What's the worst part about having tinnitus?

I was wondering what you think the worst part about having tinnitus is, I think for me it is the constantly worrying that it will get worse.

 

Me too...and wondering if I'll ever get through a day in my life when it isn't such a focus that I thinking about it every minute of the day. Also, how am I going to cope with this as I slowly age into an old woman.

 

Hopefully within 10 years there will be a cure, or the very least a treatment that lowers the volume.

 

Each day has enough trouble of its own.

 

I retired a couple years ago. I was going to spend time going to concerts, festivals, and playing (electric) music. Not now.

 

Matt 6:34

 

Hey Logan, great question! Because there are so many different manifestations and levels of tinnitus, and it affects people in so many different ways at various points along their journey with T.

First, I have followed your posts lately, and my estimation is you are only going to get better!! You've been (or are still in) to the dark place many of of experience early on with T. My first 4-5 months were pure hell!! But it does get better!!

But to your question, for me the worst part of having T is lack of sleep and the effects of that. Loss of concentration during the day, edginess, memory loss, etc... Although all of that has gotten much better lately!!

 

Lynnette, that day is coming!!! Hang in there!

 

Agree with Jeff. It's tough but hang in there and try and live a full life. My Ear specialists have all said keep doing what you do. My T got to a point where it got a lot louder whenever I played sport as the blood rush would make it louder. Doc told me to keep playing basketball, whatever - you should never stop doing things because of your T (bar perhaps loud concerts!). If you do it is starting to win and you're starting to close up and lose the battle.
I often find when I'm busiest I habituate better. Then I find at the end of the day my T wasn't even part of my day. It's a nice feeling...

 

For me the evenings before going to bed are the worst part of T, as I have a hard time relaxing and falling asleep. I would also like to sleep better. Fortunately my sleeping has already improved somewhat from what it was in the autumn. Sometimes I don't like to wake up in the morning and realize my T is just as loud as the previous day. Would be nice to have quiet T days also.

 

I have the same thoughts..I have days that my T is so bad I know I could not live with it for any length of time at that level..It always calms down but I know it has the potential to rise to unbearable levels.

 

Taking the necessary precautions; limiting my social life; worrying that T will get worse

 

I never worry that it will get worse. In 99.9% of cases it won't get worse unless you do something deliberate and basically stupid. My hyperacusis resolved itself over a period of time and despite my initial fears I have encountered noise of over 80db's on many occasions including today when I rode past 2 workers using a concrete cutter. I turned my head as I passed it and even though it was loud my exposure was brief and not direct. I could be killed any day on the road but I won't give up something I love doing. You should'nt put your life on hold but you can use common sense. Simply you have a choice to either put barriers in front of you and fear your tinnitus or live your life as best you can. We know shit happens and it often happens despite our best efforts to be careful, respectful, considerate or just a decent human being, i.e. good people. There is no rhyme or reason or logic, it's the luck of the draw.

 

I agree with a lot of what others say. That is that the worst of it is behind me. I came down with it in 2010 and it was loud and constant for many months, but now I have just as many good days as bad. so it does keep geting better. I did make a lot of changes to my life stile, which you are learning to do also. We are forced to make changes because of this alarm going off in our head. To tell you the truth, I am a lot more healthey than I was in 2010, and the alarm in my head is a lot less. Keep going forward in listening to your body and make the changes to make the alarm go away! I believe that it will go away!

 

Stop worrying about T getting worse. The only thing you can control is exposure - just pack a set of soft foam earplugs with you for "just in case" situations, or just close your ears with your fingers.

Other than shielding yourself from excessive loud environments, you have no control over what will happen with your T. Don't worry about what you cannot control. You will waste a lot of energy doing so.

 

not being able to let go of thoughts and dive into inner silence

 

Worst part is you have absolutely no control over it. You only have control
Over your reaction. When sufferers accept this t will lose it's grip.

 

For me the Worst part is the reflection on the past and wondering if there was something I could have done better to avoid it and from time to time wondering whether it will unexpectedly go worse/changes the tune. I guess the not knowing May be the worst lol but hey can't predict everything oh well

 

I will have to address this question in two stages. In the initial stage, it was all hell.

I usually woke up in the morning with loud screaming ultra high pitch tinnitus shrill, something which used to drive my brain into relentless anxiety and panic attacks on auto mode before I was fully awake enough to reason myself out of these attacks. In the first few months, I had to immediately reach for meds, Ativan, Prozac & what have u whenever my loud T woke me up. No amount of will power could stop this process, so much so that I was worrying my doom would be a foregone conclusion. I mean how do you survive something which didn't give you any chance to fight it. The problem was that I had suffered decades of anxiety and panic disorders. My brain tended to react with anxiety/panic mode on life's challenges. So my brain facing these new and alien T sensation had no chance. It was so freaked out by my T (and hyperacusis soon after) that it just caved into panic on auto mode. Each day was a long dark day. Every night when I went to sleep, if I could sleep at all, not wishing to wake up to repeat the 'torture' cycle again. I mean besides dealing with T & H, I also had to deal with repeated episodes of anxiety and panic attacks.

It is not just the ultra high pitch loud tinnitus shrill or the piercingly hurtful hyperacusis, there were also the dreaded symptoms of anxiety and panic attacks. These A & P attack were very alarming and hurtful sensations, with heart attack alike symptoms of chest pain, tightness of chest, shortness of breath, heart palpitations, sore muscles and pains, headaches of all kinds, sharp pain like migraine, tingling pain like being pinned all over the skull, and numb pain with the brain like being enveloped in a fog not able to think clearly. There were nightmares, profuse sweating, strong adrenaline rush, fears & phobia about things & about the future, feeling disoriented, dizzy, lost and helpless. These symptoms coming on auto mode made it very hard to live with my T & H. During the darkest period, day and night, T, H, A, and P all conspired to attack me with great sufferings, both mind and body, causing great despair and inevitable depression and sleeplessness. I had to depend on meds to survive during these dark, dark days. My situation was hopeless and often the big 'S' word was dangling in front of the tired and stressed out mind as it saw no way out, no light whatsoever at the end of that long dark tunnel. I never thought I would recover.

Well, tell me about the worst part about my tinnitus back then. It was all of the above. Now, it is a different story. I have recovered from the nightmare and the horror show. T doesn't scare me anymore and it cannot even get my brain to zoom on it. The brain now hardens to the sound which is still same as loud and screaming high pitch but I don't give a dime. The T nightmare is over for me and I enjoy my life now regardless of what T does any given day. Freedom at last.

 

One of my favorite horror films is Ingmar Bergman's 'Hour of the Wolf' in which Max Von Sydow plays an insomniac artist. I'm always amazed when film can capture something so banal and personal as insomnia without going over the top with it. The movie has long stretches where Max just sits with a meager candle in a dark bedroom and always seems to be mere inches away from sleep but it never comes to him. His wife is always with him, she's able to sleep but stays awake nonetheless so he won't feel alone. The two of them are trapped in this dark, sleepless world with demons that will never leave them in peace. The 'hour of the wolf' is the hour between 3 and 4AM, the hour in which people tend to die and babies tend to be born. That damned hour during which our demons are at their strongest and we have no defense against them because we're just so tired. In the movie, Max is kept awake by his guilt over what he's had to do for his art whereas we have out T. Given what happens to Max over the course of the film, I think I'd rather be kept awake by T than by guilt.

 

Billie, I really appreciate your posts. You articulate so well what so many of us have gone through, both bad and good! I am so stoked to hear where you are, you've made it to the "other side"! I am right behind you. T still bugs me, but it's just really more of an annoyance. Only very occasionally do I even entertain panicking or freaking out. And now almost always stop any anxiety or panic before it sets in. Your post and experience are very encouraging. I hope others receive that as well. Best to you!!

 

Constant fear and worry that it will
Only get worse...that there will never
Be a cure ( which i pray and hope for
One everyday) and that people
Who dont have this really dont understand.. Its like you have to play an audio file or video sound of T for them
To then realize oh shit thats horrible!! Glad i dont have that! And everywhere you turn you see people blasting there ears with music and working in loud places without earplugs.. And if you go to tell them to protect there ears they say i dont care.. Yeah until you get this then you will care. Thisss nonsense needs to finally be cured.. And the worse part bout it is being so frusterated and angry at doctors for not being able to figure out how to get rid of it. Its always possible treatments, new hope, but seems to
Never be something that is possitively figured out and can be erased!

 

other than the actual noise in my ear? lol I worry it will get worse, and the other thing that annoys me is that I'm constantly thinking about it ever since it spiked back in December. I've been doing really good with staying positive and taking the "I could care less" approach, but frankly it's just always on my mind. Like a song I can't get out of my head.

 

I totally follow you on this.

 

Hi all,
Just wanted to say, that I've been to a couple of Audiologists that told me that it will certainly not get worse (unless you have some loud noise exposure again in the future). And by "loud" they mean REALLY loud like a concert or working on a building site or things like that. Not everyday noises like the movies, or pubs, or coffee shops. They are all within acceptable loudness ratings. So trust that. It won't get worse. So the actual worst thing that can happen to you is that is stays this bad. Which actually is also unlikely. In fact, it'll get better, given time. That last sentence I struggle to believe coz mine hasn't gotten any better at all. But if I don't have faith in the thought that it may get better then I'm just sentencing myself to a life of misery.

 

Heya! Yer, I've been skeptical of what they said about loud noises, like the movies, or pubs, being ok. I do have some really cheap earplugs which I have in my handbag but have no idea if they even help at all. I mentioned ototoxic medication to both my Audiologists and also psychiatrist and they just dismissed me as if I was speaking bullshit and being paranoid. As for neck injury, I do have an extremely tense neck. But again, was told this doesn't contribute. My ear nose and throat surgeon actually told me in these exact words "i have no fucking idea why you have tinnitus". And then I left feeling pretty shit about things.

 

Days of mental mistakes and confusion. Can someone answer why there are days where my t is hardly audible and the next day it's back with a vengeance. Is it because the nerve or neurons are fired out and are replenishing. Just something scientist should look for .

 

Thank you Jeff for the kind words. I am sure you will be there on the 'other side'. You have the right attitude and approach. The only thing will be time. It took me a few years to get used to T to the point my brain just hardens to it and don't care about it any more. You may take less time to be there. If my posts can be of any help to any one, it will be well worth my time. I am returning the kindness I received from some selfless & caring folks before. So I am doing my part to offer some hope to the newer sufferers. I wish you all the best too.