Stop Telling Me to Live with It or Habituate

ETD being addressed in what way?

I have ETD and the Ent doc I seen said nothing can be done. Just gave me the "live with it" attitude

 

Ok. You choose to reject habituation. Then you better start advocating in positive ways towards a cure. What are you currently doing to help this along?

 

Let me be clear in saying that I don't exclude an issue in the brain as a consequence of hidden hearing loss (or any type of sensory/hearing loss). The brain appears to respond to a loss of (in this case auditory) input and has some compensatory mechanisms in order to maintain homeostasis (or "balance"). If hidden hearing loss provides this loss of input, this might be enough to result in rewiring of neuronal circuits (neuroplasticity) and compensatory hyperactivity in other regions, ultimately causing the tinnitus perception (or the visual variant; "visual snow"). I don't think it is primarily a brain problem though, which you seem to do. I think it is a response to sensory (nerve) damage of possibly any kind (because also traumatic injury upon accidents seems to cause Tinnitus in some cases), resulting in a loss of input to the brain of any kind and hence hyperactivity as a compensatory mechanism.

The research of Susan Shore seems to point in this direction as well. She researched the "somatic" variant of Tinnitus, where touch-sensing neurons appeared to become hyperactive upon loss of input from auditory neurons. This might explain "somatic" tinnitus, where your tinnitus percept is strengthened when applying pressure to certain parts of the head or neck or making certain movements. The somatosensory neurons in these places seem to exaggerate their response to compensate for the loss in other places.

 

Fair enough.

 

Ah, well sorry I don't measure up to your credibility measure. Give me a break and get off your soapbox.

 

It would be interesting to see if restoration of auditory input to the brain will bring down the tinnitus perception. If the brain is truly plastic in the sense that it can adapt to changes, it would be reasonable to expect it can at least reorganize it's circuits once again, calm down the hyperactivity because the compensatory mechanism is no longer needed to maintain homeostasis and hence reduce or even eliminate the tinnitus perception. It is because of this I am very interested (and excited) to see if hearing restoration will result in the undoing of this neuroplasticity at least to a certain degree.

 

@GregCA It's in the clinical trial article.

https://clinicaltrials.gov/ct2/show/NCT01480193

 

So since you won't accept this condition, what are you doing about it now?

 

@Vinnitus In reference to your last paragraph:
I agree. Tinnitus percept is strengthened or aggravated with certain movement to the neck, jaw and other places. I had moved my neck today changing positions and it cracked. This immediately resulted in louder tinnitus and it hasn't gone away yet.

Many don't understand how difficult it is with severe tinnitus, but not being able to make certain movements. This would be having severe disabilities, an ongoing battle where somatosensory neurons react - as you say.

 

Suffering since I don't have a choice.

 

There is nothing to advocate because there never will be a cure. You cannot reverse engineer the brain to respond to hearing loss by not becoming overactive and not shrinking different parts of the brain. Claiming tinnitus will have a cure is as stupid as claiming cancer will be "cured". You cannot stop cells from mutating, so cancer cannot be prevented or cured. We can only have better treatment.

 

so..what do you hope to achieve here?

 

I guess venting. Makes me feel better. I'm sure the noose will go around my neck at some point or another

 

Your logic is flawd. You don't have a clue, just how bad people with cancer have it. Tinnitus is annoying, cancer takes 1000s of lives or more per year. Tinnitus doesn't. Tinnitus is what we make of it, cancer is not something we can make anything of. Some are successful with their cancer treatments, but it is still taking tons of lives....

Your mentality in life makes a huge difference......

 

He's not alone I'd take the cancer too. At least cancer will have a cure soon.

 

I love when members say something along the lines of wanting to have cancer instead of tinnitus.

I've now both watched my dad and very close friend both pass away from bowel cancer and I would never wish it on even my worst enemy. They both went through years of suffering (chemo, multiple surgeries, radiation therapy, experimental treatments, etc) just to have to either literally starve to death or have their organs eventually just shut down on them - it was horrifying to watch. Even with the strongest medications (opiates, benzos, hypnotics, etc) available, it's still absolute torture.

I think movies and TV have sort of dulled our perception of how truly horrifying and devastating cancer can be. You don't just lie in a hospital bed, lose a bit of hair and do a round of chemo. It's years of trying to either rid your body of the cancer, or hoping that it doesn't spread. Also, chemo and radiation can absolutely destroy your hearing.

I understand some of the posters here experience truly severe tinnitus, hyperacusis or other conditions such as meniere's. But I notice many of the "woe is me" type posts come from newer members who think the world is over because of their moderate tinnitus. Truth is most of the same posters will move on from the forum in 1 or 2 years and their brain will eventually adjust to their tinnitus.

Also agree with the other poster. Your mentality and attitude towards your condition makes an insane difference in your ability to recover and move on with your life. Without a positive mental attitude, I don't think I would have ever recovered from severe hyperacusis.

 

Agreed. Cancer runs in the family and my grandma is dying of lung cancer. We don't smoke by the way...

That being said, I would take the cancer. There's a higher chance of that going away.

 

Hi @yonkapin - So very well stated and true! When some state their preference to have cancer over tinnitus, I very much doubt they even begin to grasp the gravity of the disease and all its many dire implications.

I am pleased to hear you have recovered and let me wish you good health and much happiness.

Sincerely,
Barbara

 

That depends on the type of cancer, some are easy to treat and have a higher survival rate, some do not.

I don't want ANY cancer. With tinnitus, you can learn habituate to, and/or get drugged up enough, to endure even the most viciously intrusive loud symptoms, but actual cancer, even if it's in remission, or a mild form that is cured, is something that you will still always have to worry about, for the rest of your life. Tinnitus can be horrible, but it's not deadly unless you make it that way.

Very sorry to hear about your grandmother.

 

Yeah, I would take benign skin cancer over pancriotic cancer any day. I would rather be worrying about cancer than having to deal with tinnitus. Will gladly trade any day.

 

I wrote the post below a few years ago at another tinnitus forum. It has been amended slightly to fit in with this forum but essentially I’ve left everything as it was. I was going through a very difficult time with my tinnitus and wanted to express how I felt. I was fortunate to have an understanding GP, ENT consultant and Hearing Therapist but most of my family and friends just didn’t understand what I was going through and frankly, I don’t think they wanted to know after a while.

We all know that tinnitus can make us feel isolated. I learned other forum members experienced the same with people they are close to. Unfortunately, not all of them had understanding healthcare providers. I just want to say: there is a way forward with tinnitus, although it may take some time you will become a stronger person.


Tinnitus, a way forward

Many people outside of this forum do not realize that tinnitus can be a very debilitating condition. Even some GPs have a cavalier approach to it but thankfully not all health professionals share this view and are to be commended for their care, time and consideration they give to helping those tinnitus patients that are having a difficult time with their tinnitus.
Someone that has loud intrusive tinnitus there is usually no outward bodily signs indicating their discomfort. Unlike a person with a broken leg, on crutches and wears a cast. Neither can the severity of tinnitus be measured on any medical equipment. So the sufferer endures this torment in relative silence.

The fact that tinnitus comes in many forms and intensities compounds the issue and just for good measure it can be variable on a daily basis: mild, moderate, severe or extremely severe. Many people with mild tinnitus are able to live perfectly normal lives doing everything they want to because the condition hasn’t become serious enough for them to visit their GP and then be referred to an ENT department for treatment.

To people reading this post I ask, how many times have you mentioned to someone that you have tinnitus and the reply has been: My friend, Father, Mother has that but they just ignore it and get along with their life?
The above comments can be crushing to someone that is distressed by tinnitus. It can make one feel terribly guilty for even mentioning the word. You might feel a failure. That old adage: pull yourself together is still alive and well in 2015. There might be times you feel it necessary to confide in someone how your tinnitus makes you feel, there is nothing wrong in this, a problem shared is often a problem halved. Just choose carefully with whom you talk to, as you need support, understanding and a good listening ear. Thankfully, there also people at tinnitus talk who are understanding and wont judge or think that you are inept in some way because you are having a difficult time with your tinnitus.

Over the years I have read in tinnitus books that the condition is not life threatening, I have heard people say it isn’t comparable to any serious medical condition. In reply to all those people I will say this: You have never suffered from loud intrusive tinnitus otherwise you would think twice before making such a statement. At the very least I believe such statements are abridged. You have to walk in a person’s shoes to be able to know what they are going through. You have to have been there done that then you are entitled to voice an opinion.

It is true by itself tinnitus is not life threatening but that isn’t the end of the story. Anyone suffering with severe intrusive tinnitus, I believe it is comparable to any acute medical condition, simply because of what it is able to do to a person’s state of mind. Anti-depressants are sometimes prescribed as treatment for tinnitus. These drugs will not necessarily stop the tinnitus but can help prevent a person from becoming too depressed because of the noise in their head and ears.
People mustn’t be under any misconceptions the depths that this condition can take one to. If tinnitus is left unchecked it has the ability to make a person think and do something irrational that otherwise they wouldn’t contemplate if they weren’t in such a distressed state. One only has to do a search on Google to find this out. So there lies the paradox.

However, we can move forward and help ourselves by using different coping strategies in addition to such things as anti-depressants, tinnitus retraining therapy cognitive behavioural therapy and Relaxation exercises.
I have talked about the importance of having a positive outlook on life and how negative thoughts about this condition shouldn’t be allowed to get a hold. Acquiring a positive attitude to tinnitus isn’t something that happens overnight but we must start somewhere. Our mind and thought processes are very powerful.

There is a saying: belief can kill and it can cure. When my tinnitus is particularly troublesome I try to takeaway the attention from my tinnitus by first thinking inwards and acknowledging the positive things in my life and holding on to them - I would encourage you to do the same. Secondly, I project my thoughts outwards away from myself and into the world and look at what’s happening with other people. First in and around my neighbourhood then further a field. How other people’s lives are being affected and the circumstances they are going through.

It is often said no matter what our circumstances are there is always someone worse off. I am in no way trying to play down the severity of tinnitus but it is my way of trying to be positive in hope of restoring some equilibrium in my life in order for me to carry on.

Michael

 

@Michael Leigh - Michael, that was a beautifully written, evocative and inspiring post.

 

Yes, I strongly believe restoring inputs is the best way forward in Tinnitus reduction. I came across an excerpt of text today which reaffirms my beliefs.

http://journals.lww.com/thehearingj...aring_Loss___A_Clinician_s_Perspective.2.aspx

Restoring electrical stimulation of the auditory neurons has been shown to be able to reduce Tinnitus in people where some type of hearing loss appeared to be present AND appeared to be the reason for the Tinnitus percept. This has also been demonstrated in some (but not all) cochlear implant users (this might depend on the surgery and placement of the implant or the amount of damage the surgery does to remaining inner ear structures as it is very delicate. I can imagine putting in an implant with today's surgery methods and techniques is comparable to walking with an elephant into a dish-filled cupboard). Biological regeneration, where we effectively harness nature's way of restoring the inner ear, is the best way forward for Tinnitus caused by loss of auditory input in my opinion.

 

Here lies the problem in that theory. Many of the chemotherapeutic drugs that use platinum are by definition, ototoxic and will cause physical damage to your auditory system. Soo you may end up with cancer, severe hearing loss and likely tinnitus..

I’ll take just the tinnitus.

 

There are more than 100 different types of cancer and variables even within the individual types. Staging, tumor location, overall patient health, etc. all contribute to whether a patient can be treated. A cure for one is not a cure for all.

And define soon for a cure: a year, five years, a decade? A cure five years from now will be too late for many people. Even a year from now will be too late.

 

Makes sense. If I were guaranteed tinnitus without cancer or cancer without tinnitus, I would take the cancer.

 

Hard to believe my own thread has been hijacked into all these other topics. It is what it is though and I'm glad I'm starting discussions. It what I write these for.

Tinnitus has made me depressed and ruined me life. All I think about anymore is how can I screw up my brain's ability to maintain the noise, or how can I hang myself, or how the hell I can enjoy life anymore. Just because I'm new does not mean I will "adjust". In part because habituation is, to me, giving up. I know many of you say it doesn't have to be, but to me that is what it means. I won't settle for anything less than a cure or great reduction to where I don't need to habituate because I don't even hear it. I won't settle for less.

 

I'm sorry if you feel that some of us have hijacked your thread, the intention is to spread knowledge and possibilities, because the "cure" might be right around the corner for some or many of us. These sounds we hear are inside everybody, but the normal volume is beneath most people's perception. With tinnitus, something is amiss and we hear them. When you can teach your brain to adjust itself to filter out the tinnitus, like you used to before tinnitus, isn't that tantamount to a cure? That's the goal of habituation, and it works for most people who have tinnitus, in time.

 

Habituation isn't a cure, though.

 

I think it is, you're fixing something that is broken. There's no Wizard of Oz fix for this. With habituation, sometimes you have to do some work, and it's hard, but it eventually puts the noise back where it belongs, beneath your awareness, the way it originally was.

What exactly do you want, a pill or an injection, or something different? Good luck with that, maybe in a few hundred years you'll get your wish. In the meantime, I'm not willing to be a tinnitus martyr by refusing to do some work and adjust my brain back to working the way it's supposed to, and filtering the noise, to the best of it's ability. If others have successfully habituated, virtually all of us can, as well.