I Hear You Tinnitus, Loud and Clear

[Corrie]

I have to say I'm really happy I found this site, so I can talk about what's been going on within my head to people who truly can appreciate and understand what I try so hard to explain is happening to me. I've had tinnitus for as long as I can remember, a soft ringing that was very manageable and could be ignored unless in complete silence and even then tolerated. However 6 months ago I started noticing the volume had gone up considerably more noticeable and started experiencing bouts of vertigo, then a month ago my world changed.

I woke up on a Sunday morning with some vertigo and I felt like my ear was plugged somewhat like wax buildup. Didn't really think much of it and flushed it as I have done in the past but with no results. Again I wasn't to concerned it was just annoying. The following morning I couldn't hear a thing out of that ear except a very loud high pitch sound I can only describe as high voltage power line screaming.

This continued into the night by then I started having panic attacks (which I've had under control for years) my husband took me to emerg, they ran CAT scan, MRI and other tests with no results and sent me home with "it must be inner ear" and some anti nausea meds.

That first week was indescribable, I truly thought I was losing my mind (and that feels like an understatement) I was angry, frustrated, scared but mostly feeling isolated and left abandoned to deal with this on my own. (Don't get me wrong my husband stayed home with me that first week for support But he felt totally helpless) the only thing I got from my doctor was strong ant nausea pills, no support no suggestions to let me know everything is going to be okay Corrie just more pills for panic attacks and an appointment to see specialist in 2 weeks time (that was their "priority time for me" felt more like eternity)

I am so grateful that I meditate as that was the only true way I could calm myself, that and self talk. I have used this for many years for my panic attacks and pain and realized this was managing this new challenge. I stopped fighting the noise and accepted it as a new part of me, which then helped me to discover other little tricks to help ease the craziness within me. Like always having the radio on, background noise helps distract me. Being outside is calming, reading even watching TV helps. Night time is the worst as I sleep with my good ear on pillow so all I hear is silence with the loud high pitch tinnitus. Now this my sound silly to some but I started singing Kumbia ( why that song I have no idea) I sing it very slowly and it helps calm me which then allows me to fall asleep. I still have difficulty with a lot is people talking and loud noises seem much louder in my good ear which then adds static sound in deaf ear.

I feel like I've come a long way from that first week and really didn't think I'd ever be able to function as well as I am now.

I also have come to realize that no matter how I think be explained what I have endure 24-7 to people they simply don't understand. At first when I discovered an audio of the sound of tinnitus on you tube I was sooo excited that people would finally be able to hear what I hear every second of every day, but as soon as I played it they wanted me to turn it off because they couldn't stand the noise, but I could see and feel they truly didn't get it, I just wanted to scream at them I don't have an off switch!! So I just don't talk/share it anymore and that's okay. Hence the feeling of isolation.

On a positive note I am so grateful that I can hear in my other ear and I still feel a deep gratitude for all that I do have.

I'm going thru steroid injections in my eardrum and was also put on Prednisone for a week with hopes I'll get some hearing back, if not I will be fitted with a hearing aid but the tinnitus will stay regardless. I can live with that

Thank you so much for giving me an avenue to unload all that has been inside of me, just knowing I'm not alone with this and the knowledge that there are people who will truly know what I experiencing is comforting. (Sorry it was so long but I really feel good sharing)

 

[JoyBenz007]

Hoping the volume settles! Best of wishes to you

 

[Ecip]

Roger that, Tinnitus, we hear you 5 by 5. lol.

 

[Lorac]

Welcome @Corrie!
Your story is similar to mine in some ways. I lost all hearing in my left ear in 2013, sudden sensorineural hearing loss probably caused by a virus. It started with extreme vertigo but vertigo is just a minor problem for me nowadays. I still have constant discomfort, fullness and tinnitus in my deaf ear. Every sound I hear in my good ear causes an unpleasant reaction in my deaf ear so I do not benefit from playing a radio or other background noise as a distraction. I do enjoy being outdoors in nature and I also enjoy reading. I do not have too much trouble sleeping and I think of sleep as my vacation from tinnitus - no pain or noise when I am not awake.

Like you, I am grateful for my good ear and thankful for all that I do have in life. It took me a while to arrive at that mindset but I am there.

I hope you have success with your current treatments and are able to recover some hearing. Please keep us posted about that. In my case, the prednisone treatments did not work and I did not recover hearing. I sampled two different types of hearing aids designed for unilaterally deafness and I rejected both because I actually had more trouble functioning with them than without them. I don't mean to discourage you but I do want to caution you to sample first, as these things are expensive. If you are able to recover even a small amount of hearing, you will have some better options with hearing aids. I am crossing my fingers for you.

 

[Vicki14]

Welcome to a fab forum @Corrie! I think most of us emulate your panic, stress and frustration at living with this cruel unpredictable Condition!!
I'm so delighted to hear you've have managed to 'tame the beast' and find a way to cope with this. Love your positivity!!keep it up! Xxx

 

[Corrie]

Thank you Vicki I really appreciate your acknowledgement, finding this forum for me is like finding a beautiful gem in the murkiest mud.

 

[Kolisar]

Welcome @Corrie . I'm happy that you found this forum. There are a number of great posts here that have helped ma and probably many others. Search out @Michael Leigh , @Bobbie7, and @billie48. They have made many inspirational and hopeful posts that will, hopefully, help you cope.

 

[Corrie]

Thank you all for the encouraging and kind words So far the steroid injections and prednisone have not been successful. I feel I'm coping with this better than I thought possible. I am having some problems with the deafness in my left ear though in so much as I struggle with where some sounds are coming from. I get confused because the sound/noise tricks my brain into believing it is coming from the opposite directions then where it actually is, if I misplace my phone and it rings I'm looking in the direction I think I hear it is but it's not there then I start getting anxious looking all over for it lol
I have to admit T is probably the greatest challenge I've come across in my life as the T is so loud and constant I find it exhausting functioning as myself but I'm determined to live with T not let it consume me.
I'm also realizing that unless one is truly experiencing Tinnitus, the non-T can not understand nor even imagine what I hear 24-7, as when they are listening to me trying to describe the volume of the piercing sound, they look at me and see the same person they have known. My appearance is the same, I still talk, laugh and interact as I always have but what they can't see is how exhausting it is trying to filter through the shrilling noise vibrating in my head. Their not understanding is much like how most of society still struggles with unseen mental illness and disease (they need to see it to believe it). I guess I'm having a bit of a tough day and this is the only outlet I have to express myself and writing about it feels comforting.

 

[billie48]

I have to admit T is probably the greatest challenge I've come across in my life as the T is so loud and constant I find it exhausting functioning as myself but I'm determined to live with T not let it consume me.

Welcome to the forum. This quote paragraph kind of reminds me of the conversation the other day with a church lady friend that I have known for a while but never realize that she has T also. Not just that she said she has had it for 20 years, loud enough to even not able to hear people clearly and have to do lip-reading at times. She said it is high pitch 7/24. She said she was sleepless at first for it but then slowly realizes that life has to go on so she has learned to accept her T without tough emotional struggle. She said after a while, she got used to it and joked that her T is making her to really trying to pay attention to people's conversation with her, as otherwise she wouldn't be able to know what they were saying. Lol. It is quite inspiring to me to see her able to move on with life. She is definitely not a super or wonder woman with iron will or strong character. By accepting her condition and moving on, she manages to co-exist with her loud T. She is actually the 2nd lady friend with T so loud that she can't hear people clearly. The other one I mentioned in past post before, that her T is so loud that once she couldn't even hear the siren of the fire truck coming to her apartment due to a false alarm. Lol. Yet both of these ladies seem to live a normal life without the emotional struggle that is commonly seen in T support forums. I think these ladies may have a different DNA, lol.

 

[Corrie]

Hi Billie, thank you for talking about your lady friends it's always wonderful to hear how others are managing and going on with their lives regardless of the challenges brought to them. I have only just begun my journey with T and have finally accepted that this is an inside job. I like to think that there is a solution for every problem and your friends prove to me that with some good hard work I too can obtain the ability to straighten out the chaos in my head and move forward towards a productive life.

 

[Lorac]

@Corrie,
I agree that trying to locate sound is one of the biggest struggles with single-sided deafness. One week after losing the hearing in my left ear, I was driving and I heard an emergency vehicle's siren. I thought it was coming from somewhere in front of me but when I stopped at an intersection and looked in my rearview mirror, I saw the ambulance right behind my car. I felt so bad for having failed to get out of their way. That was a valuable lesson though. If I hear a noise, I cannot make any assumptions about where it is coming from based on what my brain is telling me. I have to completely ignore the signals I am getting from my brain regarding sound locale because the signals are wrong. When I hear a noise, I tart visually scanning 360°.
One doctor told me that my other senses would try to compensate for the hearing loss by using some part of my brain that is no longer being used for hearing from my left ear. I have to be more alert now to carry out tasks like driving, crossing streets, conversing with people in public, etc. It is exhausting but at least, I sleep well.