Life Stories

I’m 4 weeks in with tinnitus. For the past 10 days or so I’ve been telling some friends and family that I’ve got tinnitus to see if they’ve had any experience with it. I’ve been surprised at how common it is. This is what I’ve learnt -

My Aunty had it for 3 years after an horrific car accident in which she went through the windscreen of her van and had a bad head injury, hers faded and faded and one morning she woke up and it was gone.

My friend's husband had it for 3 months after a very loud Muse concert. He had an extreme reaction to it and broke down. After 3 months it began to fade, at some point it became very quiet until one morning he woke up and it had gone completely.

One of my best friends has had it since childhood! I never even knew! Hers was the result of repeated ear infections. She has completed habituated - she could “hear” it as I was talking to her about it then she immediately zoned back out of it again. It doesn’t bother her at all.

Two friends have it intermittently for weeks at a time, either brought on by stress or by sinus problems. Theirs goes away to silence but can be very loud at times.

Two of my parents friends have it - one from recent hearing loss related to an ear operation - he has not habituated and it bothers him a lot. The other has had it for 15 years. She rated it as 10/10 bothersome when she first got it now she rates it at about 3/10. She still uses masking to sleep.

A husband and wife who are both friends of mine have it. Hers is from Meniere's and his from using noisy tools whilst working on a building site. She had CBT and has habituated after a number of years. He habituated by himself. She asked him on the phone how his tinnitus was when I was there. He actually said “hang on, yep, it’s still there but only if I purposely think of it”

One friend had it from a Jose Gonzalez concert, 18 months of hell now it has faded to 2/10 and she sleeps without masking for the last 6 months.

One friend has it but didn’t realise it had a name! Hers is a low rumble which she hears in her house mostly in the evenings and when going to sleep. It doesn’t bother her at all and she just puts the telly on or radio to go to sleep. She’s pretty much unaware if it when busy during the day unless she actively listens to it.

So, they’re not all success stories but a mixed bag of people still struggling, not coping at first then finding relief, habituating or it disappearing altogether.

Anyway, the fact so many people I know have had it or do have it and are living with it is giving me hope and keeping me positive! The more people I speak to who say they’ve experience it, the less I feel alone !

I wish us all a good outcome

 

Thats a looot of Tinnitus i find it always interesting how as soon as you talk about it everyone knows someone with it.

When i went to my GP the first time for my T he said “eh i have it now for 20 years“.

 

I’ve been AMAZED how many people I know have/have had it!

 

I think a lot of people don‘t talk about it, i mean after 2 months now i told it to two people and one of them is my girlfriend.

 

I tend to tell everyone everything ! People have been asking if I’ve enjoyed my recent holiday and my response has been “Not really because I’ve had tinnitus which has driven me mad.” It’s opened up a lot of conversations about it!

 

How is your tinnitus 2 months in @Deamon22?

 

Could be, i just don‘t feel like talking to others about it. Maybe because i don‘t want to talk like it will be permanent.

Eh i would say strange, i have mild T in the right ear (whistling like a tea kettle is my main tone) which if i don‘t plug my ears i hear just at night or in the morning after waking up. But it fluctuates a lot, during the day i often have periods of silence, sometimes it‘s very low the whole day then sometimes it gets louder.

Sometimes i also hear some beeping in the left ear which i can modulate and silence for a brief moment by turning my neck.

So yeah, i would say it‘s inconclusive. I haven’t found a pattern yet.

 

Getting better overall?

 

Thank you for sharing! After I initially got it I found out SOOOO many people in my family that have it I was amazed at how many people I know have it but never complained about it

 

Can‘t really say since it fluctuates so much.

I had at the end of July 4/5 days of near total silence, but after that it came back again. Since then thank god it stayed more or less the same, somedays better than my usual baseline.

The only thing thats has gotten better the last weeks was that it never got louder than baseline. I hear either baseline or lower so i take that as a good sign

 

@Shelly75 how are you doing?

 

Sounds very promising. A friend I’ve been out with tonight is one of the two who gets it intermittently. I asked her how she knows when hers is going to start going. She said it reduces down in volume from really loud to much quieter and the pitch of it drops from a high pitched screech to more a hiss. The whole thing can take weeks and she notices it as an overall drop from week to week rather than from day to day. She said her kids screaming or the hairdryer can spike it back up for hours at a time in between, also anything stressful.

 

Mine is a mixed bag! Very loud and intrusive the first few weeks with the odd day where it seemed to back off a bit or I just seemed to cope better. I’ve also had the odd time where it’s been very quiet or I’ve even thought it’s been silent first thing in the morning.
Generally I think it’s either getting quieter or im getting more used to it. I can sleep without masking it now. Evenings and night time seem much quieter. I weirdly find it easier to cope with in quiet places. Louder places seem to turn the volume of my T up rather than mask it. Today it’s been a hiss rather than a screech but now I’ve written that it will probably be fog horn-loud tomorrow! If I have 2 beers I can barely hear it unless I plug my ears. The anxiety is lessening but it can still overwhelm me on days

 

Well thats sounds great to me hope you‘re seeing more improvement soon, let me know

 

I hope things are getting better! You have one bad day though and it feels like back to square one! Trying to be positive and hoping for the best. Good luck with yours too

 

@Deamon22 one other thing - the first 3 weeks it stressed me out so much I completely lost my appetite and lost over half a stone in weight. I could eat a thing. I’ve never lost my appetite in my life, I love my food! This week my appetite is back so I’m guessing the anxiety has dropped off!

 

Couldn’t eat a thing

 

@Shelly75
I'm just the same on the appetite front! I'm 3 weeks in I lost near half a stone but just started eating a few normal meals lol. I was so happy when I first felt hungry. Also my sleep had been horrendous like waking up every 30 minutes. Last night only woke up 3 or 4 times and managed to drop straight off again. I found masking noise at night just makes mine worse.

Good luck with your ongoing recovery

 

@Jonstorm - Hi
Sorry to hear you’ve been struggling too. My sleep has got much better over the last week, I’m not needing to mask it now, I don’t know if that means it’s quieter or I’m getting more used to it. The white noise and app sounds can almost be more annoying sometimes can’t they?
What’s keeping me hopeful is that every single person I’ve spoken to has said it’s got better for them since the initial onset, whether that means it’s gone, got quieter or they just got better at coping. Mines back as a screech at the moment but at some point it should drop back down to a hiss which seems more. What caused yours do you know?

 

#more tolerable

 

@Shelly75
Mine varies too but agreed has been more tolerable lately on average with ups and downs. I feel a massive part of perceived volume is mental state/ stress/ tiredness etc.
I'm not sure what caused mine but it came on shortly after dental work. I was also a bit stressed/ anxious before onset. I feel so much of tinnitus is wrapped up in our mental health. I tend to think of people like ozzy Osbourne who has bad tinnitus ( as you would imagine)he mentioned it doesn't phase him at all lol.
I think my tmj may be part of mine as I can push my jaw about making mine worse and this also fits with my dental work.
I think whatever the cause the treatment is still to focus on our mental health and reaction to the sound because if it doesn't go away that's the only approach that makes sense. If it goes away completely naturally that's a bonus but probably shouldn't be expected.
I find T just jumps above masking sounds and my brain then just listens to 2 different noises which just gets me confused lol. When I wake up to my masking noise it just sounds like fuzz like my brain can't interpret it unless I switch it off and on again.. very strange

 

Tinnitus is not a mental health issue. Not everyone that struggles with tinnitus has anxiety issues. Loudness matters immensely.

 

@Autumnly yes you have stated this on other threads. Clearly loudness is a factor but if 1 person has loud T and is very distressed and another person with similar T isn't bothered by it then mental health is a large part of it. This is how TRT etc work. They focus on mental health primarily and the evidence is this helps people gets better and improves the 'perceived' loudness. I feel like you have a particular bugbear on this issue but numerous people have success stories where the principal reason they felt better was taming their anxious response to the sound.

 

If one person can work despite being in severe chronic pain and another person can not is that also due to mental health? There's so much more than loudness when it comes to tinnitus. Is it stable or does it spike easily? Does the person also have hyperacusis? Have they had permanent spikes before?

You have had tinnitus for a month, you have absolutely no idea what it's like to live with severe tinnitus for years. Perceived loudness doesn't change for everyone. Almost two million Americans alone suffer from severe tinnitus that interferes with daily activities.

Seeing yet another GP saying that coping with tinnitus comes down to stress and mental health is frustrating and insulting yet not surprising.

I have lost my life to this condition like many other people. You have no idea how severe tinnitus (and hyperacusis) can be. So yes, I'm going to call out people like you who don't understand that tinnitus is not a mental health issue.

The idea that chronic conditions only bother mentally ill people is toxic, wrong and insulting.

Most people also don't have severe tinnitus. Learning to live with mild or severe chronic pain is a huge difference, same goes for tinnitus. Controlling your emotional response to severe tinnitus can only help so much, not comparable to getting used to mild tinnitus.

 

You are taking this completely the wrong way. I'm not saying that it's ONLY a mental health issue. Just that it is an aspect of it as far as COPING. I'm not just a GP I'm also a patient and I do not come to this forum in a professional context.
As far as chronic pain goes a massive component of managing this is psychological therapy and support and I know many patients that have benefited from this support. There is a huge amount of evidence in the literature to support this also.
You had no reason to get involved here I'm not sure what your motive for hijacking this thread is..

 

I don't care if I lack mental toughness, It doesn't matter if one person can tolerate tinnitus, hyperacusis, hearing loss and vestibular issues and another can't. What matters is that there are medical breakthroughs to help people. Not this habituation Pawel Jastreboff crap that has been holding research back for the better part of 30 years.

 

When it comes to chronic pain (which I deal with as well) emotional support is important but it won’t necessarily allow people to live normal lives again. If I’m bedridden due to my pain emotional support and knowing that better days will come help me to simply get through the day but won’t allow me to be able to leave my bed. I can cope well with my chronic pain as it's rarely on a severe level, my tinnitus, however, is far more debilitating in my case.

The same applies to tinnitus, a strong mindset or however you want to call it can only help so much in severe cases. Again, most people are fine but there’s a minority consisting of millions of people who won’t be able to function as well as they used to no matter how much psychotherapy and emotional support they receive. There are millions of people who will only be able to go back to their former lives once medical treatments come out. That's all I'm saying. These 'life stories' the OP posted are the norm which I'm absolutely aware of. But I also know there are people who struggle greatly due to tinnitus and hyperacusis who need more than TRT or CBT.

 

Psychology may or may not help people cope.
It will not repair physical damage, nor will it repair neurological damage.
I do not believe for one minute that it will reduce volume.
As I said, it may help to keep one calmer.
@Autumnly sees it correctly.

 

I can put here some sucess stories i've heard.

- A friend of mine had T for 1 year after a metal concert. It took 1 year to fade.

- Another friend had T for 20 years (yes 20 years) because of diving accident... His T was very loud. T improved when he has changed his way of life, diet etc after 20 years... He doesn't hear anymore the T even in silence except if he's searching for and concentrate to find it (strange but that's what he told me).

 

Autumnly, I spend a lot of time beating myself up asking why I struggle so much with tinnitus when it doesn't bother others. Mine is audible over nearly everything lately but then that's true for so many others who cope fine. But your mention of chronic pain being easier than your tinnitus made me wonder...It was the same for me, I had a constant headache for two whole years, which I think most people would have considered challenging, and it didn't bother me ANYTHING like as much as my tinnitus does. It was much more physically limiting than tinnitus, but somehow, easier to bear. It is always possible that some people are just wired differently, and are more or less sensitive to sound or pain, rather than just being more sensitive or wimpier in general as I've often wondered when beating myself up for not coping better with tinnitus.

Incidentally the headache I had was something called new daily persistent headache and it usually doesn't go away once it strikes. But mind did, which sometimes gives me hope for some people's tinnitus.