How to Deal with the Grief of Tinnitus

[terry123]

I am making great progress in dealing and accepting the anxiety and fear associated with tinnitus. I am using maily supplements, exercise and masking sounds. The only drug I am using is trazadone 50mgs at bedtime. It really seems to give me about 5-6 hr a night sleep. I swim about 1 mile a day and walk. When things really get bad .

As I get more accepting and habituated to the pulsating tinnitus left ear, I am feeling a great loss of the normal hearing and silence I had enjoyed most of my life. I am exeriecing waves of grief rolling through my being, overwhelming me. I don't know if anyone wants to share their grief loss experience with tinnitus. But right now I am experiencing this Gief and I seem to deal with it better by expressing it and put one foot in front of the other and move forwards. Thanks for this website. I don't feell iam fighting this battle alone.

 

[Louise]

Hi Terry, I have been in a grieving period too. Mourning the loss of what I used to be able to do - sitting in silence enjoying the noise of the wind outside. Also mourning the loss of just being normal, of never having to give my ears a second thought, the loss of days without anxiety, loss of watching TV without this noise interfering and interupting my viewing. The loss of being unlimited in what I could do. And the loss of peace of mind.

I think I'm moving on from that though, with the help of anti-anxiety medication. Im moving into a period of feeling grateful that I feel better than I did 3 months ago and of making the best of what I still do have. Im also trying to think of the future when I've had this thing so long that I dont notice it ie. habituation.

I think the grieving is an important part to go through, as with any loss. As horrible as it feels, it cant be rushed.

Take care Terry and as you rightly say, you are certainly not fighting this battle alone.

 

[Hudson]

I'm grieving the stupidity of going into a bar without having some earplugs in and making it a bit worse after I had habituated to that level of noise in the first place. It's an interesting progression of things though in my mind:

1. Get tinnitus.
2. Freak out that it's not stopping, have anxiety, wear earplugs around any source of sound you can't avoid.
3. Slowly accept and habituate to the tinnitus.
4. Start to become more realistic: you probably don't need ear plugs in a restaurant but should still wear them mowing the lawn.
5. Habituate to the tinnitus, and have it not bother you.
6. Your courage builds to where you think you might not need ear plugs in a bar, because the speakers are pretty small and it shouldn't aggravate your tinnitus, right?
7. Tinnitus gets slightly worse.
8. Start freakout all over again, regretting why you would foolishly allow yourself to be around a source of noise.
9. Repeat cycle

This is me. At some point I'm going to be able to walk the tight rope, being realistic that I don't need ear plugs around clanging dishes but I should use them for hunting, mowing, vacuuming, etc.However, I should not get complacent and go into a bar with loud music and expect to not affected by it.

edit** Hey Terry123... I dated a girl from Everett once. Her parents ended up moving to Lake Stevens and then to Whidby Island. We used to party it up on the Tulalip reservation because you could still have fires on the beach up there on the Sound! Pretty area

 

[Louise]

Well Hudson, I reckon you have now learned the lesson about earplugs in bars!
I dont know why reasonable noise levels that would've been ok before T make T worse now. It happened to me when I went to the theatre 9 weeks after onset. It blew my T out of the water. I couldnt understand it because I'd been to the theatre loads before T without any issue and its not noise at damaging levels. Weird. I'm very careful now and always will be.

Fires on the beach sounds great

 

[Markku]

Interesting thread. I didn't at first experience much grief. For a long while I thought it would go away on its own. I just couldn't see it sticking around for as long as it now has.

But within the past year I've a couple of times in different kinds of situations, e.g. enjoying the beautiful sunset at the summer cottage and hearing the dreaded ringing ruining it. Overwhelming feeling of grief, hopelessness and inability to enjoy some situations the same way as before tinnitus. Usually next day it's all already better, but the sadness that sometimes comes from the realization of losing something so precious as being able not to hear noises that aren't there can be awfully great.

Once or twice the feeling I've experienced has been so strong that at the time of experiencing that I thought I was going to lose control completely. Freaky stuff.

Thanks for a good opening to the thread, terry.

 

[calin]

I MISS SILENCE!

Ahhh... that felt better!

Now that you put it that way, I do grieve every now and then.

 

[Joel]

I'm grieving the stupidity of going into a bar without having some earplugs in and making it a bit worse after I had habituated to that level of noise in the first place. It's an interesting progression of things though in my mind:

1. Get tinnitus.
2. Freak out that it's not stopping, have anxiety, wear earplugs around any source of sound you can't avoid.
3. Slowly accept and habituate to the tinnitus.
4. Start to become more realistic: you probably don't need ear plugs in a restaurant but should still wear them mowing the lawn.
5. Habituate to the tinnitus, and have it not bother you.
6. Your courage builds to where you think you might not need ear plugs in a bar, because the speakers are pretty small and it shouldn't aggravate your tinnitus, right?
7. Tinnitus gets slightly worse.
8. Start freakout all over again, regretting why you would foolishly allow yourself to be around a source of noise.
9. Repeat cycle

This is me. At some point I'm going to be able to walk the tight rope, being realistic that I don't need ear plugs around clanging dishes but I should use them for hunting, mowing, vacuuming, etc.However, I should not get complacent and go into a bar with loud music and expect to not affected by it.

edit** Hey Terry123... I dated a girl from Everett once. Her parents ended up moving to Lake Stevens and then to Whidby Island. We used to party it up on the Tulalip reservation because you could still have fires on the beach up there on the Sound! Pretty area

Haha! Same thing happened to me last week. Walked into a club and realized my earplugs were missing after I was already in ..had to endure a 30 minute set from a band with a talented, but wailer of a singer ..

The only thing that was helpful was knowing that I can recover from this. I think habituating once was a big help for me because the fear of never habituating was definitely amping up the anxiety.

 

[Joel]

I am making great progress in dealing and accepting the anxiety and fear associated with tinnitus. I am using maily supplements, exercise and masking sounds. The only drug I am using is trazadone 50mgs at bedtime. It really seems to give me about 5-6 hr a night sleep. I swim about 1 mile a day and walk. When things really get bad .

As I get more accepting and habituated to the pulsating tinnitus left ear, I am feeling a great loss of the normal hearing and silence I had enjoyed most of my life. I am exeriecing waves of grief rolling through my being, overwhelming me. I don't know if anyone wants to share their grief loss experience with tinnitus. But right now I am experiencing this Gief and I seem to deal with it better by expressing it and put one foot in front of the other and move forwards. Thanks for this website. I don't feell iam fighting this battle alone.

Hey Terry I know this post is about mourning the loss of silence, but I gotta say man.... you are doing great!

When we first spoke about a month or so ago you seemed to really be in a tough place without a hopeful plan to move forward and now look at you. Getting things done .. eating well.. exercising .. all great things that i'm sure have benefited you

It's true we may never be the same again ..but really is anyone ever the same person that they used to be?

All that really matters is the choices we make in the present moment.

So the question is do you choose to mourn? If so, that's totally cool, everyone does it. But remember it's a choice. And i call it a choice because somewhere in your mind a voice said "I'll never be the same again and I should be sad about that" and you chose to agree with that voice/thought.

What happens if you choose to mourn the loss of silence for ten years and then miraculously they find a cure for tinnitus?

Well then most of the memories you will have of those last ten years will consist of sorrow and mourning. You may miss out on some serious fun.

But if you chose to not mourn and simply do your best and enjoy as much as possible ...well then I would bet that those 10 years would look completely different. Maybe even the best years of your life.

So I guess for me, I choose not to mourn. In fact I don't believe half of the BS that pops into my head at times.

"you'll never have you're hearing again" ... "you look like crap today" ... "you don't have good taste in clothing" (all nonsense I have said to myself over the years) ...etc. The mind says all sorts of things to us and most of us simply never question those thoughts. But if you're mind is talking to you then who is listening? It's the real you.

And the real you can reclaim the power to choose if you agree with anything that is said to you, anything you read/watch, or anything that even your own mind tells you.


I know I make it sound easy, but I know that it is not.

Just being physically drained/tired can make it very difficult to remain aware of the different ways we try to sabotage ourselves. And you know what ..that's all good. You just do your best Terry. All day, every day ...

I guarantee it will lead to good things ...and even if you run into roadblocks or difficult times ... at least you can look back and have memories of all sorts of experiences rather than just mourning.

 

[Louise]

I like your attitude Joel. what you're explaining is a bit like CBT - challenge your thoughts. Some mourning is good however, a normal length period of mourning for something lost. It can do you good not to repress that but get it out, then have done with it.

 

[Juice564]

I've had a rough couple of days myself. T isn't any worse but just thinking about it and feeling a bit trapt. I'm on Zoloft which has helped me considerably with the anxiety/depression. I too went through all the stages of loss the first year I developed it. You are not alone and when you wake up to face a new day realize that all of us are facing it in the same way. I do miss the quiet summer evenings still

 

[Joel]

I like your attitude Joel. what you're explaining is a bit like CBT - challenge your thoughts. Some mourning is good however, a normal length period of mourning for something lost. It can do you good not to repress that but get it out, then have done with it.

Yeah absolutely Louise. Emotional suppression is like a pressure cooker ;-) And as strange as it may sound, sometimes i really enjoy sadness, sorrow, anger ..etc. (like in art form for example..films , music ...visual art ..etc)

I guess i was focusing on those "negative loops" that we can find ourselves in from time to time and how to break out of them.

Never heard of CBT described that way, but yeah... sounds exactly the same. I'm a big fan/practitioner of the Four Agreements (excellent book!)

Have a great weekend!

- J

 

[Louise]

Ah, I've heard of the Four Agreements. Must look it up.

Part of CBT is challenging NATs (Negative Automatic Thoughts). Thats about all I know about it!

You have a great weekend too

 

[James]

I just received a new saying. Maybe it can apply to tinnitus, Peace.

"The things in life that are free, are what cost you the most"

 

[James]

I just received a new saying. Maybe it can apply to tinnitus, Peace.

"The things in life that are free, are what cost you the most"

Anyway, thanks for all the posts. I just getting into my Tinnitus. Can't sleep, I just don't understand it.

 

[Karl]

I'm against the idea of "grieving" about this thing. The more we think about tinnitus, the more it takes control of our lives. It doesn't deserve grief. If we grieve, it's sabotages our efforts to ignore it.

We don't look directly at the sun. With tinnitus, we must try not to listen directly to it. Our reaction is the problem.

 

[Louise]

I agree with the second paragraph of that Karl, but a grieving process of an appropriate length of time is normal and healthy. In fact I think for most major losses, essential. No point in burying feelings.

Now you look like Just1MoreThing with that Avatar!

 

[Hudson]

I figured I'd post this in this thread because it seemed relevant. I'm just having a hard time lately accepting that the ringing is slightly louder... just denying it and obsessing over it. The acceptance part is very difficult! I'm trying very hard to accept my situation and move on with life... and by proxy divert my attention to other things. I figure since there's so many millions of people that have tinnitus, and many probably much worse than myself, that I can do it. Things in life are always easier said than done though, as I've found. One thing I have been doing lately is just habitually browsing tinnitus research stuff, over and over again. As if something would change in the last 10 minutes (Markku can attest to this, as I notified him that one of the stupid clinical trials had completed because I was looking for results!).

My therapist has suggested that I don't do that. He says that staying up to date on research is not necessarily a bad thing, but it is something I should check up on every few months maybe. The forum searching, research browsing is all "assurance seeking behavior" as it's called. It's classic generalized anxiety disorder, I guess. I need to get to the point where my consciousness is not searching for that high pitched hissing in every second. A guy at work was randomly talking about it the other day (because a woman where I work recently had a cochlear implant put in) and he referred to his tinnitus as "his constant buddy" and then laughed it off. It was striking to me, as this guy is very outgoing and happy, and I had no idea he had this problem as well. He seems to be bothered by it very little if his reaction was any gauge. I want to get to that point again (I have been there once dammit!) and I know I can again. I guess time is what it takes, and acceptance. Acceptance does not come easy, at least for me I guess, and I suppose time will go by faster and faster as I get older regardless of my tinnitus or my reaction to it. Sorry for the rant, just had some anxiety about it this afternoon.

"A telephone in my heart,
Someone get me a priest,
To put my mind to bed.
This ringing in my head,
Is this a cure ,
Or is this a disease?"

 

[Markku]

One thing I have been doing lately is just habitually browsing tinnitus research stuff, over and over again. As if something would change in the last 10 minutes (Markku can attest to this, as I notified him that one of the stupid clinical trials had completed because I was looking for results!).

My therapist has suggested that I don't do that. He says that staying up to date on research is not necessarily a bad thing, but it is something I should check up on every few months maybe. The forum searching, research browsing is all "assurance seeking behavior" as it's called. It's classic generalized anxiety disorder, I guess. I need to get to the point where my consciousness is not searching for that high pitched hissing in every second.

Yep. It's not helpful to get stuck in the loop of continuously browsing through the archives & current and upcoming treatments, trials... It's just not... at first, it's OK and normal, but that cycle needs to be broken at some point, which will certainly help in getting habituated sooner.

My advice: take one week off the tinnitus sites. It's an arbitrary number, the one week, but you can do it. For one week don't come here & don't look up things related to tinnitus on the internet. Instead, when you are at home: play games, listen to music, watch movies & tv, read, chat with friends, or really anything that doesn't have *tinnitus* labeled on it.

Or, if you want to be around here to help the newcomers & share what you know (considering that you first got tinnitus in 2003, you've got lots of exp), then at least try to avoid browsing through PubMed, ClinicalTrials, googling tinnitus...

And once you are again better, like the fellow at your work, then you can without worry every once in a while browse tinnitus related sites without it causing additional stress or having you pay more attention to tinnitus.

 

[THOPE]

I made many mistakes and was really struggling with anxiety when my tinnitus developed. Thought of it as punishment and then convinced myself I could not be happy without finding a cure for myself. Now 18 months later I am trying to unwind my pattern of thinking which has been difficult

 

[Louise]

The therapists do tell you to stay off the sites. I gorged on them in the first months. I was sure I would find something to stop the noise for me. It gradually wore me down and I just reached saturation point or overwhelming disappointment point. I just ended up thinking its here, its not going anywhere, got to get used to it. Got to live with it. Its the start of acceptance I guess. Maybe the next thing after acceptance is noticing it less. That's what I hope Though its louder this week and so obviously harder to ignore. The truth is though we cant do anything about it. Nothing. It doesn't matter how much you read or how much you think about it and monitor it, you're not going to get that sound to change. So, I gave in. I'm hardly interested in reading the studies anymore. Im more interested in just dealing with it. TRT interests me and I'll possibly be pursuing that at some point.

I wish I had the attitude of that guy you work with. Maybe that will come, thats my goal now. I don't expect the noise to go (though I wish it would stop getting louder) I just want to not care that its there.

 

[Hudson]

Well, I am trying to avoid the research sites as much as possible. I had to come in here and vent. I had a terrible day yesterday filled with anxiety. I have been taking 1/4 of a 2mg clonazepam pill nearly every day for about 5 weeks. It definitely helps to calm me down, but I'm afraid I'll get addicted to the things. I went to the doctor yesterday, and discussed my concerns with her. She was ready to give me a prescription for the clonazepam(my sister had originally given me some of hers). I've been taking the buspirone for a while now too. I'm not sure if it's actually helping or not. She gave me a prescription for escitalopram. I have been on the "citalopram" (the racemic form of it) and it never seemed to aggravate my tinnitus, but I'm unsure of it now. Anyone have any experience with that on here? I really want to stay away from the clonazepam if I can help it at all, because it's so addicting. I don't need to compound my problems I think. The doctor said .5 mg per day for about 5 weeks was not enough to induce dependence but that if I continued for a while it could.

I think that bar with the non-live loud music aggravated my tinnitus and made it worse. I think I need to accept that and move on. It's not easy though, as I keep feeling guilty and blaming myself. I had ear plugs in my pocket, but I assumed we wouldn't be in there very long. So, so stupid of me. I'm in an exercise program at work... hopefully that helps with the anxiety levels. I definitely had a terrible day/night yesterday. I couldn't fall asleep until 2 am because I was sick with worry.

I just don't understand how people work in those places and don't have hearing loss/tinnitus through the roof. It makes no sense to me.

Edit* I've really felt boxed in lately. Living in a box...

 

[mick]

She gave me a prescription for escitalopram... Anyone have any experience with that on here?

I'm taking escitalopram. I have no major complaints about it, but if I remember correctly, compared to all SSRIs it has one of the highest fraction of people reporting tinnitus as a side effect. I started taking it post-T onset.

Without knowing it at first, I was recently switched to escitalopram made by a different manufacturer (Teva) than what I had been taking (Mylan), and experienced a noticeable increase in my T volume and restlessness. I can't say for sure that the Teva product caused it, but I went back to Mylan and both the T and restlessness went back down. It could have just been a coincidence.

From what I've read, Mylan is under license from Forest Labs (makers/developers of branded escitalopram - Lexapro) to make the medication. As a licensee, they have to make it according to Forest's "recipe". My guess is that Mylan makes Lexapro for Forest. Teva is not under license and as such can manufacture it however they want as long as they prove that the active incredient is the same molecule as Forest's Lexapro. Assuming that Mylan has a bigger market share and production volume than Teva based on its status as a licensee, I think the Mylan product is probably less likely to be made in a multi-product manufacturing facility, and therefore is less likely to be exposed to cross-contamination from other products (see https://www.tinnitustalk.com/threads/generic-drugs.1403/#post-11026), so I'm sticking with it. I had to ask my pharmacy to stock it, and they kindly did.

 

[stantheman]

Hudson, that guy at work who laughed off his T may be laughing on the outside and crying on the inside. That's what I do with family and friends.

 

[Louise]

Well, I am trying to avoid the research sites as much as possible. I had to come in here and vent. I had a terrible day yesterday filled with anxiety. I have been taking 1/4 of a 2mg clonazepam pill nearly every day for about 5 weeks. It definitely helps to calm me down, but I'm afraid I'll get addicted to the things. I went to the doctor yesterday, and discussed my concerns with her. She was ready to give me a prescription for the clonazepam(my sister had originally given me some of hers). I've been taking the buspirone for a while now too. I'm not sure if it's actually helping or not. She gave me a prescription for escitalopram. I have been on the "citalopram" (the racemic form of it) and it never seemed to aggravate my tinnitus, but I'm unsure of it now. Anyone have any experience with that on here? I really want to stay away from the clonazepam if I can help it at all, because it's so addicting. I don't need to compound my problems I think. The doctor said .5 mg per day for about 5 weeks was not enough to induce dependence but that if I continued for a while it could.

I think that bar with the non-live loud music aggravated my tinnitus and made it worse. I think I need to accept that and move on. It's not easy though, as I keep feeling guilty and blaming myself. I had ear plugs in my pocket, but I assumed we wouldn't be in there very long. So, so stupid of me. I'm in an exercise program at work... hopefully that helps with the anxiety levels. I definitely had a terrible day/night yesterday. I couldn't fall asleep until 2 am because I was sick with worry.

I just don't understand how people work in those places and don't have hearing loss/tinnitus through the roof. It makes no sense to me.

Edit* I've really felt boxed in lately. Living in a box...

You're on the same amount of Clonaz as me. I've been on it about 3 months I think. Does buggerall for the noise anymore but, when I started to taper the dose down to quit taking it last weekend the T went up. The volume increased and in over a week later still hasn't gone back down. Not risking that again.

I wish that you could get Pregabalin for anxiety. Its a very, very good drug. I've had no side effects (that I know of) and the anxiety much, much reduced. its a better choice than Clonazepam.

I have that same self-blame ting going on - or rather I did before the Pregabalin. I knew the music was too loud in that room and have moved away to the back on several occasions in there before. This night I didn't, I was very, very close to doing so, like I almost opened my mouth to say "Come on lets move its too loud" but I didn't. That crucified me in the beginning, for a very, very long time. But now I feel more like, what's done is done. No amount of going back over it or kicking myself mentally is going to change anything. There's absolutely no point in it so, I move on.

Wish I could help more, Bloke

 

[Danny]

Grief sorrow feeling sorry for myself...still 6 months into this thing and I allow it to consume me...how do you break the cycle? I consider myself a strong person mentally but this thing just wears me down to point of exhaustion sometimes..I feel crappy and try to go to my happy place...My Gretsch and strum my way to happyville... I know there is no point of feeling this way, it serves no useful purpose but to strengthen this thing..I've accepted the fact that its not going away but still recently feeling sorry for myself is what I'm getting good at...

 

[Paul D]

I'm against the idea of "grieving" about this thing. The more we think about tinnitus, the more it takes control of our lives. It doesn't deserve grief. If we grieve, it's sabotages our efforts to ignore it.

We don't look directly at the sun. With tinnitus, we must try not to listen directly to it. Our reaction is the problem.

That's what works for me the most...don't give it the attention it demands. When it gets real bad, like interfering with my whole day today, just decide to get past it. Yeah, maybe it'll stick around this bad for a few days, but there are better days to come. The more I focus on other aspects of my life the quicker the extreme noise level seems to dissapate. Yes, there's a certain level of acceptance that comes to play, not always pleasant, but grieving? There are too many other things in life to grieve over; I'm not about to willingly add another to the list.

 

[Paul D]

My therapist has suggested that I don't do that. He says that staying up to date on research is not necessarily a bad thing, but it is something I should check up on every few months maybe. The forum searching, research browsing is all "assurance seeking behavior" as it's called. It's classic generalized anxiety disorder, I guess.

I dont' come around here near as much as I did after first discovering this site (the best!). In fact, as my T has gradually ramped up again over the last week (it's always there in varying degrees of severity), I consiciously avoided logging on, figuring it was most likely detrimental; me seeking some sort of affirmation or comiseration of the condition, consciously bringing it right to the forefront. I just don't want to give it that power anymore. This seems to help, particularly as I've found very little else to keep anxiety at bay when symptoms are headed in the wrong direction. I do enjoy everybody's comments, feelings, and opinions, but when it comes to my own condition, like in other areas, moderation appears to be key.

 

[Lord of the Ring]

I don't grief. Why would I grief? I had this mild, almost non-existing form of tinnitus for 35 years (hell, I didn't even know that it was tinnitus, I thought it was normal and everyone had a quiet buzz in their ears when they went to sleep in a ultra-quiet room).
It got really bad 1,5 months ago after doing a DJ set for 6 hours straight.
Do I have to remorse that? I don't want too. It was a time-bomb ticking, and sooner or later, this was bound to happen. I don't want to ask myself "What would silence sound like?" I think I would be pretty scared by silence

 

[Danny]

Dear Lord..
I'll take the silence if you don't want it...

 

[Louise]

Bless you Danny, wish there had been a 'love' button for that comment.

People seem to be against grieving. Maybe they think I mean the type of grieving that is wallowing in self-torture for years. I mean 'healthy' grieving. And, yes, grieving IS healthy.

No-one wants to bring it to the fore-front or give it any more power than it "deserves" but to not allow a period of grieving, for some, would lead to a prolonged period of recovery - just as with a relationship breakdown/job loss/death.

Its also maybe easier to have the 'power-through it and ignore it' type of attitude when you have the type of T that gives you some remission every now and then by being quieter on some days.

As I sit here typing this I'm hardly able to concentrate due to high-pitched, loud whining in both ears and eye-floaters darting and dancing away across the screen.

Yeah, I know, life's tough.