From darkness into light: From darkness into... - Tinnitus UK

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From darkness into light

13 Replies

From darkness into light

Tinnitus is not an easy condition to live with when it is severe. So it always pleases me to hear when someone habituates and is able to put the passed behind them and look forwards to a brighter future. A forum member contacted me recently to express just that and has agreed for me to include some of his comments although his name has been changed. Anyone having difficulty habituating I hope they will find this post helpful.

Last year Marcus was in a distressed state and convinced he would never see light again at the end of the tunnel. He works as an electrician and while up a ladder one afternoon, suddenly heard a loud ringing coming from a fire alarm that was on a nearby wall. He didn’t pay it much attention and wasn’t concerned about his hearing as he believed it would soon stop. He continued working but this proved not to be a good idea as the alarm continued for another twenty minutes. When it finally stopped and there was complete silence he then noticed ringing in his ears. Over the following days and weeks it gradually became louder and more intrusive.

I remember his out pouring and condemning himself in this forum as if it were yesterday. He couldn’t believe he had done such a thing. Staying in that vicinity with no hearing protection and not coming down off that ladder had resulted in his whole life being turned upside down. With the benefit of hindsight one is often able to see mistakes that could have been easily avoided if they only knew. In his own words life as he once knew it was completely over. Married with two young children he enjoyed regularly going out with the family but all that came to an abrupt end.

I and other forum members tried to make Marcus look at the positive things in his life and not to give up hope but little of this was having any impact. The walls of negativity that he had built up to surround himself were just too great and it seemed no amount of good advice was able to get through.

His symptoms will be familiar to those that have suffered noise trauma to their auditory system. Intrusive tinnitus with hyperacusis, that can vary considerably especially in the early onset of the conditions. I understood his distress at not being able to enjoy listening to music even as a form of distraction from the noise. Everything sounded distorted to him as if it is coming out of a broken speaker and his ears would hurt when certain sounds were heard.

His appointment at ENT was some time away which is often the case when tinnitus is not accompanied by dizziness, balance problems and impaired hearing or continuous pain in the ears.

Contrary to what some believe, the best treatment for tinnitus in the early stages and when there are no additional symptoms, as mentioned above is to leave it alone. The ears and auditory system are very delicate and often right themselves when left alone. Many people habituate to tinnitus within the first six months sometimes a little longer and the condition has been known to go away completely.

Marcus had taken time of work, as he just wasn’t in a good place and couldn’t function properly. One good thing is that he was under the care of his GP and taking medication to help cope with his moods. Tinnitus can be such an emotional roller coaster in the early days so often no two days are the same. An antidepressant often helps a person from becoming too down so acts as a safety net when those low points arrive.

Marcus became a frequent visitor to this forum and I believe it helped him, although his outlook on recovery was quite bleak and negative.

Perhaps knowing there were people around him in this virtual world of cyberspace, gave him the support and sanctuary that he need to vent his frustrations which at times I believe were overwhelming. I hadn’t seen him for quite a while but got an acknowledgement from him recently by private messenger. Please find it below. I have omitted my comments.

It changes a lot over time doesn't it. Not just one’s perception of it but the tone itself.

For me it ranges from a jet engine noise to hum, I used to hear it all the time but now I only hear it in silence.

Just past the 1 year mark for me. Feeling much better now. It sure does take time.

How's things with you? I really appreciate the help and advice you have offered to me over this time and the help from other people in the forum.

It's a terrible condition. I did go too see Guns n Roses last weekend at Slane castle. Used professional ear plugs, was a great show and no negative consequences apart from a crazy two day hangover lol

The fact the concert was outdoors made it possible, it still peeked at over 115db at times.

I still haven’t been seen at ent yet, did bother chasing up the appointment. No point really. I will take your advice and chase up ent and see if I can get an appointment. Just to do the tests.

Yes, I'm much much better now, I was in a very dark place. It was a terrible time. Things have improved, the distortion in music has gone and things sound normal again. I can even setup an eq system hear the different frequencies, when I first suffered this I couldn't hear bass, everything sounded flat, really was a bad time, I'm surprised I survived it to be honest.

I now have a new appreciation for sound and music. I just wish I understood this before. I still have slight balance issues but mostly I am happy my hearing has improved, It is very difficult too accept when it happens as I am sure you know.

I will always use hearing protection at loud events, concerts etc. The guns n roses concert felt fine with my pro plugs in and I noticed many others using plugs too. Good to see.

I’m back at work and able to spend time with my family. Thanks Michael for your advice (even at those times when I didn't believe it)

Marcus

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13 Replies
Angela-H profile image
Angela-H

Thanks Michael. Indeed I was in that very dark place 2 years ago. With the support of the BTA forum and website I have come through and have habituated, well, 90 percent of the time! I would say to distraught newbies, don't ask Mr Google. You will get the best possible advice on this forum and, with the support of other members, I no longer felt alone. Angela xx

in reply to Angela-H

HI Angela

Great to hear you have habituated and are out of the darkness and into the light. It's great feeling. I have habituated twice. The last time took 4 years and hope I never have to return there. Keep the positive vibes flowing and never stop believing even in the down times, as it's the only way forward.

Take care

Michael

Angela-H profile image
Angela-H in reply to

Hi again Michael, after habituation do you still wear maskers? I have a hearing aid for right and a masker forthe left, which I still wear. Will I always need to wear the masker? Ps when I was a newbie 2+ years ago, your posts on the old forum were a lifeline, along with the other old timers! Thank you. Angela xx

in reply to Angela-H

Hi Angela

Thank you for your very kind comments about my posts on the old BTA forum and I'm pleased that you found them helpful. That forum and the good people on it such as yourself, enabled me to gain experience to write my article: Tinnitus, A Personal View.

I visit a number of tinnitus forums now and have written more posts, and hope I will be able to continue helping people. It is comments such as yours that give me the inspiration to carry on. It hasn't been all plain sailing though, as there's always someone that doesn't see things the same as you and wants to challenge it, and I understand because that's life.

Regarding maskers/white noise generators and habituation. My advice is to do whatever pleases you and I'll give you an example. My tinnitus was completely silent yesterday and I still wore my white noise generators for part of the day as I've got used to using sound enrichment. Today, it is quite loud and intrusive and as I type I am wearing them.

Once a person habituates to tinnitus, they are able to whatever feels comfortable to them regarding using maskers / white noise generators. I still advise that a person shouldn't sleep in a quiet room, but again it is up to the individual and whatever pleases them once they habituate.

Hope this helps.

Michael

PS: When was the last time you had a hearing test? If you haven't had one within the 2 years, I would ask my GP for a referral to ENT for a hearing test. I mention this because you have some hearing loss in one ear.

Angela-H profile image
Angela-H in reply to

Thank you Michael. I wear my masker 90pc of my waking hours. I have low level sounds around me whenever possible and always have rainfall on my sound oasis at bedtime. Thanks for your thoughts on wearing maskers, and yes I had another hearing test in February, 2 years after T onset. My hearing was the same. Fortunately we have a good audiology department at the local NHS hospital. Angela cx

Hi Michael as you know i have been in the darkness and had some bad days but i have come through it with your help and from the forums my life is back to near normal and always happy to help others going through a bad time. David

Angela-H profile image
Angela-H in reply to

Nice to hear that David. Angela xx

Xene profile image
Xene

Yay David, I haven't seen you on here for a while. I'm so happy that life is nearly back to normal for you, onwards and upwards!

Xene

GDJTAM profile image
GDJTAM

After another terrible nights sleep and another depressing day ahead, it was great to read Michael's post that a fellow sufferer has come through this intolerable imposter in our head.

Like many newbie sufferers, I am desperate to find treatment to help me cope but my T inexperience coping measures are continually being questioned by myself.

During the day I do my postman duties and listen to music, when i get home i listen to binaural sounds off YouTube. It plays high pitched noises against a wooshing background.

When I watch tv, i have white noise in the background and when in bed i have white noise playing all night.

Am I going the right way to habituate?

I would love to have habituate program knowing I am going in the right direction.

It's very difficult to accept this T, I am now on anti depressants but mentally the inexperience of me not knowing what path to take is crippling me.

However, stories like above give us all hope so thank you for sharing this. There is light and hopefully one day we will all see it too.

Hi GDJTAM ,

Thank you for your kind comments. Marcus, was one of the most negative people that I have known with tinnitus and I've known a lot of people over the 21 years that I've had this condition. It has been a delight to see him come through to the other side. I was in conversation with him yesterday, via messenger on another forum. We were discussing the post as it was the first time he had read it.

He is now positive and enjoying being back at work and is looking forward to going on holiday with his family very soon.

Habituation is affected by many things and the path to it or process, is unique to each person because no two people experience tinnitus the same. However, the end result is usually the same for each person, in that one has to fully accept tinnitus in order to habituate to it and this takes time and in some cases, treatment may be necessary with a Hearing Therapist or Audiologist trained in the management and treatment of tinnitus.

I don't know what has caused your tinnitus but if it was exposure to loud noise, then I advise you not to listen to music through headphones even at low volume, as there's a risk of making the condition worse. Some people with noise induced tinnitus are not affected by headphone use. I have corresponded with many people whose tinnitus has been made worse using them. The choice is for the individual. My advice on not to use headphones only applies to people whose tinnitus was caused by noise exposure.

I have written an article on tinnitus titled: Tinnitus, A Personal View. It covers treatments and coping methods for tinnitus. If you would like a copy then please send me your email address by Private Messenger, please don't post it in the forum.

All the best

Michael

Ruud1boy profile image
Ruud1boy in reply to

I know you're quite keen Michael on noise induced T folks not listening to music etc on headphones - I wonder if you could expand on your thoughts on this issue?

I work in a call centre, taking calls via a binaural headset all day. Of all the audiologists / healthcare professionals I've spoken to about my T, only one has raised any concerns about my job role - he thought it was a 'less than ideal job' for someone in my situation - but even then he accepted pretty readily that I have to work. I've had Access to Work out to see me about the difficulties caused by the T in relation to my job - the ATW advisor was a fellow T sufferer, so had some insight into the problem - and he effectively dismissed these concerns. He said he's made equipment recommendations to lots of T sufferers in call centres. Also, another thought's just occurred to me, I seem to remember Don McFerran saying something about he doesn't think T need be a bar to any job, providing the right support is in place.

With all that in mind, I am still concerned that continuing in my current job could potentially either be causing more damage to my hearing or exacerbating the T. What do you think?

Hi Ruud1boy,

In my article: Tinnitus, A Personal View that I emailed to you. There is a document in it titled: Headphones and Tinnitus. Please refer to that as it explains my views on tinnitus and headphone use. My opinions are based on when the tinnitus was caused by exposure to loud noise.

I have corresponded with people at other tinnitus forums that work in call centres. Some have reported that wearing a headset makes their tinnitus worse others have said they’ve noticed no adverse effects. If your tinnitus hasn’t been made worse using a headset then continue using it.

Some health professionals that work in ENT say that listening to audio through headphones is fine as long as the volume is kept low. With all due respect to them I say this: They know about the anatomy of the ear and are able to treat it medically and surgically. However, very few of them know anything about tinnitus unless they have the condition. It must be said though, that some ENT doctors hold the same opinion as me, that headphones/ headsets shouldn’t be worn especially if the tinnitus was caused by noise exposure.

My ENT consultant is an Audiovestibular Physician. It is someone that I have a lot of respect for and known for many years. We have a very good rapport. We were talking casually one day and out of the blue she said: “Mr Leigh, you know more about tinnitus than me because I have never experienced it”. I was taken aback by this statement. This is one of the reasons for my comments above, when referring to ENT doctors. I have a lot of respect for their knowledge, skill and expertise so it’s not my intention to undermine them.

Michael

Lindsay6 profile image
Lindsay6

Thanks as always. Today the hiss and ear pain have reached an intensity I have only known before from severe migraines ( I used to be out for the count for 6 days at a time). For the first time in 4 and half years with it , and delete Adès of life's challenges, I have felt I can not bear the pain any more. What to do ? I could hear people properly , couldn't settle on anything , tried a walk then a lie in the clover at a local country park. I appreciate well meaning g people who say you have to keep busy , but how when it's so all consuming. Can't even right g the Samaritans because it needs ears and hearing. Last week's MRI scan was excruciating and ENT consultant said my hearing is fine - interesting how he knows as i havebt had a teast for over 4 years. I hope a nights sleep will ease it . Sorry to go on , but this tough cookie has run out of ways of coping with the pain 😡. I

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