitus like before the worsening and now after. Please use this chart as reference.

View attachment 29803

Is it the pitch that makes it unmaskable or the volume?

Went from 8 to 10. It is sound reactive. High hiss / static noise at around 13000 Hz. Can't really know about the volume though, as I can't mask the pitch already.

 

[PeteJ]

I thought you said you can hear yours when the radio is playing on low volume?

Yep. . That's why I said 8 - 10.

 

[Jack Straw]

Yep. . That's why I said 8 - 10.

Low volume radio is like 40-45 decibels. That would more likely be a 4 on that scale.

 

[PeteJ]

Low volume radio is like 40-45 decibels. That would more likely be a 4 on that scale.

I can hear it. It doesn't mean it's clear or I can enjoy listening to it.

 

[Starthrower]

I would be very much interested in your meditation process. To be honest, I'm interested in anything that could help me a little bit right now.

@Elliott.S yes on using meditation methods. For me I needed more guided meditation CDs and a good set of bose noise canceling headset. Also I created my own music therapy. Nothing professional just a list of songs that I noticed tamed the loudness for some reason.

I do this every single day for one hour. And at night when it is quiet and that screeching is in my brain I recall the repeating songs that get into my mind because of using the CD every single day.

 

[CMIH]

Forgive me for stating the obvious, but make sure you're not taking any medications (Rx or OTC) that are ototoxic.
https://en.wikipedia.org/wiki/Ototoxicity

 

[Elliott.S]

Forgive me for stating the obvious, but make sure you're not taking any medications (Rx or OTC) that are ototoxic.
https://en.wikipedia.org/wiki/Ototoxicity

I'm not taking any ototoxic medication.

 

[Bill Bauer]

but the last 2 weeks have been hard to cope with

Would you know why it got worse?

 

[vermillion]

Hello @Elliott.S

I also have multi-sound, reactive tinnitus with dysacusis symptoms as the cherry on top!
You have this 15 years, I have it for only 3. However, mine progressed to this kind in such a "short" time.
Gradually I quit my dancing career & my dance instructor career which was going amazingly good before this happened to me. At some point, I felt I habituated but then things changed again. Lately, I have really bad days.
Every day I go to work. I changed my job now. I do office work. This condition is very hard to live with, so I understand. I also want to connect with people who have tinnitus like my kind, because I can't relate to the others. I don't want to be offensive, nor I underestimate the pain of these people, but man we are dealing with a different kind of beast here.

BW
V.

 

[Elliott.S]

Hello @Elliott.S

I also want to connect with people who have tinnitus like my kind, because I can't relate to the others. I don't want to be offensive, nor I underestimate the pain of these people, but man we are dealing with a different kind of beast here.

BW
V.

You are not being offensive, I understand how you feel, as I'm living it myself. And I think people with "mild" tinnitus don't take it as an offense either, because they can imagine how the suffering can get so much worse.

 

[Ken219]

Been suffering with this condition for 15 years but the last 2 weeks have been hard to cope with.

I cannot get offended. I have had tinnitus for 30 years. When I first heard about it in 89 it was a low sound. I went to an ENT and did the usual tests. Which were negative. The Doctor said I was okay and and I thought it was an aging process. Didn't ask questions back then and the doc didn't offer any prevention of it getting worse.

A year later LOUD! Before internet I went to the public library to research this 'tinnitus'.

First cause loud noise exposure! Thanks doc but no thanks. I was a mess. I was institutionalized. My doc and I worked out a medication plan. I educated the doc about tinnitus and what meds might help. Tried various meds and finally went home.

I took Bio-feedback and other therapies and approx 14 months later habituated.

Fast forward I have had at least 4 relapses (just happens, can't say why, stress? who knows?) and with time have always habituated. I believe you are in your first relapse, and I am in my 4th. During this process I pray. I cry inside and out (when I am alone). I always habituate and expect to do it again. Let's do this together. G-D bless.

 

[JohnFox]

Hi Elliott. So sorry to hear about your severe Tinnitus. It sounds as if yours may be a bit more severe than mine at this stage, although mine too is life changing. Mine is mostly "sound reactive", (one ear), so I aways have an ear plug to insert into my one good ear. My right ear is completely deaf. It is sound entering my left ear that fuels the tinnitus inside my right (deaf) ear. So, at least I know that I can get "some relief " by plugging my good ear. By relief, I mean that the intensity of the T goes down to a steady hissing buzz, making it easier to ignore, verses having it fluctuating all over the place, up and down sometimes to the point where it feels like the inside of my head is literally vibrating.

My advice to you is to continue to try out and experiment with some kind of treatment/therapy that will offer you some degree of relief if even for a short period of time (without relying on drugs). For example I really think there is something to be said about jazzers method of meditation. I would definitely give that a good try and see if it's something that might work for you. I am sure it will take some time and perseverance to work into this kind of meditation. But,.....if you can discover something like this that really works, then even if it is only a temporary relief, at least you know you have that "place" you can go to. Your T might be feeling barely tolerable, but at least in your mind you know that you have something that you will be able to do to get "relief".

We all need some kind of hope to go on. I think that the suicidal thoughts are often born out of a sense of simply not having any hope of the future. I too had those thoughts during the first few weeks of completely losing my hearing in one ear, and now left with all this hissing, squeaking, static noise in my head. I thought "are you KIDDING ME!! I truly felt lost. Now as bad as it sometimes gets, I know that there will still be times where it is not so bad, and I simply live on that hope.

Ending this, I must also include that I have a very strong faith in God that for me leaves me wondering how others cope with this scourge without that relationship with God. I do not "preach" here in this forum and rarely even mention my faith because I know there are many secular tinnitus sufferers here and I am not here to preach to or judge anyone. I have received much help from many others in here and I am grateful for that, and hope that some of my posts may also offer some help to others a little bit regardless of their spiritual persuasion. However, the plain truth is that without my faith that gives me so much sense of purpose in life, I am sure I would be more inclined to entertain the worst thoughts about how to go on, or not go on. I have been considering this, and what I think I'll do is write a detailed "blog" on my "personal faith" and how I have been able to reconcile this life changing event in my life that began about 6 1/2 moths ago, with my faith in God. Then, on this public forum, I can just briefly mention my faith with the inclusion that if anyone would like to hear more about it and how it has helped me deal with my tinnitus, they can simply click on the attached blog site and go there to read it in more detail. Or not. I have never written a blog, so I need to find a good source for that. More on that later...

Sorry again Elliott. I truly hope that you can find that way to go on that gives you real hope for the future. You have so much to live for. Your child needs you. And I am sure not just your child, but many others also. It may seem hopeless right now, but I truly believe that there is a way to go on that will have at least a degree of positivity, and a certain quality of living. Blessings to you and hang in there bro. J

 

[PeteJ]

I wish there was some way to reduce it.

It spikes in the evening, it seems. I used to be able to rely on it subsiding around 9pm and I would choose whatever time then to try and sleep.

It hasn't fluctuated like that in over a month. I am afraid that this will just deteriorate my health further. It's hard for me to sleep even if I have an app playing and the fan running outside my room doesn't help much either.

 

[Digital Doc]

I wish there was some way to reduce it.

It spikes in the evening, it seems. I used to be able to rely on it subsiding around 9pm and I would choose whatever time then to try and sleep.

It hasn't fluctuated like that in over a month. I am afraid that this will just deteriorate my health further. It's hard for me to sleep even if I have an app playing and the fan running outside my room doesn't help much either.

While my tinnitus is mild now, 6 mos ago it was severe, as it was loud enough to wake me from sleep after a few minutes, and after that subsided, gave me hyperacusis for some time as well.

My tinnitus spikes in the evening as well, and lowest when first waking up in the morning. After I was initially improving, I relapsed pretty badly from an alarm clock going off in my ear, and I then decided to sleep with earplugs, for a time of acoustic rest. I quickly noticed that my tinnitus would be even quieter in the morning. I also added daily omega3, which seemed to help as well, and took it in the afternoon to try and blunt the evening spike in tinnitus, which seemed to help as well.

I also vigilantly protected from any further noise exposures, including intermittent ones like when taking a walk next to traffic. This went on for months, but it slowly (although not consistently) got better.

I hope my experience helps you and others.

 

[Michael Leigh]

I need support and advice from people who suffer with severe tinnitus and handle it. I'm sorry to say I'm not interested in feedback from people who can only hear their tinnitus when in complete silence and still complain about it being unbearable. I hope to read from people who have actual severe tinnitus.

HI @Elliott.S

It might be a good idea to return to ENT so tests can be carried out on your auditory system to find out if there is anything that has caused your tinnitus to increase. If nothing can be found, I advise that you asked to be referred to Audiology to see a Hearing Therapist or Audiologist that specialises in tinnitus and hyperacusis treatment & management.

I gather that your tinnitus was originally caused by "exposure to loud noise". This type of tinnitus does not usually get worse on its own. It is for this reason I have suggested that you return to ENT for tests. However, the usual reason for "Noise induced tinnitus " getting worse, is that a person is either, using headphones or is being exposed to overly loud sounds, or attending clubs and concerts where loud music is played? If you work in a noisy environment or being exposed to other loud sounds this can also cause your tinnitus to increase. If you are using headphones even at low volume, then I advise you to stop using them as this is probably making your tinnitus worse. People that have noise induced tinnitus and use headphones even at low volume, risk making their tinnitus increase.

When you return to ENT for tests, if no underlying medical problem is found to be making your tinnitus worse, then I advise that you to look at your lifestyle. Although stress can increase Noise induced tinnitus, this is usually temporary, the more common reason is exposure to loud noise/sounds of the type I've mentioned above.

Hope you start to feel better soon
Michael

 

[fishbone]

HI @Elliott.S

It might be a good idea to return to ENT so tests can be carried out on your auditory system to find out if there is anything that has caused your tinnitus to increase. If nothing can be found, I advise that you asked to be referred to Audiology to see a Hearing Therapist or Audiologist that specialises in tinnitus and hyperacusis treatment & management.

I gather that your tinnitus was originally caused by "exposure to loud noise". This type of tinnitus does not usually get worse on its own. It is for this reason I have suggested that you return to ENT for tests. However, the usual reason for "Noise induced tinnitus " getting worse, is that a person is either, using headphones or is being exposed to overly loud sounds, or attending clubs and concerts where loud music is played? If you work in a noisy environment or being exposed to other loud sounds this can also cause your tinnitus to increase. If you are using headphones even at low volume, then I advise you to stop using them as this is probably making your tinnitus worse. People that have noise induced tinnitus and use headphones even at low volume, risk making their tinnitus increase.

When you return to ENT for tests, if no underlying medical problem is found to be making your tinnitus worse, then I advise that you to look at your lifestyle. Although stress can increase Noise induced tinnitus, this is usually temporary, the more common reason is exposure to loud noise/sounds of the type I've mentioned above.

Hope you start to feel better soon
Michael

Indeed tinnitus should not just keep getting worst unless there is some underlying reason. Many factors can make tinnitus louder. Once the mind is activated to signal the tinnitus, it can become sensitive and many things can ramp up the ringing/noise. Many might not realize it but stress is a huge issue when it comes to tinnitus. It can take a toll on the mind and body and just annoy the tinnitus. Poor diets can also have a domino effect on the body, mind and that can annoy the ringing.


Low stress, talking it out can work wonders for tinnitus management. Exercise can also be helpful. It all about the person and what works for them. Severe tinnitus is horrible and I face it 24-7. It is what it is and I keep pushing forward. It's never an easy thing but that's how I roll.....

 

[Michael Leigh]

Indeed tinnitus should not just keep getting worst unless there is some underlying reason. Many factors can make tinnitus louder. Once the mind is activated to signal the tinnitus, it can become sensitive and many things can ramp up the ringing/noise. Many might not realize it but stress is a huge issue when it comes to tinnitus. It can take a toll on the mind and body and just annoy the tinnitus. Poor diets can also have a domino effect on the body, mind and that can annoy the ringing.


Low stress, talking it out can work wonders for tinnitus management. Exercise can also be helpful. It all about the person and what works for them. Severe tinnitus is horrible and I face it 24-7. It is what it is and I keep pushing forward. It's never an easy thing but that's how I roll.....

Good to see you on the forum @fishbone and well said.

Michael

 

[GregCA]

Indeed tinnitus should not just keep getting worst unless there is some underlying reason.

A pretty universal reason is getting old, which naturally deteriorates our hearing apparatus. That's why even "healthy older people" are regularly introduced to the joys of tinnitus due to their progressive loss of hearing (presbycusis). Thankfully, not all people who age get tinnitus, but for those with tinnitus already, losing more hearing as we age is generally not moving the needle in the right direction.