Hi, Long Term Tinnitus Sufferer Here — Seeking Help!

Hi,

I'm a long-term sufferer of tinnitus since 2005... My story is that I got it from a very loud rock concert after a week of using my mp3 player to work (50 mins journey each way). So the trigger for me was ear fatigue from personal mp3 played followed by an excruciating loud concert where I was about 2 metres away from a loud speaker stack. My tinnitus was severe initially, but it went away completely but then it returned, slowly at first, as I continued to enjoy a few concerts and clubs (with earplugs and in moderation). I only continued to do these activities after an ENT told me that I should continue to do all the things I usually did, just wear protection - I first and foremost blame her for the situation I am now in (horrendously loud tinnitus and hyperacusis) from bad advice. I should have trusted my gut instinct and never went to another rock concert again, but no I trusted her advice... perhaps because I wanted to.

I gave up concerts in 2016 when I got my first very noticeable increase - the time it went from being a "only at night" sound to a 24/7 sound, though very low in the day, I could tune it out easily. I was quite happy, learning to sleep normally with the new volume, and it didn't bother me too much. I still went to social nights with friends, bars and restaurants that weren't playing loud music were ok for me with earplugs.

Fast forward to April 2018 and I decided to accept an invitation from a friend to play electric guitar with him at his house. Big mistake! We played on small amps and for an hour and a half and that is what left me with catastrophic tinnitus and hyperacusis.... I'd say from this point onwards, the impact on my life has been absolutely life-changing and devastating. I'm to blame for that, I should have known better, but I stupidly thought with ear protection I'd be ok because I am usually ok playing my amp even without earplugs. I should have worn ear defenders not just ear plugs. As I hadn't taken in the extra volume from his amp and plus he turned his up a bit louder than mine. I became full of regret and started to hate myself and my decision that changed my life.

My life since has been very difficult. I cannot sleep without meds each night, the ringing is so loud. I cannot drive, shop or walk near busy roads without earplugs. I cannot go to restaurants or bars anymore or do most social activities that my friends do which has left me feeling isolated and depressed. I've tried to vacation as usual... which was partially successful. However on flights I have to wear ear defenders otherwise my tinnitus spikes like crazy. The last time I flew in May this year, part of my trip involved a boat trip....the boat was 87 dB! I wore earplugs but again, 87 dB on a small boat 47 minutes each way? It caused another increase in my tinnitus. The same thing goes for driving my car... if I drive on a highway for more than 30 mins, normal earplugs don't protect me, I have to wear ear defenders to stop tinnitus spiking. I'm not sure what kind of tinnitus I have but it's very reactive to low level noise and it really gets me down as it seems to increase in volume each time. I don't want to live like a hermit but it's becoming that way... and I hate it. The spikes from little mistakes are loud and go on for weeks. Usually when they fade I'm left with louder ringing generally.

Which brings me into present day... I live near a nice park with a lake. I often walk there, feed the birds etc to get out and see nature and see some natural beauty which calms my restless soul. Though it's bordered on all sides by roads, so there is always background noise but luckily I can usually cope with it without earplugs by walking deep into the park until I reach a crossroads which gets busier. When I reach this crossroads, I normally pop in my earplugs walk about 2 mins and I'm back in the quieter bit of the park. Well, last weekend I reached this crossroads, and I looked around and traffic seemed lighter than normal, and I thought "I don't need my earplugs in, it looks quiet". What I hadn't seen though was a big fire truck that crept up silently behind me...and when it was literally right beside me it activated it's siren, which was extremely loud and painful. First I had really bad shock and ear pain and I quickly put my hands over my ears and walked away as fast as I could....but the damage had been done, and my ears are now ringing this last week even more louder than usual and worse it came with an oscillating pitch that I just can't ignore. So now I am not sleeping well even with meds.

It's been 6 days of torture... is it worth going to my doctor tomorrow and asking for Prednisolone? Not the first time I've taken it... but as I've had repeated acoustic trauma over the years I don't know if it will help me. Because of the incessant ringing (which is 24/7 loud anyway but is even worse now) I must admit I am having suicidal thoughts again so appreciate any help. Sorry for the long story - thank you very much for your help!

 

Is there anyone that can help me with some advice please?

 

1) You should check the Lenire threads. You are relatively close to Dublin and perhaps it is feasible to get an appointment ASAP.
2) Is your T worsening coming along with additional hearing loss? If your audiogram has not changed it is more likely that it will go back to baseline. However, our hellish condition is very unpredictable.
3) The only advice that I can give you is to stay as calm as possible.

 

Hi Violetdusk - please do not lose hope. Who are you talking to about your feelings? A family member, close friend, therapist, doctor? Do not blame yourself for the past, but instead focus on what steps you can take to treat, cope and manage. I believe building your support network is essential at this time. Please share your thoughts and emotions with your doctor tomorrow and ask for help. Take care of yourself and know that you're not alone.

 

I would do that, if I were you...

You will find some tips on what else to watch out for in the post below:
https://www.tinnitustalk.com/thread...eone-else-who-has-tinnitus.26850/#post-307822

 

Thanks for the replies all, I'll respond to all:

InfiniteLoop, I looked at Lenire and the first thing I see is a massive pair of headphones - I absolutely cannot wear headphones or earbuds of any kind, my ears are too sensitive... so I don't think this treatment (or any treatment involving headphone use) will work for me... it will spike my tinnitus and actually make it worse. Sadly, that is my reality now. If I had mild tinnitus I could use it. But my condition is severe and I have hyperacusis too.

LostOutWest, Unfortunately I live alone, have no family (apart from a sister who lives in another country) and little friends. My parents passed away. The friends I still have don't bother with me much since I can't join them in most activities I used to. They still go to concerts, bars, restaurants etc. I cannot go to any of those places, even with plugs. The risk is too great. Still you find out who your friends are when you are at your lowest point, right? I'm learning. I'd like a dog, but as I live in rented accommodation they won't let me, even for medical reasons. That's a shame as I love animals and feel it would calm me and give me some company. I deal with this problem alone and that makes it all the more difficult as I do not have social contact except at work.

Bill, thanks for the very informative link and advice. I know most information of what's contained in your link apart from slightly different supplements I'm taking. I'm going to wear earplugs whenever outside, I took risks before and sudden loud noises always came out of nowhere, a nightmare. The thing with the siren was just my luck... the one time I didn't wear my earplugs... I'm so angry. Unfortunately I have had many of these spikes of bad luck...people laughing at work too loud, suddenly, or whistling. People slamming down folders in the office on desks near me, building works suddenly operating, leaf blowers suddenly being turned on when I think it's quiet in nature... lawnmowers... motorbikes in country lanes... no matter where I have gone for some peace I have been caught out. I guess earplugs outside is the safe bet. I cannot listen to my TV on medium though as my neighbour doesn't even like it on low and he slams doors at me....probably I need to move but I am depressed at the moment.

Going to the doctors shortly to ask for an emergency referral to ENT. Hopefully they will let me go.

 

HI @Violetdusk

I am sorry to know that you have had such a difficult time coping with tinnitus and hyperacusis and hope, as many people as possible, that visit this forum read your post and learn from it, as it could save them a lot of misery in the future. Alas, you have had to learn the hard way having been given the wrong advice. Not fortunate enough to have been given the right guidance and tutorship from someone that knows about "Nosie induced" tinnitus.

ENT doctors are physicians not tinnitus specialists. They know about the anatomy of the Ear, Nose and Throat. If there is an underlying medical problem associated with these organs that is causing the tinnitus, usually they will be able to treat it medically or surgically and I believe most will be able to do this well, as this is their area of expertise. However, when it comes to tinnitus, most have never experienced it and those that have probably have it mild. Therefore, they tend to give the wrong advice when telling a patient with "noise induced" tinnitus which is often severe. Continue using headphones as long as the volume is low and go to concerts you're safe as long as you use earplugs.

Many people give a reverence to ENT doctors and other physicians for having medical qualifications and Phds which they may well deserve, in the field of Audiovestibular medicine, but this does not make them a tinnitus expert or even having a deep understanding of the condition. My ENT consultant has a Phd in Audiovestibular medicine and is someone I have a lot of respect for and have a good rapport with. She once told me that I know more about tinnitus than her - for the simple reason she said, having never experienced it.

When it comes to tinnitus particularly "Noise induced" when there is no underlying medical problem causing it, a patient should be referred to an Audiologist or Hearing Therapist that specialises in Tinnitus and hyperacusis management. Many but not all, were either born with tinnitus or acquired it at some time in their life. They will have a deeper understanding of tinnitus and know how it affects a person's mental and emotional wellbeing. This can be particularly helpful when giving a patient tinnitus counselling. Unless a person has tinnitus they cannot understand it or have any knowledge of how it affects a person.

Please try and not use earplugs too often. If you are able to get referred to a Hearing Therapist or Audiologist that specialises in Tinnitus and hyperacusis, try and do so. Wearing white noise generators I feel will help to desensitise your auditory system and treat the hyperacusis and tinnitus. Counselling may be required. Please do not use headphones or go to places where there is loud music.

Click on the links below and read my posts that I think will be of some help.

Take care and hope you start of feel better soon.

Michael

https://www.tinnitustalk.com/threads/new-to-tinnitus-what-to-do.12558/
https://www.tinnitustalk.com/threads/tinnitus-a-personal-view.18668/
https://www.tinnitustalk.com/threads/hyperacusis-as-i-see-it.19174/
https://www.tinnitustalk.com/threads/acquiring-a-positive-mindset.23969/
https://www.tinnitustalk.com/threads/tinnitus-and-the-negative-mindset.23705/
https://www.tinnitustalk.com/threads/the-habituation-process.20767/
https://www.tinnitustalk.com/threads/is-positivity-important.23150/

 

@Violetdusk

I agree with you and don't suggest using the Lenire. Try and get referred to Audiology via your GP and see a Hearing Therapist or Audilogist that specialises in tinnitus and hyperacusis management.

I believe white noise generators and counselling is the way forward for you.
Please read the posts in my links that I sent you.

Best of luck

Michael

 

Hi Michael,

Thanks for your informed response, much appreciated. Yes I have been using white noise for a number of years now as the noise has been bad when I sleep and is now bad in the day. I usually play it on my bedside table playing rainfall....anything else bothers me, but rainfall, as a natural sound, I am able to partially hear it. My tinnitus is still loud and there, but hearing the rainfall helps. I cannot sleep without meds, so loud as my Tinnitus is. I agree that I followed the wrong advice....I also believe that all people who previously enjoyed loud music concerts do not go again once they get severe T....I don't want anyone to end up like me because my life is hellish and often I do question why I chose to exist. All of this could have been avoided had I been given sensible advice in the first place. Music concerts are the worst, so many shows I've seen I'm sure they've broken the sound level restrictions. None of it matters anymore, as I can't change anything of it. I'm not even 50, and sometimes I am scared I won't even reach it. Of course, I will try.

I have also been to ENT many times....they know me well, and are unable to help me further, much to their chagrin. I feel they want to help...but they seem frustrated that they cannot. They have tried many things with me...I have been given tinnitus maskers to wear in the ear, but they also spike my Tinnitus...which seems very reactive. I also had a hearing aid test, even though my hearing is mostly ok (just at high frequencies I have hearing loss). Hearing aids were worse than the maskers and also spiked my T. The only thing I can deal with is masking noise away from my ear.

I never wear headphones or go to places with even loud music nor loud conversation. Most normal social places, even quiet cafes are not quiet for me....the noise of coffee machine is bad for me. I can go to a quiet cafe, but I must wear earplugs. I must wear earplugs whenever outside unfortunately, as sirens, motorbikes and road noise are all too much for my ears and cause spikes. Sudden loud sounds can cause me weeks of even louder T and basically I am in hell again like right now with a siren going off near me, when I thought it was quiet in the area. Life is unpredictable with noise. With Guy Fawkes night coming up in November, fireworks go off for a week. I basically try not to go out, and wear ear defenders indoors because of all the bangs which echo in my house.

I've just been to see the ENT to ask for Prednisilone, she is concerned as I have had it twice before, and said if I take more she will have to watch for my bone condition and adrenal gland, which might suffer. So i am waiting for their answer, I hope they will help me.

Thank you for the links and advice. It's helpful.
Best,

Martin

 

@Violetdusk

HI Martin,

Thank you for the additional information as it helps a lot. Believe me I know what you are going through having had very severe tinnitus and hyperacusis. My second noise trauma in 2008 resulted in 4 years habituation. Please click on the link below: My experience with tinnitus, from 2008 onwards will give you some idea of what I have endured and therefore understand what you are going through.

If I may say so again, if possible try and get referred to Audiology (Not ENT) to see a Hearing Therapist or Audiologist that specialises in Tinnitus and hyperacusis treatment and management. The best way to treat your sensitivity to sound, is by wearing white noise generators. They used to be called maskers but this description is no longer used, as the white noise should not be "masking" or "covering" up the tinnitus so it can't be heard. Doing this is likely to cause irritation to your auditory system as you have found.

The correct way to use white noise generators is to set the volume below the level of the tinnitus. In your case I suggest the lowest level possible so as not to cause any irritation to your ears. This will take time but good results are often achieved with patience. I believe you will also need tinnitus counselling.

I understand the reasons you are using hearing protection outside and within your home. However, please try and use these less. Start by using "Noise reducing earplugs" These reduce external sound but wont block it out completely. I explain more about this in my post: Hyperacusis, As I see it, available in the link that I have given you.

By using hearing protection the way you are doing, your auditory system has probably become more sensitive to sound. This needs to be addressed in order for you to improve and you can, I firmly believe that but you need to be referred to the health professionals that I have mentioned. Please have a talk with you GP and see if this is possible.

All the best
Michael

https://www.tinnitustalk.com/threads/my-experience-with-tinnitus.12076/

 

Hi Michael,

Thanks, I have already been referred to Audiologists and I have the white noise generators, they are called Pure Tone and have a volume button, but they always made my tinnitus worse in the past, as it's so close to my ear. My Tinnitus is very reactive and spikes quite easily - for this reason I generally avoid putting anything in my ear, but I could give it another go once I get over this current bad spike/sound (if I ever do).

Here's a question open for you or everyone:
I got Prednisone, but they were only prepared to prescribe me 30mg for 4 days and then stop. I just went to see a doctor about this issue, and he became defensive and said he was not prepared to prescribe 60mg for 7 days (as all the research recommends this high dose for a week). Have you had any success with Prednisilone (a steroid), following ear trauma? If so what was your dose? The ENT doctor I saw was patronising and said "If I prescribed you 60mg and you broke your femur, I would not have a leg to stand on". When I directed him to the articles that recommend this on my phone he said "I know what the research says, I wrote most of those articles" which I just found to be ridiculous. He was quite a young ENT and quite arrogant, but he did give me advice to go back to my GP and ask to be referred for a new audiogram and then to casualty for a change of the prescription, so perhaps I'll do that tomorrow.

Not sure, I am tired of being made to feel like I am a newbie by arrogant doctors who don't know the severity of my life living with this condition...60mg of prednisone could make the difference between reduced damage to new level of tinnitus and more suicidal thoughts....

Thanks,

Martin

 

@Violetdusk

HI Martin,

Please write my name as @Michael Leigh then I will get a PM alert.

I have never taken Predinisolone and I'm quite surprised you have been able to get it here in the UK for tinnitus. I personally do not agree one should take this too often as it is a steroid although, I have heard it can help some people with noise trauma.

Puretone white noise generators are good and I have used them for years without any problems. I have used both types: BTE (Behind the ear) which look like hearing aids and the smaller more discrete bullet shaped that fit in the ear canal.

Your auditory system is hypersensitive resulting in acute hyperacusis. Unfortuanly this is not helped by you overusing hearing protection as you are "Lowering" the loudness threshold of your auditory system. This results in making your ears more sensitive and the longer you continue to practice this the more acute you risk your symptoms becoming. The way forward for you is to learn to use the white noise generators but please take note of my suggestions on how to use them.

Whether you have in-ear or BTE WNGs, set the volume to the lowest setting that is possible. Only wear them for 1hour then take them off. Leave them off for 1 or 2 hrs then put them on again. Carry on with this for about 1 week. Hopefully, your ears will become more tolerant and slowly you can increase the wearing time. Ideally you want to aim for 8hrs total wearing time. However, due to the sensitivity of your auditory system this will take time.

If you attempt to put the white noise generators on and try to wear them continuously for 8hrs as some Audiologist and Hearing Therapist recommend, you will find this very difficult. If this is what you have been trying to do then it's no wonder your ears have been irritated and the tinnitus and hyperacusis made worse, spiking. You have to do this very slowly and if you persist and be patient it will work. Please try to stop overusing hearing protection as you are making things worse. I am not saying to stop it abruptly but gradually use earplugs and earmuffs less.

Try my suggestions and I'm confident in time you will improve but it will take time. If you are able to get tinnitus counselling with a Hearing Therapist or Audiologist, who's trained in tinnitus and hyperacusis this will help.

All the best
Michael

 

Firstly, I’m very sorry this has happened to you and you are feeling so unwell and desperate. You KNOW management of this can get better. You know this because you’ve done it before, successfully for years. You’ve already been given advice but I think it’s time you got a referral to someone who is trained in counselling people with intrusive Tinnitus. There is a lot of hope out there. Also, it’s hard but try not to beat yourself up over how you made it worse. It’s done, it’s happened but you were doing something you wanted to do I’m assuming? Now you need to think about coping with this and you will because, you’ve done it before, you’ve just had a setback. It can, will and does get better.

 

Does the above mean that you had been attending concerts with protection between 2005 and 2016?

 

According to Neuromod, people with hyperacusis actually were super-responders, so hyper-acoustic people responded the most to Lenire in terms of tinnitus improvement. However, I understand if you don't want to try out the device. Several people have also mentioned an initial increase in their tinnitus using Lenire.

 

Micheal Leigh is correct. I have followed his advice and got hearing aids with noise generators that I can control on my iPhone. I've had high pitch hissing tinnitus for over one year and now some days are baseline (2-3/10) and some days suck 8-9, but it's better than before. Ear protection has been bad for me. I have tried to mow my lawn with a power mower while wearing plugs and muffs, and guess what? SPIKE!!!! It's the vibration that penetrates thru the skull not just thru your ears.
I don't want to name the brand of aids and noise generators I use in case someone gets them and they don't work that well. My brand had a 30 day trail period and I talked my audiologist into giving me 60 days. I would miss them if I didn't have them now.
Good luck.....think positive...it's so hard to, I know, BELIEVE ME I know.

 

@Cape crusader

I am pleased that you are making progress Cape crusader and hope this continues.

@Violetdusk
My advice to you is to first get a referral to Audiology on the NHS and if possible, to see a Hearing Therapist or Audiologist that specialises in tinnitus and hyperacusis management and treatment. I have gone through a very similar experience to you, and believe the best treatment is tinnitus counselling and the wearing of white noise generators. As I have mentioned above, this treatment will take time and is not a quick fix.

@Autumnly means well and her heart is in the right place. Therefore I do not wish to step on her toes. However, I feel I must mention the following although I was apprehensive to do so, but due to your tinnitus and especially hyperacusis being severe I will proceed.

I know someone whom I shall not mention that has tinnitus and hyperacusis. I advised them not to try Neuromod but to stay on the treatment they were having with their Audiologist. The treatment involved wearing one white noise generator and I believe, was going to involve counselling. I do understand the distress this person was going through, as I endured 4 years of immense discomfort habituating for the second time.

I advised this person to leave it at least one year to 18 months and if the treatment they were having wasn't working then try Neuromod. Please take note of what I have previously said, I do understand the distress tinnitus can cause and how desperate a person can become in wanting relief from the dreaded noise. When a new treatment comes along and is backed-up by esteemed medical professionals and clinical trials have been carried out and shown to work it all looks very impressive. This person decided to try Neuromod and now the tinnitus and hyperacusis have become worse. From my understanding, Lenire playes a series of tones or sounds through headphones. I have mentioned many times in this forum the dangers of headphone use for people with "Noise induced" tinnitus. I hasten to add not everyone will be adversely affected using them but many are.

Please be very careful of what you decide to do.
All the best

Michael

 

@Violetdusk
Firstly I would ignore the comments form people saying that you should not use ear plugs too much

You already learned the hard way that this isn't so simple

Unless you are in a noise controlled - by you - environment, you have no control on what can happen and by then it's too late to insert plugs.

Also I would not rely on plugs but rather ear muffs as you have no issue with earwax build up and ear infections and they are easier to put in and off

Your ear pain is due to nerve pain ending damage due to noise this is not your brain playing tricks on you.
It's like having a bad sunburn on your back and soon after going back under the sun, and it's suddenly much more painful than it should be, this is due to nerve damage.

This hyperacusis will improve over time provided you have no more damage but it may take 2 or 3 years due to your age.

I was in the same situation after a stupid long shooting session with large rifles and bad protection.

Think of ear protection like being sunglasses for people with sensitive eyes, don't see this as negative it won't increase hyperacusis in a non reversible way or make things worse permanently.