My Voice After 2 Years, Got Through the Black Hole of Darkness

[chef]

This support forum was critical through my experience, so I felt compelled to share my experience to help even one person.

First will say that through all of my searching for any answers i would quickly look through to see how anyone got through or what helped. So to get that out of the way, time... . That's it. Its like a grieving process, you go through stages. At first it is horrible. Louder than anything you can imagine.

Spending countless days of frustration, not knowing how you got through the day, just to try to get a little sleep and to repeat! Leads you into a dark place. Then somehow you suddenly realize that you were thinking of something and you didn't notice it for that two minutes. Then you try to replicate it and you cant. But then when your not expecting it, you do it again.

Then over time it gets longer. Somehow you don't notice it for longer. Then suddenly as your watching tv, you realize that your ears are ringing really loud and then you realize that this was the first time you had thought of them that day.

Then it moves into this thing that somehow you manage. Its there, but you manage it. Just as you would manage an illness. Its there, and you will have good and bad days, but the good days get longer and longer.

Then its all about the spikes that you worry about. You can handle the normal days, because it becomes a sound that you become familiar with. For me it was mainly one sound @ 11k hz. But the spikes are different in a way i cant explain, kinda like a singer that cant keep pitch, and its louder. It can last for hours to a few weeks for me, but i have learned that it will go back down because of time. It always has over the last two years, so i have come to peace that it will again.

For me, at first i would avoid certain sounds because they would spike my T, but then after a bit of time, i learned that if i would immerse myself in the sound i became habituated to that specific sound. (like pans or dishes clanking).

I had Hyperacusis in the beginning as well. I remember sitting in a board room and thinking, why are these people yelling? And constantly telling people to stop shouting when they were talking. Then i realized about what it really was. It lasted a couple of months.

Regardless, this is my best advice for anyone new. YES, go a ENT and audiologist. Funny enough, both of mine had T. But be aware, dont walk in with ANY expectation of assistance. Just go as a precaution that it might be something else.

Then do your homework. In the beginning it is BAD! You cant help but to sit up hours into the night scrolling through all of the internet looking for any solution. Do so, but put a time cap on it or it will lead you into a dark place. Be careful of reading too many blogs. Most people sit and cry about how horrible everything is. It will again put you into a dark place. Realize that that is not representative of the T community. Those people either just sit and cry because they refuse to do anything about it, or they cry about it, but then never come back to say that they are better. Usually it leaves into a thread of others just attaching their baggage. So do your reading, but put a time limit on it and then MOVE ON.

Read about success stories. Yes, William Shatner, but many celebs have horrible battles with it, and have wonderful success stories.

Understand, that this battle will turn out not to be a battle about a sound, but a one of anxiety and emotion. You will get beat down at times with it. Talk to anyone who will listen. DO NOT do anything that is T related. Consider T to be something so detestable that you wont even speak its name. Don't keep a diary of it, or keep running into a room to see if it sounds different or if it has gone down. Any activity like this just affixes your mind to it, and you will not get better until you learn not to do it. IT TAKES TIME. You will not be able to do it the first time. It comes with time and patience, but you will learn to master it through trial and error. My dr gave me Valium to get through the tough patches. I think its more of a placibo for me, but sometimes if its bad i think i can take one and it will help.

A few websites that have helped me are with audio tuning Acoustic CR neuromodulation (generalfuzz.net/acrn). Helped me through some of my spikes. CBT therapy is a proven method that does help. I did not go though it, through all of it, i was too lazy. But anyone i have heard that took it seriously and committed themselves to it, got some type of personal improvement.

I could go through many personal days of personal trials and successes. As for how it began. One day i woke up with a rapid heart beat that didnt go down and felt a little odd. Some events occurred over a couple days.

Looking back on it, it was a type of anxiety attack. Ended up at my GP. He said that sounded like anxiety and put me on Prozac and Xanax. I was good for ten days, then took a xanax before bed and had a bad reaction. That started a week of a mental hell. Felt like i was loosing my mind. Then after a week had a breakdown and called my dr and told him about it, he said it was probably a bad reaction to Prozac and to stop taking it. Kept taking xanax. Took a week to get a better, but through all of this bad event never slept more than a few hrs a night. Then decided it was probably because of the xanax. So, i stopped it. The first night still didnt sleep, but the second night i did, and when i woke up, had a ringing. Hasn't stopped yet.

So, that is the general of my experience to share. I will make myself available to anyone who has any questions and will help in any way i can.

 

[Vicki14]

For me it was mainly one sound @ 11k hz.

@chef Wow! That was such a fantastic post! Thank you! So uplifting to know that we can make make it through the dark maze of tinnitus. I couldn't agree more by what you said. I think time seems to be the key and riding out the horrible spikes the best we can seems to be the way through this. I too, agree that we can somehow get through these if we start to get more evidence that they settle down eventually.

Your quote above, how do you get these figures? I couldn't even tell you what mine were! Is it from an Audiologist?

Again, thank you for your post and I'm delighted to hear that you made it out the other end!! X

 

[chef]

I spent SOO much time going through such a maze of the net just to find a little key here and there that would help. After i got through some of it, i kept thinking, why didnt anyone ever actually say what there experience was like. All i kept hearing were things like, "you'll habituate to it", but didn't know what that meant. All i would think is, you have no idea how loud it is. If you did you wouldn't say that. Then i watched a story of a girl with a bad case who didnt make it through it. I kept thinking i would end up like her. Then i started to hear stories like about Barbra Streisand who's had it all of her life, and a bad case of it, but here she is. And then another, then another. I liked Shatners story. I met him through my work a couple years before i had T, and didn't know anything about T or that it existed. Then heard his story, and about the darkness he walked though and now he's doing great. All i thought of was, "I met him, and he had it when i met him, and he was laughing and joking with me, there has to be another side to this thing".
As for the numbers, i went to a audiologist. there are 2 types of tests you can take. one goes to @10Khz the other goes to ?, but well beyond. I only took the 10k b/c the other was a extra charge. my hearing was fine, but at 8Khz it started to go down, and again at 10khz. She said that most likely if i took the test it would go off a cliff around 12K. Your T is typically at the same frequency that you would have hearing loss. I used audionotch website, it really seemed to get me close. You have to go in short sessions b/c when you try to catch your level, your sound will seem like its fluctuating. Once you get close, you can go to youtube and find different hz tones and play them. Usually, if your close, it will interrupt your own signal a little. The way it was put to me was that your mind processes outside sounds first. So if there is a outside noise that is close to your own, then it will interrupt your own and your mind will have to reset in some way, and you will notice a difference in your T for a minute or two.

as for anything else, tonight when i began writing, i had almost no perceived T, but now that i've been thinking and writing about it for a few hours... its BLAIRING! Once, i turn on the tv and focus on something else i will forget about it and the experience will be over.

 

[Vicki14]

@chef Thank you for your reply, it's always so helpful when I hear how some have struggled but somehow make it through and others don't, I find that very scary as it could be a reality if you let this thing get a grip of you! I'm so glad that you are in a much better place now! Nice story and thanks for sharing!! X