Just a few questions below if any of you feel like answering them? Some of these may resonate with you?? Only I’m just trying to get some more answers on some other long standing “iffy” areas of this tinnitus madness, that quite frankly I don’t think some of the everyday “experts” (like GP’s, Audiologists, and even some ENT Consultants) have got a proper understanding of!? Well i know I’ve met a few so called “qualified” who talk utter bs about it or else can even give you a “bum steer / wrong advice”!!
Anyway see questions below …
1. I just wondered what you thought about the sound level volume of tinnitus? So, do you believe it has physically got louder? Or do you think it could be just the perception that it’s got louder (and that it stays at the same frequency all of the time)? Or maybe you think it could be a combination of both?
2. Do any of you who suffer with tinnitus and perhaps Hyoeracusis too - ever suffered with depression when you were younger or else before you started with tinnitus?
3. Do any of you have (or maybe you’ve had it all the time) - OCD (Obsessive Cumpulsive Disorder)? Maybe you had it as a child / when you were younger? And if so, how did your OCD manifest itself? Was it; Repetitive routines? Repetitive or/and intrusive thoughts? etc? Which in itself may all have caused depression and anxiety for you too?
4. Did any of you receive a hit (bang) to the head perhaps on more than one occasion in the past? Maybe when you were a child you fell somewhere?? And as a result of one of or all falls have you ever been concussed from it or suffered temporary amnesia as a result?
5. Did any of you recall hearing tinnitus as a child? Perhaps you were lying there in bed one morning and all of a sudden you tuned into tinnitus and it sounded like it does now? But within another few seconds it just fell away and everything returned back to normal again?
6. Does anyone who has Tinnitus (and Hyperacusis too?) quite bad - once had it not so bad where it was more tolerable? And do you think more exposure since to general ‘out there noise’ has worsened it all? And do you worry what if it keeps getting worse - how will I cope? Especially hearing about horror stories where some are completely housebound or bedbound as they can no longer tolerate even acceptable noises and their Tinnitus has gone through the roof!? And so what do you do then?
7. Do you believe that it’s nonsense and does it annoy you when some people say; it’s depression, anxiety and worry and nervousness that adds more to tinnitus? And do you feel that instead it’s the tinnitus (and hyperacusis, if have that too) that’s causing the anxiety, depression and worry? And that it’s not you reacting when you’ve heard a loud noise and the tinnitus goes up but it’s the tinnitus itself? And do you feel equally frustrated explaining all this but some still won’t have it??
Thanks for your time, and you never know this survey and your answers might help one day in helping to develop an “actual” treatment / cure for Tinntius et al.
Written by
MAC0811
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1) Because tinnitus is relative to each person, it's difficult to say as an individual sufferer. But from what I've read, it definitely seems to increase as we get older and as hearing gets worse.
2) I deffo became aware of tinnitus when I was a teenager, though I didn't know what it was, and it vanished after I got over a severe bout of flu.
My tinnitus may be from depression, but recently I've realised that I've had hearing loss for way longer than when it was diagnosed 40 years back. (I'm 71 now) And I did attend a lot of noisy rock concerts in my 20s. So, the hearing loss, though unobserved could well have been hand in hand with T.
3) I've never had OCD, I'm an untidy person to say the least!
4) Hmm, I did have a bang on my forehead when I was about 6. But nothing really severe, as it didn't really hurt, but bled until I made my way home and mum bandaged me up.
5) See 2)
6) My T has definitely been so gradual over the decades that, without trying, I just live with it.
Tinnitus can cause anxiety if you let it. And your subconscious may allow a kind of vicious circle where the T becomes an in-part reaction to both hearing loss and to itself.
When I mentioned hearing T during a flu episode, I was only party awake, and with eyes closed, it seemed that something was really close to me, but ironically I felt it was friendly.
If any of this helps just one other person, then it's a good thing.
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Here's my tinnitus sound replica that I constructed about 10 years ago.
1) i know what you mean.. does it actually get louder or is it our perception of it.. my anxiety is pretty bad atm and my T is very much louder.. 2) always suffered from anxiety but got pretty bad menopause
3) def have obsessive thoughts.. esp as to what caused the T
4) no bang
5) no
6) mine was v low for 3 months.. it's has suddenly got louder.. but that's anxiety.. I think living in a noisy mid terrace caused it as I'm v sensitive to sound but onky just realised it..
1) Mine goes up and down, sometimes it's tolerable but the spikes are awful and can last for weeks. The frequency is the same (7100 - 7500hz) it's just the intensity/volume that changes.
2) Not really, although I have always suffered from anxiety and some low moods. I wouldn't class it as depression though.
3) I have dermotillamania, which is supposedly related to OCD.
4) I fell down the stairs and hit a stone wall head first 15 months ago and sustained a serious head injury. I wasn't concussed and didn't pass out, it was pretty horrific though. I have nerve damage / dead areas between the wound scars which are quite substantial. My tinnitus started 6 weeks after my accident.
5) Nope, nothing.
6) I've not had it that long in the grand scheme of things, but it does vary. Right now, it's through the damn roof and I struggle to function. I don't know if I have hyperacusis, but loud noises or a particular pitch range can make me wince. I was on the high street a while back and an ambulance went past with sirens on and it was like being punched in the head. I physically stumbled into the wall. Luckily (or not I guess) I'm so drained all the time that the T doesn't keep me awake. So if I'm having a really nasty spike I tend to give up and go to bed.
7) For me, the T is not caused by depression/anxiety but it is causing it. Does it make it worse? Yes it can for me, if I get stressed about the T it just seems to get worse so I try and walk it back mentally...it doesn't always work. Do I get frustrated? At my GP/ENT yes. They keep saying it's my age while discounting my head injury. Luckily the last GP I saw was a locum and she referred me for a CT scan, which I had yesterday. So hopefully we'll be able to rule out anything physically horrendous going on in my head other than nerve damage.
(1) My noise varies. Invariably loud morning (like now) and evening; variable during the day when concentration on doing this or that either lets it in or shuts it out.
(2) No; my youth was so long ago that we would have been told just to ’buck up’ if we’d been going through a period of depression.
(3) No.
(4) Plenty of bangs on the head, but no amnesia previously.
(4a). Last Sunday I fainted while riding my bike; spent 18 hours in A&E. Had cracked my helmet open by falling off backwards. I still can’t remember the event happening.
(5) No.
(6) No. I attribute my T to excessive exposure to aircraft jet noise while working in and near them.
As a general thread theme, I think this is helpful - classifying it as a survey starts to open up a whole can of worms about who owns the data, how it's looked after and how the results are to be interepreted.
Do good surveys set out to generate specific responses? Question 7 expects the reader to agree with the central hypothesis (anxiety, low mood and stress are caused by tinnitus, not factors which generate it) in order to answer it.
Surveymonkey has an interesting piece on this approach to survey creation - uk.surveymonkey.com/mp/bad-... - which includes examples of opinionated survey questions.
If a question setter is seeking a specific answer and doesn't want contrasting responses, this is the way to go, but the value of the responses is limited as people are being directed to have a specific opinion.
I think you’re thinking a bit too hard about this TinnitusPat!? I’m not a marketing company or working for a multi National!!? 😆, but I wish I was!!! As “yes” as it would be good if someone in the real know working for a research unit uncovered this research and perhaps did something positive about it!! What we’re uncovering here isn’t doing any harm! Or do you think the Chinese are listening?! 😆 I’m a tinnitus sufferer who is just trying to get some feedback to help me and perhaps others? I don’t need the layout of my post questioning? If it was perhaps a dissertation for a degree or phd I was doing - I would spend more time on the application, but then I’d ask if I needed it critiquing. but I have the rest of what’s left of my life to lead than to hover too long over the pre-production of a tinnitus uk post so it meets your specifications!? Everybody else who has answered my post has seemed to have “got it”, it’s just you that appears to have an issue??
MAC, I decided not to respond to your survey as it definitely wouldn’t help me in any way and I couldn’t see what benefit it would bring to anyone else. Simply talking about Tinnitus just brings it to the forefront of ones’s mind, where it loves to be. Prominent. Your survey simply seemed to invite a discussion on how awful it is.
The odd time I’ve looked at Facebook groups on T for example, it’s just going round and round and saying how bad it is. This benefits no-one.
Yes it’s horrible but dwelling on it in this way doesn’t, in my view, produce any answers.
Here’s a quote from the book — Tinnitus, From Tyrant to Friend: How to Let Go of Ringing in your Ears by Julian Cowan Hill
“Some of you may have a tendency to complain to others about how awful your tinnitus is. You programme people with tales of your suffering until they automatically ask you every time they see you, “Oh hi there. How’s your tinnitus?” You have a chat. Oh well, there’s this negative thing… Oh and you would never imagine, that negative thing… Oh you can’t possibly understand it. It's so negatively this, and negatively that, … and old so-and-so struggled with it for 100 years… and before you know it you are feeling utterly depressed and even more focussed on it than ever. Please be aware that some tinnitus people are ingenious at focussing on suffering and building up a network that reinforces their suffering.”
And I personally felt that your survey reinforced that attitude.
You are absolutely on the ball regarding “experts “ not knowing about T. Audiologists aren’t trained on it, and they know there’s no cure.
What we have in this forum is a group of people who know what it’s like, can possibly give hints and tips on what’s helped them.
I truly believe that most of the people who’ve been helped here no longer visit the forum as it simply reminds them of bad times they would rather forget about. Just like, if you went to the doc for some antibiotics for a bacterial infection, you would not visit the doc again to tell them you’re better.
I wasn’t inviting a discussion on how awful it all is and wanting to dwell on it all?! 😆🤦🏻♂️ I was merely asking round to see if I could find any commonalities with other sufferers and perhaps any other underlining issues that may also be comparable? As I said my hope was to see if this might lead in some way to one day establishing the true facts of what is causing tinnitus. I was trying to help!? Also last time I looked this is a forum for Tinnitus sufferers and to share their concerns and whatever else in relation to T and H. If you don’t like that and this upsets you then maybe you should come off this forum? As all the talk on here is going to make you focus on tinnitus!? 🤦🏻♂️ But unfortunately it does have to be talked about for some of us luv, you appear selfish in your thinking here too - as you’re not thinking about how there are others out there suffering far worse than you! And unfortunately for those some of us we have to discuss what we’re going through as we have no other option! I’d love to have a lesser from of T and be able to deal with it better or better still not have the bloody thing! And trust me I have far better things I would prefer to be doing right now than posting on here!!! I take no pleasure in it, but unfortunately not enough is being done so I’m trying to do my little bit here! Also might I remind you that you don’t own or run this group and have no rights to tell me what I can and can’t post, you might want to remember that next time as well! And I’ve not posted anything wrong in any case.
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