It's tough, I agree. I'm right there with you. I think we should try and be positive though (easier said than done, I know)The thing I miss the most is that peaceful feeling of being able to walk into any environment and just have fun. Not worry about how it's going to affect me. Something that has been stolen from me for the rest of my life.
I don't want to hang out with any of my girlfriends because all I'm going to hear is about their dating lives, careers, fun things they have planned, etc. I also don't want to sit around and cry about myself because I'm embarrassed of having a mental breakdown in front of them.It's tough, I agree. I'm right there with you. I think we should try and be positive though (easier said than done, I know)
I constantly am seeing techno events and concerts I would have loved to go to merely a year ago, and wouldn't have given a second thought to. In 2018 I went to 40 shows (with earplugs) - it wasn't till I took medication that was supposed to help me that I've had to deal with this worry and stress. Now seeing these events makes me sad - someone reached out to me about how we hadn't hung out at an event and I had to be like sorry, I'm on a hiatus from these things because of this tinnitus sitch. But she expressed sympathy and said we can hang out and chat sometime instead
I personally have filled myself full of negativity and worry from this site in general that I didn't really have for the first 6 months I had this bad tinnitus - I had some, but checking this site daily didn't help. I know all I need to know now about trying to be safe, and the negativity isn't adding value. I recently read someone's success story about having tinnitus way louder than a truck, but slowly returning to finding joy in life and resuming normal activities, just more cautiously, and I think focusing on those examples is the way forward.
Our lives have changed, yes. I'm with you there. I feel sad about it daily right now. But I think focusing on that negative isn't the way forward, and is already causing me way more suffering than need be - we suffer enough already.
Hopefully you have good friends you can rely on and talk to - so far that's been very helpful to me. I don't have any great advice, because I'm still in the coping stage too, but let's try and move forward as best as we can.
I recently (before I was hit with tinnitus) read Man's Search for Meaning by Victor Frankl - I think it's helpful and a quick read. If humans can find a will to live and meaning in life in situations such as Auschwitz, where their entire humanity is stripped from them, all enjoyable activity and pleasure is taken away, they're separated from friends and family, and their bodies are falling apart through starvation and disease - then we can find meaning too. Yeah, this sucks, but I'm going to try to focus on gratitude and what things in life I can be grateful for.
I don't know if this was helpful or will be helpful, I'm mostly just rambling to myself and trying to convince myself to be happy, but it seemed like you could use the support too.
It's tough, I agree. I'm right there with you. I think we should try and be positive though (easier said than done, I know)
I constantly am seeing techno events and concerts I would have loved to go to merely a year ago, and wouldn't have given a second thought to. In 2018 I went to 40 shows (with earplugs) - it wasn't till I took medication that was supposed to help me that I've had to deal with this worry and stress. Now seeing these events makes me sad - someone reached out to me about how we hadn't hung out at an event and I had to be like sorry, I'm on a hiatus from these things because of this tinnitus sitch. But she expressed sympathy and said we can hang out and chat sometime instead
I personally have filled myself full of negativity and worry from this site in general that I didn't really have for the first 6 months I had this bad tinnitus - I had some, but checking this site daily didn't help. I know all I need to know now about trying to be safe, and the negativity isn't adding value. I recently read someone's success story about having tinnitus way louder than a truck, but slowly returning to finding joy in life and resuming normal activities, just more cautiously, and I think focusing on those examples is the way forward.
Our lives have changed, yes. I'm with you there. I feel sad about it daily right now. But I think focusing on that negative isn't the way forward, and is already causing me way more suffering than need be - we suffer enough already.
Hopefully you have good friends you can rely on and talk to - so far that's been very helpful to me. I don't have any great advice, because I'm still in the coping stage too, but let's try and move forward as best as we can.
I recently (before I was hit with tinnitus) read Man's Search for Meaning by Victor Frankl - I think it's helpful and a quick read. If humans can find a will to live and meaning in life in situations such as Auschwitz, where their entire humanity is stripped from them, all enjoyable activity and pleasure is taken away, they're separated from friends and family, and their bodies are falling apart through starvation and disease - then we can find meaning too. Yeah, this sucks, but I'm going to try to focus on gratitude and what things in life I can be grateful for.
I don't know if this was helpful or will be helpful, I'm mostly just rambling to myself and trying to convince myself to be happy, but it seemed like you could use the support too.
I'm starting to realize that yeah, regularly checking Tinnitus Talk is not helpful or good for my mental health, or for adjusting. It's probably wise to take a break. In many ways it's like picking at the wound.You articulate your thoughts very well and admire your positivity and realism in the light of adversity. Actually my biggest joy in life was actually attending trance festivals but now seems impossible and perhaps will not attend one every again. Its a devastating below as already given up other pastimes like Deejaying headphones, football matches cinema and nightclubs. I was hoping to attend around one or two events a year but can't even do that now due to hyperacusis and reactive tinnitus.
Must be devastating for you an others too having to stop going out especially when its human nature to see what other people are doing in their lives and feeding back on social media. Yes it hurts both physically and mentally
Yes while life has taken a downturn I totally agree with you that sometimes we have to be grateful what we got and not what we have not got.
My audiologist warned me to stay off tinnitus forums etc as just breeds more anxiety but just can't help myself.
Somehow while easier said than done is stop focusing on Tinnitus by keeping busy and just hope it goes away or your habituate.
I am approaching one month and feel worse and worse every day
The thing that confuses me the most was the onset of mine.time is the best thing. I remember the first month or 2 was so fucking hard.
Even now there is good and bad days.
But it's definitely not like it used to be.
when i first got t the sleep issue was horrendous. And that I turn made things worse the next day.
I hope over time yours fades.
mine definitely faded from 6-7 to 2 I'd say.
I still have spikes and things where it's 7-8 some days. Or weeks. But I am pretty thankful for the days when it is quiet.
I hope you have that too.
although to turn off fight or flight response, you just need to tell yourself it won't hurt your. It's annoying and it's here, yes I can hear you but I'm not going to give you attention.
try and keep distracted.
It can be accumulated damage..The thing that confuses me the most was the onset of mine.
I've never heard any sort of ringing. I did go to a concert 4 days before my tinnitus began, so I suspect that's what did the damage, but it seems like most people here get it immediately that night or the same morning.
I have read that noise induced trauma can be delayed though.
Every time I chew my left ear feels sticky, like something in there is literally cracking, sticking and almost itchy/annoying but it's only when I eat.
I just find that super strange.
@Yuuls
I feel a lot like you. I'm a bit older than you, but relatively young. I just can't fathom living a life like this. Besides the obviously horrible sounds (my tinnitus is only at a moderate level though, but the pitch and shrillness is terrible) , my biggest worry is that it's going to become worse. I hate that I have to be always vigilant and never for a minute can ease up. I have panic when someone shuts the door, I hear an ambulance, etc.
And in the recent months I snapped at my family a lot of the times. I'm afraid I'm ruining their life as well. They want to, but they can't help and they worry about me a lot. I get very frustrated when they talk about the future, or try to give me advice to what doctors I should see, what alternative therapies they read about, or when they talk about acquaintances who have tinnitus, but deal with it just fine. I always feel guilty, because I cope with this horribly. The very severe lack of sleep doesn't help either.
As you said, I've never been a positive person, always had a pessimistic personality, have had depression and GAD for years, so I find it pretty hard to search for a silver lining in this condition.
I really do hope things improve for you at some point in the future. You seem like a very positive person (at least through your responses) so I hope you don't lose that through your journey.I'm starting to realize that yeah, regularly checking Tinnitus Talk is not helpful or good for my mental health, or for adjusting. It's probably wise to take a break. In many ways it's like picking at the wound.
When I first got my tinnitus, I was insanely worried, checked Tinnitus Talk and Reddit etc etc, read about it, and then hoped it would get better and went back to normal life. It still bothered me, but most of the time when I kept busy I didn't think about it. Maybe if I'd read more I might've been safer, but the mistake I made when I forgot ear plugs at the wedding and knew it was too loud - like I knew it was too loud and I didn't leave, and it was my mistake, but I don't know that obsessing over it would have prevented that (maybe I might have taken it a bit more seriously, but who knows). Something else could have happened by accident - that's life.
So then it started getting worse in the few months after that, which was depressing me and frustrating - but I really didn't start to depressive spiral so badly about it until I started really spending a lot of time on these forums over my holiday break, reading horror stories, reading about how it could get worse, reading people lamenting their condition. I obsessed over all the mistakes I'd made over the years that led me to this place - what could I have done differently? But unfortunately, obsessing over the past doesn't allow you to change the pass, no matter how hard you think and sketch out the timeline, the mistakes, etc. The best you can do is learn from it and move forward. And you'll likely still make mistakes, because humans are fallible, and the universe is random and bad luck happens. Life ain't fair.
The horror stories of people having it get worse also led to fear of the future for me - I kept thinking, shit, I have to give up all these things I love (and maybe if I'd done so earlier or been more careful, it would've been less bad now), and it's one more thing I have to worry about now. I don't want to deal with this forever. I don't want to end up with severe ever present screaming tinnitus. That's scary. I'm totally agreed. And music has been one of my greatest joys in life, my favorite leisure activity, something I care a lot about, and I hate that I can't enjoy it like I used to.
But, after a certain point of reading everything, and obsessing over the past and fearing my future, and revisiting the same threads, reading more stories, etc... more information isn't really going to help me. I'm just getting myself deeper into the wallowing stage and ruining my life as a result (and making it harder on my friends and family). It's tricky when tinnitus is constantly there as a reminder of all these feelings - regrets, fears, why did this happen to me and not others, etc.
But now I know what I need to know I guess, having read so much. And the only thing to do is to reasonably protect myself and take care of myself the best I can and move forward. Maybe cures and solutions will come out, but maybe not. Maybe, even if I try to reasonably protect myself, something will happen that will make it worse. But obsessing over the fear of something happening that hasn't happened yet isn't a good way to live, and doesn't actually help anything - caution is good and wise, but fear shuts down life. Maybe it will get worse and I'll have to deal with that when I deal with that, and that sucks ass that I have to worry about it, but living in fear isn't going to prevent that from happening. Maybe I'll get hit with a car running a red light when crossing the street, which I do every day, but living in fear and paranoia about that possibility isn't going to prevent that from happening. The best I can do is take reasonable precautions, be smart, and carry on living.
Sorry, I'm largely typing these things out to myself as a way to convince myself, but it's helpful for me and hopefully will help others. I'm still struggling, yes. It still sucks, and it's not fair - but I don't need to make it any worse for myself than it already is. My ear is aching and ringing in response to even things like flushing the toilet. I can't listen to music at work like I used to. But I'm tired of these feelings of depression and fear and pity and obsession and I'm over it. As much as I'd like to undo the past or fix my tinnitus by sheer emotional will, that ain't gonna happen, and will poison all the good things in life I still have going for me.
Fuck that.
@fishbone thank you so much for your welcome to the site. You're an inspiration.
I think my daily checking at this point is starting to harm me more than help me - I learned a lot more about how I should better protect myself, and what things to avoid. I'll definitely stay on the site, but I'm going to try to only look at most once a week.
I'm going to try to live my life and spend time with friends, and maybe it will be in different ways than before and I'll have to turn down certain things to try and be safer, but I'm not going to live in fear.
But most people get some sort of minor ringing. And then it keeps happening and happening before it becomes permanent.It can be accumulated damage..
I also get the sticking and cracking, also get pressure.. usually worse during spring time.
I hate it, I never had ear issues before T
I wouldn't say I'm positive - most people would say the opposite. I was all doom and gloom and despair the last few weeks. My poor parents have also had to deal with it, and worry about me and my sadness.Hi Krizsti, love the way your name is spelled. I can identify with everything you said. Especially snapping at family. My mom follows up with me all the time and she just doesn't understand there isn't much doctors can do for this. She's very much stuck on the "only older people and those who are professional musicians" have these type of issues.
I'm not even going to try showing her this forum because she's not gonna wanna see it. She gets upset with me for even bringing it up. I know how much she worries about me and it pains me so much. She brought up going to church yesterday and we're not even religious people and I absolutely snapped. It was such a sad phone call, she wishes she could help me but she can't.
I'm not strong enough to handle this. I had breakdowns over previous health issues this year. I had a surgery done this June, and then some foot problems again in the fall, so they were legit issues, not minor - but they had a solution. My breakdowns were dramatic I think, but this time it's kind of like that story "the boy who cried wolf".
I keep on thinking maybe there is something wrong with my lizard brain, but I can't fix it
It's crazy how the brain can feel "crazy" and at the same time recognize that the crazy reaction isn't healthy or normal
I really do hope you find some relief with this soon. Even if it's the tiniest bit of hope. I think we can all use a little bit of it at this time
I really do hope things improve for you at some point in the future. You seem like a very positive person (at least through your responses) so I hope you don't lose that through your journey.
I too, should stop looking at these forums. I appreciate them SO much, and I've learned way more on here than from any sort of doctors and I will forever be greatful for that. But it's starting to become an unhealthy obsession and I fear for my mental health if I continue to go searching for even more sad stories, and with my personality I'm more often on the suicide thread than the success story thread, which says a lot.
I think a lot of people got it from a one off noise exposure, including myself.But most people get some sort of minor ringing. And then it keeps happening and happening before it becomes permanent.
I never had this so how did it get so bad so fast
It's not going to be lifelong. I had just turned 28 when all this shit started. Significant relief will be afforded you in time—both as a commodity in itself, and with viable treatments like Dr. Shore/FX322.The thing I miss the most is that peaceful feeling of being able to walk into any environment and just have fun. Not worry about how it's going to affect me. Something that has been stolen from me for the rest of my life.
If yours is easily maskable, try sleeping with that first. I got put into a psych ward over my severe insomnia about 3 months into the ordeal, am on 225mg Quetiapine (slowly decreasing this from 300mg) and 15mg Mirtazapine. Relatively safe for tinnitus (no spikes), sleep for 10 hours now because sleep architecture in tinnitus sufferers is altered and my body just isn't good without 10 hours. Thinking of it a different way, at least that's two more hours I don't have to be conscious.I don't want to hang out with any of my girlfriends because all I'm going to hear is about their dating lives, careers, fun things they have planned, etc. I also don't want to sit around and cry about myself because I'm embarrassed of having a mental breakdown in front of them.
I just want to live without this fear. I am not a positive person and never have been, so BECOMING a positive person when I'm going through the worst possible thing I've gone through isn't likely. I don't want to pay $200 for some quack to listen to me cry when I can cry by myself in my car. Therapists don't want to help, they're just there to prescribe meds. I studied psychology for my degree so I know all about it. Even knowing how bad meds are, I would gladly take them if they didn't cause Tinnitus to get worse.
I'd make a bezno/SSRI/ambien smoothie and ingest it through a beer funnel .
Maybe I should make one anyways and down a couple of bottles of wine with it.
The terms "negative" and "positive" get thrown around quite bit around here, but to me it sounds that you are just being realistic.I just want to live without this fear. I am not a positive person and never have been, so BECOMING a positive person when I'm going through the worst possible thing I've gone through isn't likely. I don't want to pay $200 for some quack to listen to me cry when I can cry by myself in my car. Therapists don't want to help, they're just there to prescribe meds. I studied psychology for my degree so I know all about it. Even knowing how bad meds are, I would gladly take them if they didn't cause Tinnitus to get worse.
@Harley - you deserve the genius flag for your realistic summary of the facts and the situation we all find ourselves in.The terms "negative" and "positive" get thrown around quite bit around here, but to me it sounds that you are just being realistic.
I would put myself in that category as well.
I know what I have and I know, that as it is right now, there is no way to turn down the volume, except for blowing it out of my skull with a 45.
Those are the hard, cold facts as of right now.
This might change in the future of course, but when you are being actively tortured, just one single week feels like an eternity.
A therapist (whose biggest hardship to date was a sprained ankle while playing tennis) will be most likely just further insulting the sufferers intelligence by giving them all kinds of scripted "ideas", in which he/she will urge them to pretend that tinnitus is their best friend, or a new kitchen appliance (right after he/she looks up tinnitus on his/hers laptop)
All of this for a nice fee of course.
Thank you for the kind words Jazzer.@Harley - you deserve the genius flag for your realistic summary of the facts and the situation we all find ourselves in.
Also for very clearly seeing through all the therapeutic crap that we continuously come up against.
"Tinnitus: from Enemy to Friend,"
- and all that nauseating "SHIT!!"
This morning a friend phoned me to say he'd had a 'terrible' cold for five days!
Oh dear - big hairy bananas - what a crying shame!
He should try "Severe Tinnitus" for over
Five Fucking Years !!
So - very well said brother.
There is no way of comparing each other's tinnitus levels.I'm an outgoing person who never let tinnitus stop me from doing what I enjoy. Admittedly, the early stages of this was difficult and it did slow me down a bit but as time went on, I reclaimed my life. The same will happen with you.
It's "fun with friends" for several hours vs. the possibility of having "a lifetime of debilitating tinnitus". Choose wisely, and don't do the crime if you aren't prepared to do the time.I am worried about being in loud settings
It's almost to the point where there should be two separate categories:There is no way of comparing each other's tinnitus levels.
If yours was truly severe I think you would speak differently.
It is not about being outgoing - or having the determination to reclaim ones life.
It is about severity, intensity, volume, chaos!
The severest tinnitus will bring anyone to their knees.
'The same will happen with you?'
So how would you know that?
All you have experience of is your own tinnitus.
Just a point of clarification, I've been diagnosed with severe tinnitus since its onset. I have high & low pitch tinnitus. I've been dealing with this for some time and there isn't a day that goes by that I don't ask myself, what kind of day is it going to be for me today?There is no way of comparing each other's tinnitus levels.
If yours was truly severe I think you would speak differently.
It is not about being outgoing - or having the determination to reclaim ones life.
It is about severity, intensity, volume, chaos!
The severest tinnitus will bring anyone to their knees.
'The same will happen with you?'
So how would you know that?
All you have experience of is your own tinnitus.
Harley, as severe as my tinnitus is, I manage to live a good (mostly) happy life. I simply told myself that I wasn't going to be prisoner to my tinnitus any longer. And I do what I want to do - within reason. I'm no longer foolish. I know what caused my tinnitus and I avoid such circumstances like the plague (earbuds, clubs, etc). But doing what I want to do does have it's consequences at times (even with earplugs) and I pay the price that day or next. It's a balance between protecting yourself from worsening tinnitus and living a fairly happy life. It's been 9 years for me and it's been a game changer. As a previous poster commented, it's brought me to my knees at times and I quit my job because of it. It's taken its toll, but I'll be damned if I give in to it completely.Almost as if there were 2 very different, separate conditions under the same name.
One lets you retain at least some quality of life, the other one does not.
Good for you of course, but remember that tinnitus is a very subjective condition.Harley, as severe as my tinnitus is, I manage to live a good (mostly) happy life. I simply told myself that I wasn't going to be prisoner to my tinnitus any longer. And I do what I want to do - within reason. I'm no longer foolish. I know what caused my tinnitus and I avoid such circumstances like the plague (earbuds, clubs, etc). But doing what I want to do does have it's consequences at times (even with earplugs) and I pay the price that day or next. It's a balance between protecting yourself from worsening tinnitus and living a fairly happy life. It's been 9 years for me and it's been a game changer. As a previous poster commented, it's brought me to my knees at times and I quit my job because of it. It's taken its toll, but I'll be damned if I give in to it completely.