Always crying

It sucks. I just can't see how things are going to get any better. I am aware of it literally every waking moment. I'm so scared that it will be like this forever. I won't be able to cope. I don't want to have to cope. I don't want to die either. But my life just sucks so bad. No one cares anymore. No one listens anymore. Well, you guys do, but I can't count on your every hour coz I need to learn how to live on my own. I'm terrified. I'm starting uni next week and I know I won't be able to sit through lectures. I can't concentrate. I can't study. I hate going to people houses coz it's so quiet. When I mask it I can still hear it (not as bad, but it's there. Always). I'm absolutely miserable and I wish so bad I could somehow learn to ignore it. But I can't. I try. But I just want to tear my hair out and scream all the time. Will it go away? Please tell me this is going to go away. I can't do a life time of this. No way.

 

Dear Neenie, I do understand exactly what you are saying. It sums up exactly how I felt for the first few months and I honestly didn't think I would be able to deal with it. I would take sleeping pills every night just to escape the noise and dreaded the start of each new day. Now 15 months further and the tinnitus is still there, the same volume, pitch, unceasing BUT, somehow, it doesn't affect me in the same way as it did in the beginning. I know it's what everyone says, but I do believe it's true. Hang in there, don't give up, don't panic, give it some time and don't think too much about the future, just deal with it a day at a time. I send you lots of hugs and best wishes. Liz

 

Hi Nina,

I plan to send you message today, but see this already. Well, 4-5 months for you now, at that time, I am a little bit better, but seems you haven't make it. I know your feeling, I know your suffer. I will say that the T will go away, but maybe in 10-15 years, we can just accept it now. I don't want to say anything to comfort you, if you want to cry, just cry here. We all support you and we support each other. At the 20th months now, I am a little bit tired about my T, I just think I have to do something I like, and the T is always there no matter how sad I am, so I stop to think about it sometimes. Especially when I enjoy some movies or TV series. Yesterday, I watched the TV series "Homeland" season 3 for a whole day, and almost forgot the T, actually it is there, very loud, but I just don't want to give the damn T even one second to bother me again and again. Maybe you still need some TIME, don't worry, it is the process we all have to experience. But one thing I could answer you, we will NOT suffer from this forever, I have confidence for this point.

 

Neenie, I know how you feel. I'm lying awake with T screaming, seemingly worse than before, after getting a few hours of sleep. I've been taking all sorts of meds (steroids/antibax to treat possible ETD, sleep aids to battle insomnia because the T keeps me awake) and nothing seems to help, and I feel very weird - not like myself at all - thanks to the meds and lack of sleep. And I can't escape it either. It's so frustrating and I feel sort of hopeless.

I think it's normal to feel like this, but one of the great things about this community is seeing stories from people who have managed to habituate and live with T. It's hard to always stay positive and tell yourself that you can get through this - I struggle with that every day, practically every hour - but there's proof right here on the boards that it's possible. It's crummy and it's tough work but I believe that I can do it, and that we can all do it. Staying distracted (and truthfully not reading forums or stuff about T too much) really does help.

On a side note, this is my second major T spike - the first happened when I was 22, thanks to not protecting my hearing. I did eventually learn to (mostly) ignore it. It can happen, it just takes time. (Of course, a huge spike like the one I'm going through right now doesn't help, but I have to believe I can make it through again.) Hang in there!

 

Thanks guys. When I look at your status's and I realise how long some people have had tinnitus I get really really scared that I'm gonna be one of those lifelong sufferers. It's almost been half a year now and I can't picture dealing with this forever, or even a year! I'm terrified

 

Oh Nina, I really feel for you! I can tell you that my tinnitus did get better after about a year, not just through habituation. I don't know why, whether it was regular massages, acupuncture or perhaps that I had like a gun shot go off in my ear when I took a long haul flight which might have eased some pressure. I read your posts and see that you are doing a lot of the right things and there is every chance that your sound will get better. You are a strong and beautiful woman, no way will you be a lifelong sufferer!

 

Thanks man, that means a lot for me to hear. I appreciate it

 

I hear you . I'm 3 months with mine and it scared me every day. My ent tinnitus man said to live for today and let the next 70 yrs take care of themselves. Easier said than done but I try to take his advice . I went on a holiday a few days ago with friends and was amazed by how good I felt doing something I enjoyed rather than living in my own head. I hear the t all the time but now sleep without my sound machine on . I accept it, I hate it, but it can't beat me anymore. Life is too short anyway. No one knows what tomorrow will bring, be it that it goes , or it's just another day ....
Hope you feel better soon xx

 

Remember, most of us that have had it a long time, we aren't "dealing with it"... We just simply have tinnitus. It doesn't have us. My tinnitus slowly became something I no longer worried about, reacted to or cared about. And I have both pulsitile and ringing tinnitus. The only reason I came to this board last month is because my ringing tinnitus spiked and I wanted someone to commiserate with since my family cannot relate. I'm already to the point I don't care about the tinnitus anymore. I hear it, some days it's louder, some days it's quiet, but still there. I've just gotten to the point where I don't react. And sometimes I'm able to completely ignore it. I just don't notice it at all.

Have you taken my advice that I've given you on other threads? Seeking a second opinion regarding your meds?

 

I have no more tears left, you will get there too.
But here is a nice quote from a research analyst,

More recently, Autifony received additional investments from Pfizer to support its drug development, demonstrating the optimism surrounding AUT00063. If this treatment successfully navigates the company pipeline and gains regulatory approval, it will increase options for patients experiencing hearing loss or tinnitus. For tinnitus patients, the ringing may finally stop. - See more at: http://www.cuttingedgeinfo.com/2013...-loss-tinnitus-patients/#sthash.EKZQfo8g.dpuf

 

Yeah but thats for only hearing-loss Tinnitus patients. Im not sure how they measure the hearing loss there though or whether it could work for normal-hearing patients.

 

I sometimes also just cry and cry and cry. I was trying to listen to some very beautiful music, and it just brought back a flood of memories, and made me so sad that I cannot enjoy music the was I used to - I just cried and cried and cried and cried, finally I got tired of crying, took my meds and went to sleep. this disease really is nasty.

 

Maybe I already told it here once, but one of my greatest examples is Nick Vuijcic, he was born with no arms and legs. He is now a worldwide speaker, married and has a child. A lot of his lectures are about hope, even when when the obstacles are huge. Maybe you should watch some of his video's.

 

I'm almost 9 months with T and significant hearing loss in 1 ear. You will have good and bad days as I'm sure we all do. I miss the complete silence and hope to be able to enjoy that one day. I have been using a pair of Boise noise canceling headphones to listen to music when my T is really bad and I can say these headphones help tremendously!! When I have them on its like I don't even hear the T! Good luck it will get better!

 

No, I don't think you read it correctly. It is not say for "hearing-loss tinnitus patients". It says for "hearing-loss AND tinnitus patients". Thanks.

 

These are truly words of wisdom from a T 'veteran'. In the beginning when I was suffering mightily like Neenie now, I would never believe I could ever habituate to such an ultra high pitch loud ringing as mine. The veteran members were saying things as Karen is saying above but I was skeptical. However, I didn't want to live the rest of my life in misery either. Searching through success stories after success stories. you see the pattern - time, acceptance, willing to adjust and adapt, being positive and don't believe in distorted thinking, masking, treatments such as TRT, CBT, etc. These are things that work for most people.

TIME - So I learn to give it time. I said if what they say or experience are true, then I just need to follow. What have I got to lose and what else were my options? I give my body time to get used to T by not constantly worrying about what it does day to day and not . I took the ringing and the setbacks as part of the process of TIME. I got back to living to distract T, and to give my body time to heal. It took a few years, but time is on my side.

ACCEPTANCE & being POSITIVE- it is such a crucial thing. I learn the importance of this from especially two ladies with severe tinnitus/hyperacusis. Zoe was the young pretty lady who made a tinnitus firm in university. She was deaf at 15 and has to live with loud unmaskable T. She said her T was unmaskable due to deafness. There are no other sounds to compete with her *&^%$#@ loud T. She resisted it initially and suffered badly. Then she decided to accept it instead of suffering emotionally for the rest of her young life. She stayed composed and finished her university. Instead of dwelling in misery, she said she would focus on the beauty of the visible world and she loves diving. Here is the film she made in university (probably the first of its kind):

Tinnitus Short Film - 24.7.52.10.

The other lady who exemplifies acceptance and positivity is a young lady jazz singer Melody Gardot. Gardot must wear dark glasses to compensate for hyper-photosensitivity, earplugs for severe Hyperacusis/Tinnitus. On top of that she was hit by a SUV at young 19 which massively damaged her body. Even now she is walking limp with a cane. You would think she would give up on life and cave in to despair and depression when she was hospitalized by the accident which caused multiple pelvic fractures as well as head, back and spinal injuries. Unable to walk, or even sit up comfortably, she spent a year mostly lying in bed. Her state of mind, combined with the pain she was experiencing and her severe T & H, you would think these should sink this young girl and she would give up on life. NO. She decided to accept her condition and took a positive approach to it by insisting to pursue her goals, her singing career. She overcame her mountains of challenges and went on a blooming sing career, doing shows all over the world. She has been a true inspiration to me during my initial days, realizing that you don't have to give up on life just because of T & H, and on top of that, she has to rise again from the ashes of that awful accident. You can read her story here:
http://jazztimes.com/articles/24598-melody-gardot-s-melodic-therapy

I am not a person with iron will nor a stoic. I need to borrow strength from others during my toughest struggle. I needed to use their examples to help me overcome my T & H mountains. These two ladies inspire me to soldier on with my T & H journey and now I realize how important it is to learn to be positive, to learn to accept things even though they seem so hard at first, and to give the body & the mind time to get used to the T & H. Today I have my life back and I owe a lot to these fine ladies and their sublime examples of never quitting.

 

The accident she speaks of: Gardot was hit by a car while riding a bike a few years ago. Among the lasting effects of that accident are the fact that she has to walk with a cane, has extreme sensitivity to light, and that the very music that brings her so much joy can cause her pain if it’s too loud – a condition called tinnitus. “My drummer plays brushes all the time, and if he plays anything else other than a brush, I smack him,” she says as we talk outside the Rockwood. “I can’t take loud music.”
__________________________

Seems to me she does not have tinnitus but hyperacusis.

 

Wow, thank you guys. As per usual I am in awe of your generosity, to try to make me feel better even though none of you actually know me. It really means so much to me and I listen to your every word and it makes me feel better. Sorry, I'm a really stubborn slow learner so I ask the same questions a lot and love hearing the same replies a lot because...well....i guess I'm not capable of being positive or realistic or rational on my own, so seek help from you guys to keep me on the right track. Yesterday, I nearly took my own life. But I was scared. As I have been in the past, and stopped half way through. Because, really, I do not want to die. I just want it to stop and seem to find no other options for me out there. You guys give me strength to fight on.

I've been in mental hospitals for most of my 20's (anorexia, severe depression, insomnia). Get admitted. Psyc changes me meds. Get discharged. Then meds stop working, then get admitted, change in meds again, discharged, and repeat over and over again. I've been so sick that I havn't worked or studied full time in 5 years. Instead I sit at home, without any friends, and feel sad that I've let everything get so bad. Each time I'm in hospital, I'll make friends there, and see how those friends slowly get better and better each week/month, and feel disappointed that I'm still the same anxious person I was to begin with. The psycs have suggested I get ECT done, but I am afraid.

I used to be pretty average and normal so I know I have it in me to be normal again. I've just lost myself a bit in the last years. And I think perhaps that I'm so different now due to the millions of meds I take to stop myself feeling like I want to kill myself. I have the potential to have a great life. Wonderful family, I love my partner Tim (been married 6 years). He's a partner in a law firm so I'm lucky enough to not have to work if I don't want to. Studying to get into my Masters of Audiology (exams next week wish me luck!)

Anyway, sorry for deviating from the topic. I just wanted to say a big thank you for responding to my post. I really do love you for making a stranger feel better. Many many MANY thanks, Nina

 

Nina,

Soooo glad you didn't do it!!! For you and Tim!! Oh man! You DO have the potential to have a wonderful life!! DON'T give up! You just need to get centered and focus on how important your life is (even if you don't think so!!). Nail those finals (but don't stress about them!!) and keep putting one foot in front of the other!! We need you here at TT!!! Keep seeking treatment, something IS going to work!

Your Friend,

Jeff

 

...........................it will get better....promise

 

The article says she has severe tinnitus and hyperacusis. In one of her posts on MySpace which she used a lot before her current web site is set up, she mentioned she was being fitted with maskers like those of TRT for her ears.

Don't give up Neenie. There will be a bright future for you. You already have a wonderful and capable husband. You have good look and a good man. You have financial security when many don't and may need to worry about the next meal or next month's rent. In life, we just can't have it all going our way. So we have to learn to accept the imperfections in our life. When I first had T & H, my thinking process was often distorted from the reality and I tended to view T & H as catastrophe. The stories of Zoe and Gardot taught me I shouldn't treat T & H as an end game. They didn't and they had it worse. So I use their example to motivate me to be more positive, to focus on pursuing my goals in life like them. I learn from CBT the problem when people get trapped in 'All or Nothing Thinking', a cognitive distortion. I learned to enjoy the good, accept the bad and ignore the ugly. Can't have it all. So thinking this way has helped me moderate my reaction when T & H, the ugly showed up. It took a while to learn to think this way, and the tinnitus suffering becomes less and less. CBT cannot reduce the volume of tinnitus, but it can help us moderate our reaction to tinnitus, which is what counts.

 

You know Neenie sometimes life has strange twists. By you getting your Masters of Audiology you may very well be able to help many people with T You may even come up with a treatment, and above all else, you Neenie will be able to totally understand what T patience's are going through........

 

I dont know you but you are BEAUTIFUL!!! Dont ever give up either.. One day this will all be gone!

 

Thanks man I hope you're right!

 

Gosh, what a beautiful lady you are. What a lovely pic. Is that your significant other?

 

Yer it is

 

Well in my honest opinion he's a cutie-pie