Three Year Anniversary and So Much Better

I suddenly lost all hearing in my left ear exactly three years ago. My deaf ear immediately filled with pain and noise and doctors told me to learn to live with it. For the first year, I could not fathom how living with it could be possible. I just wanted to die instead. I was frightened and angry and depressed. I cried every day.

Today, I do a pretty good job of living with it. I don't know how much of my recovery is due to habituation and how much is due to physical healing. I think it is a combination really. My deaf ear still reacts to all sound in my good ear. I hear and feel a hissing noise with every little sound. In the beginning, this drove me insane! It overwhelmed me and I could not ignore it. Now, it's just a fact of my existence. I guess this is habituation.

Some of my tinnitus noises have diminished somewhat or ceased altogether. I don't think this is because of habituation. I think the noises are actually going away. A constant crackling noise that tortured me constantly for a couple of years is completely gone! I still hear (and feel) clicking, knocking, zapping noises but not constantly now. I do still hear a constant electrical static noise and my deaf ear always feels injured, but the pain is not as extreme as it was during that first year. There are spikes when the pain increases but they don't happen as often or last as long as they used to.

I've been forced to make changes in my lifestyle. I had to give up my hobby, my music. I have to stay away from some really loud venues because loud sound hurts, and I struggle to hear in social situations. I'm not thrilled with the changes but I am no longer depressed. I'm not ready to submit a success story as I still hear and feel the tinnitus every minute of every day. I am ready to submit my "improvement story" though.

 

@Lorac,
Lovely to read your improvement story and hope your future becomes even brighter because you have come through the worst and a shining example to other members....lots of love glynis

 

@Lorac great to hear your story ! Hope to get there soon!!!

 

Great story, you fight like a champion. Hope one day you will be able to go back to making music. Keep it up!

 

Thanks for posting this. I like hearing from those with severe tinnitus that actually do get better.

So you had noises that were constant for years that went away? Here I was thinking if it has been constant for 6 months it's permanent.

 

@Alue I think you have reason to hope that it will reduce/change for the better. It COULD. Six months is not long enough to declare permanency. It may be what is spouted again and again in the "literature," but when people talk anecdotally about tinnitus leaving, it is frequently when it had been there for more than 6 months!

 

Yes, it's possible. It's just this high pitched electric head buzzing seems more permanent. Not sure how to describe it, but others on hear have experienced similar. The fleeting tinnitus I would get every once in a while went away after my open label injections with AM101, but this head tinnitus (the only one that really bothers me) has stayed the same since onset. I don't want to turn this thread about me, just not coping well at the moment.

 

@Alue Very sorry to hear that. I hope it gets better for you. I really do.

 

Thank you all for the kind words.
@Alue
I had one very annoying noise that was constant but is now completely gone. It was a constant crackling sound that I could also feel and it drove me nuts! I can actually remember wishing for just that one sound to stop! I'm not sure exactly how long it persisted but it was more than six months, probably more like eighteen months or so. Some other sounds are decreasing in frequency. Some might be here to stay but I am improving.

 

@Lorac thank you for sharing. Hopefully I can be as strong as you. I have tensor tympani syndrome which are very annoying and loud spasms inside my middle ear. I feel as hear it and they happen a lot. Sometimes I just wanna cry and die because my severe OCD can't handle it.

Do you have any tips on conquering these permanent changes?

 

@OPlax ,
I don't know if I can offer tips to anyone here because all of our tinnitus situations are so different. I can only post about my own experience and hope that others can relate. I just look at the world and I see the glass as half full in spite of the unwanted changes that have come into my life. I am living in Michigan's fruit belt and it's July. There are beaches and peaches!
Your OCD makes your experience with tinnitus uniquely challenging and I hope that you are receiving help with the OCD. Please don't feel like crying or dying.

 

@Lorac

Thanks for the kind words. After all of this I am definetly considering a therapist or something for OCD.

I am trying my best with TTS (taking Magnesuim supplements, getting more sleep, etc) and am hopefully praying that Botox in my ear or surgery will relieve it forever. I can only pray and be hopeful!

 

Ttts is the fluttering thump in your ear?

@OPlax

 

@Lorac
Thank you so much for your post. I'm having a difficult day and came on this site for some comfort and you gave it to me - enough to keep on keeping on.

 

@Lorac, did feel dizzy for the first 6 to 9 months?
How long did the hypercusis last? Or do you still have it?
About the aural fullness? It's driving me crazy!
Thanks

 

@Dominic1955 ,
Hello. I'm sorry that you are still struggling.
I did not have problems with vertigo beyond the first month. I was given a shot to control nausea right away but I continued to feel dizzy for a more few weeks. After one month, a treatment called the Epley Maneuver brought the dizziness under control. I still have the aural fullness always but it doesn't hurt as much as it used to. It is uncomfortable. My deaf ear reacts to all sounds I hear in my hearing ear and the audiologist called this hyperacusis. I feel and hear the feedback. This hasn't changed but I expect it now. It's how I hear the world and it bothers me less as time moves along.

 

Lorac, this is very encouraging. Thank you for sharing. I've felt better and better.

 

I've just seen this story Lorac. And it's just what I needed to hear justnow. That healing and improvmement does happen.... slowly. Thanks for posting it.

 

@AuntSally ,
I think for most people, things do get better over time. There are a few members here who have unfortunately had their T increase over time but I believe most people either experience a tinnitus reduction or they just get better at living with it as time goes by. Many people who see improvement probably just stop visiting the forum.
I am dealing with a spike this week, which in my casemeans an increase in pain. I am confident that I will return to "normal" again though. I don't have any of the anxiety or trauma that I experienced early on, even when I am living with temporary spikes. I don't want to go back to 2013!

 

@Lorac I must admit your scenario seems so similar to mine. and Im so pleased to here that it has calmed down over 3 years. I cant wait for time to fly by and i can start to habituate my T. I also have the changes in volume of my T in the deaf ear which is annoying, but just reading how you are coping has really helped me this week. I went mountain biking with a friend today which was great, and i couldn't here my T at all. then we went for a Pint in a local pub where the T was mega loud, but I just kept ignoring it. I have a reminder on my phone each week telling me I am 1% better and not too rush. I'm hoping to be fairly normal again in 2 years. Then I'll be planning my 50th road trip in California, so I really want to be back on track for that!!

One question that I have for you is whether you asked about a Cochlear implant, since I have read that they can reduce the T since the T is casued by lack of sound being listened to by the brain

Thanks for any positive comments by anyone

 

Thanks Lorac. -- Glad to hear that you are accepting it and going on with your life. -- I didn't lose hearing but have Mr T with me all the time since doing a stupid think at one concert.

I kicked myself for a long time but we can't go back in time and just need to get stronger. -- Contact me anytime for support! Sincerely, John

 

John, its possible that even if you didn't cup your ear you may have still gotten mr t, just a thought.

 

No because we were in stands in an outdoor stadium (Wrigley Field) and I kept feeling a burning sensation when I was cupping my right ear (where my T is).

I would stop and then do it again when the burning stopped. -- I was being drunk and stupid.

Ironically, I left a concert early from the same band 15 years prior because our seats were right in front of the speakers and it was way too loud.

I just nod my head in disbelief every time I think of it. -- I was always so careful about loud music since, years ago, a college friend of mine totally ruined his hearing from consistent loud music. :-(

 

@Lorac We've messaged in the past, although I read the responses above and thought that I would contact yuo again, since I am 6 weeks in to what you also have. I wonder how much better do you think you ar over 3 years, and how habituated are you. Do you think you are 80% back to the original you, or less. Obviously you wont be back to the original due to lack of hearing. I can't wait to start habituating. I have set backs. I think I am starting to get use to this but then last Saturday I went to see my daughters in a loud cheer leading performance, and my T went through the roof. I'd be happy to be back to normal in 5 yeras, as long as I am going the right way

 

Hi Dave,
I think you have a really good attitude about your situation. After only six weeks, you already accept the fact that improvement will take time and you seem to accept the idea that life can be abnormal but still good. It took me much longer to get there. My main hobby before snhl was playing music so the impact on my life was huge. I lost my artistic and emotional outlet and I lost social connectivity with fellow musicians. I can't get back to normal or even 80% normal because I used to be a musician and now I am not. I have had to it invent a completely new normal instead. It took me a very long time to stop crying about what I lost and what I cannot do, and to focus instead on what I still have and what I can do.

My children were already grown and gone from the nest when this happened to me and I think it would have been really tough to deal with my ear issues while still raising kids. I understand that you want to be there for your daughters and I think you should figure out a way to do that. You can't go back in time to capture these moments later on. Could you wear hearing protection at their events? Could you slip outside for breaks during the performances? Are you able to retreat to silence afterwards for some recovery time? Sleep is a wonderful reset button for me.

After three years, my deaf ear still reacts to every sound in my good ear and I don't have any reason to believe that will ever change. I have changed my life to accommodate my condition. I try to reduce noise exposure by choosing quiet hobbies, quiet restaurants and smaller gatherings but I don't let life just pass me by. I continue to be there for the people who need me. I don't srive to be normal. I strive to be happy and I am a thousand times happier than I was three years ago!