Why Hasn't Long Term Use of Broadband Noise Improved My Hyperacusis?

This October will mark the 4th year since I was diagnosed with hyperacusis by an audiologist I found on the "TRT Worldwide List of Clinicians" on the Hyperacusis Network forum.

From early 2014 to mid 2016 I listened to pink noise from two different sources in my room for nearly 16 hours each day, in addition to having my window open much of the time to listen to the sounds outside and listening to music and sound from movies from time to time. The pink noise was the CD I ordered from the Hyperacusis network back in 2012.

I saw improvement during this time, but I wasn't sure if it was from the ativan I started taking in early 2014 or because of actual improvement. Lo and behold, as soon as I attempted to taper from ativan, my symptoms hit me back in full force and my ears not only felt like they did in 2013, but worse. I reinstated on ativan due to a severe withdrawal reaction, but my symptoms did not recover fully. I am planning to do a slow taper from valium and I'm worried my T and H are going to worsen during the process and the extreme hyperacusis and ear pain will return.

My question is, if broadband noise is effective in treating hyperacusis, why didn't listening to so much broadband noise over a period of 2 and a half years actually improve my hyperacusis? Why does the Hyperacusis Network talk about TRT like it is the holy grail of hyperacusis when there are people who receive no benefit from broadband noise?

As of now I cannot tolerate the grating sound of broad band noise for very long, so I've halted my "treatment" but I still keep the window open from time to time at night to hear the soft sounds of the outdoors. I stop listening to sound when I cannot tolerate it for longer.

 

I did the same, tried broadband noise (white) for about 4 months straight, it only seemed to worsen things permantly. I dont think there is any real proof behind these methods.

 

I ordered the 'official' pink noise CD from The Hyperacusis Network a few days ago, waiting for it to arrive now. People there maintain that it's an effective treatment in most cases (over 90% it's claimed on that website). That is to say, the people affiliated with the Network say that, which of course is the same people selling the CDs (and also earplugs and even iPods), but ok. When I asked how exactly pink noise works, and through what mechanism it's supposed to improve one's H, they weren't really able to answer my questions. But to be fair, it seems no one in the world fully understands H yet, so I guess I can't really blame them for that. I'll give pink noise a chance and see what happens.

As for TRT, I've found a place in my country where they do this, and it's even on the Network's list of approved clinicians. They should have room for me in a couple of months. I do hear good things about TRT, but at the same time, it too has a success rate far below 100% to put it mildly. But gotta try something right..

 

I was banned from the Hyperacusis Network a few years ago after expressing frustration at how the "knowledgeable" regulars completely ignored or glossed over several of the questions I had. You're right that many of the answers are things noone knows, but they would not even acknowledge that the questions were unanswerable, let alone provide answers.

That board is just a very strange, very dark, and heavily censored place. Dozens of long term sufferers have been banned, from what I am aware. It is very hard to have a meaningful conversation with Rob, the resident "expert". He has this sort of smug pedanticism and a manipulative way of taking your words out of context. He is often very repetitive and mechanical in his speech, almost like he is reading from a script.

Yeah, something like 1 in 5 people don't respond to the treatment, and this figure only considers people who complete the entire treatment. Meaning, it excludes people who drop out due to worsening, which could account for more people than you would expect, but you would never know. Not to mention that none of this has been part of a double blind placebo controlled study, and the vast majority of TRT research is tailored toward tinnitus patients, not hyperacusic patients.

I agree that we should try to get better; there is always the possibility of improvement. And I also believe that hyperacusics should expose themselves to some level of sound and not permanently stuff their ears with cotton, but we should maintain a degree of skepticism toward the prevailing advice. These methods of treatment aren't even actually standards, there is no medically accepted standard for hyperacusis treatment at all. There are a number of experts in the field who disagree with and wholly reject the Jastreboff model.

 

You mean TRT does not work for H? Nonsense.
Did you use the correct Nagler protocol H1X45T54?

 

Indeed, they seemed to not want to really respond to my questions but rather tried to get me to just believe in pink noise / TRT.

Yeah, I kind of get what you mean, there is something off about that place. And the forum software looks like something out of 2001 too, haha. Still, it's a site where one can talk with other people with this condition, and I might still learn something valuable there. So I'll check it from time to time.

Yeah.. I'm not just assuming that after a few months of TRT all my problems will be gone. I realize that it might not help me much or even at all. (Hope it won't make matters worse though, good grief!) But it might help, and besides, if I only want to undergo treatments that are scientifically proven to work then my options are... yeah, none. :/

I'm trying to walk that line now, enough sound to keep my ears from becoming unused to sound, but at the same time trying to avoid sounds that make my condition worse.. it's not easy, my ear hurts half the day at the moment. Still, I gotta keep some hope. Maybe sooner or later it will recede again at least partially, and who knows, they might even invent some new treatment some day. (And about bloody time it will be!)

 

I can understand how TRT could help some people but my own T and H increases when I try to listen to white/pink noise. The passing of time is what has helped me the most and I sometimes wonder if TRT is partly successful only because it takes 6 months or a year to complete.
I was also advised by ENT at the Cleveland Clinic not to overprotect my ears. I have gone from wearing an earplug always to just carrying an earplug always, just in case. (I only need one.)

 

I'm currently trying to figure out what to do to try and treat myself. So far I have not come up with very much. I have been to five doctors in Manhattan and none of them really offered any treatment options at all. I saw one inner ear specialist who claimed to have hyperaccusis and tinnitus himself ! He told me he had really bad problems again in one ear because he was babysitting an infant who was screaming in his ear then he basically told me either it will go away or not in six months to a year. Most of them claimed all these white and pink noises and retraining were useless.

I am also suffering from autoimmune symptoms I got as the result of a tetanus vaccination in 2015. My whole entire body has become weakened and I think this is partly why I ended up getting this in the first place. I am removing toxic metals from my system and it has helped a bunch with a number of symptoms but I still have to do that for at least another whole year or two. I noticed recently that many of the people in my facebook chelation group also suffer from sound sensitivity. I guess I just have to hope that as the metals go out things will continue to improve.

I'm doing my best to live life like a normal person. I only put in ear plugs when I have no other choice or I know I can't handle it. My son had his birthday at a sports place that also had laser tag and an arcade so I used them for that. Mostly I just use my headphones for protection when traveling on the trains to and from work. The ear plugs seem to make everything worse every time I use them so I avoid it at all costs. I also wear the headphones when walking around manhattan because it's just too damn noisy. My tinnitus still seems to be very bad. I am very worried it has worsened permanently but I don't think I will ever be able to tell until all the fullness and other problems resolve. I was habituated to it before so I hope I can do it again. it seems impossible at the moment because it's so loud but I know my hearing is still blocked and that may have something to do with my perception of it.

I do feel like I have improved a little bit from the onset four months ago. I can listen to music without it destroying me but the volume still has to be turned down quite a bit. I can also be in my kitchen again without having too many problems. I can do stuff with my kids without going bonkers now too. We went to the park and had a really nice time last week. Soon we will be going to the beach for a week and it's nice and quiet down there so should still be a nice week. Will only need the earplugs when we visit the boardwalk or if we go on a jet ski or something.

 

Here's a pretty vague answer.

The brain is one of the most complex things. People barely know how it works, so things like Hyperacusis are treated with some stuff that only works on some people and the other unlucky people have to find different more rare methods.

 

No-one seems to have hyperacusis unless they have exactly what Rob had. He's not a medical person and doesn't seem to get that presentations of disease processes are not always identical in every body.

The banning is strong with them too. I don't look there much anymore. All their regulars swear by TRT but are always having "setbacks". Could it be a failure of diagnosis, not a failure of faith?

 

One thing that struck me about Chat Hyperacusis was the seeming resistance to the possibility that there may be valid potential surgical options for treating hyperacusis. It's like its the worst news they could have had.

 

I've come to think of TRT as more something to do while you wait to see if your auditory mechanisms re-organize themselves in a manner that feels like "healing". I get the theory behind it, and how it is supposed to have a subliminal impact over time, but I can't get past the belief that its really just a variant of the placebo effect, which, well, isn't always such a bad thing for some. Maybe I need to be re-baptized in the cleansing white-noise of Nagler.

 

I agree with that. How can you know if it is the treatment that helps or the brain that adapts? . The process takes too long to make such a claim. Perhaps something is still healing/adapting? Especially if you do not put a load on it most of the time. I experience a stronger hyperacusis at the end of the afternoon. As if my ear/brain is getting tired.
I tried pink noise too, but probably too short to notice anything? (approximately one month). I will try again for a longer time.

 

I have the same experience. My hyperacusis is usually better in the morning after a night of quiet sleep than it is after a long day of relative noise. This runs contrary to the idea that silence makes your ears more sensitive.

 

And mine is the opposite. It's always worse in the morning.

 

Mine is a mix of both. Sometimes worse in the morning, and sometimes worse at night.

 

We are clearly not "on to something".

 

If you live in Manhattan, honestly, my personal advice is try to move away to someplace rustic for a while and see how your ears like it. I hadn't been to NYC in a few years; I was there recently and pretty shocked at how abysmally loud the whole place was, even compared to the racket I deal with in DC. I do not understand how healthy people, let alone people with audio problems, manage to live in downtown NY -- 24/7 sensory input, constantly, with street sounds often exceeding 75-80db. Completely insane, clearly unhealthy for anyone.

Fuck big cities; I am headed to the sticks this fall, and thrilled about it.