We all experience tinnitus differently. In this episode we speak with Steve and Sean about their personal experiences. They share their darkest moments and how they moved beyond them, providing valuable tips and tricks. How do you deal, for instance, with a lack of understanding from others?
We also discuss the concept of habituation as a scale, rather than an end point, and how it’s harder for some people than others. Is there any point in seeking medical help? And how should we value new treatments? We discuss the importance of finding what works for YOU, which might not be the same as what works for someone else.
This open and honest discussion is the first of more personal stories to follow!
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Skip to: 00:18 Introducing our guests.
Skip to: 05:38 What do we mean with “tinnitus severity”?
Skip to: 12:53 Struggling, and learning to live with tinnitus.
I thought about it in small victories, where it’s like: Oh, I watched a 30-minute show and I didn’t think about it once, and then from there, it increases in time to a couple of hours.
Skip to: 24:09 When others can’t comprehend your experience.
Skip to: 29:41 Tinnitus “cure” scams.
Skip to: 33:40 Seeking medical help.
There was a GP who asked me: Are you sure you have tinnitus? Which felt like questioning my sanity or something.
Skip to: 44:46 Tips and tricks for coping with tinnitus.
Skip to: 56:57 Hearing protection vs. overprotection.
Skip to: 61:18 More on habituation.
Skip to: 69:37 What works for me may not work for you…
There are people who will say that ‘this works’ […] but there is not one thing on the face of this planet that works for everybody. It works for some, doesn’t work for others.
Skip to: 73:26 Developments in tinnitus research.
Skip to: 83:02 Sound therapy: Tinnitus Works and TinnitusPlay.
Skip to: 90:02 Raising awareness for tinnitus.
And this is the struggle you have. You show—imagine you get an advert on prime time, you show somebody, you show the tinnitus, you show what happens; your next video is a child in a war-torn country, and then after that you’ve got a donkey. A person with tinnitus is long forgotten…
Discuss on Tinnitus Talk Forum
Well I was in the music business 12 years. My fault I didn’t plug up until it was too late. I remember where I was. The band that were on turned the sound right up.
I remember thinking, hold on something’s a bit odd. I went outside, yep ringing in my ears but I thought ok, a bit loud tonight so I went back in and watched the band.
When I got home, I was thinking ok, I can still hear the tinnitus. I knew it had been a loud band.
Next day it was still there. I’m like fu*k, it’s still here. Ok, it was a really loud band, no worries, it will go away.
Next day I’m like hmmmm ok, it’ll be gone tomorrow.
Rinse and repeat for a while more.
I then went to the doctor and they found nothing wrong, but told me that I have tinnitus.
I habituated years ago but obviously it still annoys me and I hope for a cure.
I also have hyperacusis, I cover my ears when there’s sirens etc.
When you first get tinnitus, it can funk your emotions, it’s a scary thing to realize that there’s no cure.
I believe tinnitus is in the brain; not in the cochlea.
Good luck to everyone. Peace. Love you all.
Thanks, Barry! Good luck to you too 🙂
Well done! Being able to ignore tinnitus for 30 minutes is inspiring to newbies and also so true.
Funny how we pronounce the word differently. I’m American and say tin i tus.
All three of you were awesome!
Thanks for the kind words, Mitch! Always nice to get positive feedback 🙂
For me, dealing with tinnitus is best accomplished by not thinking or talking about it. Ironically, that means avoiding tinnitus forums. Try it. See what happens.
Hi Amy, I’ve heard this from some people, whereas others feel they need to engage with peers to get better. I would definitely advise people to moderate their own online engagement to make sure it’s healthy.
I first had tinnitus in June/July 2021 after an ear discharge. It was strangely not long after I had my second COVID-19 jab. In the first few weeks, I started to feel suicidal. But with time I got some relief where it appeared to regress at unpredictable times. Keeping busy was clearly important, but hey you cannot keep busy all the time we are not ants. My habituation started after several weeks. I have seen a consultant who is offering to repair my perforated eardrum – with the hope it might help my tinnitus, something – I have had for most of my life. My other ear is shot because of a mastoid when 5-6 years of age.
I now live in hope that an ear repair will help further, but I believe there is a small risk it could make things worse!
Hi Colin, I hope things will work out well for you. It’s encouraging that you’ve started to habituate!
Happy you talked about people like myself who have Severe Tinnitus both in noise level and intensity (5.5 years). Thanks.
Thanks for the feedback, Gene! Indeed, we feel this group too often gets ignored…
I have had ringing in my ears since Spring 2001… I went to UM to have a brain scan the Saturday after 9/11. I keep the TV in bedroom on in order to fall asleep.
I have gotten used to the situation, more or less!
Glad to hear you’re managing relatively well, thanks for sharing your experience, Barbara!
Just amazing to hear you three speak so candidly and openly about your experiences. THE BEST thing I have heard regarding tinnitus since mine started (5 years ago).
Thanks so very much.
Brad
Oh wow, that’s possibly the nicest feedback we’ve gotten – thanks so much for your kind words, Brad!
It seems there is a need for this kind of content, so we’ll try to put out more episodes like this 🙂
Really enjoyed this episode. 5 years in, what a journey. I also use alcohol as a crutch.
As a sufferer of some 7 years now, and knowing exactly when it started, I deal with it as classifying it as my friend now, else in the beginning it would have driven me mad. I don’t think I’d have been able to move forward.
When stressed it’s louder. It’s only on my right hand side. My hearing has slightly diminished. I only hear it when it’s quiet to be honest. I liken mine to a radio being tuned, high frequency.
This has been my favourite recording so far. It has been so lovely to hear all three of you talking about your experiences with tinnitus especially from someone that has had it from such a young age!
As much as I wish none of us suffered from tinnitus, it has also given me a lot of relief knowing that there are people out there experiencing a lot of the exact same things as me! Thank you so much for sharing.
Thanks for the positive feedback, Sarah! That’s very encouraging to hear, and we’ll definitely strive to put out more episodes like this 🙂
Glad to hear you’re doing better these days, Louise 🙂
I am hearing people who relate to what I went through when I just woke up one day with tinnitus. I don’t know what triggered it. It came on about a month after my mom passed away and my father passing 3 months before her.
You spoke about the distress factor and can’t explain it. That is exactly how I was. It was a terrible time for me.
I went to see Dr. Jastreboff in Maryland He came highly recommended. He did not help me.
Thanks for sharing your experience, Roxanne. I can totally relate to what you’re saying. I hope you’re feeling somewhat better these days.
By the way, we often hear that people’s tinnitus, like yours, starts after a stressful life event. While that may not be the cause exactly, it does often seem to be a contributing factor…
You are very lucky Louise. What would you say if you would have to live in the jet engine? Many people do. ?
I’ve had tinnitus now for about 12 months. What really makes it worse I have had constant vertigo with it. It’s really Distressing at times. I don’t know if the dizziness is connected.
Does anyone else have vertigo along with tinnitus?
Hi Debbie,
When I first started having tinnitus, I was often asked if I was having vertigo by audiologist, GP, ENT, etc.
While vertigo is not part of the tinnitus package I got, I still learned that it could be associated with Meniere’s disease, which is, from what I gathered left and right, at least treatable.
I recommend to discuss this further with your GP, ENT if you haven’t already have.
Hope this helps!
I have no faith whatsoever in ENT specialists. All they have ever done for myself is take my money, leaving me no better off. I have tinnitus and at one time suffered vertigo as well in combination. The vertigo left on its own accord but the tinnitus won’t leave.
Dennis
Hi Debbie,
L-P Bel makes a good point, and I would definitely ask an ENT about this. The two problems may or may not be connected, but there’s a chance that there’s an underlying condition that could be treated. It’s certainly worth getting it checked out.
Wishing you all the best!
I’ve been a tinnitus sufferer for about 5 years, combined with hyperacusis which I had to start with, and then realising moderate hearing loss – besides this complex ear/brain affliction, the hearing loss to me is most disabling when trying to socialise, even talking on the telephone is uncomfortable – in my case the recommended relief systems for one dysfunction defeats the other two mechanism – my tinnitus also takes on the form of 3 different sound pitches – one being a shushing in the left ear and pulsating droning in my head – TV has to be watched with subtitles as most speech is muffled with an incomprehensible burring, and music is just a tuneless noisy burr – so no comfort however tranquil the music – but maybe due to hyperacusis distortion I suspect – I use ear plugs for the loud outside environmental noises – but being absorbed in reading or while focused on an interest or hobby is my saviour and relief – especially so when I’m alone at home in my own world and in control of the surrounding environment.
Difficult for friends to understand the concept as has been said, as I suppose I appear alright on the surface and in good health otherwise – fit enough to go to the gym but have to stay clear from social interaction as I use to enjoy, but now often avoid even casual conservation if I can and feel embarrassment of having to ask them repeat themselves, which I suppose should overcome – thank goodness for email communication and the internet nowadays.
NHS hearing aids only enhance the problem with even louder distortion so getting people to understand this contradiction, even though I’ve explained over and over again the complexities of faulty hearing mechanisms – but yet still can’t grasp the concept, and come back with same lack of understanding – if I had a broken arm there would no problem of my needs to them.
This is the first time I have explained my disability over the internet to a hopefully a listener, and was impressed with the mention of the difficulty getting friends and family to even empathise, some do of course, adapting their voice control for my hyperacusis, with the contradictory hearing loss, which requires clarity of speech, and not to shout – difficult to translate, but simple really, isn’t it?… even the doctor was sarcastic to me and I had to say, unless you suffered from tinnitus, severity would not be realised -however resilient one tried to be.
On that note, hope you are still awake after my in depth explanation, but I’ve not written before, so hope I haven’t bored you or made things worse for you,
But thank you very much for your time.
Janet.
Hi Janet, thank you very much for taking the time to share your experiences! It can be very daunting and difficult to open up. I hope you will find a way of making clear to friends and family what you’re going through. And hopefully you can take some solace in knowing that you are not alone.
I’m glad to hear the podcast resonated with you.
Feel free to get in touch again – you can find us on the Tinnitus Talk forum (www.tinnitustalk.com). All the best!
I was in the music recording business for 40 years and had low level tinnitus for about the last 20, but in 2008 the noise increased dramatically – especially in my left ear. A high frequency hissing sound, like cicadas. It does come and go, fortunately. I do have good days when it goes back to pre 2008 levels. It seems to stay either at high or low level for the whole day and switches while I’m asleep. When I wake in the morning I’ll know right away if it’s going to be a good or bad day. Or, if I happen to doze off in front of the tv on a good day – even for a few seconds – the noise will kick in. So strange. I have to have earbuds in at night, listening to a story or something, in order to fall asleep. Also we have a loud fan in the bedroom – fortunately my wife is okay with that!
Of all the responses nobody has mentioned 24 hour musical tinnitus – does anyone else experience this? I have Pavarotti singing -beautifully – in my head 24 hours and I have now accepted him as a long lost wonderful friend. Yes it has impacted my life for 4 years along with hearing loss and a sense of speech impairment; and am tired of dismissive approaches of medical/audiologist responses so now accept it as one of life’s rich/ragged tapestries.
My best wishes to everyone.
Jemima
Doctors and ENT specialists don’t know what can cause tinnitus. They can only guess. They constantly refer to loud noise. I knew of a person who took antibiotics and swears that caused their tinnitus. Another friend came home from the doctor’s, took three blood pressure tablets and after 5 minutes asked his wife what was the noise?
I worked near jet engines, I constantly typed and I had an Industrial Deafness Test. The next day after the Industrial Deafness Test I awoke with the most excruciating ringing. This was 14 years ago and I still have the tinnitus. I don’t know which or how I got it. I can only speculate. I had to stop work and go on welfare payments. I sometimes tell people that I have tinnitus and they say, ‘Oh I have that as well, it’s nothing’.
I then say to them, ‘do you want to end your life? They invariably say, ‘no.’ That’s when I tell them that they don’t have tinnitus but only a little bit of noise. They are many recorded deaths of people who have terrible tinnitus and cannot continue.
I often hear professionals say, ‘learn to live with it’. To me, that is an insult. That’s when I get up and walk out. I have this wretched noise 24/7/365.
You don’t value SILENCE until you LOSE it.
People often say that it sounds like cicadas. When you hear cicadas, it sounds different. Have you had someone drop something close to your ear and it starts to ring and then the noise dissipates? Well my tinnitus is that same noise. However, the noise continues and does not dissipate. To my mind, the mechanism in a healthy ear that makes the ringing stop is not working in people who have tinnitus.
So, just let me go back one step. Remember when I said that my work necessitated constant typing. Well, I noticed after reading a comment from a contributor that she had the same symptoms as I have. She wrote that whenever she opens he mouth as if in a yawning motion, the pitch of her tinnitus increase. So does mine. By that she means lowering her bottom jaw. She further wrote, that if she turned her head left or right, the pitch again increased. So does mine. If she touched certain places on her face, then the pitch of her tinnitus increased. Again, so does mine. She then wrote – IT’S CALLED SOMATIC TINNITUS. So if you experience these symptoms, then you may have SOMATIC TINNITUS. Doctors and even ENT specialists don’t know of it. Apparently, through neck and head exercises somatic tinnitus can be cured. I have gone to see two experts in this field but have had no change. Does anyone out there now of someone who can help with SOMATIC TINNITUS? Please respond.
Dennis
I have good days and bad days. Spending time on the beach makes me relax.