Look at What You Can Do, Not What You Can't

Look at what you can do, not what you can't.

Tinnitus comes in many forms and intensities and no two people experience it the same. I have had this condition for 20 years. In 2008, it increased to insurmountable levels with large fluctuations in intensity daily. This ranged from: Silent, mild, moderate, severe and extremely severe. No two days were the same. I had two years of TRT for the second time in twenty years that lasted until 2010.

My consultant and hearing therapist said, they rarely see patients with my type of tinnitus. It took four years to habituate for the second time. I was unable to read a book for two years. I have been to the brink and back many times and never thought my tinnitus would be where it is today. I still have fluctuations in intensity: silent, mild, moderate and severe. However, it no longer reaches the extreme severe levels I once had which would last for days. I was prescribed clonazepam, a bezodiazepine. It is addictive when taken for long periods and can have unpleasant side effects. It helps some people with severe tinnitus. It helped me for that I’m thankful, as there were times it was a lifesaver. I only take it occasionally usually for no more than three days.

My tinnitus can still be problematic, especially when I want to read but the intrusive noise sometimes makes this difficult. However, I have learnt to accept it and look at what I can do with tinnitus, and not what I can’t. Keeping positive even in my down times is possible, for I look back to see how far I’ve come, as there was a time my life was very different.

Michael

 

The one thing I learned about tinnitus it is unpredictable. In the end it always come to the point of acceptance. Keeping positive is key. I wish you the best.

 

I couldn't agree with you more @leelo and thanks for your kind words. I have returned to reading and I enjoy my music and I'm an Audiophile. These are two of my passions in life. There was a time that I had doubts, I would ever enjoy them again.....

 

Yesterday a taxi driver beeped his horn about 2n away from me. Immediately i thought "oh no here we go". But nothing changed, its the negative thoughts after things like that that are horrible.

 

As I wrote in my post Sam: Hyperacusis, As I see it. https://www.tinnitustalk.com/threads/hyperacusis-as-i-see-it.19174/ It is very easy to get caught up into paranoia over sound if one isn't careful.

 

Indeed Michael, i'm not entirely sure if i do have hyperacusis but i have always been afraid of loud noises. For example, fireworks/any sudden loud. noise have always made me jump.

 

I went to the dentist last week and thought : "Ok it was loud but I'll be fine, I did it before". One week later I understand that this is a new trauma and my T has reached a new level of horror.

So yes, unpredictable.

 

You have very severe hyperacusis @Foncky that is for sure and I'm sorry to know you have to go through this ordeal because I've been there. However, there is help available which is probably the only way forward. Whether you're able to get this help is another matter.
All the best
Michael

 

It doesn't sound like you have hyperacusis Sam which is good...

 

How do you explain that your T improved so much ? TRT is not supposed to reduce T, just the perception of T.

 

@Foncky

According to Professor Jasterboff, when white noise generators are worn. The brain starts to focus on them and gradually pushes the tinnitus into the background and over time the tinnitus becomes less noticeable. The white noise treats the hyperacusis by desensitizing the auditory system, closing down the auditory pathways or gates.

Tinnitus counselling is the second part of the treatment and is a vital part of TRT. Tinnitus can become a problem when the patient starts to believe nothing can be done about the condition. If one isn’t careful anxiety and depression can start to take hold. Through regular counselling sessions with a Hearing Therapist the patient learns to look at their tinnitus as non life threatening and not to be constantly afraid of it and to be monitoring every little change in its perception.

At first 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, which is perfectly understandable. The main goal here is to gradually help them look at life differently and with a more positive outlook. Over time the negative thinking that is often associated with tinnitus and hyperacusis is gradually dispelled and demystified. The Hearing Therapist does this in a controlled and precise manner so that the patient feels relaxed and not pressured.

Many people that have never had TRT know nothing about it, and therefore they can easily be convinced by others that this treatment is ineffective. I believe the reason for this is because TRT is expensive. I was fortunate to have this treatment twice and on both occasions I had good results.

Twenty years ago when I first got tinnitus and hyperacusis they were very severe and I’ve written about this many times in this forum. My hyperacusis was as severe as yours or worse. I had TRT, which lasted two years. I wore white noise generators and had counselling for this length of time. The tinnitus reduced to a level I rarely hear it. The hypercusis was completely cured and has remained that way until this day.

When I had noise trauma for the second time I started TRT in 2008 until 2010. My tinnitus improved but it wasn’t as successful as the first time around. TRT will affect people differently as I have just described. Therefore, anyone that tells you this treatment is unable lower the level of tinnitus or doesn’t cure hyperacusis is wrong in my opinion.

As I’ve said, the effects of the treatment will be different for each person but that is not a good enough reason to say that is doesn’t work.

Michael

 

Not saying it doesn't work, I genuinely understood that the point was not to reduce T volume.

 

In my case it reduced the tinnitus to a level I hardly heard it. Whether that is the same as perception I've no idea but I don't think it really matters. When I had TRT for the second time. 2008 to 2010. My tinnitus improved but not to the same extent as before. However, I was no longer plagued with the excruciating noise that lasted for days unabated and have TRT to thank for that. My tinnitus now ranges from Silent, mild, moderate and severe. Only when it is severe for more than three days I think about taking clonazepam. The hyperacusis is still cured.

Michael

 

I started TRT since three months. It's actually very expensive (around 3000 USD). When I wear sound generators, well, I can obviously hear T (otherwise it wouldn't be TRT but mere masking) but the nuisance of it obviously decreases. When I wear the generators: because when I take them off, T is still present, since now absolutely no improvement, T is there and maybe a little worse than threee months ago. My mild H and sound sensibility persist too.

The path of TRT is longer than three months, as everyone knows. So I will see. Sometimes I ask myself if finally I will use the generators forever, like - I don't know - glasses.

PS: CBT and counselling are available, but to be honest I don't find them very helpful.

 

I don't think it would be good for your hearing, long term.

 

@Lazarus
TRT is one of the best treatments for tinnitus but it should be administered correctly, for it to be effective. Are you also having regular tinnits counselling with a hearing therapist or audiologist? If not this is not TRT. The counselling sessions should last about 1hr sometimes more.
The white noise generators should also be used correctly. I will assume you are doing this but will mention it for anyone reading this thread.
The white noise generators should be worn for upto 8 to 10hrs day. The are put on in the morning and the white noise adjusted to just below the tinnitus, then they are left alone. They shouldln't be adjusted throughout the day. Some people do this when they are out on the street and can't hear the white noise because of traffic. Please don't do this. If the generators are continously adjusted it will make habituation more difficult. The brain habituates to the white noise generators and slowly pushes the tinnitus into the background.

When retiring to bed at night the white noise generators should not be worn. Instead, one should use a free standing sound machine by the bedside for sound enrichment throughout the night until morning. The volume of the sound machine should be set to just below the tinnitus and not masking it.
Michael

 

Not true@Foncky I have been using my white noise generators for years and wear them even when my tinnitus is silent. I have above average hearing according to my Hearing therapist.
As long as white noise generators are used corrrectly they will not impair hearing or make tinnitus worse. Infact, they will help reduce tinnitus and cure hyperacusis in most cases.
Michael

 

You still use them ?

 

@Foncky Today my tinnitus is intrusive, not severe and I'm wearing my white noise generators as I type I am so used to sound enrichment, I wear them most days even when my my T is completely silent.....

 

Ok ! I imagined it was like forbidden to use them once the treatment is over

 

As I said @Foncky There are a lot of people out there that know nothing about TRT, the Ear and worse about tinnitus. They spread the wrong information and whip up fear and make people not in the know scared. Believe me, white noise generators used correctly cause no harm, in fact do good.
Michael

 

So - if I understand correctly - you did the whole TRT path twice and still use white noise generators...

 

Yes. The first time I had TRT 20 years ago my tinnitus reduced to a level hardly heard it. Then, in 2008 I had loud noise trauma. My tinnitus increased to very severe levels you wouldn't believe. After 2 years of TRT it had improved but my tinnitus didn't reduce to it's previous low level. Now I have large fluctuations. Silent, mild, moderate and severe. It no longer reaches extreme severe levels.
I still use my white noise generators, as I said I'm wearing them now as my tinnitus is intrusive. Yesterday it was completely silent but I still wore them for part of the day. As long at the white noise generators are kept low it's unlikely to make tinnitus worse. I have been using them for years and never had a problem.
Michael

 

TRT was absolutely no help for me. I've had tinnitus for five years now and thankfully for me now it usually only a minor irritant. What helped for me was time and medication - definitely not TRT.

So Lazarus, if you find that TRT works for you eventually - then great. But if you continue to find it's not helping much then don't feel bossed around by the likes of Michael Leigh that you;'re not doing it right or you're not doing it enough. It simply isn't working for you either.

There's actually very little substantive evidence to support TRT and you'll find that the number of people on tinnitus talk (apart from M Leigh) who found it significantly helpful is pretty minimal also.

 

@david c
lol...david. Never thought I was bossing anyone around by telling them about TRT. Many people that say they have had TRT actually have not, because they haven't had the full treatment which is: counselling as I've indicaded above. Regular counselling sessions with a Hearing therapist and wearing two white noise generators for up to 10hrs a day. The treatment lasts up to 2 years.
TRT will not help everyone but at the moment the only treatments are: CBT, TRT Mindfulness and counselling and that's about it.

Many people habituate to tinnitus within the first 6 months to a year sometimes a little longer, without having any treatment at all. The majority of people on tinnitus talk and other forums haven't had proper TRT following the Pawel Jasterboff Protocol which I've mentioned. They have had elements of the treatment which isn't the same thing.
Michael

 

I'm amazed TRT was so effective Michael, just reading this thread really offers hope to people who have intrusive T.

Although my own tinnitus is mild , i have suffered from sound sensitivity through noise trauma in the past.

If my own T one day was to become as intrusive as what you went through, I think I would probably take your advice and seriously consider this TRT.

Sounds worth a shot for people who are really struggling.

 

A lot of people knock TRT because it's an expensive treatment and they have never tried it. I would always advise someone not to have this treatment until at least 6 months has passed from onset, preferably a little longer as many people habituate to tinnitus, without treatment or just using sound enrichment in the early stages of acquiring the conditon.
It is good that your tinnitus is mild. If it was caused by loud noise then try to keep it mild by keeping away from loud sounds and not using headphones. If you have hyperacusis (sensitivity to sound) use sound enrichment at night. My post: Hyperacusis, As I see it. Gives suggestions on how to treat and cure hyperacusis. Clicking on my Avatar and choosing "Started Threads" you will see the post in the list
Michael

 

Believe me Michael I'm far from the only person on tinnitus talk who doesn't care for the way you position yourself as the fount of all wisdom on tinnitus. Well you're not - you're just another person who has had tinnitus for a long time and whose experience is neither less nor more valid than others. What you were telling Lazarus was that he has to wear white noise generators for 8-10 hours a day and that if it wasn't working, he wasn't doing it right. And I'm saying:

1.That he doesn't have to do this
2.If he finds TRT isn't working for him - or in fact aggravating his tinnitus - then he should stop.
3. The actual research evidence for TRT is minimal.
4. There are plenty of other ways of habituating to tinnitus.

 

lol...I'm chucking here @david c please carry on....I think I like the : all wisdom on tinnitus comment the best. Nice touch, although I don't see myself as that

 

You've yet to understand irony.

People like Lazarus - who are being dogmatically told by you they have to follow the Jasterboff method to treat their tinnitus - probably find it less amusing. Fortunately there are alternative voices on here to counter the Leigh "wisdom".