Suicidal

[Bartoli]

You think scientist are working on a cure to help the suffering, when in reality psychologist are just trying to figure out ways on how to take people off disability income.

You know what else would take people off disability income?
A cure.

 

[Christopher805]

Christopher

I feel I could have written most of your post. Actually I have written this feeling a dozen of times without posting it. I never wanted to memorialize it. I so understand the parts about family, withering, the ringing and sound annoyance. It has done nothing but get worse for me too. The high pitch ring, the hyperacusis... I'm at my end. I hoped for a success story too. It's just not in my cards. I'm trapped. I can't go forward with it and afraid of what ending it would do to those left behind. I've read your feelings here about responsibility with kids, and I share them, but it hurts and the balance gets harder everyday. I wish I had more hope. It's really damning how quickly life can change. I am so sorry for what you've gone through. I share all you're heartbreak and disappointment. I don't know what tomorrow will bring and it scares me.

Hi Capstan,

I am very sorry that you could have written my post. Your words resonate with me and I am sure unfortunately for many others on the forum. Like you I was very hesitant to post my feelings. However, I think it helps to have a place, like the forum, to purge them from your soul. We are under a constant barrage of emotions, many that most of us have never experience until this heinous affliction. Now, I have to learn, as though a child, a new set of life skills, which can be daunting. You will get over your fears and continue to envision that tomorrow will be better than the previous day. Our families need us, hell we need us. We do not love our circumstances but we do love life and those that love us. I pray your condition improves to a point where you feel a renewed purpose for life. Thank you for your empathetic words. Be Well.

 

[Contrast]

You know what else would take people off disability income?
A cure.

I agree, that's MPP's wager.

However the NIH would consider that negotiating with terrorist. As long as tweaking chemicals in the brain can alter behavior, they are going to go down that route.

 

[Christopher805]

I hate to say it, but a number of people on this forum are convinced that noise cancelling headphones made their tinnitus worse.

There is no actual hypothesis about the mechanism of how this might happen. Nevertheless, people's tinnitus gets worse right after they use noise cancelling headphones, and that's enough proof for them. Personally, I wear earplugs underneath my noise cancelling headphones. The earplugs are there to protect me from the headphones. This setup works well for me.

You might consider wearing earplugs when those noises come on. My plugs of choice are
https://www.amazon.com/3M-1100-Foam-Plugs-200-Pair/dp/B008MVYL7C
You might also want to experiment with low pressure earplugs
https://www.amazon.com/Howard-Leight-Disposable-Earplugs-without/dp/B00O9QV7NK
Their noise reduction is lower, but you don't feel them when they are in. Another downside is that they don't last as long as 3M earplugs. Their noise reduction deteriorates after about 5-7 uses.

Hi Bill,
Thank you for your response.

Is it still bad if you use the noise cancelling headphones with them turned off? In other words, I put them on but do not turn them on. Just use them to dampen the annoying sound. If this still presents a problem for tinnitus I will discontinue and just use ear plugs and ear muffs. Thank you for the suggested brands for the ear plugs. Much appreciated.

 

[Capstan]

Hi Capstan,

I am very sorry that you could have written my post. Your words resonate with me and I am sure unfortunately for many others on the forum. Like you I was very hesitant to post my feelings. However, I think it helps to have a place, like the forum, to purge them from your soul. We are under a constant barrage of emotions, many that most of us have never experience until this heinous affliction. Now, I have to learn, as though a child, a new set of life skills, which can be daunting. You will get over your fears and continue to envision that tomorrow will be better than the previous day. Our families need us, hell we need us. We do not love our circumstances but we do love life and those that love us. I pray your condition improves to a point where you feel a renewed purpose for life. Thank you for your empathetic words. Be Well.

Chris

Thank you for the strong words of encouragement. I unfortunately do not think I'm up to the task of learning these new skills. This ringing in the center of my brain just never leaves. It makes me so sick that I brought so much of this on myself. I made such poor choices even after my initial tinnitus started in 2015. I can't live with myself. Today I spent so much time looking at ways to exit. I have too many hearing issues that I can't see living with them any longer. I wish you better luck. I wish habituation was even an option but mine is now too severe.

I'm so sorry.

 

[Bill Bauer]

Is it still bad if you use the noise cancelling headphones with them turned off? In other words, I put them on but do not turn them on. Just use them to dampen the annoying sound.

There would be no danger of them harming you, but they wouldn't be very effective. There are two types of noise cancelling - active and passive. NC headphones provide only active noise cancelling. 3M's Peltor X5A muffs (that I recommend that you get) provide passive noise cancelling. If you are concerned about Peltor X5A making you look ridiculous, consider buying Peltor X4A. I own both. X5A provide more noise reduction and are more comfortable. However, X4A provide reasonable noise reduction and comfort while looking a lot like headphones.

I am not aware of a product that combines passive and active noise cancelling (all they would have to do is apply the technology used in NC headphones to earmuffs like X5A).

By the way, when you combine earplugs and muffs, the resulting noise reduction is the maximum of the two noise reductions + 5 dB.
https://www.coopersafety.com/earplugs-noise-reduction
https://multimedia.3m.com/mws/media...how-to-use-the-noise-reduction-rating-nrr.pdf

 

[daiso]

Been in my room pretty much all day, not exposed to anything even remotely loud and the burning in my ears is is absolutely terrible

Does not ease up whatsoever, as it doesn't seem to be linked to sound exposure. What kind of neuralgia from hell is this? Take me back to Nov/Dec when I thought tinnitus was my biggest problem. I am exhausted from this chronic burning.

I also had "burning ear" soon after my T started, when my good ear will suddenly feel full and turn completely red and hot. My T ear will be completely normal. It was like clock work. If I didn't have it in the day, it would eventually re-appear in the evening almost always after shower. Sometimes it will fade to normal before bedtime and sometimes it will only recede somewhat. But the whole cycle repeats the next day. The only thing that I found helpful was taking a walk outside and let the cold air cool it down. This had gone on for more than a year until it became more and more infrequent.

 

[Christopher805]

Chris

Thank you for the strong words of encouragement. I unfortunately do not think I'm up to the task of learning these new skills. This ringing in the center of my brain just never leaves. It makes me so sick that I brought so much of this on myself. I made such poor choices even after my initial tinnitus started in 2015. I can't live with myself. Today I spent so much time looking at ways to exit. I have too many hearing issues that I can't see living with them any longer. I wish you better luck. I wish habituation was even an option but mine is now too severe.

I'm so sorry.

James

Hi Capstan,

I am sorry you feel this way. Please take comfort that most of the folks (including myself) on this forum blame themselves for their condition. They feel guilty for their actions or inactions that lead to tinnitus and/or hyperacusis. But they realize they cannot go back and have to move forward. You can and will do the same. You are so blessed to have a loving wife and adoring kids. So many here have no one and are alone dealing with their condition. Please take comfort that you have a strong support system at home. You will get through this. So please forgive yourself as quickly as you forgive others. Also, please seek the advice of a professional to work through your emotions. Many will offer service through video feed during the virus outbreak. In the meantime, please sit down with your wife and let her know what you are going through emotionally. I truly pray your physical symptoms subside and YES you can habituate just like anyone else. Please be kind, compassionate, loving, patient and most importantly forgiving with yourself. Be Well.

 

[Orions Pain]

I also had "burning ear" soon after my T started, when my good ear will suddenly feel full and turn completely red and hot. My T ear will be completely normal. It was like clock work. If I didn't have it in the day, it would eventually re-appear in the evening almost always after shower. Sometimes it will fade to normal before bedtime and sometimes it will only recede somewhat. But the whole cycle repeats the next day. The only thing that I found helpful was taking a walk outside and let the cold air cool it down. This had gone on for more than a year until it became more and more infrequent.

It's not even my ear. It's my entire face that burns, like my forehead, cheeks, sometimes the area above my mouth. Like terrible numbness burning. I also get it on my legs, like on the front of my thighs.

The cold burning on my face actually seems to be triggered by cold wind, it's like my face processes cold wind as being 10x colder, it's piercing.

I have tinnitus in both ears, and this started 3 months in and seems to get progressively worse.

Worst part is I can't even have an MRI/scared to try any meds in fear of tinnitus getting worse.

 

[CT84]

Lying here now wishing it all to end. Can't survive this. It consumes and petrifies me. I'm existing, not living.
I'm 4 weeks in to this torture, no idea of the cause but a long list of possibilities. Can't see any doctors or specialists. Although I know they can't help me, but just for some reassurance. Torture, can't stop obsessing over the sound.

 

[Contrast]

my life's misison is already complete. I got to watch scammers burn, now I am just wasting time.

 

[snow47]

Life can be tricky. You may think you are in the worst situation. But I have experienced that worse always exists. For me tinnitus is the least of my worries now. But I remember how I was in the first year. Suicidal.

 

[Orions Pain]

Life can be tricky. You may think you are in the worst situation. But I have experienced that worse always exists. For me tinnitus is the least of my worries now. But I remember how I was in the first year. Suicidal.

This is very true. Mine has progressed from tinnitus, to hyperacusis, to TTTS or just weird spasms, to now visual issues and weird neuralgia/burning throughout my body. Who knows what's next.

 

[Agrajag364]

Lying here now wishing it all to end. Can't survive this. It consumes and petrifies me. I'm existing, not living.
I'm 4 weeks in to this torture, no idea of the cause but a long list of possibilities. Can't see any doctors or specialists. Although I know they can't help me, but just for some reassurance. Torture, can't stop obsessing over the sound.

If you're only four weeks in there is still a good chance it's going to get much quieter and even go away.

 

[CT84]

If you're only four weeks in there is still a good chance it's going to get much quieter and even go away.

I pray every second for that, but going on what I've read I'm of the opinion not. Feel so lonely, I have family telling me it's not that bad, just get used to it, snap out of it. I feel like can't even talk to them about it... wish I could find some strength. I've survived many things in life, been beaten by a partner to the point of near death yet still I'd choose to relive that again right now over this.

 

[Agrajag364]

I pray every second for that, but going on what I've read I'm of the opinion not. Feel so lonely, I have family telling me it's not that bad, just get used to it, snap out of it. I feel like can't even talk to them about it... wish I could find some strength. I've survived many things in life, been beaten by a partner to the point of near death yet still I'd choose to relive that again right now over this.

I did an absolutely massive amount of research into this when I first got it. There is absolutely no doubt that it gets quieter for lots of people and goes away for a proportion in the first year or two. Even on occasion after that though it's rarer.

 

[Jazzer]

It makes me angry knowing people are suffering why psychologists and psychiatrists run the show.

"It is a sobering thought that after zillions of years, squillions of words, untold funding, countless potions, tablets, gadgets, supplements, gizmos, and all the rest of it, nobody has ever proved capable of reducing the volume of tinnitus noise by as much as one solitary decibel.'

Therapists have managed to ease the suffering of countless people.
Research, so far, has not.

 

[Bartoli]

I agree, that's MPP's wager.

However the NIH would consider that negotiating with terrorist. As long as tweaking chemicals in the brain can alter behavior, they are going to go down that route.

I don't know. From what I can tell from my experience with the medical community, they are trying to help in the best way they can. With psychologists, that's using psychology.
The people I've come in contact with agreed that they can only do so much and that a cure would be better still. But let's face it, we haven't got one. And the hospital needs some sort of treatment now because they keep seeing people with tinnitus every day.

There's no secret conspiracy. In fact, they are very aware that what they're doing is just trying to relieve some of the comorbid symptoms that come with tinnitus. For a lot of sufferers that may actually be helpful. Especially for people new to this shit. They're bound to react strongly. I know I did when I first got tinnitus. What I would do now to have that level of tinnitus again. It would be as good as a cure.

We can't expect the psychiatrists or psychologists to stand up for our cause. We have to do it ourselves. They're seeing ten people a day. The majority of them do learn to deal with their tinnitus, so when the psych goes home, he or she may spare a thought for the case he saw today that couldn't be helped, but at the end of the day, they still guided a lot of people towards meaningful relief. Most people probably don't need any help and recover on their own.

I'm in no way stating that this should be enough. We do need a cure. Badly. Especially the severe sufferers. We can be cross that too much money went towards research on TRT back in the day but that's in the past. Most scientists are aware we need to direct the meagre funding towards a cure now.

All I'm trying to say is that we won't move forward by bashing the medical community whether it's audiologists or psychologists or ENT's or whatnot. Most of them agree more needs to be done. We're not going to get any compassion by being hostile. Raising awareness and getting our point across in an open and straightforward way will achieve much more.

Even the BTA and ATA are making a shift in BTA featured Steve's story this year. It was the best! That's a wholly different thing compared to William Shatner a decade ago talking about how the ATA was "a ray of light that burst into his life" and how TRT helped him tremendously and saved him from topping himself. (Which may actually be the case). I think the days of unbridled positivity and "we shall overcome" are done. We need realism and it's starting to happen.

 

[Jazzer]

I pray every second for that, but going on what I've read I'm of the opinion not. Feel so lonely, I have family telling me it's not that bad, just get used to it, snap out of it. I feel like can't even talk to them about it... wish I could find some strength. I've survived many things in life, been beaten by a partner to the point of near death yet still I'd choose to relive that again right now over this.

Have you tried meditation CT?

 

[CT84]

Have you tried meditation CT?

Yes I have, but I just can't get into it with the constant noise, it's so frustrating.

 

[Jazzer]

Yes I have, but I just can't get into it with the constant noise, it's so frustrating.

Dear CT
Please read my recent post recommending
Eckhart Tolle's book 'Stillness Speaks.'
Don't worry about the noise just now.
There is a place of stillness for all of us,
underneath the pain, underneath the noise.
I promise you.
As you settle down to meditate, with gentle 'tummy' breathing, lips closed, teeth always apart, just accept the moment exactly as it is, and stillness will come to you, with practice.
Take care
Dave x
Jazzer

 

[Jazzer]

For @CT84 ........x

 

[Luman]

Yes I have, but I just can't get into it with the constant noise, it's so frustrating.

You are not alone, even many of the most stalwart of us have been though it. It gets better for the overwhelming majority of people. It may take time to subside. Even if it remains to some extent, your attitude and perception of it will eventually treat it like an occasional minor annoyance, at worst. Tinnitus is one of the most prevalent chronic disorders there is, and literally hundreds of millions of people in the world have it. An ENT that I visited, who is a leading surgeon in NYC, and elsewhere, has tinnitus and regularly performs operations that are akin to brain surgery. It drove him nuts, when he first had it, just like it does many of us. There is no "skill" in adapting to this, it is a natural process, but there are ways of making the progression of habituation faster and easier. Thousands of Tinnitus Talk members have come and gone from posting here, because they got better, and your case will very likely not be any different. Good luck, and hang in there, because better days are coming.

 

[Contrast]

e can't expect the psychiatrists or psychologists to stand up for our cause.

They get to lobby for clinical grants straight outta pysch school.


A biomedicine/engineer student will need a extra decade of schooling and a decade of peer to peer research before his/her treatment can start a clinical trial which takes another decade. I don't want to live in a world where psychology thrives off the ignorance of the biological sciences and that is the world I live in.

 

[bobvann]

Have you tried meditation CT?

It did squat for me...

 

[Contrast]

There's no secret conspiracy.

I know the NIH makes it obvious they just want to take people off disability who need it.

 

[xyz]

"It is a sobering thought that after zillions of years, squillions of words, untold funding, countless potions, tablets, gadgets, supplements, gizmos, and all the rest of it, nobody has ever proved capable of reducing the volume of tinnitus noise by as much as one solitary decibel.'

Therapists have managed to ease the suffering of countless people.
Research, so far, has not.

Untold funding? From what I have read tinnitus biomedical research has a serious funding problem because tinnitus is not seen as a major health problem.

 

[Sevv]

Total rollercoaster today:

At lunchtime I was in the phase of saying goodbye to things I like. Another step into that direction you do not really want to go.

After that, I got a bit "better" and I was resentful at my fate. I did everything to not make it worse, and god was like joker "oh that's a nice plan, see what I will do with that!". And it did get worse, so much worse. Actually this was part of the acceptance steps, the "anger phase"... so after venting in my head I actually got a bit better. Even if I wanted to blow my brains out just out of spite. No, I do not like the cards I got, here, have them back.

I'm getting now somewhat of a glimpse what habituation with this will be like.

I hope god doesn't have another plan for me. Otherwise I would not have gotten T, not had a setback after my first month, not gotten VS, not having that setback two months ago. And not having this complicated life full of emotional and social difficulties. Just a normal life with friends, a girlfriend and family. But well... maybe I can use all this experience and wisdom for something useful (I wonder, my goal is still having family...) May god finally have just a shred of mercy upon me.

 

[Contrast]

Untold funding? From what I have read tinnitus biomedical research has a serious funding problem because tinnitus is not seen as a major health problem.

Fibromyalgia, IBS and neuropathy have the same problem.

Quit pretending tinnitus is special.

 

[Tanni]

This is very true. Mine has progressed from tinnitus, to hyperacusis, to TTTS or just weird spasms, to now visual issues and weird neuralgia/burning throughout my body. Who knows what's next.

Hi @Orions Pain,

I've seen some of your posts and I just wanted to say that I'm really sorry for what you're going through.

I suffer/suffered from some of the symptoms you experience. I had Hyperacusis so bad that I couldn't attend any meetings at work because listening to people's voices was so painful it burned, and my colleague had to take over my paperwork because I couldn't handle the sound of turning paper. Someone once began eating crisps over 6 feet away from my desk and I had to walk away because the sound was agony.

I went to TRT and was given WNG's to desensitise my ears, but I had to take them off after 5 minutes because even that small sound in my ear was unbearable.

I remembered that before I had Hyperacusis I had seen a lot of success stories on this forum that implied that it would diminish in time, so I resolved to stay away from the forum to avoid potential negative stories, and keep these success stories in my mind instead.

I also remembered that people had advised not to overprotect, so I resolved never to do so for 'normal' sounds, even though it hurt. When people came to speak to me, their voices burned but I tried hard not to flinch. Same when people would pick up car keys or clink cutlery. Even though my TV hurt my ears at a normal volume, I did not turn it down. Of course, I did protect with earplugs around 'loud' sounds, as normal, but not for everyday sounds.

I'm not sure if that is good advice or not, but all I know is that very slowly the sound sensitivity went away completely and has not been an issue since.

I also developed shooting, burning nerve pain in my hands, arms, legs, feet and mouth (maybe similar to your burning pain?). I was even sent to a neurologist. The doctors now believe it was psychosomatic - brought on by stress. I don't know whether that is true or not, but the pain eventually went away and has not come back so far. (I was also put on a low dose of Amitriptyline, which seemed to help.)

I don't know if any of this helps at all, but I just wanted you to know that it is possible for symptoms to resolve. I am an incredibly anxious, fearful person who always thinks the worst, but I tried my hardest to carry on as normal despite the crippling anxiety, and I think this helped. I hope that your symptoms will abate/resolve soon.