The Light

Hello Everyone,

I'm not sure why, but I was just sitting here and realized that today, at this moment, was the time to write my "success story."

I have had tinnitus since April 13th, 2013, so a year and five months, just about. I called this post "the light" because that's kind of how I feel about tinnitus now on a number of levels. I feel the load has been lightened, emotionally and physically, since it started and that, having come through the darkest parts of this experience, I can see all the good things that have come into my life because of the way I (eventually) chose to react to T.

I think using that word, choice, is so important. Surely, at the beginning, I felt powerless, I felt like I had no choice, or that my choices had lead me to T and so I needed to blame myself. I was so full of anger, self-pity (even some level of self-hatred perhaps) and more than anything, just potent despair. I saw my problem, and as so many others have, wished I had someone else's battle to fight, though now that thought seems unbelievable to me. I could not see the light at the end of the tunnel, especially in those first weeks and months, the whole world seemed to be covered in a black haze. I looked back at my life just on the other size of April 13th and thought, how on earth did this happen? How can I live, or have a relationship, how will anyone understand? Every person I saw I thought, "they don't have T", which of course, I couldn't know - and heaven knows what other horrors they may have been dealing with, but that was my initial reaction to the trauma. My life on the other side of that day seemed so rosy and easy and so intangible. I felt deeply and completely alone.

And, I was alone. Surely, people cared about me (and looking back, that was essential, though I didn't see the full value of that then, I needed it), but it was my "battle" to fight and I did have to come out of it by myself, that is I had to make the choice that I was going to be happy again. I didn't know how that was going to happen at the time, but eventually, and somewhat mysteriously, things turned out okay.

I can't count now how many things I tried in order to try and get out of my emotional and physical misery in the beginning. Looking back at that desperate person almost brings me to tears. I feel so terribly for her and for all of us here who have felt that desperation, and for all of those (though hopefully not many), who are no longer with us because they didn't feel they could find a way out. I spent a lot of money (oye) and tried a million supplements, meditations, doctors, therapists, HBOT, books, hypnosis - truly, with the exception of "the tinnitus miracle" (haha), I tried it. After all of that, I would say it all worked, and simultaneously, none of it worked.

I still have tinnitus, I'm not sure the sound has changed much, though if it has, it is softer and lower to me. Mostly though, I think I'm just habituated to it. Ah "habituation" the tinnitus sufferer's holy grail. I wish I had some kind of flight path I could lay out for others so that they could walk whatever path I walked, but I think it's different for everyone. In the beginning, trying almost everything gave me a sense of purpose in a way, I think I needed to fight it in the beginning so that I would know later that I tried everything. I don't regret anything that I tried, even the sillier things. So everything "helped" though nothing technically "worked" (at least not significantly enough to cure me).

At some point, perhaps 7 or 8 months after my T started, something just started to change. For those of you who have learned a second language later in life, I think that's the closest thing I can compare the experience of habituation to. I was living in France years ago - I was there for a year, and at first everything was difficult, but at some point, things just started to make sense to my brain. I felt little "hurdles" being passed, though I wasn't sure what I was doing exactly to arrive at, or pass over these hurdles. It felt similar with habituating to T. Yes, I was making an effort to be good to myself, to meditate, to go on with my work, school and friend (for T) or to do my verb conjugations and struggle through conversation (in French), but both were difficult and felt foreign. I had to learn all over again, in a different way, something that had once been normal and easy. I put in my effort, and mysteriously, my brain and body filled in the blanks and aided my efforts in both cases. It was both a conscious and a subconscious effort. I don't think I could have sped up the process much, though I think I could have slowed it down if I were harder on myself or focusing on my misery or trying to listen to my T. I am so in awe of my body. Of course, learning a language and habituating to T are not very similar in many ways, but hopefully everyone kind of gets the point I'm trying to make. I feel like habituation can seem so mysterious, but it's a process that happens in life all the time, it's just a hard one to imagine given the toll T takes on so many of us.

Anyway, all of this to say, there is light at the end of the tunnel. When my T began, I was as close to wanting to leave the world as I have ever been. I hope that anyone reading this who is in that dark place now, doesn't look at this post and think "she's too happy and nonchalant about this, it must not have been that bad." Believe me, it was bad. My mother had to fly 3,000 miles to take care of me because I wasn't eating, was having panic attacks and all I could really say was that I wanted to die. That is a difficult thing for me to admit now, that I said that, that I looked at the exacto knife on my desk and weighed my options. I only bring up all of that darkness, because I want people to know that there is a life beyond that. Things can be good again, though it seems truly impossible. Life probably will not be the same again, but it can be as good or better, if different. I truly believe that.

Looking forward, I feel this wonderful sense of purpose. I'm an artist and designer, and I want to use my skills to bring more awareness to this condition. My T was noise induced and it happened because I simply did not know to protect my ears the way I protect my head when I ride a bike or my body when I have sex etc. I want to make protecting yourself from T as normal and as widely known as those things. I think there's a hole out there for beautiful and meaningful T awareness that is more focused on the individuals and their (inspiring) stories. I think we can share caution, while still spreading hope. Though fundraising for a cure is absolutely needed (of course!), I think I can add more to the world (personally) through nipping noise-induced T in the bud where possible, especially with teens and young adults. I feel I can make awareness beautiful. For those of us who have it, I hope I can spread a little light and show that life is still beautiful with T Being in a position to take on these projects feels like such a blessing to me and it's one of the things I'm thankful for from this experience, among many, many other things.

So lastly, thank you to all of you who, so many of you, who have written here, who have posted yours success stories, who have been my pen-pal, my therapist, who have helped me and who have let me help you. You have all been a gift in my life, though many of you may not know it, or even know me. My greatest privilege has been being able to offer a proverbial hand up to those who needed it or who asked it of me. It is a joy, and I think, once you hit a point when you are more whole and ready to give of yourself again, giving back has been the most healing thing for me in my T journey. Whether that was giving back to other sufferers, or volunteering in my community, looking outside of myself (once I was able) helped me heal the most. It wasn't something I even thought I'd be able to do when T first struck, but I'd recommend it now. I know all the old-hands here already know that this feels good since they're all still here spreading hope to myself and others! (Bless you @Markku and company for giving back so much of yourselves and creating this forum!)

So, in closing this (gigantic - sorry) post, my heart is with each and every one of you. I know we don't all have the same T, or the same journey, or the same pain. I do not mean to belittle anyone's suffering to say that I currently feel good and I think that something like this is possible for everyone, but I do believe it is possible for everyone, though I know in some cases it must be much, much harder, I still think it's possible. That's just me! I may have to habituate to a new sound again one day, or we may find the "cure" (woo!), but if not, life can still be good and that's what I want to say.

Part of my little healing was writing a blog for myself, though I think it's been of some help to others. It's a smidge out of date because at some moment I no longer needed it, but it shows my inner journey over about a year and what I tried. It's not selling, promoting or collecting anything, but if it helps, here it is: www.hopeblog.org.

If anyone wants to write, wants advice, wants to collaborate on art things, awareness or whatever else, or if you have a story you want to share that could be part of some future art, I love T penpals and I love stories (and I really love writing - clearly - ha!) hopeblog@outlook.com

With gratitude and hope,
awbw8 (all will be well)

 

woah.

Totally and utterly speechless.

Beautiful words...

 

What an amazing, inspiring story. And beautifully told. Thank you for this gift, @awbw8. I developed my tinnitus only about two months after you; your experience echoes much of my own. Like you, I feel that tinnitus in many ways has made me a more involved, grateful and compassionate human being. I still struggle with it some days but my life is good, and my "struggle" really so very much easier than before. I look forward to reaching even more acceptance and peace in the future. You have inspired me to keep on this path.

I so agree with you on this: We should all should do what we can to spread the word to young people, or those who do not have tinnitus but are at risk due to their professions or lifestyles, that our ears and auditory system are fragile and need to be protected. We talk a lot about a cure -- but that, in part, is because it involves us. What about prevention? We should do our part to help others. Maybe we should all brain storm here at Tinnitus Talk about what we can do in our own communities. Our schools instruct teenagers about the dangers of smoking, drugs, alcohol, sex -- but nothing about noise or things that would impact their hearing.

Anyway, blessings and namaste to you, awbw. As you say: All Will Be Well.

 

Beautifully written. Thank you. And Yes, Thanks to all the compassionate people in this community. Makes so much difference.
Not sure I am out of that dark place yet, but your story gives me, and many of us, hope.
Thank you.

 

The dead wish they were alive.

 

I really needed to read this today. Truly inspiring, thankyou so so much.

 

Thank you for sharing your success story. It will be an inspiring piece for the newer sufferers to learn wisdom from. It is so touching to read your story especially about your mom flying 3,000 miles to be by your side in your darkest hours. We all had those darkest time when we didn't know how to move on, how to breathe in a life filled with so much suffering from T. Thanks Heaven most of us sailed through those dark days and now are telling our stories to help out the newer sufferers. Hope you stay around or come back at time to update us and to contribute to this T support family.

 

thank you so much for sharing your success story, it gives us hope as well. Beautifully written. i also hope you stick around to help keep our hopes alive and our spirits up.

 

Thank you all for the kind words, they mean a great deal, especially coming from people whose posts I've read and taken comfort in during the past 1.5ish years. The support and wisdom and honesty you've all shared and shown has meant the world to me.

I'll definitely still be around helping where I can and sharing and updates I have on my efforts to spread awareness, there's nowhere more supportive than this to share

 

Yes I've had tinnitus for about a month now, and I have it because of a severe brain injury that I had 2 and a half years ago. It's a wonder and a shame that the tinnitus did come on, but I understand it happens for 95% of those who have sudden deafness (from my ENT).
At first I was very suicidal and I even went down to the parking garage to jump off it but was too afraid of heights to do so. I was hospitalized and put on a mood stabilizer (depakote) that seems to have slowly helped the ringing because it dampens nerve signals.
Unfortunately, I got burning mouth syndrome with depakote so soon I'll be off of it. We'll see how my tinnitus is however I fear for the worst.

 

Its good to know that people can learn how to deal with it. My life was hell for three years, until i decided T would no longer control my life. I accepted the fact there is no cure. Its just you that has to deal with it. What makes me mad is that people on the internet sell ‘cures’. It will cost you a fortune and no result. For anyone in Europe i can advise a visit to Brain in Antwerp. At least they will tell you what kind of T you have, and its really affordable. They make a Qeeg which shows activity peaks in your brain. They treat them with tDCS and for some (30%) of the people it works. There is also a new promising cure tinnitracks. It was presented in Eindhoven (Netherlands). It appears that it will only work for a specific group of patients, but its always worth a try. Their website will be ready in june 2015. You send them music and they filter out your T frequency. For a couple of months you need to listen to this music with specific earphones for about 90 mins a day. Brain in Antwerp says the theory is good, but their clinic trials showed no result. But maybe they had a group of patient with the “wrong’ T. I will definitely try it, and will keep you posted.
have a silent day
Peter

 

Contact me please I have had T since March 2013 and written my Will yet still here fighting.

 

Well done and thank you for sharing it. As one who has suffered from T for almost 20 years I get it. I have a good friend who has been battling breast cancer for as long as I have been battling T. She is winning and so am I, and every time I start to feel sorry for myself I remember her struggles and say a prayer for her. Whatever it takes, we cope.

 

Wow... Congrats! I wish I could be like you... xxx

 

Thank you for your story. It's great to hear how you've learned to cope with this thing we all share. So far the only thing I've found that helps me is a good tequila buzz. But of course I can't go around all day with a tequila buzz, so I'm trying to find distractions like music, masking sounds, focusing on work, all while counting the good things in my life.
My goal is to swing back toward my formerly positive and happy self, the way I was before my T started a couple years ago. Good luck to all of us!

 

awbw8, I'm not sure what format you use for your art, but you should definitely branch out to writing (if that is not your art form). You have laid out this vourney as best as it can be. Everyone on this forum should read this, it will save lives, and it will change lives. I, too, have learned that the only person who can help me is me. My wife has given me the love, and saved me from my own hands, but I am the one who has nudged me to acceptance. I, like you feel connected to everyone who visits and uses this forum. And thank goodness for Markku! The thing I notice more than anything, is how connected we all become while dealing with this challenge. Stay Well. SickMick

 

Don't despair, Crucial

 

Very inspirational story. I have had T for about one year and while there are days when I feel more disouraged, I too believe that there is hope that I will regain the control that T is attempting to garner from me. You see - T doesn't like to be distracted --if s/he would have it their way, T would be noisy all the time and have a free-for-all without hesitancy. But I've learned that listening to my playlists on Spotify, going to work and/or to the community to spend time with people I enjoy being with, playing Words With Friends or any other activity, passive or active, has helped me adjust and cope more effectively with T. I know I am not alone here with T and while I wouldn't wish this on my worst enemy, I am finding that people near and dear to me are also dealing with T. This allows for me to share what I have learned about T and how to manage. I also make an effort to tell people of all ages to be protective of your ears-- that T does not affect only 'old people' which I believe many people think is the case. I would also caution people with T to make sure that any and all medications you are taking are NOT ototoxic--that is, if you find that T is amplified during the course of treatment, read the side effects and also Google the medication to determine if it may adversely impact on your T. For me, Cipro use for a UTI made my T so loud (and tinney) to the point where it was getting unbearable (for me T went from mild to moderate sound); I did some research and found that Cipro is ototoxic--I was able to have the doctor find another med which was non-ototoxic; I think my T was only slightly affected when I stopped the course of treatment (early) but what if I didn't connect the dots. All I'm saying is that T has impacted our lives but we have to be empowered and become our own advocates to ensure that we protect ourselves from the onslaught of T. Good luck to everyone and please try not to dispair--seek help and don't hurt yourself!

 

Re: "year and five months"

Really, such long endurance....please, I woke up from Gastrointestinal surgery with Tinnitus in 2008 I thought it was a reaction to perhaps the anesthesia or the broad spectrum anti-antibiotic's given for such a surgery (usually FLUOROQUINOLONES) & that it would pass.

It's not in my ears per se' as much as it is in the middle of my head.
It's a combo of 10, 500, 11,000 & 13,000hz frequencies.
Oftentimes it is so loud that listening to musique via ear-buds jammed in my ears & the volume turned up doesn't even mask it.

It is CONSTANT. It is ever constant & It is maddeningly C-O-N-S-T-A-N-T!

It only goes from louder or MORE Louder to some-times? MUCH LOUDER!!

It never goes away it never softens it's inflicting torment unless I "Clap" my both ears with my hands and then?? it goes away for mere seconds.

I cannot sleep because of it. I cannot read a book because of it, I cannot concentrate enough to get any type organised work done since I'm always scatter-brained because of this.

The only thing that keeps me from curing it with a piece of high velocity lead is what Alex said: "The dead wish they were alive.".

I've not seen the light I've only learned to live with the leech of such torment that only the Nazi's could have invented.

 

Thank you to everyone for the kind words and thank you mostly for sharing your stories in response. I've been having a relatively difficult week (non T related), and reading your own stories really brought me back to a better place, so thank you.

@SickoMicko, I write and really enjoy it, but I'm not a "writer"...yet. If I ever become the next JK Rowling (ha ha) then I'll make sure to advocate for T sufferers on a grand scale ; ) Seriously though, thank you for the compliment, it warmed my heart immensely.

@crucial, I'll write you a message, please hang in there.

@Cas Michel I am so very sorry that you are having such a horrible time and have been for so long. Please understand this is just my story, I wrote it partially to be theraputic for myself, but of course I want to give others some hope if possible. Success stories gave me some hope when I was at my worst, so I hope to give back as much as I am able, which is also why I come back here. I care about this community and those suffering. That said, I'm not trying to say this is or should be everyone's story, or that everyone should feel better after 1.5 years - this is just my own, personal experience. Everyone has their own T and their own journey. My T may worsen in the future and then I'll not be in as good a place and have to readjust again. Change is inevitable, for better or worse, but coping with that uncertainty is part of what T is teaching me - it is a daily meditation. If there is anything I can do to support you, please let me know. I truly hope you feel even just a little bit of peace very soon and I'm glad you found TT. I would, very humbly, advise you to rethink listening to ear buds at a high volume or "clapping" your ears. I know you're trying to drown out the T, but harming your hearing will hurt in the long-run. Please be as kind to yourself as possible.

 

i have been able to adapt quite well although i am cautious of loud noise, earplugs are a must,i spend hours under the stars,i am an astronomer and that helps heal me with the inspiration and tranquility that comes with it,i wish the best to all !

 

@Cas Michel, I am also a short timer having contracted this plague June 2, 2014, a day I will never forget (like the day Kennedy was shot), but hope to put it behind me before I move on to the other side. My condition is very much like yours in that it is constant and loud and it cannot be masked and I have a plethora of wonderful sounds. However, like awbw8, I have been able to attain a certain level of habituation, but because of the non stop intensity, it does wear me down. And every morning I wake up, I know I will be challenged. Seven plus years is definitely a long time to deal with this, but you have to be a very strong willed person to have accepted and handled it for that long. Just something to think about. Waiting for the fix. SickMick

 

Thanks for sharing. I've also habituated to my tints 75% of the time. It's hard for me to look at this site. When I read about tinnitus, I am more bothered by it. It reminds me that I struggle with it and I get irritated and anxious so I seldom go here. I've had tinnitus since 2007. It came after a surgery. I blame it on the pain meds although I can't say for sure. There are a number of medications that cause tinnitus. I've went to Oregon Health Science University Tinnitus clinic for help. They tested me, told me about my tinnitus etc and gave me masking options. I didn't have hearing loss. I haven't had any sound/noise trauma. I only had tinnitus in one ear then. Interestingly, I now have tinnitus in my other ear. Again, no hearing loss, no sound trauma, no medication that I'm aware of that would causes my other ear to start ringing. I tried a number of sound masking options. The best one for me was the pillow speakers. I was given free Bose earphones and little recorder. They loaded masking sounds that I found soothing, at the frequency that was helpful in masking. Over time, I found myself not listening at night. I learned to not pay attention to the tinnitus. My life is full and I'm not bothered by it very often. When I'm tired, upset or stressed it's harder to ignore. And at this moment, as I write, it feels like the volume just increased. It's because I'm writing about it. Tonight will be harder to sleep.

 

Still alive the volume dictates how close I get to the pearly gates. For now this moment in time I am alive and one must be grateful.
God Bless all of you T buzzers.
Thats if there is a god.

 

Thank you for sharing I felt like I was reading my own story, I really didn't have anyone who understood until I found a clinician who works with hearing loss with heavy focus on Tinnitus and all its facets. I still have days of anger and frustration but for the most part staying busy has helped me. Keep me posted on your journey and share anything you can that helps you get through the day. It was a year in March since my onset and I can assure that there was no anniversary celebration!

 

Thanks for this positive story, helps alot! Good to read you are doing ok.

 

I'm doing well MonkLN, thank you for the kind words. I hope you're moving along a good path, too.

 

Thanks, it's hard. But i dont have to tell you that. I keep on telling myself that it will get better and i will be me again..