I wanted to check to see if anyone else has experienced what I'm currently going through, and have done so for the last 18 months.
Before that i 'd like to give a brief history of how my tinnitus started...
My hearing problems started in March of 2016 when I was 29 and my tinnitus was ultimately caused by a one off rock gig i attended where I had the ringing in the ears the next day but unfortunately it never went away in my right ear. Up to that point i'd been a keen musician and had played a few gigs myself in the past but not for many years. Maybe I'd caused some hearing damage prior to that fateful day but I wasn't aware of it.
After the gig I really struggled for a good few weeks, I was anxious in the day and feared going to bed at night. I saw my GP and unfortunately didn't get much positive advice and ultimately saw an audiologist who helped explain a few things about tinnitus but didn't give me much in the way of coping strategies. While this was going on I'd developed sensitivity in my ears also which I now know is hyperacusis. Any sudden shrill noises like the sound of cutlery or car brakes were poorly tolerated. Additionally i experienced what feels like sensitivity to even relatively quiet sounds and this is what I'd like to see if anyone else experiences. The best example would be when watching sports on TV at a very low volume where there is a drone of crowds cheering. The result is a buzzing, sort of white noise sensation in my ears despite the volume being low. I experience a similar thing when the microwave is on. Fortunately this subsided over the course of the next 12 months and I was left with the ringing which I progressively seemed to accept.
Moving forward 2.5 years i underwent an MRI to investigate chronic headaches (these began in 2011, long before the tinnitus) and unfortunately the loud MRI triggered the sensitivity again. This time it has persisted for approximately 18 months with no sign of subsiding and is causing me more problems than the tinnitus which has remained pretty much unchanged.
So I was wondering if anyone else experiences this sensitivity and buzzing to sounds such as a microwave running, so I guess low volume, broadband sounds? If I cover my ears the sound goes away so it is definitely in response to the sound. I'm not sure if it's hyperacusis or a form of tinnitus, or does that even matter? Is the treatment approach the same?
Sorry for the long story but sometimes it helps to know a bit of the background. On the plus side in the time I've had tinnitus although I have found it limiting in a lot of respects I've had a baby son and moved to a better job so life does go on.
Wishing everyone all the best and strength to accept this condition and move on with their lives.
Written by
Poppycat1234
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Tinnitus & hyperacusis 4 months now. had severe hyperacusis in both ears which I've seemed to overcome in noise level anyways, it was pretty bad at first I couldn't tolerate anything from my kids talking who are young 3-5-10 the eldest with servede difficulties and is very loud screams a lot tbf all 3 are bloody loud, ipads blasting music blasting, washing machines dryers hovers cars almost anything everything I didnt drive for a month in fear of the car engine. I wore ear plugs all the time which made my noise intolerant even worse so I decided to stop using them all together which greatly improved my sensitivity. Still have problems with cutlery and clanging of toys ect but I think this is due to the tenson tympani because my ears spasm constantly which is f@#king annoying and deliberating in it self.
Tinnitus still reactive reacts to almost everything and is driving me up the wall I'm all most confidant that's it's my nervous system on hyper alert though because I have nerve pain in my feet and hands and when that gets bad my tinnitus reacts to it likes its screaming pain at me through my tinnitus, when the pain pulsates my tinnitus mimics it in volume it's so surreal. It also reacts to ppl walking tapping on phones cars anything with static, frequencies & movement and my will tinnitus reacts I also get this ant like feeling all over my head and face when sound goes through me ears 😱😱😄 Did a youtube video of it for help because my wife family ect think I'm going crazy so I just suffer alone I even got sectioned a few weeks back, my wife phoned authorities on me needlessly it didnt work; its driving me nuts on a daily basis everyone wants to put me on pills which I dont want.
I have very similar symptoms to you. I have tinnitus and hyperacusis and also the problems with my vision. The problems with my vision started about two years ago. The first thing I noticed were lots of floaters in my vision and light sensitivity, but I also have mild visual snow and I have images that remain after I stop looking at them. I find this is worse in low light. Do you have problems with your jaw? I have pain in my jaw and clicking on the left side, which is the same side as my tinnitus. I think the two things are related, possibly due to nerve damage in the joint of my jaw.
They are all definitely related. I have flatters, visual snow and aura vision and afterimages and those cause me so much stress, I just cant focus on anything anymore, I feel like I'm on another planet sometimes, I struggle in place weres theres loads of ppl as I just cant focus what so ever because those afterimages, it happen when I look at just about everything. Yeah my jaw clicks on my right side were my tinnitus is the worst although my left ear seems to be the instigator, its like sound goes in one ear then transfers that in to tinnitus sound out my right ear. When I move my neck, up down left or right it changes in pitch also when clenching.
I'm convinced my problems are related to the joint pain I have been having. My shoulders, neck and back were killing me yesterday and have still been pretty bad today. I'm sure I have compressed nerves somewhere, like what happens in carpal tunnel syndrome, but most likely in my jaw. Do you have have any joint problems other than in your jaw? I noticed in your video you said that you had plantar fasciitis, which is odd, because I'm pretty sure I had this for a few months. Probably just a coincidence.
Hi Dan, thanks for your comment and well done with the video. Considering what you're going through you described things very well.
Firstly I hope things went well with your chiro and ENT appointments you mentioned in the videos, and I hope things are ok at work.
I don't have a lot more to add than my original post really as I'm still working through my problems myself. The staticy wooshing noises you describe sound very much like what I have. Even very quiet sounds can cause problems for example I've found the sound of a burning woodwick candle intolerable at times. It's hard for me to say whether it's improved at all as it varies from day to day, but I think the more you can accept things ( I know this is not easy and time is a great healer in this respect) the less these problems will affect you.
I also became aware of lots of floaters and static vision ( if I look at the sky it looks like a load of tiny spots darting around) about 5 years before my ear problems started, at the same time as I started having persistent headaches. If you look at my other posts you'll see a thread about this. Additionally I've also been on gabapentin previously for the headaches but didn't find them helpful. No idea if they contributed to the ear issues. I've found when I'm having a bad headache day my ears are always affected more so I think my problem is predominantly a brain thing and like you my audiology cane back normal.
For me acceptance of the ear problems is a big step forward to returning to some form of normality. Its very much a vicious circle when you are struggling as the symptoms heighten the sympathetic nervous system stress response which then makes you hyper aware and so on. By being less bothered by the tinnitus my brain seems to drop it down in importance and doesn't go 'looking' for it and so I become less aware of it. You've probably read lots of stuff on this already and I'm still on my way to recovery but I truly believe this is the way forward given the current treatment options. I still have bad days but they are fewer and farther between than when this all started. My sleeping is much better now, I still wake early but I can cope with that. At my worst I was getting 1-2 hours sleep per night. I may have missed it in the video but how exactly are you struggling with your sleep?
I also wanted to relate to you regarding having a young family. I have a 2 year old and totally appreciate what you're saying about almost a feeling of guilt for what we have going on affecting them. I also would like to try yoga to try and calm my CNS but as you say finding time around the rest of life is difficult.
Sorry for the rambling but sometimes it helps to know you're not alone regardless of how crazy some of the symptoms sound.
Feel free to ramble on, I know what it's like to feel alone with this horrible life deliberating condition. Like i said not even my own wife wants to know anymore and is the last person i can talk to about it, it'll cost me my marriage if I'm not careful so I dont bother anymore.
When I first developed tinnitus I didnt sleep for 4 days straight I was totally knackered and still struggle to this day. Docs put me on mirtazapine 15mg and then 30mg which I'm trying to reduce and eventually completely come off it because I'm finding that when I try to fall a sleep without it its virtually impossible and that's not good and I dont want to be on them forever neither.
I know how crazy the symptoms are but that's what's happening and I have no answers to why apart from my brain is sending the wrong signals to my cns and causing it to malfunction or become super hyper 🤷♂️ I've had mri on my brain neck and lumbar some for nerve pain all came back clear as well as a nerve end to end test which came back normal which I expected because it's possibly neuropathic pain or impingment and not damaged nerves. 2 hearing test and they both came back within the normal range. Ent was useless so going to see another ent, well it was supposed to be on the 9th of April but I'm assuming with the coronavirus outbreak it's going to be August sometime now.
Dan, equally i know what you're going through and talking does help as it's a s much of a mental battle as it is a physical one.
As far as the sleeping goes, I had similar problems initially. Specifically is get to sleep fine (exhausted from the day) but would wake 1-2 hours later and not be able to get back to sleep. I realise now that it wasn't the tinnitus that was stopping me from sleeping but the anxiety that the tinnitus causes. Similarly if for some reason I become more anxious about the tinnitus it can again bring on sleep problems even though the tinnitus itself hasn't changed.
Tbh i didn't find the ENT i saw all that useful. No doubt if there was a ear problem they would have been able to help but I'm disagreement with you that my problems are also a brain thing. There's a really strong relationship between my migraines and my hyperactive and ability to deal with tinnitus so I'm trying to work on migraine treatment at the moment.
Do you have anyone else you can speak to about this? Because the symptoms are so hidden and only you hear these sounds if you're anything like me you find it very isolating. I did manage to chat with someone locally to me who had similar problems and found it useful to get some stuff off my chest and equally to realise that I'm not the only one going through this stuff. I forgot to mention, in regards to your first post, I did the whole forums thing initially and most i have found to have a negative effect on my wellbeing. Others may have a different experience but that's just me feeling. There's a fine line between supporting each other and being consumed with self misery.
I don't know if you've read any books on the subject but I found "living with tinnitus and hyperacusis" by Baguely quite good from an understanding point of view. Granted it didn't change things physically but I think it helped with the anxiety somewhat.
Feel free to contact me if you have anything you want to chat about.
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