Unable to Accept My Condition

[koukamichiru]

I noticed my tinnitus on 20th January 2016. Was trying to sleep but there was a loud whirring in my right ear which I thought at first was the motorcycle revving outside the house. But for some reason I decided to get up and check my laptop on something, then I realised the sound was coming from my ear. I couldn't shake it off, so I went to the GP the next day. He told me I had an ear infection, and gave me antibiotics and drops for 5 days. On the 6th day I went back, because I still had the roaring in my ear. He gave me more drops and shooed me out within 3 minutes.

I was starting to worry after February 8th, so I went to the ENT on February 13th. I told the ENT doctor that I've started hearing odd sounds in my right ear, and then my left ear. My right ear roars intermittently, I can change or distort the sound by pushing my finger along my ear in the concha area. But the persistent EEEEEEEE sounds come from both ears. Sometimes I get sudden spikes that go "PIIIIIIII" in my left ear (3 times now) which drowns out the normal EEEEE tone. I went for the hearing test. I struggled during the test because of the constant EEEEEE in the headphones. It came back normal and the audiologist said I could hear 5db tones so that's not a cause of worry, but I was suicidal. The ENT doctor said whatever it is, it hasnt affected my hearing. So he put me on 2 weeks of corticosteroids. 60mg for each 5 days, then 30mg for 6, 20mg for 3 and 10mg for 2. It seemed to help for the first two days, but on the 3rd day, but when the 3rd spike happened (twice on the left ear, once on the right when I was sleeping), I got scared. I went to see him again and he said I shouldn't worry about the transient tinnitus. I should be worrying about the persistent one. He told me to go see him in another 2 weeks.

By the time I finished my 60mg of prednisolone, the roaring came back full force. My tinnitus are stronger than before. I hear all these loud whiny squeal in both ears all day long. I cried many times. I'm a person who enjoys silence. I don't listen to loud music, I hardly wear earphones, I loved being in a silent room just enjoying the peace and quiet. I cried so much knowing I'll never know true silence again, that my eyes have become puffy. I've tried playing soothing environmental ambient noise on my phone to distract myself. But the sounds are so loud that they cover up the ambient noise.

I don't know what to do, I cannot accept my condition, so many times I think, why me? I tried playing music, and ambient noise when I go to sleep, but I still get woken up by my tinnitus. I told my ENT I have been attending chiropractic sessions for my cervical spine (I had numbness in my pinky for close to a year) and I asked him if that would have affected the nerves and he said it is unlikely. Then he added that he doesn't believe in chiropractice. I still feel that the neck cracking had somehow altered some nerves in the neck that travel to the auditory nerve somewhat.

I've been crying so much, I don't know anymore. I'm now deathly afraid of dark, silent rooms now. I used to love rooms with dim lights and now I can't stand to be in them. I loved burrowing my head into my bedcovers when I sleep at night but now I can't even do that anymore. The sounds are deafening. Sorry I'm crying as I type this I just don't know what to do anymore. I could sleep because I'm exhausted beyond words, I wake up at 5am everyday to go to work and come back around 9pm, but then I get woken up by my tinnitus for the past week at 3am. I don't want to die but I feel so suicidal

 

[Fangen]

I can relate very much to your text, I used to love being in a dark, silent room play soft music. Just to relax and forget about the world. But since my T (came on Dec 2nd of 2015) I have struggled with coping as well. I used to cry my eyes out like you have, asking myself "why me, why did I attend that concert without plugs, why why why". But honestly, there is no answer. T doesn't choose us for specific reasons, just like people having cancer aren't chosen. You see my point? We feel like we are being targeted, but do not forget that one in 10 people have T of some sort. I felt like this life wasn't worth living anymore, the sound just took over my whole head and I would get panic attacks because I wanted to shut it down so badly and tried to cover my ears. But no matter how hard I tried, the noise was never going to be quiet. I cried more when I realized that and I could barely work or function. I can't say what happened, by for me, I think having someone around that kept distraction you helped a lot. Eventually I felt better and better. I have had some backlashes with being scared of loud exposures, but I can tell you already that it is my own brain that makes it worse. My T is probably the same but the fear and the anxiety of having done anything to make it worse, actually (ironically) makes me perceive it as worse and louder. It's almost funny how messed up that is.

I won't promise you it's gonna be a smooth journey, but you will become better. That I can promise you. We all here know what you are going through since we have been there too. We'll have good and bad days with T, sometimes with backlashes in the habituation but it we'll do our best to ignore it again and keep living a good life. I know it is doable, even if it seems really dark right now. I have talked to my GP about going to therapy, and I think that could be useful for you too.

Wish you the best,
F.

 

[LadyDi]

I also seriously struggled with acceptance when I first developed tinnitus almost three years ago. I was devastated, suffering rolling panic attacks and near suicidal. But I learned, over time, that acceptance is critical when living with T -- and, actually, living in general. We must accept that difficult things will happen to us that we can't make go away or have no control over. What we can control is how we move forward into acceptance and reclaiming our lives.

I personally found cognitive behavioral therapy (CBT) with a good professional therapist to be lifesaving. It took me about six, seven months of weekly sessions and hard work. But yes, I found acceptance. Today I have habituated and live my life as always -- and in many ways, live my life better because of what I learned on my journey. If you are open to CBT and willing to do the work, I think it can be tremendously helpful. Just my opinion and experience.

Good luck, @koukamichiru. We are here for you.

 

[billie48]

Welcome to the forum @koukamichiru and sorry for your deep suffering with T. Members here have been where you are and we understand and have empathy for your sufferings. Saying that, your reaction so far is quite typical or a new T sufferer. You have received great advice from above members. We all have been there to the depth of suffering initially but have managed to climb out of the blackhole of T suffering.

I can only add my own experience and story, my deep sufferings and then finally the triumph over T's tyranny. I have ultra high pitch dog whistle T and severe hyperacusis. Worse, I also had suffered from anxiety and panic disorders for decades prior to T & H having suffered PTSD due to a family tragedy. So T & H just overwhelmed my nerves and the initial sufferings from all these combined were too much to bear too, and I was suicidal at times, not knowing how to climb out of the long dark tunnel. I never thought I would see good life again. But never say never. Today I live a normal and absolutely enjoyable life. Thanks God. I write my success story and list many helpful strategies. If you like to know them, for brevity I provide the link to the story:

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

Crying is a normal reaction when the nerves are overloaded. I know of a moderator in another forum who has cried for 2 years but he is back to living a normal life now. Don't panic and despair. Try to do something to help yourself. Like others say, acceptance is key to recovery. You don't have to accept T, but you can learn to accept T as a slice of life for the time being. Accept that reality and move on with life. I call this the AAA approach - accept, adjust and adapt. People learn to accept the 'new normal', as this doctor posted about his own need to accept the new normal.

https://www.tinnitustalk.com/threads/curing-tinnitus.4136/page-5#post-40854

If you like to use masking to help you, here are some suggestions below. Masking can help you accept your current challenge. It is a compromise to deal with T. We need this to buy time for the body to get used to T. So be positive and try to keep calm. You take good care. God bless your recovery.

Masking suggestions:
1) Mask at bed time so you can sleep better. Find whatever sounds/music that are soothing to you. You can use a sound machine or sound pillow for this, or a computer with speakers.

2) If you need masking on the go, try load an ipad with nature sounds or music using itune, or use smart phone.

3) If you have computer and speakers, you can try these excellent masking sounds:

TT's audio player: https://www.tinnitustalk.com/audioplayer/

or download free sound generator 'aire freshener': http://www.peterhirschberg.com/mysoftware.html

or make your own rain sound: http://mynoise.net/NoiseMachines/rainNoiseGenerator.php

or search youtube with words like 'tinnitus masking sounds', 'white noise', 'rain', 'wave' etc.

 

[koukamichiru]

Thank you so much for the links and words of encouragement/support. My friend has tinnitus, first thing she did was sent me the link to the app Noisli, which really saved my life and helped me to sleep.

I will be seeing the ENT again on Monday. I will update.

Wishing the day will come where everyone of us can be cured of this terrible affliction. Much hugs to all of you. Thank you so much.

 

[attheedgeofscience]

I will be seeing the ENT again on Monday. I will update.

I have only skimmed your posts, so/but... it seems you may be eligible for the AM-101 clinical study (given your etiology for tinnitus) and if you are located in one of the countries where it takes place (see more at http://tinnitus-study.info).

There probably is a certain washout period (re: your steroids).

Unless there is a "structural problem" with your condition related to e.g. the eustachian tube or the middle ear, or the infection is still persisting, then the ENT is no longer "your friend" and only time or the above clinical trial can help you.

 

[koukamichiru]

I'm not in any of the countries listed... I wish I were.