My (Long) 10 Year Tinnitus Story

Hi everyone

I have been reading this forum on and off for a few years and since the beginning of 2019 things have gotten a lot worse for me so I felt like now was the time to post. I'm going to start from when I first got tinnitus which was 10 years ago so this story will be quite long, please bear with me.

I first got tinnitus back in 2009 when I was 12 years old. I always had frequent ear infections and issues with ear wax blockage throughout my childhood so I wouldn't be surprised if this caused permanent damage (and therefore tinnitus). The first noise I developed was a beeping noise in my left ear - I noticed it as I was trying to sleep one night and assumed it was coming from some sort of alarm clock or electronic device but when I put my hands over my ears I realised it was coming from my own head. I did panic a lot at first and had to sleep with the TV on in the background for a few weeks but eventually I got used to the noise as I could only hear it in silence so it wasn't too bad. I went to the doctors but they weren't too concerned as my hearing was normal so they didn't do anything further (not even a standard MRI scan).

Between the ages of 12 and 16 I developed a few more noises like the high pitched ring in my right ear and also a morse code sounding noise in my right ear but these didn't bother me too much because they were again only audible in very quiet situations.

In 2013 at the age of 16 the tinnitus got a lot worse and I remember the exact night it all started. I was on my laptop and I thought the fan sounded a lot louder than usual but I just tried to ignore it. Anyway, it got late and I decided to switch off my laptop and go to bed. That's when I realised that it wasn't the laptop fan - it was my ear ringing extremely loudly. Not only was my ear ringing extremely loudly but I soon realised that in my other ear I was now unable to hear certain noises such as running water, crinkling of a crisp packet, tin foil, etc. I really panicked fearing that this would be permanent but I couldn't really do anything until the morning, so I lay there until about 3am using the fan to try and mask the tinnitus (which it only did with partial success - I could still hear it) and finally managed to fall asleep for a few hours. When I woke up everything was back to normal and I was so relieved. I hoped this was just a one off freak incident but unfortunately these tinnitus/high frequency hearing loss 'attacks' started happening about once a week and could last anywhere from half an hour to a whole day. I ended up going to the doctors as I knew this was not normal and I was referred to ENT. As my hearing test came out normal and my MRI scan came out normal they didn't take me seriously at all and told me that my 'extreme anxiety' was causing all of my issues. This is absolute rubbish for many reasons:

1) The extreme anxiety started AFTER these attacks began - I was fairly normal before this, if a little socially anxious, and I was coping very well with my baseline tinnitus (in fact I barely thought about it any more)
2) Sometimes the attacks would happen during my sleep and because the ringing is so loud it would actually wake me up from my sleep - as far as I'm aware when we're asleep is when we're at our most relaxed so you'd think if the attacks were caused by anxiety they would only happen during the day
3) Anxiety is on the rise in this day and age, yet when I googled to try and find other people who experience these tinnitus/hearing loss attacks I probably found 10 people max - you'd think if anxiety caused these symptoms there would be a lot more people posting about it online...

Anyway, I was referred to tinnitus and hyperacusis rehabilitation therapy which helped a little but there's only so much therapy can do for a physical, unpredictable problem like this. I eventually accepted that whatever is going on in my ears just seems to be something that science can't quite explain yet and I would just have to learn to live with this. My GP prescribed me Betahistine just to see if it helped as he thought it could be some kind of cochlear hydrops - the attacks did seem to decrease in frequency after this but it may have just been a coincidence. I still take the betahistine to this day as I know it can't do me any harm so why not.

During 2018 the frequency of these attacks dropped to maybe once or twice a month so they were a lot more manageable, and the length of time they would last for also decreased to maybe a couple of hours versus an average 8 or 9 hours when they first started, so I was coping quite well.

Unfortunately at the beginning of 2019 I started to notice that the ringing in my right ear had gotten permanently louder as I could hear it even when I was watching youtube videos through my headphones. I then started to notice that not only was the ringing louder, but my hearing had permanently decreased in my right ear as well. I particularly notice the decrease in hearing with low pitched sounds like the fan on my PC and the noise of my car engine running - I can hear these noises so much better in my left ear, in my right ear it feels like someone put a piece of cotton wool in my ear and the noise is dampened.

Initially I thought it may be earwax causing the problem so I went to get my ears microsuctioned in the first week of January. This was a huge mistake as I actually made my problems worse. The doctor told me that there was not that much wax in my ears so microsuction wasn't necessary, however I stupidly decided to do it anyway in the hopes that it would improve my hearing. The doctor microsuctioned my right ear and I had no issues, however when he did my left ear I heard a very loud pop and immediately afterwards my hearing in my left ear was decreased by about 30-40%. I tried to stay calm and hoped that the hearing would go back to normal in a few hours but a few hours passed and I had absolutely no improvement. I phoned 111 and they advised me to give it until the morning and if I still had hearing loss, to get an urgent same day appointment at my GP. The next morning thankfully most of my hearing had come back but I was left with one issue - whenever I hear certain noises above a certain loudness level (mainly the sound of people talking loudly or even my own voice can trigger it) I get a very strange feedback noise in my left ear that almost sounds like a broken speaker or something, and it's very unpleasant. I've had this ever since the microsuction and it's still there 3 months on, so I'm very annoyed at myself that one stupid decision has caused permanent damage but it's too late for me to do anything about it now. I never had issues with microsuction in the past (have had it done at least 10 times in the past) so I never thought it would ever cause a permanent issue but I was clearly wrong. ENTs don't seem to believe microsuction can cause permanent damage but since this happened I've read the studies where it is proven that the volume can reach 140dB in some instances - clearly that would be enough to cause permanent damage and I really wish I had done more research beforehand.

Anyway, back to the hearing loss in my right ear. I went to the GP about it in February and was put on a waiting list for an ENT referral. 7 weeks went by and I still had no appointment, I was so desperate by this point I decided to go privately. I finally had my private appointment on Wednesday and was told that my hearing is normal. I don't understand how I can be perceiving a noticeable difference in my ears and still have 'normal' hearing - this seems impossible to me. Anyway, I was simply referred to tinnitus and hyperacusis rehabilitation therapy again and that's where I'm at now.

To sum it up I have 4 problems (2 of which only started this year):
1) Baseline tinnitus with a variety of noises in each ear - doesn't really bother me as I'm used to it now
2) Tinnitus/hearing loss attacks - have decreased in frequency but still bother me when they happen
3) Weird 'feedback' heard in my left ear mainly when I hear voices above a certain volume, since getting microsuction - really bothers me and has stopped me from going to the cinema which used to be one of my favourite things to do
4) Noticeable dip in hearing in my right ear mainly at low frequencies that was apparently not visible on my audiogram - this also really bothers me as things sound out uneven now like my car radio for example

If anyone can relate to any of my problems please speak to me, or if anyone has any advice on dealing with these issues again please let me know. I'm feeling the lowest I've ever felt in my life at this point - I feel like no one takes me seriously and thinks that everything I'm perceiving is just in my head when I know it is 100% real but there's no way I can prove it. It is so frustrating and I really feel like life isn't worth living anymore but I'm just carrying on with the tiny amount of hope that I have left.

If you made it this far - thank you

 

These attacks you are having are called “Fleeting Tinnitus”. This is where your hearing will “go deaf” and you will get very loud ringing in your ears. Some people also experience distorted hearing from this as well while the attack is happening. Based on reports from here these attacks can last between 30 seconds to 8 hours. They usually are more on the shorter side.

The weird feedback when people talk could be reactive tinnitus or distorted hearing. @Manny ans @Contrast can maybe help here.

I can’t tell why you have hearing loss at a young age seeing that you don’t have any infections anymore. Do you expose yourself to loud music? Do you go to loud venues? Do you wear ear plugs at all? If so, when?

 

Thanks so much for replying! I can't believe I've never come across the term 'fleeting tinnitus' before - I must have been typing the wrong things into Google. I will look into this more because the way you describe it sounds similar to what I experience.

In terms of your questions:
1) No I always have my headphones on at a low volume (usually at about 20%-25%)
2) Absolutely not - I've never been clubbing in my life and I've never been to a concert either. The only loud place I guess I go to is the cinema but it's never felt uncomfortably loud to me - I haven't really been much since these recent issues started though
3) I never wear ear plugs - the only time I've worn them is to stop water going in my ears in the swimming pool and also when I had an MRI scan

 

I think it is safe to rule out noise induced tinnitus as a potential cause.

The only thing I can think of is the infections you had when you were younger may have done some damage that it now showing up. Do you still get infections? Did you get tubes put in your ears?

As long as your tinnitus isn’t bothersome that is a good sign. Keep a positive attitude about it.

Also I would not recommend micro suction anymore. Many, many people on here have had issues with micro suction and the other procedure where they put water in your ear to flush stuff out (syringing). Please ask to receive wax softening drops and then a manual cleaning.

 

Yeh I agree I definitely don't think I originally got tinnitus from loud noise exposure, it started completely out of the blue.

To be honest I think I stopped getting frequent ear infections around the time the tinnitus first started, since I was 12 I've probably had maybe 4 or 5 ear infections which usually started after a cold where I've been unable to equalise my ears and the fluid in the middle ear has caused an infection. I never got grommets but the GP was thinking about it at one point as I did suffer with glue ear as a child - they never went through with it and I don't remember why because it was a long time ago and tbh back when I was a child I didn't really understand what glue ear was.

100% agree on the microsuction - if I need ear wax removed in the future I will definitely try and find someone who will do it manually as that seems the lowest risk option.