I really hope we can stay in touch, you have helped so much.
Steve, thank you for the kind words. If I can be of some help to others with tinnitus/hyperacusis, then this is therapy for me too. I really mean it. It's just another "positive" that I can absorb.
In spite of the crippling seriousness of this affliction, your attitude seems to be pointed in the right direction and this alone is a huge thing in your journey towards achieving some degree of habituation where those truly dark days are something in the past.
For myself, I have long ago let go of any real expectation of being free from this. At first, this may seem like a depressing thought, but actually it was a place where I had to get to if I was to really begin formulating a solid point of reference to begin my real journey of living with tinnitus/hyperacusis. This is a journey. We didn't ask for it, and we all would rather not be on it, but never the less,... here we are.
Like I said above, I have given up on expecting a cure. I needed to do that to move forward. For some, that may not be how they want to tackle this journey, but this is what I needed to do. My journey is more one of finding my peace with tinnitus/hyperacusis. Finding that solid ground of tolerance. Thus far it has been working pretty good. Like I said in my previous post I am discovering that I am having longer and longer times where I realized that I didn't think at all about my tinnitus/hyperacusis. So I guess you could say that my journey is one of lengthening those periods of (non-event). Sometimes regarding my tinnitus/hyperacusis it's kinda like... "Oh, it's you again... yea, yea... I know, your still here. Okay, okay... I know, your never going to leave. If you want to stick around,..fine. But you need to know, I have things to do." To some, it may seem like a fallacy to treat severe tinnitus/hyperacusis this way, but this is where I had to get. To not look at it as my enemy, but more like my crazy mother-in-law who lives with us and I am stuck with... LOL.
Okay, just a little bit more on some practical things that help me through the daily grind of life. I already told you about utilizing ear plugs and headphones etc... I'll just add a little more to that.
Regarding "noise cancelling" devices, In addition to the noise cancelling headphones, I also make use of noise cancelling earbuds. The ones I use are the Apple models. They don't seem to work quite as well as the full headphones, but they are much less visible, thus better for when I am with people in a home environment or whatever. For example, I mentioned before that (before the COVID-19 Virus) I have weekly gatherings with a small group of people from church. For this, I always wear those Apple noise cancelling ear buds now. They seem to work the best "for me" in this type of environment. Plus they aren't nearly as visible as big headphones. Again, you need to experiment.
There are some people out there, (you will see some of their posts,) who are very strong in their opposition to using noise cancelling headphones in the way that I use them. So I do say, use some caution in your use of headphones, etc. Having said that, we must realize that there are different types of tinnitus/hyperacusis. By far, the most common type of tinnitus is "noise induced" tinnitus. I'm not talking about "noise-reactive" tinnitus/hyperacusis, like what I have. I'm speaking of tinnitus that was caused by subjecting your ears to very loud ear destroying noise such as listening to very loud music using headphones, or going to loud concerts without ear protection, or some type of on the job noise w/out ear protection, etc; causing genuine damage to the inner ear, resulting in tinnitus. This type of tinnitus is much more common than the type that you and I have. In other words, unlike noise induced tinnitus, there is really nothing wrong with the mechanics of our ears. Something happened in our brains that is associated with the auditory nerve. So, because of my own experience with using noise cancelling headphones, I am confident that if used with some caution, they are working for me without fear of making things worse, like when I am watching TV with them, I turn up the volume to only what is required. The last thing I want to do is cause actual damage to my good ear resulting in the other more common type of tinnitus. Anyway, I understand others fear and warnings about using headphones, but in most cases we are talking about two completely different kinds of tinnitus/hyperacusis.
One more point to offer you, is how you deal with people you have to deal with whether they be co-workers, friends or relatives, etc. This thing we have... "tinnitus/hyperacusis" (at least for me) very much effects how I am with people. Before tinnitus/hyperacusis I lived a very social living. I still try to do as much as I did before (socially) but I must be honest, my social life has suffered a bit. One of the really unfair things about tinnitus/hyperacusis is that nobody really gets it, unless they have it too. I have a circle of very close "friends" who I enjoy being with. They have all listened to me try to explain to them what it is that I am dealing with. I describe to them what is going on inside my head. I tell them that it never, ever goes away. I tell them all of this, because I want them to understand if I just can't do the things and be at all the things I was before. Yet, still... it isn't that unusual for one of my friends to say something like... "Do you still have that tinnitus thing going on??" I usually just smile and say.... "yea, I still have it."
One time I was with a group of about 5 or 6 close associates and my tinnitus/hyperacusis came up in conversation. This time I had downloaded this "Tinnitus Sounds" app on my phone. It's an app that you can adjust to make a noise that is very much like the noise that you hear in your head, only it plays out on your phones speaker. So, I got out my phone, opened the app and made the proper adjustments that mimicked the noise in my head, (you know, like the sound of an idling Boeing 737 sitting on the runway) LOL... anyway, when I played it for them, I said... "You hear this? Sounds really annoying doesn't it." I could see their eyes getting big. "Well, just imagine strapping this thing to the side of your head and spending the rest of your life like that." That's when their jaws just dropped and I could tell that they really could not accept that this is how I live. And to be honest, I don't hold that against them. It's not something that you want to think about someone that you are close to. And that's okay, with me. I just needed to one time try and put them in my shoes for a brief moment.
Of course, time goes on and nobody can see your condition. Nobody can hear what you hear. They don't see you in a wheel chair. They don't see you limping down the street. They don't see you with a cane in your hand searching for the curb. They don't see you making sign language motions. They "see" nothing. Yet, we are just as crippled as all these other "seen" handicaps. You will get some argument from people who will claim surely there is no way that having tinnitus is as significant a handicap as being blind, paralyzed, or completely deaf, etc. Most of those who hold to this notion likely are not privy to all those who have taken their lives because of Tinnitus. This, is all a part of the unique aspect of tinnitus/hyperacusis. I sometimes refer to it is the "lonely handicap". Even other tinnitus/hyperacusis sufferers out there remain unknown to me, unless the topic comes up by accident. What a deal, huh?
Having said all that (about other non-sufferers) I now am in a place where I have forced myself to not really care about how others treat me, or may not have the kind of understanding that I would like to have. It's not their fault. It is what it is, and I just have to do what's best for me to continue down that road towards that elusive blissful tolerance and habituation. How I feel, is way more important now than how they feel. Yes, I have become a bit more selfish with how I am with others. Even if someone is offended, I really don't care. I am tired of trying to... "explain." I am blessed to have a few very close relationships with some who truly do make every attempt to understand... Including my wife of course.
As you move forward, you will have to make your own way with the people that are in your life. In time you will settle down and be at peace with how things are going in that regard. As in many other significant personal traumas, time is your friend. With the proper focus and attitude, time will dull many of the sharp edges of the painful issues that emerge out of this lousy hand we have been dealt.
One last thought. I really do hope that this dialogue is of some help on the "journey". Having said that, we must always remember that the ultimate goal is to put it behind us... to not give it the kind of attention that it seeks... to take away its controlling factor... to the point that it is simply a non-issue. This is the sought after destination.
Years ago I once stayed in a friends apartment for two days while they were away. The apartment was on a bluff which was right above a railroad track. Every night a very loud freight train would go by blasting it's horn. Of course this incredibly loud noise would wake us up. I recall my wife and I just staring at each other in bewilderment. How in the world do people live like this? Every day and night three or four of these very long trains would go screaming by! When I talked to my friend later I asked him how he could live with that noise? He kinda laughed and said... "Oh yea... we just don't hear it anymore." Of course the train noise wasn't a constant noise 24/7, but you get the point. I tell you this because I don't want this dialogue we are having to be a "source" of giving tinnitus/hyperacusis more attention than it deserves, or that is required. Remember, the goal is to remove the "attention" it is demanding of us.
There is another tinnitus/hyperacusis sufferer of whom I have an ongoing relationship with who approached me after reading some of my posts. This was some time ago. I shared many of the same things with him that I have with you. Eventually we have gotten to the point where we never talk about our tinnitus anymore. We still have a long distance relationship via email, etc; and we of course know of our "special" commonality regarding tinnitus/hyperacusis, but we don't talk about it anymore. It just so happens there are other similar things we discovered about our lives that have now become the focus of our "relationship"... instead of tinnitus/hyperacusis. I would say that this is one of those success stories. It is also why I don't spend nearly as much time on this website as before. In fact, I took a long break from this site when I began to discover those "non-event" times stretching out longer and longer. I am now much more secure and confident in how things are and I now find no adverse effect in spending time here. For me now... spending some time here does not interfere with the habituation process. I think I am a little beyond that now. This is just more food for thought for your own very personal path. Everyone is different.
Steve, I hope this little portion is just another healing assist for you. Be encouraged. In my time together with my weekly group (on Zoom now) I am reminded that "out of darkness, light shall shine. And, in our weaknesses we are made strong". I have really taken this to heart. It is the path I have chosen.
Blessings my friend...
-John
Member
I will download the app later to see what benefits that may give.