My Year of Struggle

[melfreeman08]

I waited a long time to write this post, and it's a post I always hoped I would write. It's been a little over a year. It was hardest year of my life. I look back at my first post and I see a scared girl in so much agony and frustration. My hope is that by writing this post- I can help those who were just like me....frustrated, scared, angry and mad.

I have tinnitus. I have bi-lateral high frequency hearing loss as the result of a home alarm that went off for too long as I stood in front of it. My tinnitus was instant and never left. I hear it in my head and not in my ears. It sounds like a high pitched hiss.

I was desperate when it started. I did everything everyone else has. CT scans, steroids, allergy medication, ENT's, hearing tests, ear wax removal etc. I gave it my best effort. Unfortunately it didn't work. I suffered for months. I mean MONTHS. I was tortured by the constant and unrelenting noise. I thought how could ANYONE live with this- let alone their whole lives! I was depressed.

I prayed for habituation. I craved it. I begged for it. I would have cut off my arm for it. It didn't happen. I would have good days followed by AWFUL days. It would fluctuate. It would scream. It would change pitch and tone.

10 months in, I reached a breaking point. I sought out a specialist and paid out of pocket. I started neuromonics with a hefty price tag.

So what clicked. Honestly, it wasn't the neurominics- I stopped after a month because doing the therapy was just too much time for me. It was the counseling that came with it. I had the best audiologist. She listened to me. She made my problem REAL. She told me I would habituate and that I would get better. She educated me on tinnitus and its effects (and yes I had already read everything she said)- but it was the act of her talking to me, making me feel heard and understood. It was during one particular visit where we reviewed the reactions people have towards tinnitus and how the negative reactions feed into vicious loop. The more I kept hating tinnitus and wishing it would go away- the more I heard it. I was essentially making tinnitus important and telling my brain it was important too!

So where am I now:

I still have tinnitus, but it doesn't have me
I can still hear the noise, but 90% of the day I am so busy I forget about it
When I do hear it I say "Hey tinnitus." That's it
I don't hate it, I don't tell it to go away, I now longer dream for a day it's not there
It's just like my breath now. I know I am breathing, but I don't think about it
I can sit in silent rooms, and I can hear loud noises and not panic
I can sleep, and I don't have anxiety

I am in control, and I will remain in control, and I will continue to tell my brain it's not important so my brain pays it no attention. I am living my life regardless of the noise, and you will too. I promise.

 

[Dominic1955]

I have developed sshl 6 weeks ago, I have writing and reading all the blogs , post everything on this site, I am suffering ! Severe T lt ear with moderate to severe hearing loss. I have notice no change in the loudness it the T I am so depressed. When did you start feeling better ?


Thank you for your positive story
Dominic

 

[melfreeman08]

@Dominic1955 I am so sorry you suffering! I know what it's like. I started habituating about 10 months in. I finally chose to change my mind set. I stopped hating tinnitus. I stopped telling it to go away. I refused to pay attention to it. It didn't happen overnight, but the more I told myself that it was no big deal, and that it wasn't a bad thing, the more my brain learned that it wasn't something to be afraid of, or pay attention too. Counseling was what ultimately helped me feel better, and read success stories!

 

[Dominic1955]

Thank you
How did sleep the first few months ?
I am having difficulty sleeping
I stopped working

 

[AndreaM]

 

[Lorac]

@melfreeman08
Thank you for your encouraging post. I agree that having a doctor just listen and take you seriously is helpful. In your case, it was an audiologist. My help came from a behavioral therapist.

 

[Dominic1955]

@melfreeman08
Thank you for your encouraging post. I agree that having a doctor just listen and take you seriously is helpful. In your case, it was an audiologist. My help came from a behavioral therapist.

Did you do CBT? I have an appointment to start on Monday, did it help you ?

 

[Lorac]

Did you do CBT? I have an appointment to start on Monday, did it help you ?

I went to a Positive Behavioral Therapist but CBT is what is usually recommended on this forum. I chose my therapist because she also had some medical background and this is physical condition. I thought she might better understand the effect on the brain and nervous system, etc. There might be a fine line between CBT and Positive Behavioral Therapy.
It was just good to have someone to dump on. Family and friends can't really understand and I wanted to stop dragging them into my personal hell. It was a win/win with the doctor. I got to vent and she got paid. She definitely helped me put things in perspective. Now, she is better equipped to help someone else with sshl and tinnitus...right?

 

[Dominic1955]

Yes
Thank you

 

[Jamie m]

This post really helps me out! I have had it for two months and about 60% of the day I don't think about it but of course my random spikes will get to me! I feel like I will have this more than likely forever and I have accepted that and I think that has helped! But seeing another female empowers me that I will get better!

 

[Marie79]

I LOVE this story! I live near you! I used to live in Orange County and now live in El Segundo. It is so awesome to hear a story from another woman.

 

[eve88]

Thank you so much for your post. I am at the 10 month mark now and while I don't freak out over the noise anymore, I still am hoping and wishing for it to leave. Reading posts like yours help me believe that habituation is possible

 

[TJohns]

I am four months in and have high freq hearing loss as well. My T changes in pitch and tone as well its in my left ear then my head some days in both ears. I love reading success stories it gives me hope that one day I can stop listing to and start forgetting about my T. Great story wish you all the luck

 

[IreneW]

Thank you for sharing, all the things you've went through sound so familiar. I'm glad you are in a better place.

 

[John Meyers]

I waited a long time to write this post, and it's a post I always hoped I would write. It's been a little over a year. It was hardest year of my life. I look back at my first post and I see a scared girl in so much agony and frustration. My hope is that by writing this post- I can help those who were just like me....frustrated, scared, angry and mad.

I have tinnitus. I have bi-lateral high frequency hearing loss as the result of a home alarm that went off for too long as I stood in front of it. My tinnitus was instant and never left. I hear it in my head and not in my ears. It sounds like a high pitched hiss.

I was desperate when it started. I did everything everyone else has. CT scans, steroids, allergy medication, ENT's, hearing tests, ear wax removal etc. I gave it my best effort. Unfortunately it didn't work. I suffered for months. I mean MONTHS. I was tortured by the constant and unrelenting noise. I thought how could ANYONE live with this- let alone their whole lives! I was depressed.

I prayed for habituation. I craved it. I begged for it. I would have cut off my arm for it. It didn't happen. I would have good days followed by AWFUL days. It would fluctuate. It would scream. It would change pitch and tone.

10 months in, I reached a breaking point. I sought out a specialist and paid out of pocket. I started neuromonics with a hefty price tag.

So what clicked. Honestly, it wasn't the neurominics- I stopped after a month because doing the therapy was just too much time for me. It was the counseling that came with it. I had the best audiologist. She listened to me. She made my problem REAL. She told me I would habituate and that I would get better. She educated me on tinnitus and its effects (and yes I had already read everything she said)- but it was the act of her talking to me, making me feel heard and understood. It was during one particular visit where we reviewed the reactions people have towards tinnitus and how the negative reactions feed into vicious loop. The more I kept hating tinnitus and wishing it would go away- the more I heard it. I was essentially making tinnitus important and telling my brain it was important too!

So where am I now:

I still have tinnitus, but it doesn't have me
I can still hear the noise, but 90% of the day I am so busy I forget about it
When I do hear it I say "Hey tinnitus." That's it
I don't hate it, I don't tell it to go away, I now longer dream for a day it's not there
It's just like my breath now. I know I am breathing, but I don't think about it
I can sit in silent rooms, and I can hear loud noises and not panic
I can sleep, and I don't have anxiety

I am in control, and I will remain in control, and I will continue to tell my brain it's not important so my brain pays it no attention. I am living my life regardless of the noise, and you will too. I promise.

Congrats on taking back control! -- You should be proud of yourself!

After a couple months of eating badly, I decided to get serious about my diet. -- Working out and running really help but I let my guard down with eating sweets, too much pizza, etc and Mr T came back with vengeance.

I was just telling someone to find his passion and use it to help take his mind off of T. -- Distraction is a fantastic tool so I decided to really dive into my work (real estate & networking).

T is getting me on the right path to a healthier lifestyle. -- I just wish God could have told me in a different way!

I remind myself that many people are fighting cancer, bi-polar depression, war trauma, abuse, etc so I need to suck it up and be thankful for what I have and get on with life.

Good luck my fellow sufferers! -- We'll get through this together thanks to this blog!

 

[eve88]

Congrats on taking back control! -- You should be proud of yourself!

After a couple months of eating badly, I decided to get serious about my diet. -- Working out and running really help but I let my guard down with eating sweets, too much pizza, etc and Mr T came back with vengeance.

I was just telling someone to find his passion and use it to help take his mind off of T. -- Distraction is a fantastic tool so I decided to really dive into my work (real estate & networking).

T is getting me on the right path to a healthier lifestyle. -- I just wish God could have told me in a different way!

I remind myself that many people are fighting cancer, bi-polar depression, war trauma, abuse, etc so I need to suck it up and be thankful for what I have and get on with life.

Good luck my fellow sufferers! -- We'll get through this together thanks to this blog!

I also try to remind myself of exactly the same thing to try and keep some perspective - we all have battles in life! Did you see Brian Johnson (lead singer Acca Dacca) had to leave ACDC due to hearing loss and tinnitus in his left ear?

 

[John Meyers]

I also try to remind myself of exactly the same thing to try and keep some perspective - we all have battles in life! Did you see Brian Johnson (lead singer Acca Dacca) had to leave ACDC due to hearing loss and tinnitus in his left ear?

Yes, I saw that the morning the news came out in March.

If Brian would have retired last summer instead, I never would have gotten T (from Angus Young's guitar solos) since I have no intention on seeing them with Axle Rose.. :-(

 

[Honey_Bee]

Woo hoo!! You and I got tinnitus literally right around the same time and progressed at about the same speed. Love it! I am originally from Orange County! Love it up there! Now in San Diego, especially love it down here Congrats on your success!!

 

[gobolts07]

Great story. I'm at nine months and feel better a lot of the time.
I think my biggest frustration is when I feel better for few days and it doesn't bother me much at all, then all of a sudden without reason my brain wants to go haywire and go right down the old path with all of the negative thoughts and completely focusing on the T. That's about the only place my "fear" still exists.

Did you experience something similar?

 

[Jamie m]

@gobolts07 omg it's so weird you wrote this, I've had T for almost three months. For a good three weeks I was great! Then Monday night out of nowhere I have an aniexty attack! It was so strange! I'm okay now but for half of the day yesterday it was just making me crazy! I do like stories like this bc it gives me hope! good luck to you all!

 

[Paul82]

Thank you for sharing this @melfreeman08

 

[Path Maker]

Great story. I'm at nine months and feel better a lot of the time.
I think my biggest frustration is when I feel better for few days and it doesn't bother me much at all, then all of a sudden without reason my brain wants to go haywire and go right down the old path with all of the negative thoughts and completely focusing on the T. That's about the only place my "fear" still exists.

Did you experience something similar?

@gobolts07 @Jamie m

This is interesting that you say this. My whole life, I was a worrier, even as a young child. Back then, I had no way to deal with it, no larger perspectives about life, etc. When I grew up, I took a look at these tendencies and over the years have learned better coping skills, ways to de-stress, ways to view situations from a larger perspective, etc. In other words, it's gotten better. But ... I still do have remnants of this in the "operating system" of my mind.

And yes - I have noticed the same exact thing, all along. A few good to great days ... and then, it is almost a compulsion to "start worrying" again. Almost like the brain/body is USED TO this state of affairs, and so seeks to balance out the "at ease days" with the "fraught with fear/anxiety/worry/sad/down (choose your adjective ) days."

And so, recently, I've begun to learn to de-stress even FURTHER. I've questioned what to do about this "inevitable" return to anxiety in the cycles that it takes.

I believe it takes an even higher awareness. Meaning, when you are enjoying the happier low-free anxiety days, just be like a grown-up to a child, holding your own hand, in the background, keeping you safe. So that when the pendulum swings, and your brain/body seek to return you to the anxiety states, you are then ready-able-willing to softly/gently re-guide yourself back to a better day.

I think what often happens with anxiety is that when it makes its first "tickle" in our consciousness, we experience all the associated ticklings of fear, panic, upset, etc. and in ADDITION to these, we get upset BECAUSE we just "came off" a run of good days. So we are "tragically sad" that the worries have returned.

And it is at THAT CRUCIAL POINT that we have to become that gentle but firm, guiding "adult" to ourselves. Let the past 3 or 4 happy days slip into the past (that's where they go anyway), step into the day we are in (where we feel the anxiety tickling, knocking, trying to enter, with a toe in the door), and say: "Noooooo (in a gentle controlled way). We don't NEED to repeat this anxiety lollapalooza in order to live a balanced life. Anxiety was an intruder in an otherwise good life for a long time. Anxiety has left. No need for any more visits. Please don't even send me a postcard, but if you do, I will not even flip it over to read it."

And ... we need a PLAN in place (nothing complicated - just a few reminders to take us though the re-appearance of the anxiety). Such as: Taking a walk. Reminding ourselves to NOT make a "battle" with the anxiety, but to SIDESTEP it. And so on. Relaxing through a day like this will let us glide more easily into better days again.

It's sort of like (well, it actually IS ), instead of simply accepting the "reality" that "uh, oh, here comes the anxiety again; I am stuck with it; "it" has me," we create a NEW REALITY. The new reality is: "Hey! I get to run this show. I drive this car. I walk this path. And I get to guide myself into a better place, day by day."

This reveals the "overwhelming falsities" for what they are, and takes them down. In their place is simply ... YOU, and, your day. YOUR day.

Trying to "make" days into happy days is not the way. That just adds stress (and anxiety). But cultivating an inner KNOWING that the happier days belong to us, and that the anxiety is just a relic (or on its way to being so) is what will give the strength to move forward and leave anxiety as a dry husk in the dust of the past.

This CAN happen. I wish it for all of you.

 

[Rob 207]

I came across T in a smilier way, by standing in front of an alarm for too long. That was one year ago, and I'm about 90% habituated now. I'm still having trouble sleeping consistently well, though. That has been the worst part of it all and has been so frustrating.

I'm really trying to find a good friend/confidant that I can really talk to about this. Just like you said, just talking about it and releasing those pent up feelings can be such a miraculous relief. I've got the pain and frustration all bottled up right now, it's not healthy.

 

[sirokinl]

I've had T for about 7 weeks now and I've gone from suicidal to not caring anymore. What helped me? Understanding what T is, seeking help from a psychologist as soon as I got it (like week 3), took 2 weeks of oxazepam to help me calm down from anxiety and think clearly. Meditation before I go to bed and during commuting helped me a lot (app: Calm). Cut down on the coffee to only one in the morning. Eat healthier, but don't overdo it! Stop watcing tv or mobile phones 30 minutes before sleep. I sleep perfectly for 7 to 8 hours every night. I'm pretty much back to my old life, just I have T, which I will add to my other inconviniences like lower-back pain, vitiligo and bad hips.

You need to stop waiting for it to go away. Accept it and move on. It may go away, it may not. You have no influence over it. What you have influence over is how you react to it. Stay positive!

Sure, you might think "if you stopped caring, why are you on the TT forum?" .. I still care, but not in a negative way. I know how tough T can be on people so I'd like to talk to you and tell you about my experience and hopefully help you. Sure I still care about my condition, just like I'm always finding ways to help me get rid of my lower back pain. But I still continue and enjoy my life.