Living with Loud Tinnitus for Years

Hi all,
I'm new to this forum. I thought I would let some people know you can live with tinnitus and loud tinnitus at that.

I had a little ringing in one ear in my twenties; I'm now sixty-three. As the years past by, I got it for a longer duration and more often until finally, I had it all the time and in both ears.

At times, I could actually hear four different sounds in both ears. One ear had three distinctive sounds. In my thirties, I started having vertigo, fullness in my ears, and loss of hearing.

As for the vertigo, I had about one vertigo attack a year and had a number of visits to ear, nose, and throat doctors.

One doctor had mentioned Meniere's Disease back then, but didn't take it any further than that. These attacks continued for years until finally in 2007 I was experiencing vertigo every other day.

I was finally diagnosed with Meniere's Disease and was treated for that with Gentamicin injections to my eardum. This stopped the vertigo for six years.

To make a long story short about Meniere's, the vertigo came back in 2014 and right now I'm suffering with it every other day.

I lost my job of ten years due to it and have since retired after a period of disability. I'm trying to see if less caffeine, salt, and sugar lessens the symptoms.

I wanted to let you know about the disease because tinnitus is part of it. In 2007, when my vertigo got worse, my tinnitus was at what I told people I called, "suicide levels." I cried daily and couldn't imagine living with such horrid, daily torture.

So now I knew what was wrong with me the vertigo and the tinnitus being the worst thing I ever had to deal with in my entire life.

Because this forum is focused on tinnitus, I won't go on about Meniere's, even though my guess is that a number of people here have it too. Tinnitus is extremely difficult to live with at first. It took me some time to be able to do that.

At first I was focusing on getting rid of it and that became not only my mission, but also my problem. To put it another way, when my husband passed at a very young age, I somehow kept thinking maybe I could change that, maybe somehow he will walk through the door. I wanted things to be so different. I wanted him back, period. Then I thought about my tinnitus and how I was fighting to end it completely. Now I know this may sound strange, but finally I learned the key-acceptance. I began to think of my tinnitus as part of me, as who I am. I am someone who has tinnitus, and I have to accept it-for now. I can tell you with 100% certainty, the more I did that, the less anxiety I had about it.

Also, something else happened. The less I focused on it, the less I heard it. Please don't get me wrong. I would never say that even though I've been able to do that, that I don't have times where it doesn't get to me. I do. As a matter of fact now is one of those times.

I'm only human and lately the sound has been excruciatingly loud, for a few weeks. If you can imagine having this plus vertigo every other day, then you can imagine it would get to the best of them! In this case, I do everything I can do to help myself out of what could be a very depressing situation. I call some close friends who know my situation and we go out to restaurants (I am almost deaf and wear two hearing aids now), I try to get out everyday for a few hours or even a short amount of time. I need to lose weight so I started to watch my salt, sugar, and caffeine intake which will hopefully help my vertigo too, and tinnitus (caffeine). I'm exercising more and trying not to isolate myself as I live alone. Living alone makes all this worse as there is no one at home to chat with or help me keep my mind of myself.

Thankfully, I have some great friends and wonderful family members and all my friends understand my situation and are not bothered by it. I can't have friends who are bothered by my deafness or vertigo. Of course my tinnitus doesn't affect them. No one can see tinnitus and if someone has never had it at all or a lot, they couldn't fully appreciate the treacherous feelings it causes within oneself. I have it very loud often and when it gets that bad, I try to quiet my thoughts and make myself busy.

It does help to know you are not alone by any means. There are thousands with tinnitus and many who have it like me, very loud.

All I can say is hang in there; you can do it. I live with depression and have to fight that all the time. People always ask me how I do it. I think it's mostly from inner strength I've developed from living with it week after week, year after year.

I need sound around me all the time to help mask the tinnitus; when I go to bed I turn on the fan or in the summer the air conditioner helps. I'm still here.

Being my age now, I know I still could have another 20 or so years on the planet and I can tell you one thing. If I'm going to live, then I certainly don't want to let tinnitus get the best of me. It never will-ever.

Good luck to all who suffer. We're in it together and you are not alone.

 

Welcome to the forum @Tinian and thank you for this uplifting message even though you have had it tougher than most with both loud T and frequent vertigo. You are a T veteran of sort and surely many newer members here can learn something from you experience and wisdom. Hope you stay around to help out supporting the call for help. But your message alone is uplifting for many who are struggling. T is not an end game. It is livable be it annoying. But like you, I have accepted my T as part of my being. With that and with habituation, T tyranny is over. Thanks for your message.

 

Thank you also for your nice message. You are right; tinnitus is not an end game. I think of what Yogi Berra said, "It ain't over till it's over", and as long as we have life in us, we will fight the good fight. After having struggled with this for over 30 years, I can say with certainty it can be conquored. If I can help anyone, it would be my pleasure.

 

I'm sorry, you suffer from this for many years. Now what do you think about these many years of pain. If you have committed suicide( Sorry for saying) you wouldn't suffer from this for theses many years. What do you think?
Your answer can help me so please answer with fact. thanks.

 

Sorry if this is a stupid question, I have been on this forum a while, but do not know much about meniers, as it is not the source of my tinnitus. Do you attribute the original tinnitus you experienced in your 20s as a result of undiagnosed Meniers? And it wasn't until it became more severe that you got diagnosed with Meniers?

I am glad to hear you have found means of masking your tinnitus and finding sleep. I do not find sleep hard to come by as my depression provides me with plenty of sleep, but unfortunatly the tinnitus in my most affected ear is not maskable, so I hear it over anything, and in fact noise sources make it more apparent, even providing adittional tones, through what I've come to learn is called "recruitment" or "hearing distortion" or possibly "reactive tinnitus" though reactive tinnitus is more commonly referencing tinnitus which raises in volume with outside sound stimuli (which I also have to a degree). I've also come to find that I hear my tinnitus even in dreams, which leads me to waking up, which is an unfortunate cycle.

I hope you find some help on this forum, as there are many other meniers sufferers here. If anything it has been my observation that Meneirs sufferers, despite having more severe hearing problems, and additional severe problems beyond hearing such as balance, vertigo and migraines, somehow often seem more emotionally at ease with their condition, as they have a level of understanding of what has caused it and what causes their condition to develop. In comparison to people who have severe T+H and are unable to predict what may worsen their condition in terms of everyday sounds, and even others without noise induced T, who are unsure of what is causing their condition to begin with.

Welcome to the forum.

 

@Tinian,
I have Menieres Disease also for about 12 years and went through a tough time for years .
I'm more or less now near burn out and left with hearing loss and sever Bilateral tinnitus but do still get occasional flair ups of all the other symptoms.
We do have a Menieres Thread on here somewhere....lots of love glynis

 

Dear Glynis,
Thanks for your kind words. I'm sorry you too have to live with Meniere's. I hope you are at burnout stage; I've been hoping for that, but will do my best to just get through each day as it comes. I will look here also for Meniere's info. Fortunately, there is
much info out there and lots of
support. I'm hoping you have a good
and healthy new year. Hugs to you.

 

Wow such an inspiring post, thank you.

 

You're quite welcome Candy. Thank you.

 

Hi @snow47,
During the toughest period of my suffering, I always thought that the future will be always like those dark days of torment and I could hardly believe that people can still enjoy life with severe tinnitus, not to say I also have bad hyperacusis to go with it. As the tired and stressed out brain couldn't find a way out of the sufferings, it was dangling different solutions in front of me, including suicide ideations. I searched youtube on stories of people with near-death experiences. While most talked about a wonderful spirit realm, those who had come back from attempted suicide report such an unpleasant experience that they never would want to do it again. I decided then I rather stay put and accept my T, and do my best to make a life out of it. I read many success stories and copy their successful strategies, such as giving it enough time, living as normal as possible while finding joy amid the pain. I sought out strategies such as CBT, mindfulness meditation, relaxing exercises and I borrow strength from guiding lights, people who overcome insurmountable sufferings and thrive; I used masking all day and I used meds to calm my nerves and to help me sleep. Anything that helps. I also develop my own strategies which I share in my success story. Things began to improve with time. Nowadays I live a normal, happy and absolutely enjoyable life. My body has hardened to T and now it doesn't have any tyranny over me and my life. Glad that I didn't waste my life in an act that I might regret for eternity. The future turns out much brighter than what I projected at the worst time of suffering, which is usually the first 6 to 18 months. Give yourself some time and read up lots of success stories. Here is my story if you wish to read it. Don't give up. Hang in there. God bless.

https://www.tinnitustalk.com/threads/from-darkness-to-light-how-i-recovered-from-tinnitus-hyperacusis.3148/

 

Thank you for you nice words. Even with read this post I feel better. thank you for that. But I can't see any future. I don't know how accept this. It always changes ...

I know We are all in the same boat. My words are the same (hopeless). I shouldn't say this words. Sorry.

 

Don't have to say sorry. Believe me if you read the success stories enough, you will sense that most people started off feeling this way. You are just being human like most of us, dealing with much sufferings initially. The success stories contain lots of insights how people turn around their sufferings. I highly recommend reading them to cheer yourself up and to know that T is not an end game even though it may appear so initially. By the way, if your T seems to come from pressuring your jaw, you may have issue with TMJ. Search this and you may get lots of threads on this condition. You can also post your condition in detail with your own thread on the main support forum so a much larger membership can read it and advise you. Hang in there. Your T is relatively new. Give it time and learn some strategies or get some treatment. Things will improve. God bless.