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

[Vicki3116]

Does anything mask your tinnitus?

Hey, no. It will randomly shut off for a few seconds and oh my days, it's like coming back to real life, but other than that it's there all the time. There's so many different noises and sensations I can't describe what I hear most where etc, but there's always the sensation of noise wherever I am and whatever I'm doing.

Actually no, thinking about it, a few months ago I played some cricket sounds at full volume in my house and that just about masked it. It was so weird to not be able to hear it, my whole body just relaxed and I felt so peaceful. Never done it since though. I guess knowing it's an option is enough. If things get real bad again, I'll put that on and have a beer. It's always nice to have a back up plan isn't it xxx

 

[billie48]

Vicki,

You are courageous to take on your nasty tinnitus and still be sane enough to work. In my success story I mentioned a lady Zoe Cartwright who became totally deaf at young age 15 and then her loud tinnitus became unmaskable (as she can't hear a thing). She struggled with it at first but decided to accept it. Brave girl. She managed to even make it to university. She made a short tinnitus film posted on YouTube. When interviewed she said she loves her life despite her unmaskable tinnitus. She treats tinnitus as a slice of her life which has many other slices she likes. You ladies are brave and resilient!

 

[Vicki3116]

Vicki,

You are courageous to take on your nasty tinnitus and still be sane enough to work. In my success story I mentioned a lady Zoe Cartwright who became totally deaf at young age 15 and then her loud tinnitus became unmaskable (as she can't hear a thing). She struggled with it at first but decided to accept it. Brave girl. She managed to even make it to university. She made a short tinnitus film posted on YouTube. When interviewed she said she loves her life despite her unmaskable tinnitus. She treats tinnitus as a slice of her life which has many other slices she likes. You ladies are brave and resilient!

Hey Billie, nice to hear from you. It's like I've said earlier on I guess, no matter how you feel, facts in life still remain. These weird experiences don't change the fact I need to pay my mortgage and if I don't work I can't do that so I better suck it up and go to work

When everything is falling apart, it's the facts in life that see us through. We are resilient, we are loved and we are capable.

How's things with you? xxx

 

[billie48]

Thanks Vicki,

Slow recovery from SSHL. I am keeping it positive that better days are ahead.

 

[Vicki3116]

Hi, just a little update for anyone who's interested. I have been back at work for around a month now, working full time again and doing just fine. That's not to say the tinnitus has magically disappeared, that's definitely not happened and my right ear is doing some proper weird stuff, think I may be losing my hearing that side but I can't even be bothered worrying about it. Life definitely isn't what it was before, I feel exhausted a lot of the time, I can't concentrate or remember stuff as well as I used to, I don't enjoy life nearly as much as I did, but I don't worry about any of that anymore. It's just become more of 'my brain is such a pain in the ass' and that's it.

I read this thing about this guy who has tinnitus and his advice was 'if tinnitus is killing you, let it. More specifically, the part of you that cares'. I think it's good advice. I know my brain, and by proxy, my sense of self aren't the same anymore but I can't keep caring because it's too painful. If I am indeed going to live in this altered state forever, then I want to be as happy as I can with that because constantly wanting more is only going to affect me, the world will carry on with or without me.

I hope you're all doing ok and managing to find some sense of peace amongst all this noise xxx

 

[Adaś]

Hi Vicki,

It is great to read you are doing better. Many thanks for 'if tinnitus is killing you, let it. More specifically, the part of you that cares'.

At first glance, this looks like horrible advice, but it is not, and it actually works, at least it worked for me too. Unfortunately tinnitus has changed my personality, I am simply not the same optimistically looking into the future person anymore.

Also, I feel exhausted/tired a lot too. I sleep quite a lot, and often need naps during a day. And I do not enjoy life nearly as much as I did. This is also caused by the fact I don't enjoy listening to and playing music anymore. Well I do listen to music, but it is not the same passion as it used to be. Music used to taste sweet to me, now it is bittersweet. Finally the whole subject of protecting myself from worsening, carrying and applying earplugs when something loud happens is sucking most of the pleasure from activities outside. I used to be city guy, enjoying walking trough big cities, observing people. Now I spend my time outside in quiet places like woods.

Hugs!

 

[Vicki3116]

Hi Vicki,

It is great to read you are doing better. Many thanks for 'if tinnitus is killing you, let it. More specifically, the part of you that cares'.

At first glance, this looks like horrible advice, but it is not, and it actually works, at least it worked for me too. Unfortunately tinnitus has changed my personality, I am simply not the same optimistically looking into the future person anymore.

Also, I feel exhausted/tired a lot too. I sleep quite a lot, and often need naps during a day. And I do not enjoy life nearly as much as I did. This is also caused by the fact I don't enjoy listening to and playing music anymore. Well I do listen to music, but it is not the same passion as it used to be. Music used to taste sweet to me, now it is bittersweet. Finally the whole subject of protecting myself from worsening, carrying and applying earplugs when something loud happens is sucking most of the pleasure from activities outside. I used to be city guy, enjoying walking trough big cities, observing people. Now I spend my time outside in quiet places like woods.

Hugs!

Hey, nice to hear from you. I completely get where you're coming from, it can be incredibly difficult to step back and realise exactly how much you've changed. I think living with a constant experience that ultimately you have to deaden yourself to will change you, in my experience happiness is much more momentary now and never truly whole because somewhere inside I'm aware that I've got this to deal with everyday. Out of everything I miss the most, I think it's the complete and utter freedom that silence within yourself affords you. Tinnitus can pull at you in so many ways, to varying degrees on different days.

All we can do is keep hanging in there with hope that one day the music, and life, will be sweet once more. We are doing our best, and that's something to be really proud of. We may be doing things differently but we haven't given in xxx

 

[Peter Q]

Hi, just a little update for anyone who's interested. I have been back at work for around a month now, working full time again and doing just fine. That's not to say the tinnitus has magically disappeared, that's definitely not happened and my right ear is doing some proper weird stuff, think I may be losing my hearing that side but I can't even be bothered worrying about it. Life definitely isn't what it was before, I feel exhausted a lot of the time, I can't concentrate or remember stuff as well as I used to, I don't enjoy life nearly as much as I did, but I don't worry about any of that anymore. It's just become more of 'my brain is such a pain in the ass' and that's it.

I read this thing about this guy who has tinnitus and his advice was 'if tinnitus is killing you, let it. More specifically, the part of you that cares'. I think it's good advice. I know my brain, and by proxy, my sense of self aren't the same anymore but I can't keep caring because it's too painful. If I am indeed going to live in this altered state forever, then I want to be as happy as I can with that because constantly wanting more is only going to affect me, the world will carry on with or without me.

I hope you're all doing ok and managing to find some sense of peace amongst all this noise xxx

Part of the problem with tinnitus is that we become too sensitized to sound, too aware of sound and too focused on it. I would guess that many tinnitus sufferers are obsessive-compulsive people by nature anyway. Perhaps part of the solution is to lessen the power the tinnitus has over us by lessening the significance that sound has for us in general. The fear factor associated with sound is therefore diminished.

 

[PortugalTheMan]

Part of the problem with tinnitus is that we become too sensitized to sound, too aware of sound and too focused on it. I would guess that many tinnitus sufferers are obsessive-compulsive people by nature anyway. Perhaps part of the solution is to lessen the power the tinnitus has over us by lessening the significance that sound has for us in general. The fear factor associated with sound is therefore diminished.

I think it's better for me to be a little compulsive and keep it from getting worse. I think so as it is already too loud.

 

[Vicki3116]

Part of the problem with tinnitus is that we become too sensitized to sound, too aware of sound and too focused on it. I would guess that many tinnitus sufferers are obsessive-compulsive people by nature anyway. Perhaps part of the solution is to lessen the power the tinnitus has over us by lessening the significance that sound has for us in general. The fear factor associated with sound is therefore diminished.

I 100% agree. Throughout all this I've often felt lost amongst the noises, and maybe this is what it all comes down to. We have got so wrapped up in what should be background noise/sensations that we've lost ourselves. I think that's where the true suffering comes in, not the noises themselves. It's the inability to continue with the sense of self we once had, but what if those people could re-emerge through the noise? Wouldn't that be something? What if we stopped living our lives based on what we are hearing and instead started living for what we are thinking and seeing and feeling? What if that's where the freedom lies?

What if this thing that has almost destroyed many of us could actually become inconsequential? Rebuilding your sense of self takes time, a lot of time, but I believe it can be done. We aren't tinnitus with people, we are people with tinnitus and it's important to remember the person always comes first, even in a sentence.

I get that some people feel the need to protect themselves in order to prevent worsening, but everyday noise won't harm you. It's never really occurred to me to try and protect my ears from anything because this was straight up bam your life is ruined. Didn't have a lot to lose from there I guess. I understand the desperation people feel though to prevent things getting worse, this isn't an easy thing to live with.

 

[Sentinel]

I 100% agree. Throughout all this I've often felt lost amongst the noises, and maybe this is what it all comes down to. We have got so wrapped up in what should be background noise/sensations that we've lost ourselves. I think that's where the true suffering comes in, not the noises themselves. It's the inability to continue with the sense of self we once had, but what if those people could re-emerge through the noise? Wouldn't that be something? What if we stopped living our lives based on what we are hearing and instead started living for what we are thinking and seeing and feeling? What if that's where the freedom lies?

What if this thing that has almost destroyed many of us could actually become inconsequential? Rebuilding your sense of self takes time, a lot of time, but I believe it can be done. We aren't tinnitus with people, we are people with tinnitus and it's important to remember the person always comes first, even in a sentence.

I get that some people feel the need to protect themselves in order to prevent worsening, but everyday noise won't harm you. It's never really occurred to me to try and protect my ears from anything because this was straight up bam your life is ruined. Didn't have a lot to lose from there I guess. I understand the desperation people feel though to prevent things getting worse, this isn't an easy thing to live with.

I empathize with you so much. I too was in a psychiatric facility and have been down that road.

I read what you posted from your friend's Facebook and that hit me pretty hard. I've been through what is 5 months of desperate wandering hoping something would improve, and then just hoping I could go back to being who I was before all this and I didn't have a clue what tinnitus is. Lovecraft really hit it on the head when he talked about vistas of reality too painful for us to grasp or realize without losing part of ourselves: "but someday the piecing together of dissociated knowledge will open up such terrifying vistas of reality, and of our frightful position therein, that we shall either go mad from the revelation or flee from the light into the peace and safety of a new dark age".

I moved into a new apartment last Fall, and while things weren't perfect I was in such a good spot to really tackle my goals and felt very hopeful about the future. And now I'm all alone and even my family can't help me in a meaningful way other than just what is within their power to do. I feel so divorced from that person I was in November and yet changed by this experience that I'm not sure I'll ever be there ever again. As if that version of myself was dashed to pieces and I was told by some malevolent force to wander the desolate umbral plains of constant fear and agitation in the hope that one day I'd formulate some new version of myself despite what I had lost. I find myself not quite longing for suicide or death but simply a level of oblivion and total ignorance to this horrible thing in my head/ear. To live with it instead of being consumed by it, devoid of all the terrible associations my nervous system has made to it and for it only to be a sound and nothing more. Strip it of all control and cast it out of the realm of importance it once occupied so forcefully.

I'm very grateful that if I do have hearing loss that it's probably only mild and in the extended high frequencies and that I don't have hyperacusis like many here do. Many people on here truly suffer at a level I can only begin to comprehend. Many people experience fading and I'm only a little over 5 months in so I do have some hope. That little thing that is what we cling to and is the final thing to die before all else is lost.

I hope things continue to improve for you Vicki.

 

[OptimusPrimed]

I empathize with you so much. I too was in a psychiatric facility and have been down that road.

I read what you posted from your friend's Facebook and that hit me pretty hard. I've been through what is 5 months of desperate wandering hoping something would improve, and then just hoping I could go back to being who I was before all this and I didn't have a clue what tinnitus is. Lovecraft really hit it on the head when he talked about vistas of reality too painful for us to grasp or realize without losing part of ourselves: "but someday the piecing together of dissociated knowledge will open up such terrifying vistas of reality, and of our frightful position therein, that we shall either go mad from the revelation or flee from the light into the peace and safety of a new dark age".

I moved into a new apartment last Fall, and while things weren't perfect I was in such a good spot to really tackle my goals and felt very hopeful about the future. And now I'm all alone and even my family can't help me in a meaningful way other than just what is within their power to do. I feel so divorced from that person I was in November and yet changed by this experience that I'm not sure I'll ever be there ever again. As if that version of myself was dashed to pieces and I was told by some malevolent force to wander the desolate umbral plains of constant fear and agitation in the hope that one day I'd formulate some new version of myself despite what I had lost. I find myself not quite longing for suicide or death but simply a level of oblivion and total ignorance to this horrible thing in my head/ear. To live with it instead of being consumed by it, devoid of all the terrible associations my nervous system has made to it and for it only to be a sound and nothing more. Strip it of all control and cast it out of the realm of importance it once occupied so forcefully.

I'm very grateful that if I do have hearing loss that it's probably only mild and in the extended high frequencies and that I don't have hyperacusis like many here do. Many people on here truly suffer at a level I can only begin to comprehend. Many people experience fading and I'm only a little over 5 months in so I do have some hope. That little thing that is what we cling to and is the final thing to die before all else is lost.

I hope things continue to improve for you Vicki.

Vicki and Sentinel,

Although I am dealing with a spike/onset of new more intrusive tinnitus myself; take it from my 14 years of tinnitus experience... It can and DOES fade.

My initial tinnitus from 2007 faded to a sound so faint I could only hear it when my head was on a pillow. It was always there, and never truly disappeared, but I would literally only hear it for a few seconds before I went to sleep or if I had to wear earplugs. When it started, it was deafening, but over time I guess my brain tuned it out or the hair cells just calmed down. It got quieter. I am hopeful that my present spike/new tinnitus will do the same, as I'm sure yours will in time too. The brain is super resilient, neuroplastic, etc. Just try to stay distracted, positive and give it a chance to work. There IS life after tinnitus. Trust me.

I understand it is hard now. It won't be like that forever.

These things helped me:

• Improving diet (drink lots of water, limit salt intake, limit sugar intake).
• Daily exercise (cardiovascular is an absolute must, it will help you physiologically and psychologically).
• Immerse yourselves in hobbies (this is about staying busy and not focusing on the tinnitus.
• Limit stress as much as possible.
• Get as much sleep as possible.
• Try to enjoy the things in life that you still have.
• Try not to place yourself in quiet environments too much. I mean, if it doesn't bother you too much you can sort of let the quiet of a room make your ears ring a bit and you might think this is just a sound, it cant hurt me. But you might not be ready for that yet. Give it time.
• Use sound therapy like pink noise or white noise. Use whatever works best for you. Try to keep the volume just below the tinnitus rather than drowning it out. I mean if you need relief on a particular evening then turn it up and drown it out, but long term you want to get used to the sound.
• Avoiding loud sounds for a while. Carrying earplugs if you're going to be placed in an environment where there could potentially be damaging sounds. Your ears are in recovery, try to protect them, but don't go overboard with it.
• Consider avoiding this forum for a while. Try to "forget about the tinnitus". I know this is easier said than done.
• The future IS more hopeful now than it ever has been. When I first developed tinnitus in 2007 there was next to nothing for treatment or research with tinnitus and hearing loss. Hearing regeneration was just an idea. But now it's actually happening. I really believe that treatments are just around the corner. And there are also great gains in understanding being made about the brain science behind tinnitus (fMRI mapping of tinnitus, Susan Shore device, Neuralink, etc). The future is hopeful.

In order to get better you have to envision yourself better in the future. That is key. Although there is a physiological cause for tinnitus, it is wrapped up with anxiety, stress, and the nervous system. So try to calm your nervous system as much as possible and you will see improvement into the future. You may be one of the people who has their tinnitus spontaneously disappear, or at least fade off into a lesser hiss or quieter tone.

Stay positive and believe you will get better.

 

[Peter Q]

I 100% agree. Throughout all this I've often felt lost amongst the noises, and maybe this is what it all comes down to. We have got so wrapped up in what should be background noise/sensations that we've lost ourselves. I think that's where the true suffering comes in, not the noises themselves. It's the inability to continue with the sense of self we once had, but what if those people could re-emerge through the noise? Wouldn't that be something? What if we stopped living our lives based on what we are hearing and instead started living for what we are thinking and seeing and feeling? What if that's where the freedom lies?

What if this thing that has almost destroyed many of us could actually become inconsequential? Rebuilding your sense of self takes time, a lot of time, but I believe it can be done. We aren't tinnitus with people, we are people with tinnitus and it's important to remember the person always comes first, even in a sentence.

I get that some people feel the need to protect themselves in order to prevent worsening, but everyday noise won't harm you. It's never really occurred to me to try and protect my ears from anything because this was straight up bam your life is ruined. Didn't have a lot to lose from there I guess. I understand the desperation people feel though to prevent things getting worse, this isn't an easy thing to live with.

I very much agree. Perhaps the most important quality or trait we need to cultivate is courage. Tinnitus can make people despondent and downhearted, fearful and insecure, taking all the joy out of life. Earlier today I was thinking of a favourite poem by Louis MacNeice. In it he says 'but let your poison be your cure'. Here is the whole poem. It's called Thalassa:

Put out to sea, my broken comrades
Let the old seaweek crack, the surge
Burgeon, oblivious of the last
Embarkation of feckless men
Let every adverse force converge
Here we must needs embark again.

Run up the sail, my heartsick comrades,
Let each horizon tilt and lurch.
You know the worst, your wills are fickle
Your values blurred, your hearts impure
And your past lives a ruined church
But let your poison be your cure.

Put out to sea, ignoble comrades,
Whose records shall be noble yet
Butting through scarps of moving marble
The narwhal dares us to be free
By a high star our course is set
Our end is life. Put out to sea.

 

[Óscar PP]

Hi Vicki,

I understand your reasons for not wanting to take medication but there is more to it than you think. When tinnitus is severe, it can have a serious impact on a person's mental and emotional wellbeing. The meds are not meant to remove the noises but to provide a safety net so you don't become too down.

While I agree that some meds are helpful to overcome certain aspects of what tinnitus brings to a person's life (for instance in my case Mirtazapine literally saved my life since without it I wouldn't be able to sleep), I really think that there's no way a GP can know for sure which type of AD can work best for you and which can in turn wreck you more than you already are...

There are more than 15 types of ADs... It's almost like a shot in the dark.

 

[Michael Leigh]

There are more than 15 types of ADs... It's almost like a shot in the dark.

I agree with you that no GP will know how a person's tinnitus will react to an antidepressant but there are very few treatments available when someone is suffering from loud intrusive tinnitus. Whilst the antidepressant won't directly lower the tinnitus, it acts as a safety net so a person doesn't become too down. If stress and anxiety are not managed, depression can soon creep in. Under these circumstances people have been known to bring about their own demise.

Sorry to sound so sobering, but that is what tinnitus is capable of making a person do when it's severe and unrelenting.

Michael

 

[Sayeed]

How are you doing? xxx

Here is another update Vicki. I got my MRI done.

It says:

There are multiple small foci of signal alteration scattered throughout white matter. Prominent for patient's age which are non specific. These are often pathological but can be associated with migraines, cholesterol, hypertension, vasculitis. Clinical correlation would be helpful.​

I'm worried it's MS. I have nerve pain in my foot. And since tinnitus hit, I got back, neck and shoulder pain too.

I'm just trying to control my anxiety but it's been a bad week since I got this report.

How are you doing?

 

[Momma28]

Hi, me again, I'm just wondering if people generally get back to feeling like themselves? Does happiness return? It seems as though I'm going to feel burdened for the rest of my life and the loss of that free, happy feeling is probably the worst thing about all this.

Any reassurance would be great, thanks.

Yes! I developed tinnitus while pregnant and it was horrendous. I heard it over everything! I couldn't sleep and it affected my mood.

But 4 months after my baby was born, the tinnitus reduced in loudness!

You will learn to love laugh and be happy again! I wasn't so sure either but I can say after the most difficult first year of having tinnitus, it does get better! It will be 3 years in December. I worry most days about loud noises etc and try to protect my ears as much as possible!

I've not read any further in your thread after this post as I just wanted to comment on this one post for now. Sending you love xx

 

[Momma28]

Every single person on here knows how you are currently feeling.
I told my girlfriend these exact words: "I'm sorry, I will be gone for a year or two, please stick around because I will come back".

This is exactly how I'm feeling. I am here but I'm really not. Every single thing that used to be easy and carefree is now covered in fear/tinnitus. Exactly as how you describe it. The careless life is just gone.

BUT - two important things.

First: I am absolutely certain that there is a way to live with this as so many people have shown. Yes - for me it is worth "checking out" of the life I used to know for a year or 2 and try to find a way out of it and become "normal" again.

Second (and most importantly): we are SO CLOSE to finding a potential cure for this (so many different meds / devices / pathways coming out in the next year and years to follow) that it would be a pity (for lack of a better word) to give up now. Imagine one gives up now and in half a year something would have become available that would have cured (or seriously diminished) the tinnitus... now that would be a double tragedy.

Hang in there.
Remember that when you wake up in the morning someone like you fighting the same fight is waking up too. At 8.00am or at 8.05am - you are not alone. As my girlfriend said "This is going to be the fight of your lifetime but as a third party observer, I just know you will find your way out of this. It just doesn't look that way for you because you are the one carrying the burden".

Because we have to live with it, we fail to see the bigger picture - which is understandable. That's why we have to trust on the people around us that are able to have the helicopter view.

Love your post. So inspiring, even now to me 3 years in so thank you x

 

[Vicki14]

Hi, this is my first time posting and I could really use some support.

Tinnitus started in August for no particular reason, started as a random beep in my right ear but then became a super high pitched noise every second on and off, on and off. It's been 4 months of this now and it's mentally torturous, there isn't a minute of the day I feel ok and it's progressed so much so that I can hear it over everything. It's like electricity running through my head every couple of seconds which makes concentration near impossible. There isn't a second of the day that I don't suffer with this.

I work for the NHS and I've tried to go back to work 3 times since this started and haven't been able to. It's become so intrusive and debilitating that I'm now in the psychiatric hospital attached to the hospital I work in.

I can't believe that such a debilitating disorder exists as 4 months ago I was fine and now my life is in tatters. The effect this has had on my life is unbearable, I literally don't enjoy anything anymore and I struggle to face another day of it. The anxiety reaction to the noise has long gone but the despair and loss of sense of self is extremely prominent. This doesn't feel like a life anymore, it's just surviving day to day and praying to wake up from the most horrendous nightmare.

I really don't know what I'm asking for on here, just some hope that it won't always be this way? I saw an ENT who said it'll 100% go away but it's got many times worse since, my parents took me to the Tinnitus Clinic in London but they said they couldn't help me because the noise is too erratic and loud.

I just feel crushed. Every day I'm amazed at how a noise can ruin a life.

Any help would be much appreciated,

Vic

Hi Vicki, I'm so sorry to read of your distress an truly understand. How are you now? xx

 

[Vicki14]

Every single person on here knows how you are currently feeling.
I told my girlfriend these exact words: "I'm sorry, I will be gone for a year or two, please stick around because I will come back".

This is exactly how I'm feeling. I am here but I'm really not. Every single thing that used to be easy and carefree is now covered in fear/tinnitus. Exactly as how you describe it. The careless life is just gone.

BUT - two important things.

First: I am absolutely certain that there is a way to live with this as so many people have shown. Yes - for me it is worth "checking out" of the life I used to know for a year or 2 and try to find a way out of it and become "normal" again.

Second (and most importantly): we are SO CLOSE to finding a potential cure for this (so many different meds / devices / pathways coming out in the next year and years to follow) that it would be a pity (for lack of a better word) to give up now. Imagine one gives up now and in half a year something would have become available that would have cured (or seriously diminished) the tinnitus... now that would be a double tragedy.

Hang in there.
Remember that when you wake up in the morning someone like you fighting the same fight is waking up too. At 8.00am or at 8.05am - you are not alone. As my girlfriend said "This is going to be the fight of your lifetime but as a third party observer, I just know you will find your way out of this. It just doesn't look that way for you because you are the one carrying the burden".

Because we have to live with it, we fail to see the bigger picture - which is understandable. That's why we have to trust on the people around us that are able to have the helicopter view.

Great post Ben! I actually just woke up at half 3 in the morning with the loudest siren tone after battling another noise trauma 2 months ago and absolutely understand how you feel. I feel completely in fight flight and am actually wondering at this point how living with this will be possible as my tinnitus is at a pitch and tone I always dreaded.

How are you now?

 

[Vicki14]

You shouldn't want a single tone. Single tones are not good, they don't show the capability to change or go away. Any fluctuation and change in tinnitus is good, it shows that it can go away. If you had a solid "EEEEE" it would be very concerning...

That's what I have... . Do you @Tara Lyons have a single tone xx

 

[Tara Lyons]

Do you @Tara Lyons have a single tone xx

Nope, it's all over the place in tone.

 

[Vicki14]

Nope, it's all over the place in tone.

Awh, totally feel for you. It's one roller coaster of a ride eh? x

 

[Tara Lyons]

Awh, totally feel for you. It's one roller coaster of a ride eh? x

It's disgusting.

 

[Vicki3116]

Hi Vicki, I'm so sorry to read of your distress an truly understand. How are you now? xx

Hey, nice to hear from you. How am I? That really depends on in what respect! The tinnitus is as vile as ever, head zapping, constantly changing sounds and feelings, my hearing feels like it's dipping in and out, I get dizzy, I can't concentrate, I'm just always very aware that something odd is going on in my brain. I never feel 'right'.

But. I'm back at work full time, I sleep just fine, I don't have anxiety anymore, sometimes I even feel sort of happy. I don't let myself think about it anymore. It's there, there's nothing I can do about it and that's that. The neurologist is convinced it's to do with migraines and he's prescribing me an anticonvulsant and will see me again in 4 months. To be honest, I'm not even sure I'll take it because if it knocks me about, I'll be off work again and I don't want that. Is this acceptance? Maybe. I ain't happy as such, but I'm relieved the fear is over. I just try and do my best with what I have now, I don't analyse it, I don't try and cure it or check if it's better or worse because there's no point. Something is up with the wiring in my brain and whether it sorts itself out one day I dunno, but I've come to realise the things I miss the most are nothing to do with noise. It's the feeling of being alive, the looking forward to things, having interesting conversations, you know all these things that occurred before this crap took over everything. So I guess I'm just doing my best to let it go and actually live again. This condition is so painfully boring and repetitive.

One thing I will say though is the way the therapy surrounding this has got it wrong is they refer to 'distraction' techniques. That annoys me because it gives the power to the tinnitus. I think we should reframe it as 'engagement' because it's actually you getting involved with life, and I think that's what we all want isn't it. To experience more of life.

How are you doing? xxx

 

[Vicki14]

Hey, nice to hear from you. How am I? That really depends on in what respect! The tinnitus is as vile as ever, head zapping, constantly changing sounds and feelings, my hearing feels like it's dipping in and out, I get dizzy, I can't concentrate, I'm just always very aware that something odd is going on in my brain. I never feel 'right'.

But. I'm back at work full time, I sleep just fine, I don't have anxiety anymore, sometimes I even feel sort of happy. I don't let myself think about it anymore. It's there, there's nothing I can do about it and that's that. The neurologist is convinced it's to do with migraines and he's prescribing me an anticonvulsant and will see me again in 4 months. To be honest, I'm not even sure I'll take it because if it knocks me about, I'll be off work again and I don't want that. Is this acceptance? Maybe. I ain't happy as such, but I'm relieved the fear is over. I just try and do my best with what I have now, I don't analyse it, I don't try and cure it or check if it's better or worse because there's no point. Something is up with the wiring in my brain and whether it sorts itself out one day I dunno, but I've come to realise the things I miss the most are nothing to do with noise. It's the feeling of being alive, the looking forward to things, having interesting conversations, you know all these things that occurred before this crap took over everything. So I guess I'm just doing my best to let it go and actually live again. This condition is so painfully boring and repetitive.

One thing I will say though is the way the therapy surrounding this has got it wrong is they refer to 'distraction' techniques. That annoys me because it gives the power to the tinnitus. I think we should reframe it as 'engagement' because it's actually you getting involved with life, and I think that's what we all want isn't it. To experience more of life.

How are you doing? xxx

Hello @Vicki3116. Thanks for your reply. I'm so in awe of your positive mental attitude and how you're now at a point of not letting this have control over you. Well done you and so commendable. I think you're such an inspiration on how you've turned your life around with this. Well done you.

I've recently taken a massive step back with mine. Long story short, my hubby whistled loudly accidentally right next to my ears and I instantly felt my hearing dip. A week later my hyperacusis in my left ear has gone crazy with a burning and fullness, my tinnitus has a horrible constant high pitched eeee and I also have an intermittent siren noise which is vile. My anxiety has sky rocketed and I just absolutely don't know how to make peace with something that is so volatile and unpredictable to be honest. I'd truly love to know how not to give a f, but the truth is I really do. Fear of making this worse, which it recently has is my biggest fear. It's like arm wrestling Goliath every damned day.

I'm so sorry that you've had such a rough ride with this too. It truly takes a lot of will and determination to be accepting of it and you're doing such an amazing job Vicki xx

 

[Vicki3116]

Hello @Vicki3116. Thanks for your reply. I'm so in awe of your positive mental attitude and how you're now at a point of not letting this have control over you. Well done you and so commendable. I think you're such an inspiration on how you've turned your life around with this. Well done you.

I've recently taken a massive step back with mine. Long story short, my hubby whistled loudly accidentally right next to my ears and I instantly felt my hearing dip. A week later my hyperacusis in my left ear has gone crazy with a burning and fullness, my tinnitus has a horrible constant high pitched eeee and I also have an intermittent siren noise which is vile. My anxiety has sky rocketed and I just absolutely don't know how to make peace with something that is so volatile and unpredictable to be honest. I'd truly love to know how not to give a f, but the truth is I really do. Fear of making this worse, which it recently has is my biggest fear. It's like arm wrestling Goliath every damned day.

I'm so sorry that you've had such a rough ride with this too. It truly takes a lot of will and determination to be accepting of it and you're doing such an amazing job Vicki xx

Hey, it's ok to care and to worry, this thing is horrid and it's totally understandable that we don't want it to get worse. The pressure and fullness is grim, I get that a lot too, it's like someone has their fingers all the way inside my ears and nothing I do eases the pressure. I tend to find it goes away on its own though. Dunno if it's hyperacusis or what. I did notice the other day that when I went outside the sound of the birds singing was like someone sticking needles in my right ear. It doesn't worry me though.

I know what you mean about the arm wrestling thing, it does feel like a battle sometimes. Trying to find peace with something so disturbing isn't easy, but trust that you're safe, you can and will deal with the experience of what is essentially your own body and things will, in time, get easier. Remind yourself how incredibly strong you are and that a malfunctioning auditory system isn't your defining feature. There is nothing 'wrong' with you, you're experiencing a symptom that millions of people have, it's annoying at best, devastating at worst, but you are not fundamentally flawed and you are so much more than what you're currently experiencing xxx

 

[Vicki14]

Hey, it's ok to care and to worry, this thing is horrid and it's totally understandable that we don't want it to get worse. The pressure and fullness is grim, I get that a lot too, it's like someone has their fingers all the way inside my ears and nothing I do eases the pressure. I tend to find it goes away on its own though. Dunno if it's hyperacusis or what. I did notice the other day that when I went outside the sound of the birds singing was like someone sticking needles in my right ear. It doesn't worry me though.

I know what you mean about the arm wrestling thing, it does feel like a battle sometimes. Trying to find peace with something so disturbing isn't easy, but trust that you're safe, you can and will deal with the experience of what is essentially your own body and things will, in time, get easier. Remind yourself how incredibly strong you are and that a malfunctioning auditory system isn't your defining feature. There is nothing 'wrong' with you, you're experiencing a symptom that millions of people have, it's annoying at best, devastating at worst, but you are not fundamentally flawed and you are so much more than what you're currently experiencing xxx

Awh @Vicki3116, I've actually got tears in my eyes reading this. Thank you for your words of support and encouragement. I truly admire your strength especially from where you have come from. After 5.5 years, I'm at the worst possible point with my tinnitus and really feel this has pushed me over my tolerance threshold. The constant noise switching between a siren and high pitched eee is far too disturbing for me and my stomach is in knots 24/7 and my anxiety sky high. It just upsets me Vicki how vulnerable I feel with my ears being so easily changed by noise. I do feel very broken by it and can't believe I'm back at this point. You'd make a great counsellor Vicki, maybe some tutor should consider! Thank you x

things will, in time, get easier.

I think that's the frustrating thing, I had turned a corner and honestly can't believe I'm where I am. Absolute rock bottom truly wondering how I've been plunged to these depths. How did you manage to turn that corner when you were feeling so low? I'm honestly not being a negative Nancy but just don't understand how it's possible to co-exist with a screaming head and living with the uncertainty that it will fade when all it's ever really shown me is who the boss truly is! Xx

 

[Vicki14]

It can and DOES fade.

Thank you for your post. It was very uplifting and hopeful. My tinnitus has recently gone off the scale after a noise trauma which resulted in 24/7 sirens and high pitched eee with reactive tinnitus and fullness and pain in one ear. Needless to say my anxiety is through the roof. From your experience, can it settle from noise trauma when you've been very much set back by it. In my 5.5 years, this has been my worst set back (husband whistled loudly right next to me, accidentally). I feel completely broken by it and truly feel like I've run out of options! X

 

[Vicki3116]

Awh @Vicki3116, I've actually got tears in my eyes reading this. Thank you for your words of support and encouragement. I truly admire your strength especially from where you have come from. After 5.5 years, I'm at the worst possible point with my tinnitus and really feel this has pushed me over my tolerance threshold. The constant noise switching between a siren and high pitched eee is far too disturbing for me and my stomach is in knots 24/7 and my anxiety sky high. It just upsets me Vicki how vulnerable I feel with my ears being so easily changed by noise. I do feel very broken by it and can't believe I'm back at this point. You'd make a great counsellor Vicki, maybe some tutor should consider! Thank you x

I think that's the frustrating thing, I had turned a corner and honestly can't believe I'm where I am. Absolute rock bottom truly wondering how I've been plunged to these depths. How did you manage to turn that corner when you were feeling so low? I'm honestly not being a negative Nancy but just don't understand how it's possible to co-exist with a screaming head and living with the uncertainty that it will fade when all it's ever really shown me is who the boss truly is! Xx

This is going to sound really weird, but I'm glad that you had tears in your eyes. You see, your emotional and psychological self are still in there and functioning. And if you're at rock bottom then the only way is up. It's probably going to be a very slow, painfully frustrating ascent but it can be done. One day at a time.

How did I turn the corner? That's a good question. I think it came from brutal honesty with myself, knowing that I'm going to hear these things day after day and there's nothing I can do about it. But also knowing that it's not in itself harmful. It's been an exercise in patience and faith like nothing I've ever known, and I'm not fully out the other side but I'm putting blind faith in myself that I know the way through. Because with something so irrational and soul-searing painful, faith is all I have left, I suppose. But if I made it through yesterday, I'll make it through today by accepting the minute to minute reality and every time I get wound up or notice the tinnitus, I'm going to think about something else instead.

I hate that life feels like effort now, but I can do it and I will, over and over again until it's not an effort anymore. This truly is a very long game, a horrible, exhausting game that you don't really have a choice but to be involved with. But we can win. Stoicism is a pretty valuable tool when it comes to this. I see the tinnitus now as something that flows through me like a river, but my conscious mind is a rock in that river that is unmoved by whatever the surrounding current is doing if that makes sense.

You're not being negative at all, you've already had a long road to this point and now you've had an incredibly disappointing setback. You're only human, this condition can be disorientating, scary and debilitating. Do whatever it is you need to do to get through the day and be proud of doing so. It might not feel like it, but you ARE coping and it's probably far from easy, but you're doing it. xxx