I Don’t Know What to Do Anymore: I'm Now in a Psychiatric Hospital and Tinnitus Is Crushing Me

I'm always aware of mine too I don't have to look for it. I hear it very clearly over everything.

 

This is normal, and of course that's the worst part of suffering from tinnitus. You manage to think about something else, and then within seconds you think to yourself "what's that noise?" and it all comes back (for the thousandth time) to you.

Hopefully eventually your tinnitus will fade enough for you to be able to think about something else. If it doesn't after 2-3 years you ought to be able to feel a lot better about it.

The first 6 months are the worst, but you shouldn't assume that what you are feeling now is how you will be feeling for the rest of your life. And your tinnitus might even mostly go away! We are used to other health problems (e.g., a cut, a broken bone, etc.) taking days or weeks to resolve. Unfortunately ears take months and years to heal.

 

Sometimes I tell myself it’s just how the world sounds. Sometimes that helps you know. I think dissociating it from yourself can sometimes free up your head space xx

 

Hi Bill, nice to hear from you. This is the worst part for me I think, the monotony of it. The consultant asked me how I’m feeling. I said the same as every other day. Nothing. Ever. Changes. It is like living the same moment over and over again like some twisted, aural Groundhog Day.

I don’t even dare hope that this will end but it’s what my heart is desperate for.

 

Many (most?) people Eventually report feeling better... The word "eventually" is the key word...

 

This is the thing, isn’t it? It’s the waiting for the better times. And with something like this, it feels so so long...

More than anything, I’m bored of it. I’m bored of being stuck in my head and disconnected from life. That’s what gets me the most. The noises can go to hell, there’s nothing left to study or think about them, but the feeling of disconnection never quite seems to lessen. Maybe one day eh xx

 

What happens when you listen to music? Does it help some? Like maybe if you have the volume low to medium on a phone or tablet and listening to music, does that help? It doesn't have to be loud of course. Even if it doesn't completely mask the noise, does it help as a distraction from it?

 

Hey, sometimes it helps and sometimes I can hear it above the music so then I get frustrated because I used to love music. This is one thing that makes me sad about this condition, because you have to become so densensitised to noise, music doesn’t evoke the same emotions that it used to. This whole condition is a being in limbo, trying to figure out what to react to and when to reign yourself in, 24/7. It’s like your intuition and freedom has gone, everything is an effort now. That’s how I feel anyway.

But, I went for a walk today in the forest and I was watching some birds in the trees and I realised I could hear... the birds and the wind. That was all. It was like all the broken pieces came back together for a little while and I felt whole again, I could think clearly, there was no noise, nothing to suppress, it was like being able to breathe again.

Back listening to Satan’s sound machine now but what an experience that was. How life used to be.

 

Well I think it's cool you got some relief.

Maybe yours will go away someday, you never know. How long did the relief last?

My relief when something similar like that happened to me it was like 6 or 7 seconds and I could just hear cars going by but otherwise I hear my tinnitus over cars. I don't like when it rides on top of music.

 

Vicki, that is nice you experience such a relief, however short. But these moments will get more and more. Don't stop doing this. Sooner or later the brain will think "hey there is still a life out there besides tinnitus". Try to find joy amid the pain. It may turn the momentum at some point and slowly recovery will occur and the tyranny of tinnitus will be over. Life is like a big pie with many pieces. Tinnitus is a slice be it a big or bad slice. But there are other pieces for us to enjoy or pursue. I have learned to not do "All or Nothing thinking" as it is a cognitive distortion. So hopefully the bad piece will not ruin all the other pieces. That kind of thinking has helped many getting better, at least emotionally.

 

Quick update, my left ear is now blocked and I have super loud constant tinnitus and pulsatile sounds on that side.

My friend is taking me to A&E now to see if there’s anything they can do. I’m not even anxious about it, just further despairing.

This is beyond a joke.

 

I wonder if you have stapedial myoclonus like me? The pulsatile sounds seem like they might be that. Do yours synchronize with your heartbeat or are they independent of that? If they go along with your heart beat, same rate and close in proximity, then that is something else related to blood flow in your head.

My pulsing sound goes fast, at about 150 to 200 per minute, and so it has nothing to do with my blood flow/heart. The stapedial muscle when it twitches goes fast like mine and the tensor tympani muscle is much slower. There are 2 muscles that can spasm. I think it is all controlled by the facial nerve, a cranial nerve. I just saw my ENT and he confirmed that he thinks mine is stapedial myoclonus. If yours is, don't despair because he told me that it almost always goes away on its own. He in fact has suffered from it in the past so knows how it feels! The doctor I saw does the surgery too where they go in and sever the stapedial muscle and then put in an artificial part. It sounds like a bionic ear!

 

Further update... last night was horrific, there was so many noises, it was all so loud, it was like my mind had disappeared. Terrifying.

But. I lay in bed with my eyes shut, and instead of focusing on the noises I pulled my attention back to my mind, told myself that it’s scary but ultimately it’s a human experience. Deep breaths. Soon enough I was thinking about something else and it was like all the noise had gone. This is the same method I used to work through the hallucinations/delusions I had years ago and even then when they told me that I’d learn to ‘cope’ with them, after a while I didn’t have them anymore, no medication required even though everyone pushed me to take it. I genuinely believe that our brains are capable of so much more than we give ourselves credit for. Our hearts know the way, sometimes we just get trapped in our heads but we can overcome this. It won’t be easy, it’ll take a long, long time and be exceptionally painful but I believe we can.

This morning I got up, did the ironing, ate breakfast and actually bothered to do my hair. I’ve not done any of that for months.

 

This "trick" works for me as well. I usually try to focus on some mathematical problem. Usually either I end up solving the problem or falling asleep. And the noise is somehow pushed in the background.

Sometimes I "use" the noise for my purposes, I imagine that the noise is emitted by a spaceship that I am "driving" across the galaxies and towards exciting adventures. It sounds childish, but it calms me down.

 

Hi Vic, your story sounds so much like mine... 5 months ago I became aware of very faint tone in my right ear. It made me panic so much I got stuck in fight or flight! I have had every test known to man and everything is fine... hormones may be linked, that’s all that they’ve found and that’s based on me keeping a diary around my cycle. I had 4 weeks in November with no anxiety and no tinnitus, it was amazing and I was so grateful... then the anxiety crept in and I was back to square one... I’m meant to be checking into the Priory on Tuesday to get help with dealing with the anxiety.

I’ve got a 12-year-old daughter who I adore. My life was amazing before this happened! Don’t get me wrong, I was under stress through this pandemic like everyone and it could have triggered it! I’ve tried 3 medications and all made it worse... I’m running out of options! Just want to be back to me... and the fact it happened for 4 weeks gives me hope!

So are you off all medication? How long were you in hospital for?

 

I think that’s a really good idea, I think with this you have to explain it to yourself in whatever way works.

Usually mine is ‘my brain is an absolute bitch’.

 

Hey, I was in hospital for 5 days I think, worst experience of my life. I’ve been in them before and the fellow patients in this one were far less exciting than previous stays.

What I’ve come to realise so far is, wanting to be ‘you’ again is pointless, you will never be that person again but at the same time you still are. You may never know what it’s like to live without the knowledge of the existence of this ridiculous condition again, but you are still you. You’re just panicking about what’s happening to you. And I’m slowly starting to see that what’s happening to you is... nothing. Whatever noises your head makes doesn’t change who you are. Yeah it’s not great and I’d switch it off in a heartbeat if I could but I am still me, I just have a disco head now for some reason. We have never been able to perfectly control what we hear in life, but I believe we can regain the ability to choose what we focus on. Once we master that, I think life will be normal again.

I was lying in bed this morning wondering if what I was hearing was a new sound or an actual sound when I realised that doing that is the complete opposite of what I want. I don’t want to care about this anymore, I want to feel like me and have a life so constantly questioning what I’m hearing is the wrong way to go. I never did it before so what do it now? Even if it was a new sound, what can I do about it? What difference would it make? There’s already 5 of them. There’s no point in trying to work this out because you can’t, you’re going to hear what you hear. I tell myself I can’t choose what I hear, but I can choose what I listen to, you know, like we’ve done all our lives? It’s just that it was automatic back then but we can relearn how to do that.

Psychiatric drugs are a minefield, even for people without tinnitus. This is tricky because it’s not a mental illness but the suffering can be. I’ll be honest with you, they’ve prescribed me 100mg Sertraline, 5mg Olanzapine and 7.5mg Zopiclone.

I don’t take any of them. I’m either hard as nails or stupid. Dunno.

One more thing, this morning in bed the noises were ‘worse’ than ever, but I felt more relaxed than I have done for a long time. I just didn’t care anymore and that was nice.

I say ‘worse’ when what I mean is, well, I dunno. There’s no such thing as a good or bad noise I guess.

I sleep without medication or masking noises and I used to have to have silence to sleep. I guess we really can adapt to anything.

 

Vicki, you are beginning to turn around the battle with tinnitus. Instead of fighting it with extreme emotions, you are now more accommodating to the ringing. That is a very important break through. When I was new in a former support forum asking for help and guidance. A member who is a veteran soldier reply "I am a soldier and I do fighting for a living. But when it comes to tinnitus, I have learned to accommodate it instead of fighting it." His wise words moved me so much I began to change my usual negative emotional reactions to every spike. I then focused on mindfulness and CBT to control the fear of tinnitus. The result was quite amazing. Keep up your positive attitude and things will improve. Good luck. God bless.

 

Hey Billie, I think you’re right. Ironically this change has only occurred since it got majorly worse, I think that was the point when I realised we have no control over this, much the same as we have no control over so many of the things our bodies do. It’s the most surreal feeling right now, like it’s there but it’s not?

I was lying in bed last night and started thinking is it louder blah blah blah, stopped myself and asked why any of it matters? I then fell asleep in what felt like silence to me. Whether it was or not is immaterial, I don’t care but in my head, it felt like silence and that’s a feeling I’ve not had for a long long time. This is the most bizarre condition isn’t it?

Went downstairs this morning and all was quiet, of course until I remembered I have tnnitus, then I hear it again. This is such a psychological game for sure, but for now, the fear is gone. I can feel my body again, I can concentrate, I can think. It feels like relief, even though nothing has actually changed. Twilight zone stuff.

 

Yeah, it's a weird phenomenon. I've had tinnitus since I was about 18 years old, 51 now. After some time you learn how to filter it out and ignore it. Like you said, the sound might still be there but if you ignore it then it doesn't matter. You don't " hear" it unless you want to. I compare it to what happens if you are in a crowded room with a lot of different conversations going on. In that situation you are able to tune out all of the other conversation noise and key in on just the one person you are speaking with. Everything else fades away.

 

How loud would you rate yours? Over what sounds can you hear it? I used to be able to tune mine out, but now it's a lot harder. It seems some people are able to keep the same level of tinnitus for a long time, even when they don't take any additional precautions (not saying you don't, I just know people that don't protect their ears even after getting tinnitus).

 

Mine is loud enough that I can hear it over everything really. The shower is about the only place where I can't hear it.

I've been foolish going to concerts without wearing ear plugs. It's gotten worse because of that. I think I'll still go to concerts, but wear earplugs from now on.

I'm just used to the sound, so I tune it out. The problem pales in comparison to my heart failure, so it's easy for me to deal with. I had skin cancer back in 2019 and that seemed like nothing too. I suppose my heart trouble has made me a bit more resilient. You have to toughen up or get swallowed alive.

 

You are right that when people realize it is futile to resist on something uncontrollable that they begin to surrender (figuratively) to the reality and the new normal and then it opens up new chapter in our tinnitus life. We begin to give up struggling with tinnitus or learn to do NOTHING for tinnitus.

Here is one success story of somebody who thinks doing nothing for tinnitus works for him:

https://www.tinnitustalk.com/threads/doing-nothing-worked-for-me.4778/

 

Life is all about adapting. You have to do the things you can and try to not worry about what you can't do and what's wrong with you. Focus on what you can do.

I've learned to tune out my tinnitus. With my heart failure my entire life seems to have changed. I was into bodybuilding and had to accept about 45 lbs of muscle loss. It was hard for me. I also can no longer bodybuild and lift heavy weights because it put too much stress on my heart. No more sets of 495 lb squats.

It's hard at first, but after some time people are able to adapt to the new way of life. You just focus on different things.

 

@Vicki3116 I literally searched for this thread because I had you in my head as "one to check up on"

I must say I'm over the moon to see that you are not doing worse.
I'm deliberately not saying "you are doing better" cause that's the next step... VERY baby steps... it seems mentally you are not doing worse. that's already huge.

This doesn't mean that maybe tomorrow you won't do worse... but then maybe in 2 days you'll be better again and then maybe you ll feel better 2 days in a row, then 3...

Tinnitus is on top of our list right now, until something worse comes along. Sure this sounds like a "cheap" reasoning but imagine you get diagnosed with cancer tomorrow, pretty sure the tinnitus gets downgraded pretty quick to a lower threat level. See also the above poster with heart condition.

It's annoying, for sure, but so is a knee that constantly hurts (I have that too) - but we can live with it. We can do it.

 

Hey, sorry, only just saw your reply. Things are all over the place, the noises are terrible but I just feel kind of numb now.

I saw the audiologist again the other day. As soon as I walked in she said ‘I’m going to tell you now this isn’t going to go away and you need to learn to live with it forever’.

I started crying, explained everything that’s been going on, how much worse it’s getting and yeah I’m not anxious about it now but it’s still ruining my life in ways I can’t even explain anymore. Once I’d explained all that, she said ‘that sounds like water torture’ and I said I KNOW. I told her all about the explosion sounds in my head, the painful shocks across the middle of my brain and how it makes my eyes roll and makes me feel disoriented and she said ‘why the hell hasn’t anyone referred you to a neurologist?’.

So, she’s going to get one of the ENTs to refer me to a neurologist because she thinks I may have some sort of seizure disorder and she’s referring me to a Professor who specialises in tinnitus one city over because, in her words, ‘I can’t help you, this is exceptionally extreme for tinnitus and I think you need the big leagues’. So that’s where we are at at the moment. Life is all so surreal right now. Like in my heart I feel much more calm but my head is an absolute war zone.

This can’t be forever. This is a joke, right?

 

Good.

I mean good that you are still fighting to at least understand what is going on.
I'm doing the same thing. Still dropping a lot of cash on more tests (going to the Brai3n institute in Belgium now) to understand what is going on. (Extended audiograms etc).

Important though is that I realize that when I've reached the end of possibilities I will need to let go and accept. It's ok to fight but when it becomes apparent that fighting is not possible, the focus of the fight will need to shift to 'acceptance', which is going to be the biggest fight in the end.

I am convinced though that we're bound to get help from science. So many meds in clinical trials. Surely one of them will be able to help us a little bit. Giving up is not an option.

 

I think this pretty much sums up tinnitus, it’s the knowing what to let go of and what to focus on and somewhere in our brains, that process has got a bit mixed up. It’s such a hard thing to get your head around, that no in itself it isn’t dangerous etc but how something so benign can become all consuming and feel like it needs a resolution. It’s a really weird paradox isn’t it, trying to come to terms with something so devastating and life changing even though you’re the same person.

I often think to myself what are you actually bothered about here and sometimes I can’t even find an answer, I just don’t feel ok with myself anymore but I don’t know why. It’s weird to think that life can feel so drastically different because it doesn’t ‘sound’ the same, but before all this, we never gave it a second thought. Like as I’m writing this the tinnitus is distracting me, but the car that just went past or the bathroom fan don’t. What a bizarre situation because both are just sounds. I’m not downplaying any of this, just trying to look at it objectively and work out why we care so much when so many sounds are already out of our control.

 

Very encouraging, thank you for the positive words.

twa

 

When I was in the early stages, I read many stories on this forum. The message that made a lasting impact was that whether you try or not, in the end your brain will lose attention for tinnitus. The tricky part is that this process moves so slowly that you will not notice differences on a day-by-day or week-by-week basis. Because of this, it seems like nothing is changing and therefore you think it will never change. It is also a non-linear process, meaning that for every two steps forward, you might go back one step. But from my own experience and from the many many many stories I read here, I am convinced that all brains do this, they just loose attention and the tinnitus will fade into the background, going totally outside of our sphere of awareness.