“Learn to Live with Tinnitus” / “Habituation Is as Good as a Cure” Is Appalling

1. “Learn to live with it” = more tactfully worded than “sit and suffer until you are so numbed by the physical and psychological devastation you’ve undergone that it becomes your baseline and you expect life to get no better.”

2. “Habituation IS a cure” well, you are stupid. Incredibly so. Putting aside the greater plight of severe sufferers, this seems to equate “not in conscious thought” with “completely harmless.” And this is simply not the case. Let’s say you put off doing a project as a kid. You kinda felt it in the back of your head but were able to distract yourself with more tangibly rewarding activity. The stress response—while somewhat muted by the enjoyable activities in which you partook, is still subconsciously registering as stress and exerting very real physiological consequences.

Show me one sleep study wherein those who’ve habituated with tinnitus have practically similar sleep architecture to those who’ve never suffered from tinnitus.

Physiology doesn’t lie. Pawel Jastreboff does.

 

It’s a shame so many tinnitus communities still cling to this paradigm. The psychology is that people want what they don’t have. Tinnitus doesn’t have a cure and for the longest time it didn’t even have a treatment; so the coping mechanism the tinnitus community developed was pretending that acceptance was a good treatment. The danger here was when opportunists like Jastreboff and the mindfulness researchers took advantage of it and started selling this like it was a true treatment. That’s why so many of the community conservatives cling to this for dear life, they were taught to. This isn’t unique to tinnitus sufferers, but it’s really bad for us.

Almost all habituation shilling arguments can be extremely easily beat with even the simplest logic. It’s not intended to be convincing. It’s not even really intended to be coherent, it’s just a coping mechanism.

 

You can be habituated within certain parameters. It doesn't stop you missing doing the things you used to love doing without fear of worsening your symptoms. That's the part that doctors and people with mild tinnitus or with no hyperacusis just don't get.

 

It’s completely asinine. I cannot stand when people push the “everyone has some level of tinnitus/hurrr google anechoic chamber.” The first is simply just untrue (or the tinnitus figure would literally be 100% and we’d be calling it something different like exploding ear syndrome) and the latter is another false equivalence.

I don’t hate the concept of habituation but it’s not the holy grail by any means. Yes, habituation to perception is perhaps the best that we can ask for, but it still sucks. My mom still suffers from sleep disturbance and has been habituated since God knows how long. I’d bet any amount of money if we were to remove her tinnitus that her sleep and every psychological/physiological system that sleep influences would better flourish.

We should be promoting wellness, not martyrdom.

 

@mrbrightside614

About 20 years ago I got noise induced tinnitus.
It took about 4 years for my mild tinnitus to resolve... I never thought about it... never heard it... didn’t bother me for 15 years... it was gone... until a new acoustic trauma 3 months ago... now it is severe...

habituated? If that means I just didn’t care about it... that happened early in because I knew there was no cure 20 years ago... but for the last 15 years I still protected... but I never heard it even with earplugs.

Then I had an MRI... Now for 3 months... I hear it over everything... hope that helps.

 

Ya habituation is the medical communities way of saying sorry you're screwed. It's one of those things where mileage varies based on severity. We are pretty far down on the pecking order of ailments they give a shit about. If it's not "life threatening" they don't care. The absolute worst is the people that minimize tinnitus by saying, "at least you don't have cancer" or the like. Implying we ought to be greatful that it wont biologically kill us. Trivializing the far reaching effects like complete psychological weardown of severe sufferers.

 

Back when I had tinnitus, I had a guilty gut feeling that I wished that tinnitus was bad for your health because at least it would make researchers care about us. Now that research is coming along pretty well I don't think that anymore. Imagine if 15% of the world didn't have tinnitus and it was a "rare disorder"? If that was the case there would probably be absolutely no tinnitus researchers. The medical community has made it crystal clear that they don't care about tinnitus sufferers; they peddle "habituation" as a treatment to steal our money from us while producing absolutely nothing of value.

 

Exactly, there's a dimension of political correctness at play that makes us feel guilty for wanting to have a 'cause' like finding a cure for cancer. As if we are less worthy. At least we have the vets as our posterchildren to draw attention, especially with the link between tinnitus and ptsd.

 

Tinnitus can get really bad and will be way more common in the future with hearing loss ramping up, but you never hear that angle of the argument. Just "oh blah blah learn to ignore it".

 

I agree. Learning to live with tinnitus and getting the best treatment possible is the best way to live our lives at present. Accentuating the positive things in one's life and focusing on them is the way forward. Most people seasoned to tinnitus and all veterans know this. It does not mean research into finding a cure for tinnitus should not be sought, on the contrary. However, members that constantly bleat, moan and groan - blaming their government and health organisations for not finding a cure doesn't help, as this way of thinking can cause long term psychological damage and make the tinnitus more overbearing, due to negativity that is instilled and reinforced by the camaraderie associating with like minded people, at forums and other social media platforms.

Anyone new to tinnitus and happening to be reading some of the negativity that is posted throughout this thread, please don't despair as tinnitus often improves with time. If your tinnitus was noise induced, my advice is not to use headphones even at low volume. Keep away from overly loud sounds and seek the best treatment that is available to you. Get a referral to ENT for tests, then onto Audiology to see an Audiologist that is trained in tinnitus and hyperacusis management and treatment, if you are having difficulty managing the tinnitus. If possible stick to reading positive posts and once you start treatment, my advice is to keep away from all tinnitus forums and don't discuss your treatment in them. The reason being, negative thinking people such as those on this thread, can influence you into their way of thinking and you could find yourself, spiralling down into a vortex of confusion and discontent. Please click on the links below and read my posts.

All the best
Michael

https://www.tinnitustalk.com/threads/new-to-tinnitus-what-to-do.12558/
https://www.tinnitustalk.com/threads/tinnitus-a-personal-view.18668/
https://www.tinnitustalk.com/threads/hyperacusis-as-i-see-it.19174/
https://www.tinnitustalk.com/threads/acquiring-a-positive-mindset.23969/
https://www.tinnitustalk.com/threads/tinnitus-and-the-negative-mindset.23705/
https://www.tinnitustalk.com/threads/the-habituation-process.20767/
https://www.tinnitustalk.com/threads/is-positivity-important.23150/

 

Dude, I have 100% had that same irrational yet rational thought. The problem is that the comorbidities and complications that stem from tinnitus are NEVER causally related to tinnitus. Anxious? Your mental health sucks! Depressed? Your mental health sucks! Here’s some pills. *years down the road* cancer? Tough luck! Coulda been stress. Here’s some chemo.

I had a pastor lecture me on two(!) occasions that he had prostate cancer—the implication was that I shouldn’t be complaining about something so trivial by comparison. This dickhead was like 85 and was bitching about the fact that this might take him out. Did you expect to live forever? How could you be so selfish to not even be able to sympathize with the sentiment of completely wasted youth and potential?
Honestly at many times during this illness I would’ve taken cancer over this. At least you have a treatment available to possibly get better, or at least you don’t have to live in 24/7 torture.

@Michael Leigh and other sufferers—yes, please don’t take my hardline stance as the status quo for sufferers 6-7 months out. It can improve or you might have a personality that’s better suited to deal with it. Either way you should do whatever you can to contribute. I’d suggest donating specifically to HPN-07 and the Hough Hearing Institute.

 

Reason I think online forums can also be informative. Imagine. One reads that Lenire (just as with TRT, CBT ect.) has over 80% success rate.

One thinks I best fly to Ireland and get fixed! Only to possibly wind up with further acoustic trauma, or throw gobs of $$ at an audiology clinic or psychologist.

Same with the use of so called "sound generators"

With real people user experience reviews on can find out this is not necessarily the case or is not for everyone without any personal bashing involved.

I think there is a reason GP's and ENT's tell you that "you have to learn to live with it."

 

@bobvann
How is your TRT treatment going? I hope well.

 

Not... really. The noise generators can cause quite a reaction as you well know. Having said that it does feel like my hyperacusis my be losing some sensitivity. I have a few more months for the trial.

 

Yes, I know. What’s confusing is that someone by the name of bob x said he could not tolerate generators because of his hyperacusis. But doctors will say generators help treat hyperacusis. Then Dr. Nagler told me generators are not for everyone and should use phone apps or CD with broadband noise to treat. Now, I also have an echo and Dr. Nagler said it could be diplacusis. This can be caused by ear infection or obstruction or hearing loss. I have no obstruction or infection. Prior to generators I had no hearing loss. So why the echo? Did hearing change after wearing generators for several months? Who knows. If your hyperacusis is improving great.

 

Still too early to tell. Will see how it goes. I also can Bluetooth phone apps.

 

@mrbrightside614
You are on point with your assessment on habituation. I am sorry to read about what your mom is going through. Someone said that it’s one thing to have to deal with the thought of someone repeatedly punching you in the face. It’s another when you actually are being punched in the face. Physical pain, discomfort and/or annoyance is real. It’s not what if. It is beyond what if it’s please STOP. People say well, I have tinnitus too in an effort to relate. But these people do not need sound machines or phone apps to try to sleep. They do not need broadband noise or music to moderately function during the day. They do not need meds, that I agree may eventually lead to cancer, to make it through the day. They do not see the emotional and physical distress our condition has on our love ones, which hurts to the core. They do not feel their lives have been turned upside down. They do not feel they live in a bubble. Yes, they have tinnitus but please do not talk to me like our experience is the same. No pill, sling, cast, or surgery is going to abate what’s happening in my head. It’s a cacophony of sounds that no one should ever have to try to habituate to in order to feel a modicum of normalcy. I pray that TOMORROW will be TODAY for a cure and not merely treatment and theories.

 

@bobvann
I pray you get the results you seek with the generators.

 

What I would suggest to you is to do what I am doing. You mentioned that you constantly wear them and it makes your situation unpleasant. I only have them on for a short time until it becomes bothersome. The hope is to build up more tolerance. The Doctor (Nagler) is onto something with his advice. Those things you describe above is what our friends would describe as "distorted thinking."

 

@bobvann
I plan to see another clinician this week. Whatever they suggest, I will definitely go slow, work my way up to the desired amount of wearing time. I like that you have control over how long you wear them. Keep at it!!! I know our friends would say your thoughts are distorted. This crap I hear everyday and its ups and downs is a distorted feeling. LOL. All the best to you with treatment. I pray that TOMORROW is TODAY for a viable cure. We all deserve it. Cheers!!!

 

Yesterday after doing some research she decided to change to pink noise to tackle hyperacusis 1st. Again I brought up Jastreboff. She did not know the name. Get this, she sent me a link to a blog for reactive tinnitus. Which has stuff written for TRT by PAWEL JASTREBOFF!

https://hearinglosshelp.com/blog/reactive-tinnitus/

 

@bobvann
I truly pray you get the results you desire. What’s interesting is that some studies and clinicians promote the use of pink noise for hyperacusis. Interestingly enough Dr. Nagler at Doctors' Corner started that any broadband color is sufficient to address hyperacusis. I do know that Dr. Jastreboff is a proponent for the use of pink noise to treat hyperacusis. So, I think your clinician switching to pink noise is on point. Bobvann, I wish you the best and I think this maybe my last post on any forum for a while. I’ve learned, for me, that I need to give less attention to the tinnitus. I pray it works. God Bless. CHEERS!!!

 

For sure for some folks staying away from forums is needed. I have another 2.5 months so I should know by then if it's going in the right direction. Giving it an honest try this time.

 

You are bang on the money. I completely agree that those of you who have tinnitus that doesn’t get worse with sound you are very lucky. For the majority of us that is not the case and people don’t understand why we can’t be in certain loud situations.