Tinnitus is bearable, but my hyperacusis is de... - Tinnitus UK

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Tinnitus is bearable, but my hyperacusis is debilitating - phone calls and online meetings unbearable - and a bit about my journey.

daverussell profile image
21 Replies

Sorry for the possibly longer than necessary post. I just thought I'd share my experiences and coping mechanisms, and certain things I avoid, if I can. I'd like to hear if anyone else who has similar experiences with Hyperacusis and/or how they cope.

So does anyone struggle with phone calls and find online meetings unbearable? In fact, I'm a teacher and I quit teaching during lockdown to avoid having to deliver lessons online (well luckily I was between jobs due to a house move). I'm now teaching in a college.

Hearing loss and tinnitus is a strange "disease". I could never have imagined nor can I accurately describe my day to day experience. Based on my experience with mild-hearing loss, and not being a clinical expert, I think we have to take advice, but with an open mind, and just find what works for us. In other words, we are individual and as it changes our environment and how we respond, as individual as our personality. Sadly there is no definitive answer.

I manage my Tinnitus quite well using Sound Therapy for masking and calm. However, after unsuccessful attempts at medication, I finally found Sertraline in addition to Sound Therapy that works for my anxiety.

During the day, when I'm in the office on my laptop at work, I wear headphones and at night I use a headband speaker. However, I've noticed more recently that I am becoming too reliant on masking, so I make a conscious effort to just listen to my tinnitus.

Hyperacusis is the most debilitating factor for me. Again, when I'm at my desk in the office, I enable the noise-cancelling on my headphones and I wear hearing aids which have 'wave sounds'. Both work equally well to ignore background noise, depending on the environment/background and how loud it is in the office at work. As I previously mentioned I'm a teacher, but I've learnt to tolerate the classroom (well grin and bear it), which as I'm sure you can imagine can get very noisy. Although when trying to think, especially on-the-fly can be exhausting. Having said that I have musician earplugs that I carry on my key fob and I've used them in the classroom, but only a handful of times,

The main problem I have is with poor quality online meetings and making phone calls - I find it repelling and highly frustrating. My Hyperacusis hit the boundaries of misaphonia. Sertraline plays a big part in managing my reactions. I can't use noise-cancelling headphones to deal with the other end.but once or twice. It's only phone calls/online meetings that really get my goat. I have noise cancelling headphones or musician earplugs for my end that work to some extent, depending on background. However, if there is background noise on the other end of the line is poor quality it's enraging.

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21 Replies
Fridays_Child_62 profile image
Fridays_Child_62

How do you experience your hyperacusis? Is it like amplified sound or pain or some other irritation, or all three? I'm not clear exactly how to interpret hyperacusis and I'm not sure whether I have it.

I have gone through periods in which the outside world seems louder than normal - a bit overwhelming but still tolerable, I suppose. I think this tends to correspond to periods when my tinnitus is more erratic, like now. I have interpreted all of this as the brain turning the internal volume up and the electrical noise (tinnitus) with it. Is this mild hyperacusis? I also have an issue in which a muscle in my right ear can be momentarily tensed by certain sounds/frequencies, which need not be loud, and this is sometimes accompanied by stab of pain. Is this classed as hyperacusis or is hyperacusis an issue of the inner ear or brain?

I must admit that I can also find the sound in phone calls a challenge, but due more to the tinny tone than the loudness. I don't do online meetings nowadays and never want to again. I can also find the announcements over the Tannoy systems on trains and at railway stations uncomfortably loud and piercing, while they don't seem to bother other people.

Regarding sleep and tinnitus, I find that distracting the mind with thoughts (but not worries) can help push the tinnitus away. This might be a simple mental exercise - not exactly counting sheep, but something similar like counting backwards from a hundred. If you're going to listen to your tinnitus, I think the best thing to do is 'ride it' - go with its flow and let it take you along (a bit like how the noise of a train or aircraft engine gives the impression that you're going somewhere and making progress).

daverussell profile image
daverussell in reply toFridays_Child_62

I get irritation and amplified sound. The latter of which makes it difficult to explain to those that don't know, as it's due to hearing loss (which is almost an oxymoron).

The irritation can range from phonophobia and misophonia (anxiety or just intolerance). The Sertraline helps with anxiety. I know the trick is to not avoid situations and in situations where I don't need to think about anything taxing, it ok, but I struggle to hear during conversations and instructions. The classroom is typical, if I'm taking a register for example. Especially as the students face away from me, as it a computer room with machines around the outside. It's difficult to hear, or I hear something, maybe students just chatting, that sounds like someone answering there name. I head count and verify names again and again.

I have a classroom (that I just teach in on a Thursday) which is next to the rest room. The hand drier must be on the other side of the wall. I could ask to be moved rooms and they will (my line manager is ace), but as I said I know I should not avoid situations.

When listening to my Tinnitus in quite situations, I find most of the time, after several minutes my mind no longer focus' on it. Though if not I resort to my. headphones. In my head, I try to say to myself, "it's just noise." I like your term "ride it".

Respect to you daverussell but please put your health first. There is enormous pressure in teaching to put a brave face on things and appear to be coping. It is an extremely difficult environment that you are operating in, with hearing loss and tinnitus that's for sure. I have a quieter life now. Yes I find certain noises and tones of voice very difficult and grating, sore on the ears. Piercing is a good word to describe it, as Fridays_Child_62 says.

Like you, background noise is a huge problem and I can't tell the direction of sound. I have moderate-severe sensorineural hearing loss and struggle to make out consonants, especially soft ones. I can hear low-toned vowels better. Chronic stress, listening fatigue, headaches, brain fog - these were all the added things I experienced. All the best.

daverussell profile image
daverussell in reply to

I forgot to say love and respect. You've given me so many things to think about.Actually, I forgot to say I'm a part time teacher and I've turned down a full time offers (increasing my hours) due to my anxiety and fear of taking on too much. Though I've said from September I will need to do something financially. In fact my one day teaching HNC is a relief, apart from having to sit in the busy office at this site where I teach on that day. I'm also waiting for a diagnosis of suggested ADHD (at 48 yrs old), as I've always had problems relaxing/sitting still and insomnia, amongst many others. I have a history with the doctors and referrals, so maybe I need to look into getting ill-health claim. I'm too proud for that, but my wife is currently carrying me financially. Dilemmas.

Gloomster profile image
Gloomster

Its very odd how wildly different things can be isnt it . I may not be the best person to comment right know as I am deep in the middle of my own crisis and fighting to keep any sort of balance but I have no experience of hyperacusis at all .

For me its just loud white noise and , at times , an uncontrollable nervous reaction to it. I am trying to get my own plan together but there certainly no magic bullet .The problem I have with sound masking is that it has to be so loud to mask this volume that I fear it will bring on even worse symptoms, ( I am barely getting by now). I`m just talking about myself aren't I .I`m sorry I don't mean to be rude I`ll leave it there for now , do forgive me

daverussell profile image
daverussell in reply toGloomster

One of the symptoms Ive suffered from over the last coupled of years is vertigo. But, for the last 6 months, it only comes on now again. I put it down to anxiety and it's resided (coincidentally or not) since taking Sertraline.

daverussell profile image
daverussell in reply toGloomster

Not rude at all. As per my question, I'm interest to hear about other people's experiences. After all this is what this community is about. I've not contributed as much for a long time due to work load. It's so nice to ask questions and get the love and support that everyone here shares.

Gloomster profile image
Gloomster in reply todaverussell

*Its interesting how things have changed for you over the years . At the moment I keep trying to compare me now with me ten years ago when I hade the last long period of major problems .

I have a feeling my ability to cope is weaker than it was and I wondered if that was just age, I think I may just get more anxious only because I am older .

I mention it because of your vertigo . I loved fairs when I was young but now even the mildest of rides is quite beyond me , I panic uncontrollably when you go down( my children think its hilarious )- I just wonder if thats something that happens as you get older naturally and so maybe not so worrying

The other thing that I find mystifying is the whole concept of hyperacusis . Language is not equipped to convey subjective inner experience ... I would just like to know what kind of thing it is like , for people who have nothing to go on .

I have imagined its the way I feel when a knife scrapes along a plate and your teeth are on edge ....but for all noise ? Sounds terrifying I must say

daverussell profile image
daverussell in reply toGloomster

"Language is not equipped to convey subjective inner experience"So very very true. You've summed it up perfectly, right there.

I like to think of myself as a highly resilient person. My philosophy in the classroom as a teacher, is all about building resilience. It's why I love working in a College, teaching vocational courses. Despite the stress I wouldn't quit just because I don't like the system. I am part of the system and whilst I can't make those core changes, I can make a small difference for the students. Maybe, I can only try my best.

The students I teach haven't necessarily been successful at school; in a system that is not always suited to the learning styles or has shown them the enjoyment of learning. Anyway dont get me started on the countries education system.

The point is 'life is tough' and we have to over come challenges. But, as is evident by you guys replying to this thread, and every day in this forum, there is always a community of support.

Happyrosie profile image
Happyrosie

Dave (and also other posters) Dave rhymes with “brave” and that’s how you all are.

I regard myself as very fortunate compared with you. Whilst my own T can be heard easily above the noise in a car at sixty on the motorway, I have very little, or should I say intermittent, hyperacusis. I habituated very early simply because I thought it was all a part of growing up. Probably starting when I was in mid-teens. I suppose my parents and sister had it. There was a lot more to worry about then, such as exams and maybe a first boyfriend, so the T never became prominent until fairly recently. Deafness came along with age, and certainly the hearing aids help the real world be more prominent than the noises in my head. At the moment I’ve got a cold so the T screams, but it will calm down soon.

As is being said in this post and the replies, there is no one way, or two ways, or three ways, and we each have to find our own. It must be a long journey of trial,and error and I salute you all.

in reply toHappyrosie

Thanks Happyrosie - you too ☺ Lindsay x

daverussell profile image
daverussell

Thank you so much. As you say I need to keep notes but also find further diagnosis about ADHD. As for dizziness I suspected it was linked to Diabetes, but I've reduce that to prediabetes and my doctor ruled that out.

I'm wondering who I should speak to though. My Union? I don't know where to start, other than GP again.

I've joked all my adult life that if I was a school nowadays id probably be diagnosed with ADHD. The more I read and deal with younger adults with ADHD at the college, the more I am convinced.

I asked my GP about ADHD a few weeks ago following an appointment where I suspected COVID but negative tests - run down and memory problems. He put it down to a virus or work load or both, A story I read about ADHD recently spoke about struggling with work load. Anyway I'm now on a waiting list that I understand is about 18 months to 2 years for diagnosis. I just know whatever the outcome I've got to learn to live with it.

in reply todaverussell

Sent you a PM about my retirement process and evidence required in case you decide you need to do this. All the best. x

daverussell profile image
daverussell in reply to

All the best to you too.

Graham-E profile image
Graham-E

Hello and sorry you have this.

When my T started as a result of a virus/infection I woke one morning with my T. I thought there was something wrong in the house for days until I realised it was me. Then I thought I’d gone crazy.

Early on in the process I suffered from hyperacusis as well as my T.

The H lasted for quite sometime and during that time crinkly things like crisp packet and certain foils really hurt. A physical pain that was unbearable. Eventually and I have no idea why my H faded. Crisp packet no longer caused pain and I was hopeful for many years that my T would do the same.

It never did and has always been my biggest problem. My T is incredibly loud and full on invasive. Always there and in my face. It seems to ruin everything I do and is silent to the rest of the world. I live in a constant nightmare and most days, like today, I really consider my options to quit and give up on everything and everyone. I have my exit plan and fight each day to stay for the next day. T and H when I had that are the worst conditions I can think of. I’m constantly in fight or flight mode and it makes me so sad to watch my family struggle with me. The T is not me. Today I was woken, like yesterday, between 3 and 4 am with my T. I’ve also go the wave Bluetooth hearing aids as well as sound machines but nothing readies my for my T.

My working day is complex and I get so tired. The fatigue is always there with listening over the top of such a hideous screaming sound that never stops.

I was told by my first audiologist that it, the noise in my head, will only stop when I do. His English wasn’t the best but he described a life long condition. Somehow I have to get through today, I’m tired already but I’ve been up for 6 hours in a silent house and the scream.

I’m telling you this to share the fact that you are totally correct. It’s a horrible debilitating, unseen nasty condition and the fact you still work is amazing. Don’t be hard on yourself what you are going through is simply a hell on Earth quite literally.

Keep in there and know far too many of us know exactly what you go through and to a point are not alone.

Rest and be kind to yourself.

Best G

daverussell profile image
daverussell in reply toGraham-E

Sorry you're going through this too. Before my tinnitus was noticeable 24/7, I did quit my job as a software developer. I started to get to a point where I couldn't bear the noise in the office, but I did not link this to Hyperacusis. I put this down to stress of sentry work in the office. In fact, I cycled 24 miles a day just to get to work and back, if anything to keep me sane. I now go to the gym to have my releases. I've wondered if this is linked to ADHD, as this was a long before tinnitus, and when I didn't have a problem with noise in a large open an office in the past (I'm awaiting a follow up ADHD appointment).It's so complicated and I question if I'm overthinking it.

Stay strong, stay safe!

bournville profile image
bournville

hi Dave the reply’s seems to have covered a lot so the only thing I’ll add is your difficulty with online meetings & phone calls. I route both through a decent Bluetooth speaker it helps a lot. The harsh sounds from the speaker in the phone or video calls on laptop speakers I avoid like the plague.

daverussell profile image
daverussell in reply tobournville

Thank you so much for your reply. That's very useful and good to know. Not good to know you experience the same as me, but good to know you have a strategy.I find using the speaker phone in my car is generally ok. But, I only use that to speak to phone my wife. If she's in the house or in her car it's fine. If she's out walking the dog than it's a no no.

The problem at work is that I hot desk, so I have to find a quiet office to make phone calls. Then I can only really use the desk phone at the moment. I'm waiting for a Tcoil clip (or whatever it needs) or a mobile. For the mobile, I could use my Bluetooth headphones, but I'm not sure it will help, as background noise is always the challenge, even with noise-cancelling enabled. Quiet offices are rare and an additional stress as I'm trying to find time between lessons to make phone calls or have meetings.

Thanks again for the reply. I appreciate it. Maybe I need to have these conversations with my boss about the pattern and practicalities at work. He already knows the challenges and I've already said I can't just make phone calls, but he's said do it when you can. He's cool about it, only it makes my job harder.

Eleanor1989 profile image
Eleanor1989

hello

I have had tinnitus for nearly 30 years but had habituated, its had its moments….

However following major surgery a month after. The t magnified and the hypercusis followed… my world fell apart.

I am a psychotherapist and still continued to work via phone etc right through covid… it was horrendous at first, I had my phone on lowest volume as voices hurt, cutlery crockery and everything was loud….

17 months in it has improved a lot, however I still have days where my ears can feel strange but I have a tendency to home in on them… if you know what I mean.

Also reading some forums is horrendous and I don’t think this helped at all…

I like you have started to work less hours and this has helped a lot. But I do want to work more eventually….

I hope we all improve soon x

OceanSun profile image
OceanSun

Hi Dave,

I too find the hyperacusis to be debilitating. I experience it as an uncomfortable sensation that *feels* painful but is very difficult to describe as it's not a typical pain. A short, sharp, unexpected sound (like the clanging of pots & pans) will send a painful jolt through me and can leave me unsettled for a few minutes. With prolonged sound at an uncomfortable level (like a loud conversation between people in the same room) I can hear/feel a distortion of the sound - almost like a whoosh/wind - and can't stand it for more than a few seconds before needing to cover my ears or step away. I don't struggle too much with online meetings but sometimes if one person is a lot louder than others then it can be a challenge to manage the volume.

I carry a pair of high-fidelity earplugs with me on my keyring when out and they take the edge off the sound enough to avoid the pain if needed. I don't like wearing them for long periods of time though so I try to manage the situation in other ways if possible before putting them in.

My problems are all believed to relate to chronic migraine as it stands so I just have to hope that it will calm down at some point. I have become quite habituated to the tinnitus after 3 years but the constant photophobia & hyperacusis are very limiting.

I hope things improve for you.

Take care

daverussell profile image
daverussell in reply toOceanSun

Maybe we're Hyperacusis twins. Avoiding ear protection unfortunately is the best for the long term.I've spoken to my doctor this morning as it happens. I need to confirm with the audiologist if mine are programmed to adjust frequencies that I find unbearable.

I have the program for the wave sounds which works but only to switch off, not for interaction.

Likewise, I hope things work out.

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