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

Very much this.

In addition - not all brains (/people) are alike.

Some will handle tinnitus better than others. I'm not naive enough to say that my brain is ill equipped to deal with something like this.

Even before tinnitus I have always been an anxious person. I needed earplugs to prevent me from focusing on a dog barking 5 houses further, while my girlfriend was just able to lay down and not be bothered by it (I was literally sitting awake waiting for the dogs to start barking).
Very much a genetic trait in my case. My dad does the exact same thing with the loud neighbours... my mom isn't bothered.

In general, and I hope people don't mind me saying, I estimate that the average person on this forum shares some of these traits (that make it harder to deal with tinnitus).

Disclaimer: I hope I don't have to explain myself , but I will anyway. In no way of form I'm stating that tinnitus is a minor thing. That's not what I m saying. I'm just saying/reasoning that some people will be able to progress faster in making their brains forget about it.

 

I think you’re right, and I think initial reaction to tinnitus is a massive factor in how quickly you learn to cope with it. Or not cope with it, because that’s what we all want isn’t it, a life that doesn’t feel burdened any more so not feeling that you’re ‘coping’ is to me the goal, the goal is to just feel like you’re living your life.

I think if we keep telling ourselves we are safe and give it time, loads and loads of time, then maybe we will be fine. Also what I find helps is not questioning your experience, hear it but don’t think about it. Experience it and it’ll fade from your awareness because it’s not important.

 

Agree, the progress speed will definitely vary per person. What I found is that once my brain learned to filter out tinnitus, it got better at filtering out other things too. I am now able, more than ever before, to ignore external signals that are not important.

 

Feel free to share (practical) tips - as silly as they may sound - that enabled you to start filtering out tinnitus (and the other things), if you have them.

 

@Ben Winders OK I will soon.

 

Most definitely. I was already a very anxious person pre-tinnitus. Like you said, I’d speculate that most members on this forum suffered from greater anxiety, before tinnitus, compared to the general public.

 

@Ben Winders, as promised:

What best worked for me was allowing myself to listen to the sounds. Because in the end, what you are trying to achieve is for your brain to get tired of listening to the sounds.

So practical tips:

Allow yourself certain moments in your daily routine to take time and listen to the sounds. While doing so, do everything you can do to relax, but most importantly, breathing techniques. You can find a ton of info on breathing techniques on the Internet.

What also worked for me was to not skip on anything. I just did everything I did before tinnitus. This helped building and maintaining a confidence that I would win, not the tinnitus. It was very hard at times but every challenge overcome boosted my confidence.

Lastly I would say that not masking or masking as little as possible was also one thing that allowed my brain to adapt more quickly. I think it would have taken longer if I had masked more. At least, that is what I believe.

Hope these tips help!!

 

Don’t ever think this is forever. I was talking to one of the nurses from the crisis team and saying how depressing it is to think you’ll be dealing with this forever because that’s what the doctors and audiologists say and she said ‘How do they know? Nothing is certain, and being an expert in your field doesn’t make you able to predict the future.’

I do love a bit of optimism.

 

Hi Vicki,

I have been reading your posts/this thread with interest - and admiring your courage in approaching your problems and dealing with them. In fact, it looks like there could be a way through this for you (in the sense of the tinnitus resolving itself).

Do you have any update on your progress?

My thoughts are with you.

 

Hey, that’s a really sweet thing to say, this takes more courage than I knew I possessed.

An update... things are wild. The noises have been changing faster than I can keep up with but... I’ve had periods of silence too and they’ve almost been scary because it feels like something is missing. I genuinely have no idea what is going on anymore, I don’t monitor it, I don’t try and control it, I try my absolute best to ignore it but it’s so exhausting.

Another exciting development is the exploding head syndrome type of experiences I get before going to sleep are off the charts now, the noise in my head is so loud I actually feel like it’s going to burst my eardrums. I can feel it coming up from the base of my skull/brain and through to each ear and I’ve never heard anything so loud in my life. Happens about 5 times a night now. So that’s horrible. I’m not scared of it though, I’m not scared of any of this anymore, I’m just tired of it. I am so tired of this life that’s like some crazy hallucinogenic experience. I really don’t think that any of this is hearing damage, I think the emotional centre of my brain has imploded and is creating the noises and I have no idea how to reverse that process.

ENT have referred me to neurology so will see how long that takes. I genuinely don’t know what the future is going to hold because getting through one day is fine, but is this a realistic way to live for the rest of my life? Still not sure, because even though the anxiety and all that is gone, I’m still acutely aware of everything I’ve lost and I don’t know if I’ll ever get over that. I can’t get my head around how to live my life without ever being fully ‘here’ because of all the noise. I really struggle to accept an impaired life, especially with something that affects the essence of who you are so intensely and persistently.

I hope things are good with you?

PS. I think it’s an absolute disgrace that there’s no treatment for this and the best they can do is convince you it’s normal. I have an awful lot of anger about this, not directed at anyone in particular because I appreciate that everyone I’ve come in to contact with has helped me as much as they possibly can, but to think of how many people have their lives destroyed by this is awful. But it’s ok, because it’s not fatal.

It’s like I always say to them though, there’s a difference between being alive and living. This is no life anymore.

 

Hi Vicki,

I am sorry to hear about the continued trials and tribulations that you face and endure.

Good news on the moments of silence - that is very positive. Not so good on those intense noises before going to bed. Is it only then that they arise? Fingers crossed for the meeting with the neurologist and any testing they carry out - I really hope it helps you get closer to the source of the problem.

I also think it is great that you do not feel anxiety around your situation - as I said, very brave indeed. I have always (well, for a very long time) had anxiety, and since I have been searching for new anti-anxiety medication that works (as I went on the hypothesis that the anti-depressant I was taking caused the tinnitus), anxiety levels have gone right up - but we all have our symptoms to deal with.

Let's hope that continued research yields some results in the near future. But some people on here appear to have done amazing things adjusting to their tinnitus. It is hard for us to learn how to accept certain limitations or seeing a life move in a direction that was not in our original plans. But we have to let go of those images and expectations. We are who we are, we experience what we do and we do what we can in the circumstances.

Each day at a time. Patience.

Will you let us know how you get on with the neurologist (and keep us posted in the meantime)?

 

Yes, please keep us up to date. I think about you often. I am glad your doctors listen to you.

 

Hey, those noises are mostly at bed time but sometimes during the day I’ll have this weird thing that feels like a bullet going through my brain and leaves me really disoriented. I have absolutely no idea what’s going on and no I’m not anxious about the situation anymore because it is what it is, and if there’s no help then I’m not sure what I’ll do because this is no way to live. I dunno, that’s maybe why I’m not anxious anymore, I accept that this is happening and I also the accept the very real possibility that I may not be able to live with it long term. My life has been completely decimated and every minute I’m here is horrible, but I can hang on a bit longer.

I’m going to see my friend now, he thought I’d done myself in one day when I didn’t answer my phone so has now said that I owe him 3 months of my life to try and get better. He’s coming with me to the neurologist so I can’t pretend that things aren’t as bad as they are. He’s a good man.

 

I wish the hospital had locked me up when I was pacing their ER pulling my hair out at 4am instead of throwing me on my ass out when I said it was tinnitus. Wouldn't have made myself worse. Definitely bias.

It can get so, so much worse.

 

Further update for anyone that wants to know...

I went for acupuncture yesterday, she said she’s never heard of someone with such bizarre symptoms and she’s never seen anyone look as broken as I do. I tried to give a half smile in response but then remembered I was wearing a mask so that was a wasted effort.

Did the acupuncture help? Can’t say, because the more you ask yourself what helps and what doesn’t, the more you’ll be inviting your mind to focus on the tinnitus. She was nice anyway.

From my own experience so far the thing that is saving my sanity is meditation. Genuinely, I would advise anyone to give it a go who is struggling. If you can do it in ‘silence’ even better because it’ll expose you to whatever is going on in your brain and you’ll realise that you can indeed tolerate these sounds/feelings/thoughts. Make yourself a mantra to refocus on (mine is ‘you are doing enough’, it makes no reference to tinnitus and covers pretty much all aspects of life so I find it pretty calming.

Maybe it won’t work for everyone but it’s a suggestion that might help someone.It’s literally saved my life so far.

Another thing that I’ve found helps massively is diet. I eat and drink what I want because I have to believe there’s more to life than defeating my own silly brain, I love food so allowing myself that without any concern about effect on the ridiculous tinnitus is another step towards forgetting about all this wild condition.

Also, I was reading a journal article last night that said the negative association and anxiety is the driving factor in the chronicity of perception. Maybe if I’d realised this sooner I wouldn’t be in the extreme state I am now, so for anyone who is relatively new to this or having anxiety over it, please calm down as much as you can or you can make things so much worse for yourself. I wish I’d really understood that in the first instance instead of desperately trying to rid myself of it, then maybe I wouldn’t have ingrained this so deeply in my brain. What an idiot.

 

I remember a post where you said you can hear your tinnitus over everything. What tinnitus noise did you have that you could hear above everything?

 

Hey, the noise I have that I can hear above everything is the hardest one to explain, it’s like a really sharp, high pitched zap that’s on and off every two seconds. It drives me absolutely insane. Sometimes I swear I can feel it boring in to my brain. If I could get rid of that I’d consider myself cured because the other noises don’t bother me at all.

How are things with you?

 

It's great that you are trying acupuncture and meditating. Still waiting for the outcome of the neurologist appointment. Keeping fingers crossed on that one...

 

Vicki, how do you sleep?

I've had mild tinnitus for 3 months and it then turned into something torturous that is coming from my brain. I think I caused it to myself by feeling anxious about my mild tinnitus. It's been quite bad for 3 weeks now and I'm not quite sure how to reverse it as I can't sleep and am exhausted.

You mentioned you experience silence sometimes. Is this a new development?

I guess I'm looking for some hope. Ha! I've also given up on trying to mask it as I need my brain to get used to it somehow.

Can you silence your tinnitus by putting earplugs in? Mine gets quieter when I do it.

I also wanted to say don't blame yourself for making it worse by feeling anxious. It's unfair to think like that because anyone would get anxious by experiencing such symptoms. It is not your fault! I moved to a sunny Mexico for winter with my family (we live in the UK) to feel better and it got worse 2 weeks after we arrived. Pretty bad, huh.

 

Hey Mags, sorry things have got so bad for you, you sound very much like me, I think I’ve kind of caused this myself by becoming so anxious about it in the first place. How I wish I could go back in time and stop myself even thinking about it!

I’m not sure about plugging my ears, I never do it because I’ve no need to, I can hear this bad boy quite clearly.

But, the good news. Sleeping isn’t an issue, I know that these noises are coming from my own head, they’re not a threat or a risk, I never think about if it’ll get worse or how I’m going to cope tomorrow etc because there’s no point. I’ll get through the day like I do every other day so really, I don’t have anything to fear. There’s loads that I’m sad about, the loss of a massive part of myself and how good life was etc but I guess I sleep because I’m not afraid anymore. I accept there’s nothing I can do to change my day to day reality, it’s horrible and frustrating but I’ll find a way. Or top myself. They’re the only two options in this really so I don’t have anything to fear.

I know I keep going on about it but if you haven’t tried it, please give meditation a go. It’s like mentally detaching from everything and just observing things as they happen without the desperate need to fix things or be anywhere other than where you are right now. I don’t sleep with masking or audiobooks or any of that because if I’m trying to sleep and I can hear the tinnitus over what I’m trying to listen to it winds me up and then I can’t sleep so I just lay in the dark in the quiet. Well, as quiet as it gets anyway and I never have an issue with sleeping. You just have to convince yourself you’re safe. Other senses help too, making yourself feel your body in the bed, maybe some sort of pillow spray or something that you can smell really helps ground you. My Mum bought me a lavender one but I don’t use it because I hate lavender

I’m lying on my bed typing this and is it silent? No, but if I ask myself what I can hear there’s a siren noise in my left ear, this weird electrical surging in the right and the occasional brain zap... but there’s also the cars going past the house and one of the neighbours is doing some sort of DIY so that’s pretty noisy. I can’t control the noises in my head any more than I can the cars driving past or the neighbour doing what they’re doing so I’m not worried. The meditation really helps with the realisation that it’s just a sound you’re hearing, it doesn’t matter where it’s coming from etc. Just let it be and your mind will move on.

So yeah, the silent episodes. They tend to occur when I stop trying to not have tinnitus. There’s probably a lot to be said about that.

P.S. Two of my friends have tinnitus, which I didn’t know until all this started. One has had it 25 years and has a PhD, barely notices it and doesn’t care one bit about it, and the other has tinnitus so bad he has to lip read what people are saying, but he’s one of the loveliest funniest people I know and he genuinely doesn’t hear it unless someone mentions it to him. Silence isn’t everything, and it won’t change who you are. The world was never silent when we were ‘normal’, we probably just didn’t realise it.

Let me know how you get on, I’m always here if you want to talk xx

 

Thanks Vicki. My family are fed up with me. I need to pull myself together. I'm spoiling their time here. I've got 4 year old twins and my mum and husband are here with me. I'm grieving my old life and how great it was even though I used to complain. I need to be hopeful that this will settle overtime, to a more bearable level. My mild tinnitus was quiet rooms only what would I do to have it back now hey! Anyways it really sounds like you've made a lot of progress. Well done. If you aren't scared of it anymore it will get better for you overtime I'm sure about it. I too have friends with tinnitus, 3 of them in fact they all say that it has 0 impact on their lives. So maybe we will get there too. I'm a control freak and a perfectionist which doesn't help!

Take care Vicki! Sending sunshine.

 

Interesting that people can habituate even to catastrophic tinnitus.

 

I think you’re bang on, I think being a perfectionist is a difficult trait when it comes to dealing with this, as if hearing noises that are beyond our control is somehow a flaw. But it’s not. It just is.

Yeah I’d really love for it to get better, but it’s one day at a time isn’t it. I know what you mean about feeling like people are fed up of you, when it’s all you can think about and it feels like it’s the only thing you experience in the day. But it isn’t. I ask myself over and over again what will I do if this noise never goes away and every second of the rest of my life sounds exactly the same? Well, every second of my life won’t be exactly the same because aside from the noise, every second is different, there’s always something else to be aware of. It’s just how to repeatedly force yourself out of your own head isn’t it.

Thanks for the sunshine, it’s snowing here! xx

 

He’s so cool, he’s proper laid back, I had absolutely no idea about any of this until I told him I was suicidal with it. He genuinely doesn’t hear his, he works full time, is a full on party animal and is one of the best Dads I know. He said it’s never bothered him, and I guess some people are like that from the outset whilst some of us take longer to get there, but that’s ok. Everything is possible.

 

It won't be the same... your brain will adapt. It takes time.

In my 20s I had a chronic headache, it went away after 2 years and got to a mild headache stage after like 6 months.

In my early 30s I had some sort of face pain, it got better after a year to just a mild thing. This was all due to stress.

And now in my early 40s I got this. Crazy right. I'm a healthy, sporty type otherwise. But this is why I believe it's got to improve. Brain loses interest overtime. It may not go away completely but it can improve. And I think you're on your way to it because you're now coping well mentally which is the first step.

 

Right, that's why I like these stories! It would be a bit more difficult for me because I have hyperacusis as well, but it sure is encouraging.

 

Hang in there, I’m sure you’re doing a great job of dealing with the crappy things you’re facing and I’m glad you’re looking for the positive stories. I like to think there’s more out there than we realise xx

 

I enjoy your optimism. Everything sure was silent when I was normal and I loved it.

 

I know what you mean, was life better before this? In some ways yes, but it’s not over yet. I’ve read some of your previous posts and I know how much pain you’re in, you said you’d give it to the end of last year and then you’re done.

But you’re still here.

I too admire your optimism, and strength xx

 

Quick update for anyone that’s interested. Tinnitus is rapidly changing, my ears are going nuts, noise everywhere, flickering like someone is switching my hearing on and off all the time, shooting pains and noise through my head.

I went to see private neurologist today, I’m going to try and get my MRI scan over to him today because I work in radiology at the hospital where I had it done, if they only did my ears, the Dr will want a whole head MRI doing because he thinks it could be MS.

If it isn’t, he said it could be related to migraines even though I’ve only ever had one. He was really lovely, it’s just so hard when you desperately want someone to give you this one magic tablet and say ‘yeah those last 6 months of hell? Was only a joke! Take this and get on with your life’.

He’s going to ask my GP to prescribe me Amitriptyline and wants me to be on 100mg a day by the time I see him in 6 weeks.

I genuinely can’t remember life not revolving around trying to fix an unfixable problem.