Tinnitus Retraining Therapy

I believe there is some evidence that wearing maskers "cures" noise sensitivity/hyperacusis. Also, maskers do calm some people and make them less anxious. So, I do not think wearing maskers is bad per se. Also, I believe CBT/talk therapy/other mental health counseling is beneficial for many issues including tinnitus. So, the individual components of TRT when viewing them separately do seem beneficial to me. But, I do not think these treatments are good enough to tune out severe tinnitus. I do understand why TRT being sold as a "treatment package", and being considered the "gold standard" of tinnitus treatments, is underwhelming and more should be done for a cure. Also, I agree that the more people accept TRT as treatment, less will be done to find a cure and less urgently.

 

I started it on 2 occasions and had negative reactions to the sound therapy. Jastreboff himself replied to me in email correspondence to not persist with it if it was causing an adverse reaction.

 

The only way to receive a valid lobotomy is to get one from a doctor who has been lobotomized himself.

 

Others may take kindly being referred to as "dude" but I do not. If you want me to reply to your post then please do so with: Michael, Mr Leigh @Michael Leigh will suffice.

Thank you.

Counselling can help a person that is having difficultly managing and coping with tinnitus. I believe in order to do this effectively, the therapist (Audiologist/Hearing Therapist) must have tinnitus otherwise they cannot give what I consider to be high quality counselling. I am specifically referring to the tinnitus and not other problems or stresses the patient may have in their life that could affect the tinnitus. The condition is intrinsically linked to a person's mental and emotional wellbeing. Unless the person administering the counselling has tinnitus they cannot possibly know or have any understanding of the way tinnitus can impact on a person's daily life. One can learn about tinnitus from a book but only to a certain extent.

It is for this reason, many tinnitus patients become disgruntled after having a consultation with their ENT doctor and say: "He or she doesn't understand what I'm going through". They think because the person is medically qualified and works in ENT, they should know about tinnitus and the way it affects a person's mental and emotional wellbeing. Nothing more could be further from the truth. ENT doctors are physicians not tinnitus specialists. They know about the anatomy of the Ear, Nose and Throat. They treat underlying medical problems within the auditory system that is causing the tinnitus. They do this medically or surgically because this is their area of expertise. However, when there is no underlying medical problem causing the tinnitus as in Noise induced, the patient is referred to Audiology, this is the practice in the UK. Here, they will see either a Hearing Therapist or Audiologist that specialises in tinnitus and hyperacusis treatment and management. It is not unusual to find these health professionals also have tinnitus. They were either born with it or acquired it at some time in their life. This is particularly useful when practicing CBT, TRT and counselling with a patient.

When I developed tinnitus 24 years ago I read research papers and whatever information there was on tinnitus as others do at the forums I visit. I corresponded with members and found debates interesting but after a while my enthusiasm waned, for I learned many of the people that write this material and host tinnitus seminars and conferences, are medical professionals but have no personal experience of tinnitus. If they have it it's likely to be mild, nothing like the people in tinnitus forums endure. I joined the BTA and looked forward to reading their Quiet Journal every quarter, and particularly liked their letter pages. Here people that lived with tinnitus could write in with advice and suggestions on how to cope and manage the condition. Readers could write in with questions and people that lived with tinnitus for years (veterans) would reply and try to help.

I bought a 2 DVD video, covering a two day tinnitus seminar hosted by top ENT health professionals. These people hadn't a clue about tinnitus and how it affected a person's mental and emotional wellbeing. They presided over their seated audience (tinnitus sufferers) pompously as if they were all knowing about the condition when in fact they knew very little as most have never experienced tinnitus. They know about the anatomy of the ear and auditory system and brain, but that's where it ends!

 

I agree, this statement is the biggest insult of all.

I have had tinnitus for nearly 30 years. For around 28 of those years the volume was such that I only ever heard the ringing at night in bed when all was quiet. Literally, for 28 years every night. Aside from the first couple of years of having to get used to the uninvited guest, it's presence did not bother me one single bit.

A couple of years ago, after crazy headphone use, the loudness of the ringing increased significantly and it is now permanently raised I feel. Being able to hear tinnitus during the day as well as at night is a completely different ball game that brings with it, it's own unique set of challenges. The loudness of tinnitus is the key factor to this condition and is tremendously important when it comes to a patient's well being.

 

I wish you every success just take things slowly.....

 

I just wanted to report a scientific experience.

About a week ago, I was heading towards my third upswing in a year. I put on music at 45 decibels, so most certainly not objectively loud. I started to struggle after maybe an hour, but I kept going in order to pursue an experiment. Since my hyperacusis is not caused by loud noise exposure, I saw an opportunity to control the variables and look for the direct impact of noise on my condition.

Sure enough, that night, it got much worse. Over the past week it has been about as bad is it's ever been in the past year. I successfully got my data point; hopefully this spike will fade soon.

Anyways, I am still astonished that there is so much misinformation about this condition being labeled as legitimate science. If anyone tells you that sounds under 85 decibels can't cause setbacks, put simply, they are lying.

Every day, I still, even after my experiments and data points, cannot believe that Jastreboff has lied in the way that he has. It blows my mind; I feel like I'm some moron on a medical forum who's anti-science because I'm doubting someone who is a published scholar in this field. I cannot believe that he's actually wrong.

My advice to others: Figure out what is over protection for you, but don't let anyone try to manipulate you over the decibels or tell you that you're nuts. Listen to your body.

 

Wow Pawel Jastreboff actually said this to you. I’m surprised he told you to stop. I thought he would say along the lines like @Michael Leigh “It’s not working because you are NEGATIVE”.

See @Michael Leigh even the creator of TRT told him to stop doing TRT if it’s causing an adverse reaction. Why are you telling people to continue with the TRT treatment if they have an adverse reaction. This is why you need to stop saying to people that the reason why it didn’t work is cause they were too negative. You cannot use that as a reason why they did not benefit from TRT.

 

Dude.

 

Not only that the 1st clinician was doing it wrong according to what she had programmed. Search my posts. I posted the exchange with Jastreboff as a Q&A in this thread because I felt it was worth sharing. The second young lady I tried with back in February was in over her head and admitted needing to further her education. Like Zug, I appreciated the honesty. Dr. Nagler who posts in the Doctors' Corner also said the white noise should not make things worse and even if one follows the steps, there is no guarantee of success. I have stopped agreeing with Michael Leigh quite a while ago, but see not point in arguing back & forth. He is only offering what he believes in. I have been on a few forums and there is always egos involved unfortunately.

 

Can we get an F in the chat for Michael Leigh’s bruised dignity.

 

F

 

For 12 years my tinnitus was a low rumble at a 1-3 level. Sometimes when it was a 3 it would bother me a little, but it didn't really affect my life or upset me much after the first two years.

When last April it increased to a 5-8 level which I hear all the time, that's when my world collapsed. After a year of learning and adjusting its probably not got much quieter, but to be honest it doesn't upset me too much whether it's a 5 or an 8 on any particular day.

If it was to go to a 9-10 all the time, as a few unfortunate souls report, I would find that another level of difficulty.

So I would say volume changes within my current baseline range don't affect me much, but it's sudden, dramatic and lasting changes that are the problem.

Also I would add that the number of frequencies is a big factor (I now have at least 5 tones going on at any one time), plus the presence of hyperacusis is the real disabling factor in my case.

 

I think this perfectly sums it up.

Re hyperacusis, has it always been part of your tinnitus or is this a more recent thing?

 

Hello from another UK Bloke (Glasgow).

My hyperacusis only arose in the weeks following my noise trauma last April which happened at a live concert, following serveral months of using headphones at high volumes too much. I was exposed to further noise traumas in those early weeks, when I was still trying to figure out how to protect myself and what aspects of my former life I had to give up. I don't remember a specific point at which I was first aware of my hyperacusis, but certainly by July it was bad enough that I could not be in a moderately loud environment like a restaurant or a busy public event without experiencing pain, even with earplugs in.

Gradually things have improved and I have reduced my reliance on earplugs. It's like after any accident - you need complete rest from the activity that produced the problem for the first few weeks, then you gradually ease back into it. I don't know if I will ever be able to enjoy a rock concert again, but after another year I may reach the point where I can enjoy other genres at carefully selected venues.

 

Oh wow, I'm also from Scotland. Hyperacusis has improved gradually for me too but still got a lot of anxiety holding me back - I'm worried about a sudden extreme noise like a fire alarm undoing all my progress and landing me back at square one.

 

I'd love to see your experiment. You could make a thread about it.

 

@Lilah

You have the right attitude Lilah and I believe in time you will do just fine. Using white noise generators correctly in most cases, will improve hyperacusis and more often completely cure it. My own severe hyperacusis was completely cured in two years using them. A member of this forum told me their Audiologist who specialises in hyperacusis treatment said: All her patients that follow her treatment plan for hyperacusis are completely cured in 18 months. It requires wearing one WNG not two as she said the brain has only one hearing centre. She also provides regular counselling. The only patients that do not do well are those that don't follow her treatment plan.

I appreciate that some people may have difficulty with white noise generators but I believe they give up too easily. Try, try and try again is my moto, at least I'll have the chance of success after I've given it my best effort. When I first started using Tiex tinnitus device, the designer said if improvement in the tinnitus isn't noticed within 4 months, then it is unlikely to and one can stop the treatment. It was also mentioned Tiex can make the tinnitus worse for a while but one should persist as it's a sign the treatment is working. Some people stop using Tiex the moment their tinnitus is elevated because of fear which I can understand.

My tinnitus did increase whilst using Tiex but decided it was all or nothing. After 4 months using it I noticed no improvement but kept using it twice a day as instructed. At the 6 months mark the tinnitus began to improve but it was slight. I continued and gradually things got get better but stress, this was a slow process. That was in 2011 and I still use Tiex daily. Whenever I reduce using it or stop completely, the tinnitus becomes more intrusive over time. I see it as an ongoing treatment regime as one would take medication and keeps my life on track and for that I am pleased and quite content, even though the tinnitus can still reach severe levels requiring the need for clonazepam for no more than 1 or 2 days. According to my ENT consultant, I am the second worst tinnitus patient that she has met in all her years of practicing Audiovestibular medicine. She told me this in 2010 when I asked her to please be candid about my condition. I explain more in the post: My experience with tinnitus, on my started threads.

Michael

 

For sure

 

https://www.statpearls.com/kb/viewarticle/30212

lol

 

So is the argument with itching then that severity doesn't matter either?

 

Completely crazy that they make this claim, right? Anecdotally, my girlfriend was once covered in a rash from Oak Processionary caterpillars. If I would have told here back then that it wasn't any worse than a mosquitto bite, she would have punched me so hard that my ears would have been ringing. Luckily I didn't and my ears aren't ri... Oh wait

 

I went through TRT in 2003 and it helped me habituate. It wasn't easy but I often liked my WNG because they gave me some relief. I am thinking of purchasing this https://www.medininja.com/nano800-completely-in-canal-hearing-aid-by-earcentric.html as a back up. The original WNGs were a small fortune. I wasn't always happy to have something in my ear, but I do believe they helped me and I plan on using them again as needed. I also see a cognitive behavior therapist and have for many years due to my OCD and anxiety. I employ a lot of the techniques learned with her to dealing with my tinnitus. When all else fails, I take klonopin.

 

What was the negative reaction?

 

Harsher spikes. Elevation of baseline.

 

I feel ya on the elevation of baseline. Unfortunately my TRT provider said to just push through it because it'll get better. Well... it didn't.

 

I think Lenire is a much better option to try rather than TRT.

But for some TRT might useful, you never know.

 

Think about it. If TRT truly worked as advertised, would we really pass on it & subject ourselves to live with this torment?

 

Some people expect TRT, CBT and all other forms for tinnitus therapy to do all the work and they sit back and relax. Nothing more could be further from the truth. The counselling part of TRT and CBT, the Therapist discusses with the patient how the tinnitus makes them feel and how it has impacted on their life. Often people say they have lost interest in the things they once liked doing. The main goal is to gradually help them to look at life differently and with a more positive outlook and engaging in things they like to do. By doing these things positivity is reinforced and over time the negative thinking that is often associated with tinnitus and hyperacusis is gradually dispelled and demystified.

Michael

 

That kind of goes towards what I was saying. I have seen others say that one can do anything as they did prior to having tinnitus, like use headphones and play musical instruments (with hearing protection) since it is simply the negative aka distorted thoughts that drive the distress. I know you do not subscribe to this. What is interesting is they are just as convinced that they are right. Again this is simply meant as discussion.