Three Years Later, I'm Doing So Much Better — Tinnitus Does Not Distress Me Anymore

Hi everyone,

I've been putting this off because I wanted to wait until I was fully habituated, whatever that means, before posting. Also because this forum represents some really desperate times for me, that I wanted to leave behind me. The third reason is that tinnitus is such a non-issue for me now that I almost feel like I imagined the whole drama. It's hard to remember how bad things were and how close I came to the edge.

However, I've decided to post today because I'm going through some unrelated challenges (a chronic pain condition) and I want to reflect on how I've come through bad times before. Tinnitus really taught me how resilient we are, and how terrible times can turn to good ones, even when it seems impossible.

In the middle of the bad times I PROMISED myself and everyone else that I would come back one day and tell my positive story, so here it is.

I'm over three years in and I can truly say that tinnitus does not distress me anymore. Sometimes it pops up and irritates me, and I play rain sounds on my phone to distract myself. I also play rain sounds on a sound machine continuously in my bedroom. However that is mainly out of habit and when I travel I don't bother bringing the sound machine. It is no longer a major consideration in my life.

Yesterday I was lounging on the sofa reading and playing on my laptop in total silence, and the tinnitus was like a faint static buzz. Once upon a time it would have brought me to tears.

Tinnitus volume is a tricky thing to pin down, but I will say that I don't think mine has exactly quieted with time. It's more that my brain doesn't focus in on it anymore and it fades into the background. Back when things were bad I could hear it whilst driving on the motorway with music on and sometimes with the windows open. It's high pitched and it could cut through just about anything.

Now something simple like a computer fan or a fridge humming or someone talking is enough to distract me from it. Every now and then I'll have a spike where it intrudes a lot. I'll put on a load of white noise and some music and just keep on with my life, and eventually it passes. I am confident now that things will get easier with each year that passes.

I also want to reassure people who have been in this for a while that it can take a long time to adjust, and just because you are a few years in doesn't mean there is no hope for you.

Months 5-8 were the worst for me. I had to take time off work and I was struggling to look after myself. I didn't want to be here anymore. Weirdly, I think CBT is what saved me. The therapist convinced me, over weeks of arguing, that it was up to me to make the choice to stop listening to the sound. After that, I got tough with myself and every time I walked into a new environment, instead of looking for the sound I would flick myself hard on the face with my fingernails and say "stop". The "Back to Silence" thread by @I who love music really helped me with this idea of redirecting my focus. On bad days I would go in the kitchen, put on the radio and as many appliances as possible, and cook up a storm. The activity and all the noise were enough to keep the panic at bay.

For about the first year or so I was pretty much moving all the time. I didn't want to give myself time to panic or think or listen for the noise. I was always running, and yes it was exhausting but I promise you, it didn't last forever. Nowadays I spend a lot of time in bed thanks to my other condition, and the tinnitus is barely an issue. I never ever ever ever thought this would be possible for me, but it happened.

At the end of year one I was anxious and strung out and exhausted, but I felt like I had some measure of control over everything, and I was starting to enjoy aspects of my life again.

During year two the tinnitus became less and less of an issue for me. I still had spikes where I was quite distressed, but I got better at dealing with them and I trusted them to pass. My last bad spike was a year ago now, at the end of year two. I really felt like I was back at square one, but it did pass, and I feel like those days are behind me now.

Just remember that recovery is extremely non linear, and you will have days where you feel like you've made no progress at all, but I promise you, year on year things will get better.

It's amazing to me that a few years ago I wanted to get cancer and die, and now I have the same tinnitus but I barely think about it. We are so much stronger and more adaptable than we imagine.

I want to thank @I who love music aka Terry for telling his story and for always being here with encouragement and @billie48 for telling his incredible story, which I read over and over and over on bad days, as well as all the other people who pep talked me and offered support when I truly felt I was losing my mind.

To the people who are new to this and still struggling, I want to say I see you and I know how much it sucks, but please understand that one day this will just be a bad memory. The brain is an incredible thing, and you can and will adjust. It just takes lots and lots of time and patience.

In terms of what I actually did, well I tried everything but I think the keys for me were:

White noise/background noise. In the first year I found all the white noise type things so annoying that I thought just listening to the tinnitus would be preferable. This was a mistake. With time and patience and trying different things I finally got used to having background noise on all the time. I also had to let go of the idea that I would be able to find a noise that could completely cover the tinnitus. On bad days it can find its way through anything, so really your best bet is to just try and dilute the sound and provide something else for your brain to focus on.

Distraction and refocusing. I'm honestly grateful to tinnitus for forcing me to take on a bunch of new hobbies and social activities. Even when all I wanted to do was lie in bed and cry about tinnitus, I would force myself to do activities, and slowly slowly the interest and pleasure in other things came back.

Understanding that tinnitus is a disorder of attention, and ultimately you are the one in control. This is so hard to accept at first, but it's so so important. The more anxious attention you give to the tinnitus, the worse it will be. That's just a fact. You can make it the main focus of your life, or you can fill your life with other things and allow tinnitus to be an annoying but small nuisance in the background.

Time. Can't emphasize this enough. This shit takes time. You're essentially retraining your brain, and it's not something you can just do. It can take months and years of slowly adjusting to this new normal. But you will get there. I promise!

Love and good thoughts to everyone here.

Lizzy
Xxx

 

Thank you. This is exactly what I needed today.

 

I can agree with this. It took me over 2 years for me. I never liked white noises though. Eventually the noises faded away by themselves.

I wish I had come on here last year to talk about my success. I would have seen the threads on the COVID-19 vaccines and tinnitus.

Unfortunately I didn’t and am now back at the start of a much harder tinnitus journey.

 

You've got this. I promise you, whatever bad feelings you are feeling today, they are not forever. This is just a shit moment in time. X

 

Best of luck to you. I'm sure you can do it again. X

 

Thanks so much for this Lizzy. I'm 1 year 4 months in and life is so much better. During the day even if I hear it (I don't most of the time) I don't care but I still have a few nights per month when I can't sleep, because after a day of not hearing it, suddenly it is there and I can go for a few nights like that with little sleep until I relax about it again. White noise at night doesn't work for me.

Any tips for sleep? It's up and down at the moment and if I could conquer that I'd consider myself habituated.

Thanks in advance.

 

Hi Mags, it sounds like you're doing really well for just over a year in, so well done you! I promise you it does just get easier and easier year on year, and you're off to a great start. Just be patient with yourself.

Re: sleep, I found it really important to make sure I was properly tired before going to bed. The worst thing is lying there for ages trying to get sleepy, whilst the sound gets more and more annoying. I used to enjoy getting all sleepy and snuggly and slowly drifting off, but with tinnitus I try just to get good and tired and then hit the pillows. Hope that makes sense!

I had REALLY bad insomnia with tinnitus at one point. That's the thing that made me close to suicidal tbh, so I feel for anyone struggling with this.

The thing that helped enormously with the insomnia was getting up at normal time every day, no matter how bad my night, and trying to do my day's activities as normally as possible during the day. This tired me out enough to start to get my sleep back on track.

It also helped with the mental health aspect of it too. Bad nights can lead to bad days which lead to more bad nights. I found it really helpful when someone told me "however awful your night was you don't have to let it ruin your day". I really took that to heart and it made a huge difference.

I did try sleeping medications, and all the usual sleep hygiene stuff, but nothing worked much for me. For me the key was getting into a good routine, getting good and tired, and trusting my body would figure it out.

Good luck to you and hugs.
Lizzy
Xxx

 

Thanks so much Lizzy! I have 2 kids so going to bed was my best part of the day, all snuggled reading... etc. Tinnitus made it rather unpleasant. I also try to find positives during a day after a sleepless night and carry on as normal. I take a small dose of anti-anxiety meds before sleeping but it's not really doing its job anymore. I'll get there eventually.

Your tips are very useful. For example I now relax in the evening in living room instead. I have a water fountain for my cat that masks the tinnitus so I read there, watch films and go to bed to sleep. Some days it's all fine but when I get one bad night, I go into a vicious cycle and sleep little for 2-3 nights straight.

For your chronic pain (I've been through this myself), I recommend Curable app. They're on Instagram too and it's great for dealing with chronic pain. Check it out!

Thanks again for your kind message.

 

@Mags, yes, I know what you mean about looking forward to bed and snuggling! You're doing all the right things though, with the living room and the water fountain etc. I never thought I could feel relaxed again after tinnitus, but it really did happen eventually. I found that the bath was a good place to relax as well - the hot water pulls you out of your head and into your body, and little things like the crinkly noise of the bubble bath would help distract from the tinnitus. You can of course play music there as well. I can now relax in bed like I used to - I really look forward to going to bed and getting all cozy, which is something I really never thought would happen again. It will happen for you too eventually, and in the meantime there are other ways to unwind.

Honestly you're doing so well and you should be really proud of yourself. It's all about taking control of the situation and finding ways to manage things. As long as you keep having a positive, problem-solving mindset you'll get there.

Thanks so much for the tip re chronic pain - it's really good to hear from others who have been there. I actually downloaded the Curable app but I didn't stick to it. It's great to hear that it's worked for others - I'll definitely give it another try!

Lizzy
xxx

 

Thank you @Hotspur2931 for the kind words and that my story has helped you in some way towards your recovery. Yes it will take some time to get better. It took me 3 years. There is no overnight miracle in this journey. It takes patience and helpful strategies. Congratulations and thank you for willing to share your success story.

 

Hi @Mags, is your tinnitus still reactive?

 

@IntotheBlue03, it is not anymore. It became reactive along with hyperacusis 3 months after first onset. I believe it happened as I was experiencing high anxiety and sleep deprivation in those first 3 months. I ended up going on meds when things were bad and I was forcing myself to listen to sounds which at that time I found scary and very loud e.g fridges, air con, etc. It was the most difficult phase for me. But it passed after a couple of months thankfully.

Now I'm left with mild/moderate tinnitus that I hear when there is no background noise at all. I hope this helps

 

I've had a spike-y week and needed to read this. Thank you for taking the time to write such a great post!

 

Thanks @Mags, this helps very much and I am so happy for you that the difficult phases have passed. I’m 2 months in and severely reactive with sound sensitivity (not pain), here’s to hoping months 3-6 will show some improvement. To be able to mask would be a dream come true.

Just curious, what meds were you on and did they help with more anxiety or tinnitus?

I’m on Grandaxin and still trying to break out of the daily panic attacks.

 

You are an inspiration and you've helped so many people. Hope you are doing ok. X

I remember you saying it took three years. That's what gave me hope when I was one year and two years in and felt like I was making no progress.

 

@IntotheBlue03, I forgot to mention but mine was reactive for a while too and I had mild hyperacusis. It was terrifying but it passed. It was a real mental battle, and as @Mags said, exposing myself to the sounds in small amounts.

Happy to write more about that here if it would help. X

 

@Hotspur2931, it sounds like we went through a similar experience!

@IntotheBlue03, when I reached my lowest point, I went to a psychiatrist who put me on Sertraline, Pregabalin and Klonopin (all small doses). I know that there are a lot of horror stories about taking benzos but in my case it was Klonopin that helped me sleep, calm down and face my fears. I got off Pregabalin and Sertraline long time ago and still take a very low dose of Klonopin before going to sleep. Hopefully not for much longer. I've actually read on this forum that Klonopin helped someone with hyperacusis. It just slows down your brain if you're an anxious type.

I hope this helps. Stay strong and believe it can and it will get better. Hugs.

 

I understand you are extremely worried, and I do feel you as I've been where you are now before. But 2 months is a very short time, and you will improve with time, I'm positive.

The improvements will normally begin once you start to manage to feel the situation being less intrusive. When you don't try to fight it, control it and monitor it 24/7.

The first 6-12 months are definitely the worst. Once you will be able to somehow let go, and letting your mind drift off to something else/focus on something else, things will slowly feel better. Even the reactivity and centralized tinnitus.

 

Thanks @MindOverMatter. That’s good to hear. I keep going in cycles of panic that I hope will break soon. I honestly feel that’s worse than the tinnitus at this point. I honestly feel like the tinnitus would be very low without the reactivity and since I’ve spent nearly 2 months not being able to mask I hope that counts toward habituation somewhat because I’ve been forced to listen to it 99% of the time. Here’s to hoping months 3-6 are less painful.

And you are correct, in the far and few moments in between when I have been calm it seemed more manageable.

 

Hi @Hotspur2931, yes, that would be great if you could share more of your experience here. I am hoping to compile a list of success stories around reactivity to read for inspiration daily so that would be wonderful if you don’t mind. I know I have sound sensitivity (no pain) so mine is a case of mild hyperacusis as well so I’m hoping the reactivity of my tinnitus is tied to the hyperacusis so if that improves, maybe the reactivity will reduce as well. Considering Keppra as a medication for this reason as well.

 

@Mags, that is really good to hear. Thank you for sharing that! I too have Klonopin but hated the way it made me feel the first time I took it even though it greatly reduced my tinnitus. Grandaxin is also a benzo but supposed to be a safer option. I will absolutely keep that in mind about the Klonopin though. Considering Keppra to see if it has any affect on my mild hyperacusis/reactivity as well.

Thank you again. All of these inspiring stories are exactly what I need at the moment.

 

I have taken Clonazepam for a little over a year. I only take .5 mg at night and a very small amount of Zolpidem (2.5 mg). I take 300 mg to 600 mg of Gabapentin which is being taken to help while I reduce the amounts of these medications. The Gabapentin may sound like a lot but I know someone who takes almost 4,000 mg each day. My sleep is still hit or miss but I do go for five nights of decent sleep before I have a tough night.

 

Ok, this sounds similar to mine. I didn't have pain either, just a load of weird noises. I'm not even sure what the correct word for it is.

It came on in about month 5 I think, and only lasted a couple of months. It kind of came and went in that time.

The craziest thing was how ordinary sounds would become distorted. Any kind of rustling sound would come out like a high pitched eeeee. So the wind blowing in the trees, my feet crunching on grass, food sizzling in the frying pan, my clothes and bedsheets rustling. I remember at one point even my pee landing in the toilet sounded really loud and high pitched! It got really crazy at one point with so many sounds setting me off. The noise of cars approaching, the sound of the extractor fan in the bathroom, just so many things.

At one point I got SUPER anxious about cooking because there were so many kitchen sounds that would set off the weird distortion.

Oh and it was really hard to mask because all the masking tracks would set off the sound distortion as well.

Another thing I noticed was that normal background sounds would sound extra loud. For example I was at a cafe and the noise of the fridges holding the food was SO loud, I could hardly concentrate on anything else. I kept wondering, isn't anyone else bothered by this racket?!

The final thing was that loud noises like the blender or power tools would temporarily worsen my tinnitus. I would get increased volume and extra tones, and it was super scary.

The thing that helped me was understanding that it was my brain overreacting, rather than any actual damage to my ears.

Some people with hyperacusis get really paranoid and start overprotecting their ears, and that seems to make it worse. Definitely do protect your ears when using power tools or going to gigs - that sort of thing. But for normal everyday noises, try not to make them the enemy.

I had to force myself to just carry on as normal and not let the weird noises freak me out. Just keep exposing yourself and your brain will eventually calm down. It will pass. It does for pretty much everyone.

I did find that a variety of sounds could help, so I wasn't focusing on just the ones that were bothering me. So try putting on music or a podcast. Open the windows to let in outside noise. That sort of thing. You have to desensitize yourself. And NEVER let tinnitus or hyperacusis dictate how you live your life. Keep socialising, eating, doing hobbies, etc, even if it sucks. You don't want to let your brain focus on tinnitus and hyperacusis as the main things in your life.

Eventually the noises got a bit less crazy, and I taught myself to just ignore them and not panic. From time to time, when I was stressed, they would come back, but if I ignored them they would go away pretty quickly.

These days my tinnitus is just a quietish high pitched electric buzz. I don't get tones and I don't get any sound distortion. The occasional loud noise doesn't bother me. I carry earplugs so if I'm somewhere VERY loud like a bar or a concert (or sometimes the London tube lol) I can use them. But honestly it's hard to remember to use them because I'm really that unbothered by noise these days.

I hope that helps. Just let me know if I can help you with anything else.

 

I agree with this. Even though how hard it felt, and how miserable I felt, the alternative was even worse. It didn't make me feel better isolating and focusing even more on why me, what if, how awful it was, and so forth. The effect of doing this is usually quite the opposite = worsening.

When the wind blowing, rustling trees, rain, waves, everything and anything felt annoying (even just moving the body at one point), personally I reached a point where I had to start to force myself looking forward (within boundaries). I felt lousy and annoyed; reactivity and distorted sounds all the time; but with time it became better... very slowly. Linear with the anxiety lowering.

But the process itself is anything BUT linear, with many setbacks along the road. And days where you feel you are back to square one. We have to keep going, and not give up.

 

Hey @Athens, this sounds like you are on the Schulman Protocol. How much has it reduced your tinnitus?

 

Hi @Mags -- Poppy Seeds (?)

 

I am familiar with that protocol, but Gabapentin was prescribed to me to help with tapering down the Clonazepam. It does not seem to impact my tinnitus or hyperacusis but I am asleep after I take them. I am going through a tough time with my sleep right now but I still get three to four hours (was getting between five and six).

 

Wow I am sorry to hear it’s not having an impact on tinnitus for you but hope it continues to improve sleep. Just curious but do you have head tinnitus or ear tinnitus?

 

I am not certain of the difference, but I believe that I have ear tinnitus. What is head tinnitus?

 

It is possible that it lessens the tinnitus somewhat. It does not, however, make a noticeable difference. I noticed a decrease in my tinnitus a week ago on a weekend night and I credited turning up the volume on my sound generators. It has not make a difference since then. It is hard to gauge whether the tinnitus and hyperacusis are better or worse on a day to day basis.