Does Anyone in the Medical Field Try to Help without a Paycheck as Their Motive?

Oh look, another angry rant by me. Maybe you all are annoyed by them and want me to stop being so negative. Well, when the attitude of tinnitus sufferers and the medical/scientific community changes, then I too will change in affect.

Right now, there is a culture of acceptance going around. This idea that "we can't do anything so come to terms with it and live a good life with it there and no effort to try and rectify the problem". I'm honestly at the point where I would rather live in sheer misery everyday (I already do over different issues) than "accept" or "surrender" to this goddamn ringing. The brain is not doing you any favors by generating the noise. One paper I read suggested it is the brain trying to stop the loss of grey matter in the auditory cortex to apoptosis (cell death). Since these neurons are useless in the event of hearing loss, they should be allowed to die, your auditory cortex less functional, and your hearing ability forever impaired.

If anything, this shows how your brain is ruining your life to save one small cluster of cells at the expense of shrinking other, more critical areas of thinking. And no doctors care. PCPs/GPs do not care, nor do ENTs, audiologists, psychiatrists, therapists, neurologists, dentists, etc. These are all people who seek nothing more than to profit off your pain. Don't believe me? Then why is an intake session (which means they establish to basics of your tinnitus but can't gaurentee spotting cause and no purposed treatment) $300-500? Why are doctors so quick to prescribe a $3000 pair of hearing aids that will come out of pocket and barely improve quality of life?

I'm honestly getting to the point of taking raw electrically charged wires, not electrodes, and applying them to the area of my skull associated with the auditory cortex. Maybe the zapping will destroy neurons the brain needs and hopefully cannot repair or replace so the noise is lose forever. I go off high alert, my defenses go down, and in the event of an attack I am less prepared and more likely to die. Does this sound insane? Maybe, but so is that idea that brain areas related to judgment, emotional processing, tonotopical processing, and memory are compromised for one goddamn sound.

I may have the cure for cancer buried in my brain, but I would rather die prematurely and deprive thousands of people of that cure. I personally would like to induce tinnitus in various doctors and researchers, then when they complain tell them to get over themselves, throw a bottle of SSRIs at them, or a $3000 pair of hearing aids that will improve life quality by 5-10%.

Tinnitus destroys the brain, research has shown this. And NO, it does NOT show what MAY happen in tinnitus patients, is shows what IS happening in tinnitus patients. There may be variability in hyperactive parts of the brain, but until we are willing to take a pillow and smother those hyperactive areas until they either cool down and choose to give up any compensatory functions or simply die because they aren't being used. I don't care anymore.

 

My doctor actually took extra time in looking into my problem .
I had been in hospital a week and lots of tests.
CT scan,angiography,mri with out contrast and one with and a lumbar puncture and still my tinnitus and head tinnitus kept me from walking properly and head pain also.
My doctor said he was taking me off sleeping tablets and told me to trust him as he thought I would gain relief been put on Nortriptyline.

I will never be able to thank him for Everything he did as he left for pastures new...
Dont give up ......
Love glynis

 

Why shouldn't I give up? No one is medical science cares about our suffering. Those that do are just looking to line their own pockets by selling snake oil. Treating anxiety and depression does nothing to combat tinnitus. I would rather remain depressed and unable to function if it meant forcing scientists to look for a cure and not another worthless coping mechanism. I now know to not be honest with anyone about how I feel, because I refuse to be locked in a psych ward and forced to take antidepressants that worsen symptoms and group therapy which does nothing to help.

Stop being so optimistic. That attitude, the idea that we can habituate and learn to live with tinnitus, is holding us back. Why pay to develop a cure for something people learnt o cope with. Stop coping. Break down and become dysfunctional, then maybe we can get some real scientific attention. All researchers in this field are worthless, and if you do not have tinnitus yourself, you should not be allowed to treat or research the condition.

 

Are you serious that it will destroy my brain? In what way?

 

It won't "destroy" your brain, but imaging studies have shown that people with tinnitus have hyperactivity in certain areas of the brain (such as the inferior colliculus, nucleus accumbens, parahippocampal regions, etc). Many studies show that people with tinnitus also lose grey matter (that is to say, neurons) in many areas of the brain. Most tinnitus patients lose grey matter in the right inferior colliculus and left hippocampus. Areas of the limbic system, such as the ventral-medial prefrontal cortex show a dramatic reduction in grey matter. Areas like the thalamic reticular nucleus don't function properly as a result. Neurons in the auditory cortex will rearrange themselves by having the missing frequency pull away.

So no, you're brain doesn't "explode", but it does alter in overwhelmingly negative ways. As a result, I recommend taking any kind of drug that inhibits neuroplasticity so the brain cannot make such changes for future hearing loss. Making the frequency lost forever instead of the brain being able to "regain" it.

 

I get your point, @Gl0w0ut , but even if many habituate and get used to it, I have no doubt that there's a shitload of money to be made from curing or at least making T lower with some sort of cure. The amount of sufferers are more and more and people use headphones more than ever. The money will be there for the medical company that manages to somehow fix this.

Most of us want to survive and get on with our lives, and if that means adjusting or habituating, that's what we'll do, if we can. We can't stay suffering just because that'll make more money available for research. Even then a fix might be further away in time than we have left to live.

 

I don't think tinnitus is the same thing as phantom limb pain. It's caused by the brain acting as an internal hearing aid
listening in closer to damaged frequencies and in the process it causes hyper activity neuronal activity in the audiotory part of the brain which spreads elsewhere.

Roland Schaette talks about tinnitus research...

If the brain can faulty wire itself, repairing the hair cell/nerve fiber/synapse should undo the faulty wiring and hopefully at least have some effect on the tinnitus if not curing it completely. You are extremely pessimistic when I am just trying to look at things unbiased.

 

Well I'm not willing to wait another 40 years to find out. One paper I'm reading right now talks about the inconsistencies of various neuroanatomical changes in tinnitus patients. Experts can't completely agree on cause and pathology. Honestly, science doesn't appear to be any closer than they were 10 years ago. Maybe now even more confused because of conflicting theories of tinnitus onset, brain changes, and

Well good luck doing any of that in a cheap, non-invasive manor.

It would be easier to simply kill or greatly suppress the brain's new circuits so it loses its ability to keep the new sound while we also damage its plastic abilities so it cannot bypass this suppression with new connections.

 

I know... And it is frustrating.

 

And no one cares. So don't habituated. If you're depressed or anxious, allow this conditions to persist and ruin your life. No one will take us seriously if we can cope.

 

I agree. Some of us are fortunate to have significant others to lean on for support or the reason to keep living. Some of us have financial means to seek medical help of some sort.

However too many haven't either of the above.

I understand. But the "blame" is always placed on "other" issues a person deals with and tinnitus is always disqualified as a "reason". Always. That isn't going to change.

So if you fight, fight hard and don't give up. Statistics are forgotten.

 

YOU are holding yourself back! Don't tell others to not cope and to not live their lives....

 

Here is an example for you. An ENT with tinnitus, that I had a visit with last year, did not bill me for anything other than the required co-payment, and since I did not meet my deductible his normal fee for his time would have cost me hundreds of dollars. I didn't cry poverty or ask for charity, I simply never got a bill for the visit. He also advised me to skip an MRI unless I really wanted one, and said that he'd tried many of the various OTC remedies and none of them worked.

Unfortunately, there aren't enough people in these fields with tinnitus, to treat everybody and do all the research. The idea that you propose is absurd. Should Jonas Salk and his team have been required to suffer with polio before being allowed to work on discovering the vaccination?

You're a very intelligent guy, but I just don't understand your reasoning on some of these issues.

 

This is bad. Tinnitus is bad. I wish i had 20 more years of T/H free life and no health issues and then i woudnt mind dying in a car crash or some other disease.

 

I don't control the noise.

 

What can we really do, though? It's not like I have illusions that living a happy life with this thing is possible, but we all still have to get up in the morning and go to work.

 

@Gl0w0ut If People who had this for 10,20 even 40 years managed to graduate, have families, do Jobs and have children, so Can you....There are a lot of research studies but IT does not mean they dictate our lives... People with tinnitus who continue living their lives are a LIVING proof that this can be manageable... I am definitely not planning on losing my mind And ending im psychiatry BC research studies told me my brain is becoming worse... Brain Can be a very powerful thing especially when IT is filled with optimism. Stress, overthinking and pessimism have a negative impact on the brain... Also, I disagree that doctors don't wanna help but only make profit... I am sorry but People Just don't yet understand what this is... Unfortunately, IT Will take more time to figure this out... Until then , if you wanna spend your life as a lunatic ,be my guest but you Will end up alone...

 

...but many (most) peoples do learn to control it (even eliminate it from their consciousness). These are the things which helped me move on...

I found ways to reduce stress in life and made those changes. Stress leads to anxiety which makes the T worse.

Didn’t allow my anxiety/emotional levels to latch onto the T, as fight or flight mode increases hearing sensitivity and the volume of the T causing a negative feedback loop. (The logical part of the brain can ‘teach’ the prehistoric emotional part that T isn’t a threat).

Recognised that I was on the ‘obsessive’ spectrum and accepted that this was probably the main reason I obsessed about the T and was finding it difficult to let go of it.

Focused and got engaged in positive things rather than obsess about the T. I did this as soon as thoughts turned to the T. As soon as I woke up in fact.

Built confidence in the periods where I realised I hadn’t noticed the T (the brain starts to filter it out). These ‘silent’ periods got longer and longer.

Didn’t listen to, or search for my T when I realised I hadn’t noticed it.

Eventually when I was ready, I removed everything in my life which reminded me of tinnitus. Sound props, conversation about T and T forums! (certainly reading some of the stuff here won’t help newbies).

So lots of ways we can control T. There are probably more which I have forgotten It does take time, will power and inner strength though.

I certainly no longer ‘have to accept’ my T. I literally don’t hear it unless someone mentions it. Even then it quickly disappears as soon as I stop focussing on it. I think it is more than habituation too, as that kind of means learn to ‘put up with’. Also I have discovered so many people who have reached this stage who didn’t receive any external help.

It’s a choice really. Until the magic pill arrives, these are things people can do now. Most do end up leading normal happy lives and don’t notice their T unless asked about it.

In the mean time, let’s not take hope away from newbies by being too negative eh?

 

You don't even hear your tinnitus in a quiet room?

 

@Gl0w0ut ,
I know what your saying and that if we manage to cope or habituate then why push for a cure.
Just know we do care about you on here...lol.
Even though my head tinnitus has gone I suffer greatly with my ears and my hearing aids help a bit but can be tough.
I hope you find what helps you and progress with a cure .
Love glynis x

 

What is the point in sharing this with us? You seem like the type that wants everyone else to feel as depressed and miserable as you are. Here you are trying to convince everyone that our brains are going to be horribly damaged and that we're pretty much f**ked. This is a SUPPORT forum, posting things like this only serves to foster negativty, which most definitely isn't helping anyone.

I seriously don't understand what is going on in your mind that makes you think posting threads like this is acceptable. If you want to fill your own head with nothing but the most negative research you can find regarding tinnitus, then fine, but don't go around filling ours with it. Ever hear the term "self fulfilled prophecy"? If you tell yourself that your life is over, you'll never habituate, your brain is decaying, etc., well that's what's going to happen. Of course it's your prerogative to fulfill said prophecy, but how about keeping it to yourself.

 

There’s no cure, and no one knows if there ever will be one. Sometimes you have to accept your fate in order to move on with your life. The only current alternative is to allow tinnitus to rule over you for the rest of your days. If you’re one of the lucky ones it may fade, but it’s still better to learn to accept what you have and then have the added bonus if it does diminish.

Tinnitus won’t be the last trauma you will go through and it may not even be the worst. Getting on with your life and being happy does not impact upon tinnitus research at all. If a cure is going to come it will come whether you’re happy or depressed, so we may as well work towards the former.

If you really want to help it’s much better to take a pro-active approach and raise (and donate) as much money as you can towards tinnitus research. At the same time do your bit to raise as much awareness as you can (which you may already be doing?). In the meantime, try to accept what’s happened to you and give yourself time to heal. Stop spending all day reading about it and get yourself out and about. Take up some new hobbies and reboot your life.

 

Blowout can you explain this a little more in details. You are saying the Brain is trying to save Neurons that we don’t need, to prevent further hearing loss. So it replaces it with noise?

 

Did you intentionally get my name wrong or was that a typ0?

One paper I read hypothesized that the noise is the brain trying to prevent cell death in the auditory cortex. If you have hearing loss, then those cells aren't used. If they aren't used, apoptosis occurs (cell death). So by simulating real noise it, in theory, helps keep those neurons from dying.

 

It's not sharing "negative" research, it's sharing imaging studies that show grey matter reductions in various neural areas. Losing neurons is generally not a good thing, and when areas like the hippocampus begin to shrink, it's hard to present that in a positive light as most of those cells don't ever come back.

 

Sorry typo. Very sorry. Thank for explaining. Got it!

 

That's the problem. We don't have better treatment because you're just expected to habituate. The only way that will change is if it becomes apparent that habituation and leading a "normal" life is impossible.

My life is miserable with this condition. Any drug I take just makes it louder. It makes me moody and irritable. There is no relief. I can't sleep without medication, I can't enjoy music as I once did. Honestly how can I lead a normal life when I have to make all these adjustments because my brain cannot let go of a goddam noise.

 

Understood

 

Your thinking is flawed. It’s well known, and documented, that tinnitus is a life changing and often life ending symptom (when people commit suicide). Letting yourself slip into depression without trying to regain control of your life only affects you; it does absolutely nothing for tinnitus research. You can say this about any medical disorders that are incurable. It is not said that people with ALS have to be miserable in order for science to respect the impact it has on a persons life. A friend of mine has Friedrichs Ataxia which has robbed everything from her, but she remains a positive girl and is always laughing and smiling. The research that goes into that condition certainly doesn’t require her to be depressed and unhappy.

We all know how devastating T and H are, and so do the researchers. The only way we can make an objective difference is to raise more money for research and awareness. Our personal emotions are irrelevant. I’d rather work towards my own happiness than lie down and let this condition rob everything from me.

 

@Ed209, if more people were depressed and unhappy because of tinnitus, it would show up in statistics... disability payments... so on and that would make a difference for research and attention tinnitus gets... too many live okey lives with T and then nobody from the outside cares about us or finding a cure. "Let them habituate"