Oh, the Places You'll Go!

It's been approximately 9 months since I developed tinnitus and hyperacusis from ididopathic sudden sensorineural hearing loss. I am happy to say that although my tinnitus is just as loud (75 db) and fluctuating as before (sometimes it sounds like someone is frying bacon in my ear!) it doesn't bother me in the slightest! My 9 year old daughter was asking me about my tinnitus the other day, as I hadn't talked about it in a while, and I told her it didn't bother me anymore. She suggested that I write my story here to help others, and I thought, well yes, I guess now is finally the time!

Here's some background on me: I'm a stay-at-home mother of three who went back to school for nursing, and was in my last semester of school, when I caught a cold from one of my kids last January. I knew I was getting sick but my daughter needed some clothes for her first basketball practice the next day. So I, like a dodo (adoring mother) went out into a gusty, freezing cold rain storm to buy her some gear. The next morning I woke up and noticed that my right ear felt a little clogged. The feeling got worst and worst over three days time and by the fourth day, with a raging fever, my ear started screaming. Not ringing, screaming. Oh those dark days. It felt like the devil was inside of my head. I went to the doctor, and, to make a long story short, I kept getting misdiagnosed, until three weeks later when a competent ENT gave me a hearing test. Loo and behold wouldn't you know it, but I had a hearing loss of 75 dbs at 6000 kz and up in my right ear. He said I had ISSNHL from the virus. Of course my main gripe was the tinnitus though, because it was driving me crazy! I also had become highly sensitive to high pitched noises. Being the kind and caring doctor that he was, he told me that the cure for tinnitus was to have someone stomp on your foot, as the pain would distract you from the ringing >: (

A couple of months passed and I became more and more depressed. The hyperacusis was so bad that I could hardly get out of bed. The sound of my own children's voices was excruciating, ambulances would have me clutching my ears, crying in pain. I tried to use masking but with the hearing loss, all sounds just seemed to make my tinnitus louder. My life had become a non-stop panic attack and I saw no end in sight. I remember wanting to exchange my dilemma for others and pleading with God. "A broken leg! I would take a broken leg. Break all my bones, as long as I don't have tinnitus anymore." "Oh, she has cancer. I wish I had cancer, then I would either die or be cured, but I wouldn't have it forever." Pretty bad, huh?

The days got pretty dark. One day, on his way to work, my husband went to kiss me good-bye. I clutched at his wrist and told him, "Don't go, because I may not be here when you get back." He took me to my doctor who insisted that I check myself into the psychiatric hospital. More scared then I had ever been in my whole life, we went home and I packed my bags.

When I got to the hospital, the psychiatrist prescribed me Klonopin (a benzodiazepene) and Cymbalta (a SSRI). Shortly after taking the klonopin, a miracle occured. Sounds stopped hurting my ears! I could hardly believe it! I could still hear the tinnitus but it didn't bother me nearly as much. Suddenly I had a new lease on life. After that things progressed quickly. I still did not like the tinnitus, but sounds no longer bothered me, making it easier to adapt.

Don't get me wrong, it still wasn't easy. The medication wasn't a complete instant remedy, but it was a tool that helped me to habituate. By curbing the depression and hyperacusis, it allowed me to apply other principles that I had learned about but had never been able to utilize. These included:

- Masking: with my attention less focused on the tinnitus, I was able to play music or watch TV, listening to it instead of the t. Even while doing this I would panic sometimes with the thought "Oh my gosh, I'm going to have to mask this for the rest of my life to keep my sanity. How will I ever mask it ALL the time?! This is too big of a challenge." No, that is not why masking works. It works because of distraction.

- Distraction: Anytime you take your attention away from the t, your brain pays less attention, thus aiding in habituation. Masking with sounds, distracting with activities (exercising, playing with your kids, watching a movie, having fun!) are all things that tell your brain "Hey, this t sound is no big deal, so you don't have to focus on it anymore." My favorite distraction technique was discovering and listening to new artists (mostly All Sons and Daughters and Ray LaMontagne) with headphones. I know it's hard to believe, but trust me, over time it works. While distracting and masking you will still be bothered at times by your t, and when you do, you must actualize.

-Actualization: At first, when you get t, you hear it all the time! Or at least, you feel like you do. I noticed early on though that I could go short amounts of time without hearing my t. As I got better at distracting myself, I would still hear it though (sometimes 60 times in one hour, or more!). Each time I told myself, "Don't panic, you're hearing this now, but you'll forget it again. You're doing a great job, keep up the good work!". This is not easy, but it is necessary. And, I was right, I did forget it again, over and over and over, thousands of times, until now, I rarely think about it. Although, I always hoped it would be true, that this was a temporary torture, I didn't believe in the realization that I would get better.

-Realization: You will get better. You're probably read this many times (I know I did, I poured through all of the forums and support groups, reading success story after success story), but the truth, is you will. Tinnitus is scary at first because it's new, but over time it just becomes old hat. At first your brain thinks it's a threat, drawing your attention to it, but as your brain starts to realize it's not causing you any harm, the sound will fade into the background. (This is what happens to people who move next to an airport or train tracks. At first they can't stand the loud noise, but over time they habituate to it until they eventually stop hearing it. Most of the time I don't even notice the t anymore, and when I do I say, "Oh hello, and goodbye I have other things to do." Actually, my thought process isn't even that complicated anymore, it's more like, "Oh, it's you again, whatever."

- Relaxation: Mediation, yoga, tai chi, exercise, these are all things that can help take the t edge off, and be more relaxed, which is necessary for habituation. When you're body is healthy you feel better too, making it easier to adapt to t. My favorite free site for guided relaxation was www.tinnituseprogramme.org/ It's also a really good program for tinnitus suffers created for free by an audiologist.

Some people say not to talk about your tinnitus because it makes you think about it more, therefore slowing down the habituation process. I think that's a bunch of old school, tough it out psychological malarky. At first, tinnitus is torturous! You wouldn't tell someone who's spouse just died to stop talking about them so they could forget about their spouse. Loss is difficult, and tinnitus is a loss that no one understands unless they have gone through it themselves, so talk about it! I found the more I talked about t, the more people I discovered had it (many of my family members have tinnitus and I just never knew because they had habituated to it years ago!). This was very reassuring that someday it wouldn't bother me either, and now, it doesn't! : ) I haven't been on medications in three months and I'm loving life again!!

I want to give thanks to the people who have helped me along the way. Mark McDill, you are awesome. You were so right about the paper tiger. Thank you a thousand times over for standing by me and praying for me while I was still in it's clutches. Tandpiano, I am so glad God brought us together for this crazy and weird journey. To everyone else, remember, God has seen you through many difficult circumstances, and he will see you through this one too. Don't beat yourself up, when you have a bad hour, day or week with t. Time, the support of family, friends, and maybe even a kind doctor or counselor, are your best friends. You WILL succeed, 99.85% guaranteed : )

Claire

 

Your daughter has a kind heart.

 

Yes she does Dan, thanks.

 

Hello Claire,

I read your letter about your experience with tinnitus.

I want to congratulate you and your daughter for their good feelings.

My doctor recently prescribed me Cymbalta for aggravation of tinnitus also and wanted to ask:

1. How long the treatment lasted?
2. How many doses of each drug you took?

Best regards.

Joan

 

Hi Joan,
I sent you a message in reply. Best of health!

Claire

 

Great succes story and something we all strive for .

Thanks for sharing this.

 

You have a very thoughtful daughter and from reading your kind and informative post, it's clear where she got a lot of that

Thank you for sharing your story. It always amazes me how similar our (T-sufferers) stories are in many ways and yet how alone we can feel in our habituation journey. I remember "bargaining', wishing I had other ailments - saying almost exactly what you did. I'm so glad you are where you are now. I've written my success story, too, but it still gives me major warm fuzzies to come read those of others - almost brings me to to tears of joy. These stories give ALL of us hope for ourselves and for others. I don't think any T-sufferer, present or former wants anyone to suffer with this, so thank you for sharing you tale of triumph

ALSO, I adore your Dr. Seuss title reference - "oh the places you'll go" - I don't know if I can think of any words more hopeful than that.

 

Hello Claire,

I just wanted to say a quick thank you for the wonderful success story that you wrote. I was once habituated before to my T, but am now trying to get back to that point again after dealing with a big spike.

It really blew my away when you put that yours is around 75db!! Mine is around 50 in one ear, and 30 in the other. When I saw that I couldnt help but think "Heck, this woman has it worse T then me and she is living it up now! If she can do it then Im sure I can!"

I am currently looking at possibly going through TRT to deal with my mild H. But reading messages like this gives me hope!

Thanks again,

Cheers

Kris

 

Glad I could be of help Kris! When I was 8 years old my mom moved us to an apartment complex right next to an airport. The planes were so big and loud, they would literally shake the ground. This drove me crazy!! My mom said I would get use to it, but I was furious at her for moving us there (and for the idiots who built a complex so close to the airport, and this is back in the 80's when planes were really loud). Wouldn't you know it though, that within a month or two, I stopped noticing the planes! Eventually, when I let go of my anger and got back to being a kid, playing and having fun, I habituated to the noise. Sometimes, when it was particularly loud, I would notice, but then I would just look up, say "Wow, that's a noisy one!" and then go back to what I was doing, completely unbothered and unaffected.

It's the same thing that I do with t today.

One other technique I used to habituate to t was to spend as much time outdoors as possible. The sounds of nature distracted me from the t, and those feel good endorphins you release when you're outside help a lot with the anxiety.

You'll get there Kris! You've got so much going for you. Since you've already habituated once, you know you can do it again! You'll be in my prayers!!

Claire

 

Hi, Claire,

taking 60 mg of cymbalta a day?

Best Regards

Joan

 

Hi Joan,
I don't remember how much I took. Your doctor will prescribe the correct amount for you.

Thanks,
Claire

 

Love ya girl T and all!!! Great success story of courage!

 

Thank you for sharing! I truly get inspired when reading positive stories like this one. I'm new here and its good to know there are others who I can relate with.

 

This is my favorite success story! I read it over and over. Unfortunately, I am in the throws of t-hell right now, and just can't imagine getting to the point where I can get used to it. My doctor is treating me for extreme anxiety and sleeplessness, and that makes me even more anxious because I think I'm going to have to live on these meds forever. I thank you for your words of encouragement even if I have a hard time believing that it can happen for me. I am usually a very positive person, but t has certainly struck me to the ground.
My question for you is: did u have any particular mantra that you used to convince your brain that this is not a threat, won't kill/harm you, etc? I have been spending a lot of time trying to convince my head that this is ok, but my head is not listening to me! I have background noise on all the time, but I hear the t over it, can't read (my fav pass-time) or enjoy social situations (everyone's voices drive me crazy).
Again, thanks for penning your success story, and giving me some hope.

 

@Claire43013 I'm speechless (in tears -- of joy and awe); what an awesome testimony! Wow!! So many of the things you've expressed are not only inspirational (to me) but they are downright 'keepers'!

Thanx so much for sharing

Mark

 

@Claire43013

How are you doing now? How is you T?

I'm curious about your hyperacusis, did it ever come back or did it went away and never came back?
Did the klonopin do that? Are you still on Cymbalta if I may ask?

 

Hi DutchGuy,
My hyperacusis went away with my first dose of klonopin and it hasn't come back since, hallelujah!! I continued taking it for several months to help with the panic attacks related to the T though. I stopped the Cymbalta after four months because I developed Seretonin Syndrome (which is really rare). I'm completely habituated to my T, 99% of the time I don't even hear it, and the 1% I do, I just don't even care. I'm back on the klonopin though but for a different problem, and I'm getting counseling. All the anxiety from my tinnitus triggered IBS and now I'm trying to get that to calm down : P I think the underlying issue for me all along (and for most of the people on this forum) has been anxiety. I have met so many people who have T and it doesn't bother them in the slightest, and it never has. A propensity for anxiety and depression is what can make it so maddening.

It's not my fault, trauma in life, rough childhood etc, but that doesn't mean it has to rule my life. If you learn something (panic, fear, etc) you can unlearn it. You can unlearn your anxiety too! Good luck and let me know if you have any more questions.

 

Hi Taterlady,
You sound a lot like me. For every tool I used to help my "T" my brain would counter it with "But how I can I use this tool (medicine, mantra, background noise) forever." The key hear to remember is that you WON'T have to use it forever. Eventually your brain will get bored with the sound and tune it out. Trust me, it drove me so crazy I had to check in to the hospital. If it can happen for me it most definitely can happen for you.

I didn't have just one mantra, but my main one was, "Ugh, that sound again, so annoying, well I forgot about it before so I'll forget about it again" and then I would absorb myself back into what I was doing. Sometimes I would have to tell myself this 1000's of times a day, but it became less and less over time, until you just don't need to say anthing to yourself at all because your brain starts to tune it out. IT'S REALLY HARD at first, but over time, it gets easier and easier.

Today when I hear it I think, "Oh yeah I have tinnitus." then I quickly forget about it because it's boring. Really, I know it's hard to believe now, but it will happen to you.

Glad I could be of help. I pray that you find relief soon!

Claire

 

@Claire43013 may i aks what sound you hear? I have it now for 7.5 months and i am better then in the beginning but stil it can make me nervous. I am no langer scared about it but i could wish that i didnt care about it anymore. Stil affraid that it would come worse in time. There are days that i dont care en i have also days that the T is very low. Can only hear it in silent room. My T goes up and down. Today want some shopping but when i whas home the sound whas louder. I also have the fullness and a lot of people say that it would go away in time.

 

Hi Sandra,
I hear a constant high pitch ringing that changes once in a while in frequency. Sometimes it turns into static, but that's usually only if my blood pressure is high or if I drink caffeine. My T doesn't change in loudness but it doesn't seem as loud anymore because I've habituated to it. I don't have any fullness but it does seem like there is a cotton ball in my ear from the hearing loss, but I've habituated to that too. Hope this helps!

 

Awesome success story and thanks for sharing it, Claire. You are such a winner and an inspiration to the newer sufferers. I like your 2nd and 3rd paragraph above which is almost the same description of how I Who Love Music describes his successful technique. Acknowledging or measuring your feeling towards T without thinking fearfully or catastrophically, and moving on with life by distracting it, that is one great formula of success. Congrats.