I Don't Want to Be Here Anymore

I already had tinnitus and I was starting to habituate. I woke up this morning to the loudest and most deep tone I could have ever imagined in my left ear... I can't do this anymore guys I just can't. I don't have any hope and I just don't want to be here anymore. I am actually praying that god will take me away now or sometime soon because I quite literally cannot function. My brain has taken too much and this is it. This is all I can handle. I cannot be here in this broken body anymore.

 

@derpytia PLEASE don't give up!!!!! I know it's SOOOO hard! Cling to hope!! My T almost got the best of me, yet I have pulled through and you will too!! You have to believe!! Get yourself stabilized ASAP!! Share your situation with family/friends and medical care now! If need be, get meds to even you out. T wears you down, I totally get it! But your life is so much more important than your T!! Do what you need to do to just get through TODAY!! Please. Don't worry about tomorrow. You WILL get through, trust me!! But get the help/support you need right now!!!

Keep me/us posted please, to let us know you are OK!

Jeff

 

I can sympathize with you but you must go forward if not for you for the people that love you....Just keep telling yourself that sometime in the near future they'll be a cure or a copping mechanism ...Go out and do something that distracts you or occupies your mind I know its tough I really do........Hang in there

 

have you seen the retigabine thread, people are having some results, it shows something can be done

i hope your deep tone will settle in the next few days

 

There's a cure for us out there, it's just finding the right one for you. Don't let this win, I've had similar thoughts but I just can't give up no matter how depressed I am. I will get better & so will you.

 

I have had the same thoughts, it seems to be worse for everyone this time of year, hang in there derpytia, this sucks so bad but you are not alone.

 

Its a pity this already not very nice condition has the cheek to torment sufferers even more by changing its tone and volume at sometimes seemingly random times....... hang in there and take some pleasure in the little things and your mood will lift and your t will improve

 

I join the others, @derpytia, in urging you not to give in. I know, it can feel so overwhelming. I also have had dark moments when I have thought it would be a relief to be done with it all.

But that moment ALWAYS passes. I go on and there is more joy waiting for me right around the corner. I had a great year at work and won a prestigious award, to my amazement. I saw my nephew, a young man, taking on the role of a stepfather and being so happy. And on some days (not all, but some), my tinnitus quiets down. Please, you are not broken. There is something waiting right around the corner for you, too.

 

derpytia -

You may be stressing-out because you are trying too hard to make it go away. Also, this time of year can be especially stressful.

I have not visited this website for a long time, but I used to write quite a bit. Tinnitus is much less a factor in my life now than it was 3 years ago. Sometimes when I'm stressed or feel sick it can seem louder than usual.

Just a few words of advice:

• Don't try to control your tinnitus. You - your conscious thoughts - will never win that battle. Tinnitus is occurring at a lower neurological level than your conscious thoughts.
• Do try to control your reaction to tinnitus. Try to make an effort not to react negatively.

It seems hard to understand at first, but you can train your mind to ignore things. In fact we selectively ignore things happening around us all the time. We can approach the issue of tinnitus the same way, as something that we can learn to ignore. This depends on your attitude.

People naturally habituate to tinnitus all the time. At some point, most of use stop giving it our undivided attention, because it becomes boring.

If you can find a psychologist in your area who deals in a Cognitive Retraining Therapy, they may help you habituate sooner.

 

@derpytia

I'm in the same position, new hissing tone, new ringing on top of already horrible one I have, really hard for me too.
So I understand but don't know what to say
Hugs!

 

@derpytia hold on, maybe it's 'just' a spike and the loudness will be less tommorrow.

 

@derpytia
Your reaction will change. The stress makes it harder but your come this far and you can continue. In time this will change for the better. You just need to seek the kindness toward yourself and the courage to fight on,
We are all with you and want you to know we have your back. That's what we are here for.
Don't give up. The bad feeling will pass and the T reaction will follow.
If you need the extra help get the meds to see it through. When faced with giving up or medication, there is only one way.
Choose survival. The light will shine again for you. It takes time. It takes strength. It takes love.

Big hugs to you.

 

Hey all it is now midnight on New Year's Eve and I am still awake because I cannot sleep because my body won't let me. I've been nonstop crying since yesterday at 9:30 AM and am honestly surprised that my tear ducts are still making tears at this point, you'd think I'd run out. I'm a wreck. I honestly am so tired mentally and emotionally and my body feels so broken. But nevermind that I have to take a flight back down south to go back to college in a few days. Nevermind that plane rides always spike my T. Nevermind that this latest 'spike' turned out to be permanent. Nevermind that my holiday was terrible through and through and I found no joy in it.

I was doing SO WELL and was slowly on my way to learning to live with this crap. And I didn't do ANYTHING. All I did was go to work, come home, go Xmas light watching with my boyfiend, come home do a little internet leisure time and then went to bed. I was supposed to go to work today at 2pm and was going to sleep in till noon. But no. I woke up at 9:30 AM turned over on my other side to get back to sleep and boom I heard that new tone loud and clear. It has not gone away. I protect and protect. I don't go to loud concerts, I always turn the TV down, I'm a musician and now I don't even listen/play music except for maybe once every two or three weeks!

I know I know 'don't let the T win' but honestly, it's a passive battle that I cannot win. And I'm TIRED. I'm tired of fighting, of trying to cope, of even living. Living brings me no joy anymore; not that I had a lot of joy in it to begin with. My life was a mess from the day I was born. It just keeps getting worse and I feel like I wish my mother had not told the doctor to do a C-section to save my sorry life when she was hemorrhaging. I could never commit suicide. I don't have the willpower for that and I am afraid of death. But I simply just wish not to live because living is equally painful now with T. T is not my friend, T is not my brain's music, T is not helping me to stop and appreciate little things in life. T is my enemy and it's winning.

I'm only 21 years old. I should not have this happening to me. I should be with my friends and going out and enjoying parties and movies and shopping. I should be creating albums and writing songs and performing like I always dreamed of and worked hard for many many years to do. And here I was afraid of having T get so bad that when I'm 60 I will be like those elderly folks I've seen in homes before (only younger) who just have no willpower to live because their body and mind is out of their control.

I don't have hope that there will be a cure soon if ever. I've seen the posts on here by people more educated than I am about medical science. If a cure is ever found, I'll bet you the drug companies will not sell it so they can make more money off of us treating it temporarily. But we don't even know how the cochlea and the brain work together! We haven't got a clear idea of how any of that truly works in there. I cannot go to AM 101 it is not in my state and I do not have the funds to go somewhere else (plus plane rides and long drives spike my T which would be counterproductive). I have eye problems already and cannot afford to risk side effects of Retigabine. I've been watching the Autifony trials and they are turning out to be just as inefficient as AM 101 was.

And that's what has been festering in my brain since I've been trying to habituate.

I'm only 21 years old and T has robbed me of my sanity, my happiness, and my physical health. I'm tired.

 

It can just be a longer spike. Mine recently lasted a couple of weeks. Hang in there!

 

Sorry to hear about your suffering and feeling of hopelessness, Derpytia. It is hard to go through the dark days of tinnitus.I have been there myself a few years back. I have ultra high pitch dog whistle T. It rings with so much condensed energy and high pitch that it is probably 10 times the pitch of a dentist drill. When I played a video clip matching my T to my family, instantly everyone screamed, covered their ears and ran away as fast as they could. I don't know if my T is of the worst kind but from their reaction I know it wasn't something a normal person can endure.

Then soon after T started, severe hyperacusis joined in the misery. It turned all normal sounds into glassy and piercingly hurtful sensations. Couldn't stand the sounds of TV, dishes, driving, music, social conversation, not even the soft voice of my wife spoken too close. I had to withdraw from all social events, no going out, no eating out, no movies, no concert. Gosh! I had to wear earplugs to protect from even normal sounds. But that blocked off all outside masking sounds and the ultra high pitch dog whistle T was so awfully dominant and harsh. I had to choose the lesser of the two evils. But there was no lesser choice among these two tyrants over me. But these two were not my only sufferings back then.

What happened was, T&H opened the flood gate of hell of relentless anxiety and panic attacks on me because I had suffered from anxiety/panic disorder for years prior to T&H. These panic attack symptoms were simply terrible, and they would attack me daily and hourly. Often I would wake up with loud T and the panic attacks would come before I was even awake enough to reason myself out of an attack. How do you live with something so unlivable? My tired and stressed out mind was dangling the big 'S' word to me too as it saw no way out of this immense suffering. I thought the end was near for me too back then, and I never thought I would recover from such deep sufferings.

But never say never. I am back to normal and living an enjoyable life. Time and a gradual change of attitude has done some wonder of healing. Just came back from a long vacation to Asia and before that a mini cruise to the Bahamas. I did these right after my anxiety & panic disorder just flared up again out of the blue. You would think my T has subsided. Not really. On both the trip to Florida and to Asia, I could hear my ultra high pitch T above the noise of the jet engine inside the plane. That devil is still there.

But T is no longer an issue. The same T sound used to bring me to the blink with untold suffering. But now given time the body has hardened to such repetitive stimulus. Habituation finally kicked in after a year or two from the start. Lucky for me that during the darkest time, I told myself I must give my body time to absorb the new uncomfortable sensation of T ringing. I realize that some notable T veterans took years (some up to 4 to 5 years) to turn around. So why not hang in there, I told myself. Just try to enjoy my life regardless of T. Try finding joy amid the pain (as advocated by the late Darlene Cohen who suffered from acute chronic pain in her early 20 and was bed ridden for a time, who passed away in her 60s by cancer). By learning to be patient and be more positive, by countering distorted thoughts as I learn in CBT, I slowly turn the corner. It takes time. It takes patience. It takes slow acceptance.

Your T is still relatively new and less than a year. Give yourself and your body enough time. We only has one life to live. Why throw it away? T is unpredictable, especially new T. Spikes and setbacks are very common on the way to habituation. Before my 3rd year, there were many ups and downs with setbacks. If you read enough success stories, besides finding some strategies that work, most people have one common ingredient in their success - time. So hang in there. Be fair to yourself and your body. Give it time to help heal things. Your body will catch up to learn to accept your condition better. Try to read up the success story of AnneG, Jade, Claire, Kathi, Neenie etc. These ladies have done well now not because their T has gone or subsided, but because they have changed their attitude towards tinnitus AFTER SOME TIME. They are just human like everyone else. The difference is that they give it time and they find new meaning in their lives after the initial horror. So please hang in there and God bless you.

 

Hi, just curious, what gave you the impression that the Autifony trials are just as inefficient as am101 ?

 

From what I saw of AM 101 the results turned out that AM 101 did not cure/help a lot of the people who took it and Autifony seems to be going the same way about their trials and such and people are expressing doubts about how the medicine will reach full potential in a trial period of only 4 weeks. By the time they finish with these trials my T will be over a year old and therefore not fit to participate in that study. Not that I could even dream of having the money/time to go to the UK.

 

Are you better now Larry? Hope so....please post how you are doing as the hospital was no use to you..

 

Sorry to hear that you are still struggling with your T spike @derpytia, but like @Markku says, we have not yet seen any feedback from anyone involved in the Autifony study. No-one on this forum has reported that they have taken the drug yet and there are not even rumours circulating at this stage (at least none that are based on anything other than pure speculation).

You are right that the trial period of 4 weeks is possibly not long enough to see the full potential of the drug but Autifony obviously think it is long enough to give them some indication of the drug's usefulness (or otherwise). And if the trial is successful, then it won't matter that you don't live in the UK. If the drug works, it will not just be UK-residents who will benefit from it. Try to stay positive and I am hoping that things will get better for you.

 

@derpytia there is a good chance the spike will dissipate in a few days, especially since its a unilateral spike. Or it may reduce in intensity and spread evenly between both ears (if you have bilateral T).
Either way, a spike is still not permanent until at least a month gone by.

 

Earlier this year, I was in contact with one of the senior ENT physicians of the University Hospital of Leipzig for his evaluation of the phase-II results of the AM-101 trial (I have shared with @Markku the follow-up 2-page letter that the doctor sent to my GP afterwards; so this is a fact and not an "Internet-story"). The doctor's opinion was that the results (of AM-101) were "not that good" and that the trial is "only for acute/3-month chronicity of tinnitus" - the implication being that it is unlikely to work for the trial associated with sub-acute tinnitus.

Indeed I have also myself voiced a slight skepticism from time-to-time in the AM-101 thread (due to the lack of "slam-dunk" cases of people getting cured after treatment). However... one of the things that the researchers Team Trobalt is corresponding with have told us is that tinnitus is a heterogeneous condition with several different sub-types. This means that the success rate of a given treatment can vary somewhat (and is also why screening and highly specific inclusion/exclusion criteria is important). But since subjective tinnitus cannot be diagnosed objectively, reliably finding the right candidates can present difficulties (and possibly influence the results of the trials). So this may be one reason why AM-101 did not do so well in the phase-II trial. [Incidently, the topic and importance of screening was also something I specifically discussed with Prof. Jeanmonod in Switzerland].

Another reason why AM-101 may not have performed so well in the phase II results could perhaps be related to the timing of injections (ie. chronicity of the tinnitus patients participating). There are certain physiological processes that take place right after an auditory insult...

...and so perhaps another reason for the disappointing result is related to the timeframe of which AM-101 is effective. And these specific timeframes is what a phase-III trial would aim to shed light on (because the number of participants is somewhat greater than in phase-II allowing for a more focused analysis).

Look at it this way: if the results had been truly mediocre for phase-II, Auris Medical would not even have considered going ahead with phase-III (in my opinion). The costs of running a phase-III trial is... well.. it's expensive! You can read their latest financial summary here (if it interests you):

https://www.sec.gov/Archives/edgar/data/1601936/000119312514253454/d684505df1.htm

So in summary, I still think there is reason to be cautiously optimistic. Hopefully the phase III trial will demonstrate efficacy in certain specific cases of cochlear tinnitus.

I should also mention that there are now therapies being developed by Auris Medical and Otonomy both (presumably) aimed at chronic cochlear tinnitus (AM-102 and OTO-311). As it happens, I will be heading down to see the doctor who was meant to have treated me with off-trial AM-101 back in May. I will be asking him about the component of OTO-311 which has already been used in another trial here in Germany. You can read about AM-102 here:

https://www.tinnitustalk.com/threads/auris-medical-am-102.7183/

This is the Internet. And quite a number of posts in the AUT-63 phase-II thread reflects knowledge written by people who have no relevant insight, medical knowledge, or wish to track down reliable information. I have gone to extra lengths, as I always do, and tracked down reliable information from a leading researcher with insight of the trial. I have shared that insight. I have documented with @Markku who the source is. The verdict is pretty clear: it is too early to draw any conclusions about whether the treatment length is right and/or whether AUT-63 will end up becoming curative in some cases. The researchers don't know - that's why they are running a clinical trial!

I have been in contact with the researcher three times. Most recently, a couple of weeks ago. They are still screening and recruiting participants. The researcher was therefore not willing to even attempt to answer whether certain trialees had seen good results. So don't start to draw conclusions about efficacy.

Inclusion/exclusion criteria will be open for review (for sure and confirmed). And so will the geographical scope, I imagine (in a future phase-III trial). You therefore cannot possibly know what the future will - or will not - bring. To the best of my knowledge, for example, the hearing loss trial (separate from the tinnitus one) of AUT-63 was meant to have taken place in the USA.

attheedgeofscience
31/DEC/2014.

 

Billie, always unbelievable reading your story.
What did you do when anxiety was overwhelming or panic attacks started?
Challenging always with distraction and positive thoughts seems helping, but not always.

 

@billie48

Has your t changed in any way since the onset?
Loudness, pitch or new noises that didn't go away?

 

@derpytia Just checking in with you. I hope you have been able to absorb all the positie support from this thread!! I am so glad you have shared what you are experiencing right now! Sometimes just letting it all out is helpful. I know I had (and probably will occasionally in the future) total meltdowns in my first year with T!! Please seriously consider what has been shared with you here in this thread, especially what @billie48 had to say.

Like I encouraged you at the beginning of this thread, get stabilized! Your thoughts and emotions are running wild because you are so tired and out of whack! I get it! I have (and most of us) been there! So freaking tired , physically, emotionally, psychologically! Depression thrives in those conditions. You are important and worthy and must get yourself evened out!! Again, seek help and support from family, friends, and medical/psychological care to get stabilized. And I know you probably don't want to hear it, but I am wishing you a Happy New Year!! I pray you find peace, rest and relief in 2015. I am confident that you will!!!!

Jeff

 

I had a two year spike that sounded like a clarinet in one ear and a flute in the other. And they were out of tune!! I REALLY abused my ears with one night of super loud music to cause that. I doubt if you'd do something dumb like that. So I'm thinking yours should settle down soon. Hang in there.
Regarding your sanity... I worked in a Psychiatric hospital for over 30 years. We had lots of people with psychosis because of mental illness, drugs and alcohol, but I don't remember any of the patients having tinnitus induced psychosis. But please get your anxiety addressed by a professional.
BTW, what instrument do you play?

 

Derpytia,

you think you're screwed, but there's a good chance you're not. I've been around that corner several times myself. If the tinnitus is so loud you can no longer relax or sleep there is a way to force your brain and nervous system to cool down. I've used it several times myself and even in the deepest despair it makes me power napping while I do it. Then I go to bed and always fall asleep regardless of tinnitus, stress or fear.

The method is a very basic meditation, refined from Yoga. It's hard to get a hung of, but I had to since I suffered from pain many years ago, and since I got tinnitus I kept use it in order to keep going. If you want me to help you out with it, send me a personal message and I'll take myself the time.

When it comes to death there is no reason to rush it. We will all be released by death, eventually.

Hugs.

 

I'll tell you all a tale about a guy named Jeff. When Jeff was a teenager, he dove into a shallow swimming pool and broke his neck. He became quadriplegic and lost nearly all motor function from the neck down. He lost the ability to do even the most basic things that we all take for granted. Forty years later, not only has he survived, he has thrived. He has regained some motor activity in his arms/hands and can drive now. I know that because I drove with him a couple of times. Since he can't use his fingers, he has to put his wrists into these brackets attached to the steering wheel and steer mostly with his elbows. Seeing him drive this way scared the shit out of me the first, but after a few minutes it became clear that he was a vastly superior driver than most full-bodied people on the damn road. Anyway, he drove me to a studio where he and my cousin Timmy were going to record Christmas songs. Yes, Jeff sings and he is pretty damn good at it. He is the most inspiring person I know and he has accomplished so much with so little.

Catastrophic thinking doesn't do anybody any good. Having T is bad enough without having an 'all-or-nothing' outlook on things. Whenever I get all nihilistic and bleak about what the future might hold for me, I remind myself that none of it could be worse than what Jeff has endured and risen above.

 

This is good Vincent ,think were all in need ,share info ,I'm into meditation ,so another arrow to the bow would be great ,I do hope Derpytia ,takes up your offer ,all gain in my view .
I so agree to your last paragraph.

 

@Vincent R

If you wouldn't mind sharing your meditation practice here on the forum that would be great!
Thanks!