The Negativity Thread

That's a bit of backpedaling, isn't it? That is, "accepting a disability" is a bit different than "Accept a mangled life, deprived of peace until you die, living in a limbo, drained of hope.", isn't it? If anything, the latter viewpoint seems to me to have very, very little to do with the concept of acceptance.

I'm not doing totally fantastic, else I probably wouldn't think about or post here -- but I'm moving forward with life, and after years and lots of work find that I am often able to go out and interact with the world and be largely unaware of my problems for chunks of time. That's a far cry from being a perfect happy little rabbit, but, I was chronically unhappy for a long time before I had tinnitus, so some of that is just the karma I'm working through (speaking metaphorically, not theologically).

I'm inclined to agree with you, but also think it's quite ridiculous to try to "prove" such a thing; that is, if there is some ephemeral higher order to things, it's quite impossible to access it through lab experiments. Which doesn't mean that we shouldn't try... only that such work is often misleading or ultimately unsatisfying (Strassman's DMT experiments come to mind).

I think I am being insufficiently negative for this thread, so I will move along...

 

It is better not deceive ourselves , the negativity serves something, althought you do not believe it, because then the pharmaceutical care more about this problem to research and find a medicine, that has been neglected because of false cures as acceptance and habituation .

 

I respect people's freedom of choice how to live their life or how they choose to view their life and its challenges. It is a choice we have to make.

The choice of positivity or negativity is before us. The ringing will be there choice A or B. But if A will give you a much better quality of life, and even perhaps a high % of overcoming T, why not A then?

In my journey with T & H, I had 2 heroines and their stories I particularly like. They are role models in my struggle to overcome the T challenge. One was a pretty young lady Zoe. She made a tinnitus film which you can view in youtube. A few years back when I was new with T, she came to Yuku forum to inform the members there about the film. In the process, she disclosed that she became deaf at a young age of 15. Her T was unmaskable due to the deafness. She said at first it made *#(*^%@ of a life for her. She said she had to make a decision. A, accept the ringing and try to enjoy life regardless of T, or B, live the rest of her young life in misery. She said her choice of A is obvious. Who wants to spend the rest of life in misery? It is reality set in for her and she chose A wisely. She said her T is really *@#%^&* and unmaskable. But what else can she do except to move on with life and try to make peace with T. Wise choice. She did just that. She even went on to university where she made her tinnitus film. Her story inspires me to make the right choice fast. Acceptance! Acceptance! and Acceptance! What else have I got to lose?

I also read the story of a young lady jazz singer Melody Gardot. Besides severe T & H, at the young age of 19 she was hit by a SUV while biking which did massive damage to her body. She was in hospital for a long time struggling with incredible pain. Even to this day, she is limping on a cane. She also has to wear sunglasses everywhere due to ultra sensitivity to light. You would think she would quit on life with not just T & H but so much more challenges. Not so. She chooses positivity over negativity. She never quits in the face of adversities, and moves on with a booming singing career doing shows all over the world. She is an inspiration to me as someone who embraces positivity and excels regardless of the challenge she faces.

So given choice A & B, positivity and negativity, why not make the right choice fast. Why prolong the agony? Eckhart Tolle, the author of the Power of Now, talking about the role of the crooked ego and twisted mind, reveals a point which really dawns on me what went wrong with me and my problem with anxiety/panic disorder. He said & I paraphrase that the ego & the twisted mind of ours often tend to mislead us that by negativity, by reacting emotionally, we can somehow solve the problems we face. Isn't that true for the most of us. Perhaps this is coming from the days we were babies and toddlers. By crying and acting emotionally & negatively, we somehow learned that help will come and problem will be solved for us (by our parents, grandparents). This primordial instinct may linger on even when we are adult. So when crisis as bad as T hit us, and when the doctors can't help us, the negativity, the crying, the negative emotions are in full display.

Yet we know such negativity will be futile against a formidable & non-passionate object as T. It doesn't care how bad shape you are in. In fact, the more negative, the more louder and intrusive it seems. So what choice do we have? I guess reality needs to set in at some point. Change course, from negativity to positivity. It can only help you and doesn't cost you anything. Why not? It makes perfect sense and you have nothing to lose, and perhaps lots to gain. Don't believe that? Here is the story of my first mentor in my T journey, Paul Tobey who is a concert pianist before his severe T hit him hard, causing him to drop out from his piano concert career and to be lost in the next few years of futile effort to fight T with negative and passive approaches. This lasted 4 years until his wife gave him the ultimatum to stop catering to T and live his life positively. He has since found that by engaging himself in the effort to perform at Carnegie Hall, the mecca of concert pianist and their ultimate dream performing it solo there, that he has found a surprising relief from the T tyranny. The all out effort to prepare for such an important event and the total dedication of his mind to it has caused his brain to ignore T at times. When he discovered the miraculous effect, he was even more engaged on his activity and slowly the intensity of his T faded and he has then found the proactive way to cope with T and eventually beating its tyranny on him. This is just a brief introduction of his tinnitus struggle and his eventual triumph over the T tyranny. He calls it 'My Choice' and it is still featured on the ATA site:

http://www.ata.org/sites/default/files/my_choice_concert_pianist_personal_story_tobey_june_06.pdf

Fight back with positivity in your life until you bury that T bully. I know it is doable. I am living it. I never thought good life can be back again after T. But I am a believer now and Paul Tobey plus millions have found freedom after T. May the force of positivity be with you. But I do respect every one is free to choose how he/she wants to view challenges in life. To each their own. Cheers.

 

if you want to believe that making yourself as miserable as possible will fast-track drug development, by all means, please believe that. Belief is a funny thing; 43% of Americans for instance believe that Donald Drumpf is qualified to be president of the country.

How much time have you spent actually talking to professionals involved in tinnitus treatment R&D? I've spoken to many of them; it may surprise you to know that not a single one of them thinks acceptance/habituation is an acceptable or optimal long term treatment. People do not suggest habituation in order to avoid R&D; people suggest habituation strategies because so far, R&D hasn't come up with anything better. Give it time. Brighter minds than you or I are working on this problem every day of every week of the year.

 

It is simple, if it be positive or negative were a rational choice , would not exist antidepressants.

Because no one would be so stupid to choose to be sad. As I believe had said vaba:
nobody chooses be depressed , this is caused by tinnitus.

 

Mangle - V. (used with object) to injure severely, disfigure, or mutilate
Disable - V. (used with object) to make unable or unfit; weaken or destroy the capability of;incapacitate

Big deal. I chose a similar word that was more dramatic and expressed my agony in a more poetic manner. It got your attention, didn't it?

Tinnitus deprives you of peace for sure. You lose the ability to hear nothing, may develop chronic pain, often lose a lot of cognitive function (I definitely have) and the situation is typically hopeless. Many of us live in a limbo of sorts. Really, life itself is a limbo - you remain here from birth until death, unsure both of when you are going to be born and when you are going to depart.

And, I will say it for the THOUSANDTH TIME, acceptance will never happen for me. I had a happy early life (til age 12) but a dreadfully unfair adolescence. Therapists originally tried to help me "cope" with bullying. I succeeded, because bullying isn't a permanent thing. It's a temporary problem. I made friends and was happy.

When I turned 15, they tried to help me "cope" with vitreous degeneration, and now they're trying to get me to "cope" with tinnitus and being disabled. The important thing is that I WAS HAPPY until I developed chronic illnesses. I had everything I needed to be happy. I know what the only thing is that will MAKE me happy - and that is not being physically sick anymore.

I remembered thinking on my 15th birthday (I had JUST developed giant eye floaters that ENDED my favorite hobby: reading) that I wasn't going to make it very far into adulthood. I stopped saving money for a car. I stopped caring. I never left the house because the sun blinded me with a spray of floaters.

The doctors told me that my "brain would filter them out" or it would "fade over time" or "sink out of my field of vision." It didn't. It grew in size and opacity roughly 15x and now obstructs my entire central field of view. I also developed hundreds of smaller, clear floaters.

One night that same year, I noticed a tonal buzz when it was dead silent in my room. I went to the doctors. They told me such things as "at your age it isn't permanent" "your brain will filter it out" "it will fade over time" "your hearing is fine." Just like the gradual loss of eyesight to large blurry patches, the tinnitus has gradually gotten worse.

The bottom line is that I WAS positive and coping well, but my diseases keep getting progressively worse. Now, I can no longer cope with them. I won't live a life in pain, especially because I have so many years ahead of me to suffer.

DMT is a drug that changes the electrical firing patterns and neurochemical levels in your brain. Drugs have nothing to do with being dead. The only way to know what being dead is like would be to somehow stop all electrical activity in your brain, rendering you completely unthinking, and then resume all electrical activity in your brain, which we can't do. Brain damage, just like CNS damage, is permanent. Many people who have come close to death through oxygen deprivation from cardiac arrest report that it was just like being asleep - they felt and experienced nothing.

 

I wondered , if we do not suffer in this life what we have to suffer, probably we will suffer in the next life , this explains why born people with tinnitus .

 

Self-fulfilling prophecies, eh? Useful.

The brain is pretty good at working around certain kinds of damage; otherwise people who lose their speech from a stroke would never be able to speak again. Sometimes they can't, granted; sometimes other parts of the brain start to work differently, and they start talking again.

If your floaters are so bad that they prevent you from reading for pleasure, how are you able to read my posts? Conversely, if you're able to read my posts, why can't you put that energy into reading for pleasure?

 

I know myself better than anyone. I don't like to sit down and let life rape me in the ass. That's what acceptance is. The agony NEVER STOPS, but you make a conscious choice to not stop it by killing yourself. With tinnitus, you have to accept a pounding that will NEVER STOP. To me, tinnitus is a rape of the mind.

Firstly, the brain can "work around" certain kinds of damage, but never work THROUGH it. The damaged part of the brain will remain dead or damaged permanently, and the only hope of recovery is in the form of neuroplastic changes, where other parts of the brain try to fill in the gap. They almost never do as good a job as the original part of the brain that was lost. Stroke victims never recover full brain function - the percentage of their brain that died stays dead. It never comes back. Look up videos of people speaking at the start of speech therapy after a stroke. They speak slowly and in a muddled tone that shows clear damage. Typically, people who suffer brain damage need great amounts of both speech therapy and luck to be able to communicate anywhere near their previous levels.

Also, stop twisting my words.

I NEVER said that the floaters made me incapable of reading at all. It's also pretty narcissistic of you to assume that I'm reading your post for pleasure.

You think I read posts on tinnitustalk for fun? The only reason I even signed up for this site was to find a way to stop being in pain. Additionally, I have NO ENERGY. I spend the majority of my day in bed or searching for a doctor to help me fix my broken body. I am barely capable of moving; because I've been a shut-in videogame addict since the age of 15 in a vain attempt to escape my hopeless, painful reality, my joints are already degenerating. My lumbar spine is unable to bend, and all my joints crack and hurt. The only way to fix this would be to go outside and exercise - but being outside is HORRIBLE due to the floaters and tinnitus.

I said that floaters "ended my hobby" of reading for pleasure. I only read out of necessity, because I am CONSTANTLY distracted by the large, gelatinous, swaying, opaque masses in my vision and the screeching and fullness in my ears. I always required an environment free of distractions to read a book. A pin dropping would bother me. I can no longer use books as an escape from reality, because reality has ruined the senses I need to escape it.

 

What you said was "I remembered thinking on my 15th birthday (I had JUST developed giant eye floaters that ENDED my favorite hobby: reading)" and my serious, non-trolling question is still, if you're able to read the internet, why can't you read a book?

It's never going to be the same as it was before you developed visual problems, but I'm hard pressed to find many people in their 40s or beyond who haven't had to adjust to some horrible physical degeneration or another. It sucks a lot more the younger you are when it happens, but continual decline is the nature of life, and in some ways it's probably an asset to figure that out sooner because later on it's just going to be worse.

All I am trying to suggest is that while you do not apparently have much choice in your disabilities, you do still have a lot more volition than you're giving yourself credit for in how you react to them. From this side of the monitor it's pretty clear that you're lucid, literate and capable of comprehending and expressing complex abstract thought. So, it's a little hard for me to determine a physiological reason that you're not able to read books.

 

I CAN'T ENJOY READING A BOOK. I CAN'T IMMERSE MYSELF IN IT, MAKING THE EXPERIENCE WORTHLESS. AM PHYSICALLY CAPABLE OF READING, BUT THE EXPERIENCE IS PAINFUL. I HAVE TO IGNORE SCREECHING IN MY EARS, AND I HAVE TO FLICK MY EYES ALL THE TIME TO GET THE MASSES OF FLOATERS OUT OF THE WAY. It makes the experience PAINFUL AND MISERABLE.

"In their 40s and beyond." I talked to my ophthalmologist and he said that people with my degree of visual handicap are typically OLDER THAN SIXTY.

What's so FUCKING hard for you to understand about that? 15 is TOO YOUNG to have both hearing and vision problems, that just SHOWED UP OUT OF THE BLUE with no underlying disease. And you're right, both of them HAVE already gotten worse over time. I now have over 50 floaters total in both of my eyes. If it's only going to get worse, and I cannot deal with it right now, the logical choice to prevent myself from experiencing further agony would be to just off myself. (Can't wait for you to tell me to go "get mental health help" right here. Fuck off in advance) I need to be cured, or I will be dead. I would RATHER BE DEAD than me in this much pain.

I'm too intelligent to suffer from sensory problems and live a good life. NEED MY SENSES TO BE IN PERFECT WORKING ORDER TO REALIZE MY DREAMS. If had aspirations to be a dumbfuck construction worker or a mail carrier, I wouldn't NEED silence or perfect vision. If I want to do maths, I need BOTH.

 

You seem very angry, @Vaba, and I don't think it's actually got much to do with me.

I know all about the misery of trying to read through swirling kaleidoscope vision at 3 AM with a 15 khz banshee howl in both ears. My only advice is to do it anyway, because over a long period of time you might be pretty surprised what happens. As with all things you've got a choice, so you can either decide I'm full of shit and that there's no way you'll ever feel better, or you can decide to keep trying different things until you find a way to live your life with a little more comfort and a little less stress.

One thing you might find slightly interesting, or not -- when you posted a video a couple weeks ago of your vision, with black pulsing blotches all over everything, I initially replied that my own problems don't include those blotches. That's not correct, actually I see them all the time over all surfaces and in all light levels, it had just been so long since I'd thought about them consciously that I'd sort of managed to filter them out at a conscious level. I have been significantly more aware of them since watching that video, though not distressed about them because the nature of my vision for a decade and a half now has been "constant chaos and noise", and if I let it bother me then I'm just bothered by it all the time, so somehow I don't and probably think about it ~90 seconds out of the day. I wish I could explain the process by which that happened, but I can't, I just know it took a long time and then sort of happened suddenly.

Good luck and warmest regards; this shit sucks and I wish none of us had to deal with it, but here we are. By all means, continue to lash out at me if that serves a useful purpose for you, but maybe reflect on why anything I've said is hitting your buttons so hard. I don't have a product to sell or a website to advertise or a workshop to sell tickets to, and I certainly don't pretend to have all the answers for myself, let alone anyone else. My only hope is that maybe some little shred of what I have to say to you resonates, or is helpful, or makes you feel calmer or more reflective; if none of that is the case then perhaps we're both wasting our time with this dialog.

 

I'm glad you've been able to brainwash yourself into accepting your shitty quality of life as "normal" for you. I'm young enough to still remember what being healthy is like. You've been suffering for so long that you've gone numb from the pain.

Keep in mind how much older than me you are. You don't have to be tortured for as long as I will have to be.

Also, it's already been 6 years. I've lost over a quarter of my life to suffering like this. I'm 21 and already 100% disabled with no hope of recovery from my illnesses.

 

No one makes it to their 40s or 50s with the "normal" they had in their early teens. No one. Of course I am jealous on some level of people my age or older who have a smaller set of problems than I do, but no one gets a free ride. My brother, whom I think of as sort of the golden child who on the balance appears to have had a much easier go of things than either my sister or I, cannot raise his arms over neck level without severe, severe pain. He does not think of himself as disabled, only that his shoulders are kind of a bummer.

I'm in my mid 30s and I have been dealing with this since I was around the same age as you were when you had your onset, so on the balance we're more or less in the same boat. Having spent a lot of time suffering too badly to work, talk or even think... I'll take being "brainwashed" over being basically in hell, every time, every day.

That's really all I've got for today; need to get ready to go pick my wife up and find someplace quiet to have dinner. I remain optimistic that at some point something will click for you and you'll find a way to move forward with your life as it is, and not as it could have/should have/would have been. As for other hopes and dreams, I also remain optimistic that there may be better treatments for some of this stuff before I'm too old to care... but I guess I hit a point where my life had been on hold for long enough, and just had to find a way to fucking move forward, hell or high water. I want to have kids and own land in a quiet and pretty place, basic American Dream For The Naive 101 stuff, and I'm determined to find a way to line all that stuff up.

The dice could have fallen differently, and you could have ended up dealing with terminal cancer instead of a lifetime of tinnitus/visual issues, and I'm sure that sounds attractive to a big part of yourself. However, having watched someone die of cancer at a pretty young age, I know that she would have given anything to have more time to explore and experience the world, even if that time was stained with visual static and constant high-pitched shrieking. I'm not saying that's the right choice for you, or that you should feel that way, only that this was a thing I witnessed which was expressed to me.

 

Agree completely with the OP. Tinnitus is an insane, pointless torture with no upside. I had it for 4 years and let me tell you, the only positive outcome is the T GOING AWAY. As in the noise physically stopping. Not 'habituation' where you pretend it isn't a problem and call yourself cured. Can you imagine someone suggesting habituation for a broken leg? For a mental disorder? How pathetic.

I do have something positive to offer the OP, something positive that is actually *true* even. T can and does go away. I had it for 4 years. It is gone. Not "I'm not listening to it", I listen for it and it's not there. That's reason enough not to die, particularly with you being so young - young people have a much increased chance of recovery from all kinds of things.

The other advantage of your being young is there is more time for medicine to advance and a cure to be found for T. Of course the first step in finding a solution is admitting that we don't already have one.

 

There it is; the "someone else has it worse" card. This discussion we have had is simply a more eloquent version of a discussion I have had hundreds of times with other support group members, counselors, psychiatrists, and family members. You sound like an older, purely subjective version of me who abandoned rationality in favor of appealing to his own emotion. It's amazing what the human brain will do to protect itself from the harshness of reality.

Look man, I'm sorry. I chose you as a target for my venting because you're like a mirror image of me - you defend everything I hate. I'm not trying to demean you as a person or anything - I think in any other context other than approaches to dealing with tinnitus, we might get along - and I'm glad you're having success. It's just that I get so frustrated hearing the same things over and over again. I hope you enjoy dinner with your wife.

Do you have any hearing loss?

 

No permanent hearing loss, although I did get temporary hearing loss in my left ear (lasted 3 days)

 

No hearing loss as in 0dB on audiogram? Or no hearing loss as in "normal hearing?" (<25dB hearing loss)

 

No permanent or maybe hidden hearing loss? I have perfect hearing in the normal range, not "good" but perfect in the sense that I hear much better than the average. At least that is what my ENT told, I have uploaded my audiogram on another thread that was asking for it.
However, that doesn't mean I don't have hearing loss, just that it is most likely in a frequency that is much higher. Since I have T, there must be a dead frequency in my ear somewhere. So my audiogram can be perfect, it doesn't mean that T doesn't exist. I sort of wished that I had detectable hearing loss, at least you'd get more help. But now they just waved me off since it was better than average.. :/

 

I'm not sure what you're asking. At one point in my T adventure I had *significant* hearing loss, such that I noticed it immediately, and while I don't know if it was on every frequency it was certainly a huge chunk.

 

That wasn't really my point -- I have no idea who has it worse because I don't know you, and comparing two shitty things often just leads me to conclude that bad things are bad. I was more pointing towards the idea that you have agency and choices you can make, and it would be a shame to blow that up.

I think that the absolute prioritization of rationality over happiness often leads to having neither; rationality isn't some cosmic absolute, it's just a collective dream people have about rules and logic, and I don't think the universe really works that way. That is, on a purely mechanical level, yes, if A ~> B ~> C, then A ~> C. Trying to walk that idea through the uncanny valley and map it onto the emotional reality that we all live with, doesn't make sense to me. I think that in general people make decisions for emotional reasons, and logic is then used to justify them so that we can pretend we're all rational actors. I don't think that anyone I've ever met is an exception to this rule, it's just a spectrum where some people are more or less fact/evidence based in their decisions than others.

You've got nothing to apologize for; I'm thick skinned and I was being sincere when I said that you're welcome to throw whatever words you want at me if it's helpful. I've been there.

Thanks, it was nice -- we ended up just dining in at the whole foods foodcourt because it seemed like it would be cheap and fast; it was one of those things but still somehow ended up being almost fifty dollars which seems sort of loony to me, but the area I live in is kind of ludicrously expensive and I can't wait to leave...

 

The holy Bible says that the ruler of this world is the devil , therefore this is hell. Luke, 4,5-7
And since I have tinnitus I'm sure it is.

It's true and verified with this disease of tinnitus.

 

I've read that bible verse and it's just Jesus being tested by the devil.
It doesn't explicitly say that the ruler of this world is the devil (I've googled it twice).
But having tinnitus sure doesn't feel like much of God being around.

 

OK dude, keep your panties on, Luke 4:5-7, right on.

 

Luke 4,5-7:
5 The devil led him up to a high place and showed him in an instant all the kingdoms of the world. 6 And he said to him, “I will give you all their authority and splendor; it has been given to me, and I can give it to anyone I want to. 7 If you worship me, it will all be yours.”

 

This thread really makes me want to revisit my old black metal albums...

 

Is not a joke , it is a reality we are experiencing in the flesh , something like a trial of medicament but not in this case for to prove am101, but Luke 4.5-7.

 

I agree with much of what you've said. However, I don't agree with your two options.

Habituation is a possible outcome.

I have had T since birth and have NEVER known silence and I assume I never will. However, I can go days without noticing my T even though it's absolutely there 24/7. I feel for those that develop T suddenly after a life with no T.

T is very tough to live with because I was told that having T continuously triggers the "fight or flight" area of a person's brain. A person with T, on some level is therefore ALWAYS on "high alert" and conversely it could be argued can therefore never fully relax. My brain has therefore been on high alert all of my life. That is draining. However, I make it a point to do things that relax me as much as possible (solitary "down time", etc.).

It sounds like a cliché but life is what you make of it or what you do with it. I feel for those that have more debilitating afflictions. I believe my T is far easier to deal with than, say, paralysis, colostomy, etc.

 

I think that tinnitus is unbearable and is the worst of all diseases. I like that you have participated , because I guess you're a token of my theory , maybe you had tinnitus in a past life, and you do not resist the disease , you end up with your life and you were born with it again because we can not avoid suffering touches to each one of us.


No offense is only a theory.

 

First off, habituation is just a fancy word for accepting tinnitus. You will be in pain until you die. The tinnitus will not magically stop when you habituate - nor will it decrease in volume even one percent. The only thing that changes in the best-case scenario is that you sometimes don't notice it.

It is not physically possible for my personality type to submit to the mental torture tinnitus brings. My father has Chron's Disease which causes unstoppable bleeding from the rectum and month-long periods of total agony when it spikes. BUT IT STOPS. It remits for him, and he can go years without a spike in bleeding and inflammation.

I, as a victim of tinnitus, can't go one millisecond of the day when I don't suffer from the constant, unrelenting agony of my symptoms. The left side of my face isn't numb and my ears never stop screeching. The problem with tinnitus is that it only gets worse and cannot be treated - and will never be cured, at least, not within my lifetime. I would trade this disease for paralysis or cancer, because then I could more easily invoke my right-to-die.

From early childhood to the present day, LONG before my disease arose, I LOATHED any kind of distraction. When my loud Italian family would yell, I would jump. When they talked, I would whisper. When I was in a room with loud background noise - or in a car, listening to the hum of the road - I would plug my ears up with headphones and listen to music. I never went to a concert or an airshow, I never fired a gun. I never exposed myself to any situation that destroys human hearing.

I am not physiologically capable of ever adjusting to tinnitus.