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

[Jazzer]

I'm so pleased you have that recording! That's such a lovely thing to have, being able to hear someone's voice when they're no longer here is just magic. I still have my Great Auntie's voicemail messages to me and listen to them for comfort. Admittedly they're mostly 'hello.....hello.....what is wrong with this f*****g phone....hello?' because she didn't really have a clue how voicemail works, but still

I definitely see you, and the love you spread. Being able to do that when you're facing such difficulties is amazing. Sylvie would be so, so proud of you. Afford yourself some of that, you have every reason to be proud of yourself. Sylvie may well be your angel, but there's a reason that angel chose you xxx

Thank you so much guys.

Though Sylvie had no tinnitus, she understood so well my noise, my fullness, my physical pain, my emotional pain at the loss of my life's work, my passion, my career.
"Dave - if I could take it away for you, you know that I would - but I believe I will be able to help you to cope."

Having hypnotised me right out, she recorded a 22 minute session, with messages of love and support.

She had the most beautiful soul.

Thank you for understanding me so well.

I am among friends.

Love
Dave xx
Jazzer

 

[Vicki3116]

Thank you so much guys.

Though Sylvie had no tinnitus, she understood so well my noise, my fullness, my physical pain, my emotional pain at the loss of my life's work, my passion, my career.
"Dave - if I could take it away for you, you know that I would - but I believe I will be able to help you to cope."

Having hypnotised me right out, she recorded a 22 minute session, with messages of love and support.

She had the most beautiful soul.

Thank you for understanding me so well.

I am among friends.

Love
Dave xx
Jazzer

How are you doing today? Thought I'd share one of my favourite quotes with you. Your description of Sylvie reminded me of it xxx

 

[billie48]

That is so true. Thanks for sharing Vicki.

 

[KWC]

Hey, sorry, I thought I'd replied! Yeah I'm doing ok, how are things with you? Any changes? xxx

How are you managing/doing these days?

 

[Vicki3116]

How are you managing/doing these days?

Hey, nice to hear from you. I'm doing OK I guess. Tinnitus is still an absolute joke, I can't even count the number of noises etc., but I feel pretty cool with it.

There's nothing I can do to magically switch it off so I'm just hanging in there. Supposed to be going back to work in a few weeks so will see how that goes. Had my second MRI yesterday and will see the neurologist on Tuesday.

The only thing that's really freaking me out is those massive loud bangs I was getting before falling asleep have started during the day too now so that's interesting to say the least. But either way, there's nothing I can do about it so it is what it is. I think the worst thing at the moment is the general feeling of depression and the feeling that all joy in life is lost because of my stupid noisy head, but it's all part of the process I guess, I'm sure those feelings will pass in time.

So yeah, the tinnitus is definitely still there but I just feel like I don't have the energy to constantly care about it. I'm bored of it, the threat isn't real and I just want my life back. I'm tired of being disconnected and stuck in my head all the time.

How's things with you? What have you been up to? xxx

 

[KWC]

Hey, nice to hear from you. I'm doing OK I guess. Tinnitus is still an absolute joke, I can't even count the number of noises etc., but I feel pretty cool with it.

There's nothing I can do to magically switch it off so I'm just hanging in there. Supposed to be going back to work in a few weeks so will see how that goes. Had my second MRI yesterday and will see the neurologist on Tuesday.

The only thing that's really freaking me out is those massive loud bangs I was getting before falling asleep have started during the day too now so that's interesting to say the least. But either way, there's nothing I can do about it so it is what it is. I think the worst thing at the moment is the general feeling of depression and the feeling that all joy in life is lost because of my stupid noisy head, but it's all part of the process I guess, I'm sure those feelings will pass in time.

So yeah, the tinnitus is definitely still there but I just feel like I don't have the energy to constantly care about it. I'm bored of it, the threat isn't real and I just want my life back. I'm tired of being disconnected and stuck in my head all the time.

How's things with you? What have you been up to? xxx

Yes, tinnitus is a joke and one of the strange mysteries. Same here, taking it day by day. My current state is still tinnitus in right ear only... sounds like a big hissing sound now... I've been trying a hearing aid with different masking sounds for some brain retraining and still doing my meds taper. I will be off Lunesta this week and will restart Klonopin taper.

I hope you get good results from the neurologist. I understand the depression and joy. One thing I have learned about is catastrophic thinking. I have not gotten far in it but there is a book called Full Catastrophe Living.

I figure by now I am stuck with it so trying to build my toolbox of how to manage and cope and try to live as best I can. As the weather has been getting better I try to get outside as much as possible as that is therapy for me. Right now it is just walking in my neighborhood but still a change of scenery.

You have a great outlook and one thing I am learning is you have to cut the negative thoughts when they start and replace them and build on that.

 

[Vicki3116]

Yes, tinnitus is a joke and one of the strange mysteries. Same here, taking it day by day. My current state is still tinnitus in right ear only... sounds like a big hissing sound now... I've been trying a hearing aid with different masking sounds for some brain retraining and still doing my meds taper. I will be off Lunesta this week and will restart Klonopin taper.

I hope you get good results from the neurologist. I understand the depression and joy. One thing I have learned about is catastrophic thinking. I have not gotten far in it but there is a book called Full Catastrophe Living.

I figure by now I am stuck with it so trying to build my toolbox of how to manage and cope and try to live as best I can. As the weather has been getting better I try to get outside as much as possible as that is therapy for me. Right now it is just walking in my neighborhood but still a change of scenery.

You have a great outlook and one thing I am learning is you have to cut the negative thoughts when they start and replace them and build on that.

Thank you, that's sweet. Getting out more is definitely a good thing, a bit of sunshine and exercise is great.

Yeah, negative thinking doesn't help really, positive thinking can definitely help but I've come to find my favourite is not thinking about it at all. It's kind of a relief to just go with the flow, accept whatever the hell my head is doing and not project any kind of meaning on to it. That way, I'm not comparing myself to the past me and I'm not scaring myself about the future. It's kinda like the fight is over if you know what I mean, I'm just not struggling against myself anymore. By accepting it, I feel like I can reclaim my mind, if not the silence. It sure is noisy in here but it's ok, because I feel quiet. Everything is going to be ok xxx

P.S. What really helped me too is when I caught myself thinking about it, monitoring it or whatever, I'd change it to a statement like 'Tinnitus is not a threat'. It's simple, it's factual and it really helped me sort of ground myself if that makes sense. No matter what the noise is, the perceived volume etc, it's still true. It can't hurt you. Emotionally and psychologically it can be horrific, but you're safe in this bizarre experience xxx

 

[billie48]

Thank you Vicki for your posts. They reflect acceptance of the ringing on your part. This is not easy of course as loud multi tonal tinnitus is quite intrusive. But somehow you manage to separate tinnitus from your mental self and that is a huge mile stone even to reach.

It took me about 2 years or more to get to that and you are way ahead in your ability to face up tinnitus and not reacting to it. Keep it up. Take good care. God bless your recovery.

 

[MaryA]

@Vicki3116, I cried reading your initial posts. I understand completely and tonight I fast forwarded to your latest posts and I'm glad to read you are able to cope better. I had so much despair. Tonight is one of the bad nights with the noise... the hissing and cricket sounds. But I'm pressing on. I turned to God to cope. It's been very helpful. Said a prayer for you and our fellow sufferers here on the site.

 

[billie48]

God bless your recovery, Mary. Keep up the good faith and hope that put our trust to the Almighty.

 

[MaryA]

@billie48, thank you. I certainly will do! Appreciate the encouragement.

 

[Ken219]

I think the worst thing at the moment is the general feeling of depression and the feeling that all joy in life is lost because of my stupid noisy head, but it's all part of the process I guess, I'm sure those feelings will pass in time.

All your words are beautiful. You have compassion and wisdom beyond your years. I agree with all the words quoted. I hope 'those feelings pass' soon. G-d bless.

 

[Vicki3116]

Hey, I don't even know where to start, all yours words are so lovely. I'm rubbish with technology, don't know how to tag people so here goes

Billie - Yeah, the ability to separate yourself from something that is literally in your head all day every day is hard learned, but this is not my first rodeo with a malfunctioning head. It's definitely the hardest one, but not the first. I think what helps me is the knowledge that however distressed/despondent/confused I get, facts still exist. I have a problem with the auditory system in my brain. It's relentless but in itself, it's not harmful. I know this is a place you've reached, and I am so glad you have your life back because sometimes that seems impossible doesn't it? xx

Mary - totally get why people turn to God in these kind of situations, the fear of what's happening to you is extreme and when you can't find that security in yourself, I think it's totally natural to look for it elsewhere. Despair is completely normal in this kind of situation I believe, you're going through your own personal hell and you're being told there's nothing anyone can do, and there's no cure. But you're going to be ok. I cope by telling myself there's nothing to cope with. Of course it's there, but I don't need to put any importance on it or use energy on it. Try not to ask yourself what makes the tinnitus better or worse, only what makes YOU feel better or worse because you, as a person, is what matters here. Keep that faith, hang on to your hat because it's probably going to be a bumpy ride, but you'll make it. You're not ever on your own with this. God is always listening, and so are the amazing people on this site xx

Ken - thank you, that's such a lovely thing to say. How are you doing these days? I see you've had this for a long time, and you mention that you have a rough time for 12-18 months after a setback. You are a perfect example of human spirit, having the tenacity and courage to carry on through the bad times. It's people like you that give so much hope to people on this site. We will find our joy again. It can't ever truly be lost because it's something that is experienced in the moment, and the great thing about life is we never know when those moments will happen xx

 

[KWC]

Thank you, that's sweet. Getting out more is definitely a good thing, a bit of sunshine and exercise is great.

Yeah, negative thinking doesn't help really, positive thinking can definitely help but I've come to find my favourite is not thinking about it at all. It's kind of a relief to just go with the flow, accept whatever the hell my head is doing and not project any kind of meaning on to it. That way, I'm not comparing myself to the past me and I'm not scaring myself about the future. It's kinda like the fight is over if you know what I mean, I'm just not struggling against myself anymore. By accepting it, I feel like I can reclaim my mind, if not the silence. It sure is noisy in here but it's ok, because I feel quiet. Everything is going to be ok xxx

P.S. What really helped me too is when I caught myself thinking about it, monitoring it or whatever, I'd change it to a statement like 'Tinnitus is not a threat'. It's simple, it's factual and it really helped me sort of ground myself if that makes sense. No matter what the noise is, the perceived volume etc, it's still true. It can't hurt you. Emotionally and psychologically it can be horrific, but you're safe in this bizarre experience xxx

How have you been doing?

 

[Vicki3116]

How have you been doing?

Hey, nice to hear from you, how are you?

It's been a pretty big week for me, I finally went back to work after 6 months off. I'm not going to say it was completely easy, but it was easier than I thought it was going to be. I think the hardest part for me about going back to work has been the acceptance of going forward in life with this crappy thing. There's a part of me that still so desperately wants it gone, but part of me is reassured that I can function even though it's there if that makes sense. So yeah, it's been a bit of a strange week, like returning to normal life but never really feeling normal. It's still difficult, it still makes me sad, but I can do my job and that's a massive relief.

Has the tinnitus itself improved? No. It's still vile, still unpredictable, it just doesn't cause me anxiety anymore. It's amazing how little I consciously think about it now, but I always know it's there. I still can't quite shake the feeling/awareness that my life has been altered for the worse, potentially forever. Life kinda feels like an uphill battle now, but you don't always have to be thinking about the size of the mountain, planning your path for the day is enough.

How are you doing? Anything new? xxx

 

[Sayeed]

Unless it is actually MS and then I'll be in a whole new realm of unexpected adventure. I'd be very surprised if it was that though.

The word MS scares me... Keep running through my head.

 

[Jazzer]

You gals and guys on this thread are truly amazing.

Suffering, and struggling to cope yourselves, yet you still reach out to the rest of us with such encouragement, love and compassion.

I don't come back on here so frequently these days, but when I do I seek out those of you with big hearts, full of empathy for others.

As far as I am concerned, you folks are the very life blood of this support site.

Love to all,
Dave xx
Jazzer

 

[Vicki3116]

The word MS scares me... Keep running through my head.

Hey, I saw the neurologist, he showed me the MRI, said it isn't MS.

Have you had any imaging done? As far as I can tell it's pretty rare to have tinnitus as a single symptom of tinnitus and I know some people on here are worried about MRI making things worse but if you're genuinely worried about it then an MRI might help allay those fears xxx

 

[Vicki3116]

You gals and guys on this thread are truly amazing.

Suffering, and struggling to cope yourselves, yet you still reach out to the rest of us with such encouragement, love and compassion.

I don't come back on here so frequently these days, but when I do I seek out those of you with big hearts, full of empathy for others.

As far as I am concerned, you folks are the very life blood of this support site.

Love to all,
Dave xx
Jazzer

Hey, nice to hear from you

How are you doing? xxx

 

[Sayeed]

Hey, I saw the neurologist, he showed me the MRI, said it isn't MS.

Have you had any imaging done? As far as I can tell it's pretty rare to have tinnitus as a single symptom of tinnitus and I know some people on here are worried about MRI making things worse but if you're genuinely worried about it then an MRI might help allay those fears xxx

I have had one MRI. The ER doctor said I'm all good and it's stress and anxiety doing a number on me. My first neuro who I found very robotic and uncaring was like take a multivitamin, you are fine. My second neuro sat me down and talked to me for 90 minutes. After the talk I felt cured even though I could still hear the ringing. He basically said you have very small white matter but not to worry, it is usually associated with high BP etc, but a very very very slight chance of it being MS, to the point he didn't even want to mention it. He ordered an MRA of the brain to see any blood flow issues and sleep study for sleep apnea.

I guess it's the anxiety that makes it worse. Coping. I'm on Buspar and Gabapentin.

 

[Peter Q]

It's been a pretty big week for me, I finally went back to work after 6 months off. I'm not going to say it was completely easy, but it was easier than I thought it was going to be. I think the hardest part for me about going back to work has been the acceptance of going forward in life with this crappy thing. There's a part of me that still so desperately wants it gone, but part of me is reassured that I can function even though it's there if that makes sense. So yeah, it's been a bit of a strange week, like returning to normal life but never really feeling normal. It's still difficult, it still makes me sad, but I can do my job and that's a massive relief.

Has the tinnitus itself improved? No. It's still vile, still unpredictable, it just doesn't cause me anxiety anymore. It's amazing how little I consciously think about it now, but I always know it's there. I still can't quite shake the feeling/awareness that my life has been altered for the worse, potentially forever. Life kinda feels like an uphill battle now, but you don't always have to be thinking about the size of the mountain, planning your path for the day is enough.

How are you doing? Anything new? xxx

Vicki, your tinnitus started in August of last year. There is the possibility you had a mild version of COVID-19. 10% of people who have had COVID-19 report developing tinnitus, or their existing tinnitus worsening. My own tinnitus, which I've had for over 10 years, became more noticeable last August. I know several people who tell me they had mild undiagnosed COVID-19.

By the way, have your got your vaccine yet?

 

[Vicki3116]

Vicki, your tinnitus started in August of last year. There is the possibility you had a mild version of COVID-19. 10% of people who have had COVID-19 report developing tinnitus, or their existing tinnitus worsening. My own tinnitus, which I've had for over 10 years, became more noticeable last August. I know several people who tell me they had mild undiagnosed COVID-19.

By the way, have your got your vaccine yet?

Hey, yes, I think you may be right. I felt unusually tired the day before this started, not ill as such but not quite right. I've never been tested for COVID-19 nor had the antibody test to see whether I've ever had it and I don't feel inclined to do so as whatever caused it is kind of irrelevant now, it's here. I do think you may be right though, I could well have been asymptomatic with it.

No, I've not had the vaccine yet. Work are keen for me to have it but after seeing people develop/have worsenings of tinnitus after the vaccine, I don't feel ready to have it yet. I've only just managed to get myself back to work and a set back at this point would be catastrophic. People think I'm stupid for not having the vaccine because it can supposedly reduce the severity of COVID-19 symptoms, but they don't see things from my point of view. I know that COVID-19 can be bad, devastating in some cases, but living with this crap in your head all day every day isn't exactly a treat either.

How are you getting on xxx

 

[Vicki3116]

I have had one MRI. The ER doctor said I'm all good and it's stress and anxiety doing a number on me. My first neuro who I found very robotic and uncaring was like take a multivitamin, you are fine. My second neuro sat me down and talked to me for 90 minutes. After the talk I felt cured even though I could still hear the ringing. He basically said you have very small white matter but not to worry, it is usually associated with high BP etc, but a very very very slight chance of it being MS, to the point he didn't even want to mention it. He ordered an MRA of the brain to see any blood flow issues and sleep study for sleep apnea.

I guess it's the anxiety that makes it worse. Coping. I'm on Buspar and Gabapentin.

Anxiety 100% makes it worse. You literally become so sensitised to any noise, your mind will play tricks on you, you become terrified about the future, everything becomes a big scary mess. Once your anxiety lowers you'll feel better. Can't promise you you'll feel great because it's like a door in your mind has opened to this weird experience, and once it's been opened you can never undo that. That's not to say your tinnitus will never go away, but you'll never live in the blissful ignorance of this as a concept ever again. It can hard to integrate that in to your psyche but it can be done. It can at times feel like you're in some awful parallel universe where everyone around you is happily unaware of this devastating occurrence, but you can and will feel safe in this world again. Trust yourself, give it time, believe in the fact there is nothing sinister wrong with you, give yourself as many pep talks as you need, come here for support, ignore the stories of eternal doom, get as much rest as you can.

Hang in there xxx

 

[KWC]

Hey, nice to hear from you, how are you?

It's been a pretty big week for me, I finally went back to work after 6 months off. I'm not going to say it was completely easy, but it was easier than I thought it was going to be. I think the hardest part for me about going back to work has been the acceptance of going forward in life with this crappy thing. There's a part of me that still so desperately wants it gone, but part of me is reassured that I can function even though it's there if that makes sense. So yeah, it's been a bit of a strange week, like returning to normal life but never really feeling normal. It's still difficult, it still makes me sad, but I can do my job and that's a massive relief.

Has the tinnitus itself improved? No. It's still vile, still unpredictable, it just doesn't cause me anxiety anymore. It's amazing how little I consciously think about it now, but I always know it's there. I still can't quite shake the feeling/awareness that my life has been altered for the worse, potentially forever. Life kinda feels like an uphill battle now, but you don't always have to be thinking about the size of the mountain, planning your path for the day is enough.

How are you doing? Anything new? xxx

That's great to hear you were able to go back to work.

I agree with you. I want mine gone as well but am more focused on how to try to live with it. Sadly the tinnitus is the same. Not sure if that is good or bad. Good in the sense it is pretty consistent, bad in the sense it has not waned. I have started to try to spend time each day focusing on it to desensitize myself to it but that is a long road.

I have been trying WNG to try to do some TRT of sort but hard to match the sound.

Coupled with dealing with all of that I have been tapering my sleep meds and Klonopin. I got rid of sleep meds and tapering Klonopin and the withdrawal effects can make it rough. I feel like that also inhibits me from trying to deal with the tinnitus but have to take it one day at a time.

I can function pretty decent with the ambient noise around me all the time but so wish not to need it.

That is great that you do not think about your tinnitus much now, I have yet to figure out how to do that and I know that is part of being able to move forward.

You have come such a long way and have so much strength, congratulations on your progression.

 

[Sayeed]

Anxiety 100% makes it worse. You literally become so sensitised to any noise, your mind will play tricks on you, you become terrified about the future, everything becomes a big scary mess. Once your anxiety lowers you'll feel better. Can't promise you you'll feel great because it's like a door in your mind has opened to this weird experience, and once it's been opened you can never undo that. That's not to say your tinnitus will never go away, but you'll never live in the blissful ignorance of this as a concept ever again. It can hard to integrate that in to your psyche but it can be done. It can at times feel like you're in some awful parallel universe where everyone around you is happily unaware of this devastating occurrence, but you can and will feel safe in this world again. Trust yourself, give it time, believe in the fact there is nothing sinister wrong with you, give yourself as many pep talks as you need, come here for support, ignore the stories of eternal doom, get as much rest as you can.

Hang in there xxx

Thanks for the words of encouragement. You are right, anxiety can play some major tricks. Throw in the tinnitus and they feed off of each other. I'm still at the point of determining why I get the tinnitus spikes. I guess I'm still at the beginning of the journey questioning everything and hoping certain changes can make it slightly better.

Now I've reduced salicylates in my diet which sucks because it basically feels like you are eating cardboard and every website has a different opinion on what food they consider high in salicylate.

I can live this tinnitus when it's at 3-4/10... but when it spikes unknowingly that's what sucks because you don't know why and how long it will last.

Hopefully I can get past this phase and just eat and live a healthy life but I guess you have to go through the steps and motions.

I hope things improve for you as well. You are right I need to avoid some of the doom and gloom on here.

 

[Peter Q]

Hey, yes, I think you may be right. I felt unusually tired the day before this started, not ill as such but not quite right. I've never been tested for COVID-19 nor had the antibody test to see whether I've ever had it and I don't feel inclined to do so as whatever caused it is kind of irrelevant now, it's here. I do think you may be right though, I could well have been asymptomatic with it.

No, I've not had the vaccine yet. Work are keen for me to have it but after seeing people develop/have worsenings of tinnitus after the vaccine, I don't feel ready to have it yet. I've only just managed to get myself back to work and a set back at this point would be catastrophic. People think I'm stupid for not having the vaccine because it can supposedly reduce the severity of COVID-19 symptoms, but they don't see things from my point of view. I know that COVID-19 can be bad, devastating in some cases, but living with this crap in your head all day every day isn't exactly a treat either.

How are you getting on xxx

I am getting on fine, Vicki, but still learning and changing my perspective. It's interesting that you mentioned feeling unusually tired prior to the start of your tinnitus. I too recall feeling very drained and exhausted one day around the time I noticed the exacerbation of my tinnitus. Of course I can't recall the exact sequence of events.

I will be getting my first AstraZeneca vaccination in a few days. I share your concerns about getting it, but I have spoken to several people I know who have tinnitus and have also received their first AstraZeneca jab with no adverse effect on their tinnitus. I do feel that the benefits of getting vaccinated outweigh the risks. If my recently increased tinnitus was brought about by COVID-19, and it is only a possibility, then there is also a possibility that the vaccine might return my tinnitus back to its previous level. All in all, I think it is wiser to get vaccinated, if for no other reason than the important one of confronting the folly of one's own irrational fears.

 

[Jazzer]

Hey, nice to hear from you

How are you doing? xxx

My tinnitus is as severe as ever Vicki of course.

Tinnitus caused by SSHL doesn't retreat, as we know.

My current distress relates to losing my precious sweetheart Sylvie.
We were together for 45 years.
Such a dream girl.

Dave xx
Jazzer

 

[billie48]

Vicki, congratulations you are going back to work. It is a positive step forward. It is baby steps that we make that give us the confidence. Your courage to move ahead is admirable. We need to learn to count on these little baby steps and take it one day at a time. Those of us with SSHL and its nasty symptoms such as new jet engine like tinnitus, constant dizziness and lighthearted sensation, bad hyperacusis, plugged and pressured ears, brain fog etc., will definitely need these baby steps. Our recovery can be slow and long. Just have to keep our faith and hope to soldier on, taking baby steps and one day at a time.

Your journey so far has been an inspiration. Take great care. God bless.

 

[Vicki3116]

Just came across this on my friend's Facebook page. It wasn't posted in relation to tinnitus but I can't think of anything more fitting xx

 

[Brain Tumor Dave]

When I talk to people about it and say it's because of a noise in my head, I can barely believe I'm saying the words because it just doesn't seem possible does it?

Does anything mask your tinnitus?