How to Cope?

[Danny Boy]

Ok. Ok. I got this horrible tinnitus 3 months ago from an ear infection, however at first it was in one ear and I was managing it better, the volumed lowered....However fast forward now, it's roaring like hell, the other ear now has tinnitus, even though there is no damage in that one...It's really loud in both ears now, to the point where I can hear it over everything...If I put my hands over my ears, it sounds so loud, that even the most tolerable person would go crazy...I still am trying to fight, trying to block it out, but I'm suffering so much, that I don't know how much more I can take? To go to sleep, I need tablets, if I don't, well I won't get any sleep whatsoever and even though the tablets knock me out, I still wake up only a few hours later as the tinnitus is so loud. I honestly don't know how much more I can take of this? I have tried killing myself, by hanging, but I chicken out and by trying to drown myself in the bath, also didn't work. I'm scared because the UK won't let me die, but I am suffering to the point where it's not manageable anymore. I really don't want to die, seriously, I don't...But I just can't cope, I really can't. It's far, far too loud....So loud that I just can't stop thinking of death. I wake up, I'm trying to kill myself, I go to sleep, I try to kill myself. I want this to end so much...I want the suffering to stop. I've tried to seek help NHS just tell me to call the BTA and all they do is nothing...My doctor won't help and nobody is taking me seriously. I also have Hyperacusis which makes the tinnitus go crazy, so can't mask it with a fan or anything. How can I go on, how can I cope? Seriously?

 

[Floyd Mayweather]

Sorry to see that you are suffering. I don't really know what to say but if I were you, I would sign up for those AM-101 trials. I heard you're eligible for those trials if you have had Tinnitus for less than a year. The results seem promising so if I were you I would give it a shot.
Good luck

 

[Danny Boy]

I have already signed up for the trial and am due to have the injections on Tuesday, but unfortunately they will only inject one ear, the ear that was infected.

 

[carol kane]

OK Danny, firstly you've gone in to panic mode, i did too, death is the only way out for you at the moment, i did that too, i've got so many pills that i can put a stop to this right now if i so choose... comforts me knowing that !! you are only 3 months in, boy this is the toughest time you will have with T, you'll probably still feel like this in another 3 i did too, but in time you'll start to adjust because the day's will come when T is lower, and those days are more manageable... then the day's will come when it's louder again, and you'll sink back down in to those thoughts again. I'm sorry to say but you have a long way to go on this awful journey, i'll be 1 year in on the 4th of November, and i can assure you as much as i hate this disorder i'm not as desperate as i was in the beginning. I still can't mask my T only the shower does that, but i live each day to the best of my ability, i wear ear plugs if i'm unhappy with the surrounding sound, i don't want to risk it getting even louder ... i no longer mention it to friends and family as they're sick hearing about it, so for now i'll just keep soldiering on, and you will too !!! please allow yourself some time, and talk to the people on this board, they have given me hope and help when i really just wanted to die ... stay strong and think about how many people in your life would be forever damaged mentally if you ever went through with the S word, things WILL improve, but you have to be patient, i take meds now because of this T i think you ask your Doctor for some anti depressants, and some anti anxiety meds, this has played a big part of helping me accept this damn torture of a disorder ... good luck to you, and please, please, give it some time xx

 

[Danny Boy]

OK Danny, firstly you've gone in to panic mode, i did too, death is the only way out for you at the moment, i did that too, i've got so many pills that i can put a stop to this right now if i so choose... comforts me knowing that !! you are only 3 months in, boy this is the toughest time you will have with T, you'll probably still feel like this in another 3 i did too, but in time you'll start to adjust because the day's will come when T is lower, and those days are more manageable... then the day's will come when it's louder again, and you'll sink back down in to those thoughts again. I'm sorry to say but you have a long way to go on this awful journey, i'll be 1 year in on the 4th of November, and i can assure you as much as i hate this disorder i'm not as desperate as i was in the beginning. I still can't mask my T only the shower does that, but i live each day to the best of my ability, i wear ear plugs if i'm unhappy with the surrounding sound, i don't want to risk it getting even louder ... i no longer mention it to friends and family as they're sick hearing about it, so for now i'll just keep soldiering on, and you will too !!! please allow yourself some time, and talk to the people on this board, they have given me hope and help when i really just wanted to die ... stay strong and think about how many people in your life would be forever damaged mentally if you ever went through with the S word, things WILL improve, but you have to be patient, i take meds now because of this T i think you ask your Doctor for some anti depressants, and some anti anxiety meds, this has played a big part of helping me accept this damn torture of a disorder ... good luck to you, and please, please, give it some time xx

Do you have it in both ears too? When I had it in one, I was adjusting and everything was getting better, I could sleep without tablets and was starting to enjoy life again...Then it starts in the other ear...And destroys me totally, it's not fair at all. Why on earth does humanity allow this condition to exist? We invented the internet, so why on earth can't we cure this? It baffles me, to the point of despair. Well, I guess I'll have to suffer and struggle until I totally get fed up and do the s..I wish doctors and people would listen...And I also wish there was more awareness about tinnitus, as it's disgusting there is no warnings in place...If someone would've told me that I could get this from ear infections, I would've made sure I wore ear plugs in the bath to prevent this from happening.

 

[carol kane]

Yes i have it in both ears, some days i feel like you, that i just can't do this anymore, and i agree with what you said why can't this condition be sorted out?? I hope and pray for a cure !!! just take care of yourself, and don't let the T bully beat you.

 

[Danny Boy]

Yes i have it in both ears, some days i feel like you, that i just can't do this anymore, and i agree with what you said why can't this condition be sorted out?? I hope and pray for a cure !!! just take care of yourself, and don't let the T bully beat you.

I know there will be a cure, in the form of autifony and their new potassium modulator...However that's only in trials, so it's the waiting game now. Still there is hope, just hope I can manage till then. I reckon we should pull loads of people with tinnitus together and protest outside parliament. Us T sufferers need to rise and to speak out about this condition pressure the government to help fund and fast track an actual cure. I don't know why we haven't yet. Even if it's a small amount of people to start with, more people would come, as they will see it on the news and other media. This needs to be massive!

 

[Martin69]

Danny. Carol is right. It is so damn hard for you at the moment. You want to switch it off, but you cannot. Most here were where you are. I have loud, high-pitched T in my head which I can hear even in the shower. It will get better. If the sound does not lower, you will better cope with it. But it takes time, trust me.

For the moment, get some meds like ADs (Remeron is usually given to T patients in Germany). If you cannot handle it, try getting some benzodiazepine like Tavor (lorazepam). But take only when nothing else helps, because after a while they become addictive.

If your T is high-pitched, download cricket sounds onto your mobile. Your T will mix up with the crickets that you cannot hear it.

T starts oftentimes in one ear, but goes into both or into the head. This is because the sound is made by the brain and not the ears. But you hear it in the ears. It doesn't matter if you hear it in one or both ears or in the head. T is the same. Your stress at the moment makes the T louder. You concentrate like crazy on this - which is normal.

There are promising meds which could cure T. So don't do anything wrong. Killing yourself is no solution. We were all there, but after a while we can cope better. And you will do, too.

Prayers, Martin

 

[Danny Boy]

Danny. Carol is right. It is so damn hard for you at the moment. You want to switch it off, but you cannot. Most here were where you are. I have loud, high-pitched T in my head which I can hear even in the shower. It will get better. If the sound does not lower, you will better cope with it. But it takes time, trust me.

For the moment, get some meds like ADs (Remeron is usually given to T patients in Germany). If you cannot handle it, try getting some benzodiazepine like Tavor (lorazepam). But take only when nothing else helps, because after a while they become addictive.

If your T is high-pitched, download cricket sounds onto your mobile. Your T will mix up with the crickets that you cannot hear it.

T starts oftentimes in one ear, but goes into both or into the head. This is because the sound is made by the brain and not the ears. But you hear it in the ears. It doesn't matter if you hear it in one or both ears or in the head. T is the same. Your stress at the moment makes the T louder. You concentrate like crazy on this - which is normal.

There are promising meds which could cure T. So don't do anything wrong. Killing yourself is no solution. We were all there, but after a while we can cope better. And you will do, too.

Prayers, Martin

I will try and stay strong and thank the lord for this website and the support of the members....Still, we how underfunded tinnitus research is, I still think we should pull the millions who suffer and get them to protest. It's time something was done. People in the military come back from fighting for their country to suffer with this horrible, horrible condition which affects their life and makes it horrid. Something has to be done, we all need to stand up.

 

[rtwombly]

Danny, you should still try to get in for the AM-101 trial. Your tinnitus is in your brain, but it's all connected. Ears are just sticky-out bits of your brain, and their wiring criss-crosses all over. I have mostly right-ear sounds...which means cells on the left side of my brain are hyperactive! Crazy.

Point is, you won't know if AM-101 will work for you until you try. Just because you have tinnitus is both ears doesn't mean you actually have anything wrong with both ears. It may just be cross-talks where the nerves come together.

Also, Remeron. Martin69 recommended it by its brand name, I told you about it elsewhere as mirtazapine. Good stuff when you can't sleep.

 

[dan]

Just because you have tinnitus is both ears doesn't mean you actually have anything wrong with both ears.

Excellent point rtwombly. In fact the results of a quantitative EEG of my brain showed that only my right auditory cortex was hyperactive, despite that I hear tinnitus is both ears very loudly and equally!

 

[billie48]

Hang in there Danny. Sorry that you are suffering so much. But that is common for all new T sufferers. When it first hit me a few years ago, I was overwhelmed by its ultra high pitch scream too. It is a dog whistle packed with so much energy like a laser beam in a night sky. Once I played a sound clip matching my T to my family and every one of them screamed, covered their ears and ran away as fast as they could. So I don't know if my T is among the worst but it is not something a normal person can take. As if T was not enough suffering, severe hyperacusis soon hit to join in the horror show. It turned all normal sounds into glassy, piercingly hurtful sensation, as it the ears got drilled by normal sounds all day. I had to wear ear plugs all the time, but the plugs cut off all outside masking sounds, making the harsh T shrill so dominant and unbearable. I had to choose the lesser of the two evils but there were no lesser choice. T & H also opened the flood gate of hell of relentless anxiety and panic attacks with their own set of horrible symptoms. I tell ya, it was the darkest time of my life then, and I didn't know how to go forward, thinking that the rest of my life would be filled with such sufferings. The big S word was dangling in front of this tired and stressed out mind as it saw no way out. I never thought I would recover and have a happy life again. How do you live with something so unlivable?

But here I am today back to living an absolutely enjoyable and productive life, and I am not alone. Many members recovered after some time, and after getting some strategies or treatments which work for them. You should read up the success stories to know that you are not alone, and your condition, though tough for you now, is not unique either. You can learn some insights from those who have recovered, and you can find hope that you will be just fine in time. Take care and don't give up hope.

 

[Telis]

Ok. Ok. I got this horrible tinnitus 3 months ago from an ear infection, however at first it was in one ear and I was managing it better, the volumed lowered....However fast forward now, it's roaring like hell, the other ear now has tinnitus, even though there is no damage in that one...It's really loud in both ears now, to the point where I can hear it over everything...If I put my hands over my ears, it sounds so loud, that even the most tolerable person would go crazy...I still am trying to fight, trying to block it out, but I'm suffering so much, that I don't know how much more I can take? To go to sleep, I need tablets, if I don't, well I won't get any sleep whatsoever and even though the tablets knock me out, I still wake up only a few hours later as the tinnitus is so loud. I honestly don't know how much more I can take of this? I have tried killing myself, by hanging, but I chicken out and by trying to drown myself in the bath, also didn't work. I'm scared because the UK won't let me die, but I am suffering to the point where it's not manageable anymore. I really don't want to die, seriously, I don't...But I just can't cope, I really can't. It's far, far too loud....So loud that I just can't stop thinking of death. I wake up, I'm trying to kill myself, I go to sleep, I try to kill myself. I want this to end so much...I want the suffering to stop. I've tried to seek help NHS just tell me to call the BTA and all they do is nothing...My doctor won't help and nobody is taking me seriously. I also have Hyperacusis which makes the tinnitus go crazy, so can't mask it with a fan or anything. How can I go on, how can I cope? Seriously?

Hey Danny,

You will learn to sleep at some point. I look at sleep as a escape these days, it is truly one of the things I look forward to every day. I am in the same boat as you, very severe loud T (I'm actually crippled by it still to this day). For the first few months I didn't sleep AT ALL for days at a time. This persisted for about 5 months. Looking back, part of not sleeping for me was anxiety, not only from the sound, but the thought of how I would escape this terrible noise. My anxiety was driven by the fact that I would have to die soon, and at my own hands no less. This is a heavy thought for anyone to process and not be absolutely terrified. Relaxing and falling asleep with this type of mindset is tough....not a natural thought. All of a sudden you are thinking death, and how you can achieve this, very very unsettling. My suggestion, drop the thought of killing yourself. How? Tell yourself you will give it three years (or some good amount of time) before you revisit this thought, tell yourself no matter what happens, no matter how much you suffer, suicide will not be a option for a set amount of time. Why at set amount of time? It's less intimidating and more realistic than to expect yourself to drop this thought all once. I personally can't convince myself I won't do it (not yet anyway) but I made a commitment that I would give it time, this takes one big fear away, this is one less thing to worry about for now. Tinnitus is bad enough, thinking about murdering yourself...pretty damn bad too!!! Anyone would loose sleep over this alone, take it out of the equation for now....one less thing to contribute to anxiety.

You are early in, your T my improve ten fould for all you know. Not only this, your reaction my improve just as much. Taking a step like suicide, especially this early in, could be a terrible mistake. I know it's hard, but give yourself some time, see if things improve, maybe you will find a treatment that works for you, maybe even a cure! You owe that to yourself before you take such a drastic step.

Hope that helps a bit man.

Telis

 

[Leah]

Good advice, from these wise wonderful people.
Glad you found this site.
Hugs

 

[RicoS]

My T was also very loud the first view months and I also had suicide thoughts. Now 16 months later.....it has reduced a lot. I will not think it will go away because when I close my ears it's just as loud as ever, but my brain learns to ignore it more and more. It's indeed much to early to say that you want to end your life... some people their T went almost away completely after 5 years.

 

[Danny Boy]

Hey, everyone! Thanks for the great advice...I had a mental breakdown today and tried to hang myself, luckily I failed...However, I now have a intervention team coming round. I have booked an appointment with my gp again with proof that trobalt works, I have a document which proves it is safe and is a treatment for tinnitus, so hopefully that is enough to allow them to reconsider.

 

[Telis]

Hey, everyone! Thanks for the great advice...I had a mental breakdown today and tried to hang myself, luckily I failed...However, I now have a intervention team coming round. I have booked an appointment with my gp again with proof that trobalt works, I have a document which proves it is safe and is a treatment for tinnitus, so hopefully that is enough to allow them to reconsider.

If you feel that you are lucky that you failed, quit trying, obviously you don't want to die. One day you won't be so lucky, you will dead, or you will have permanent brain damage to deal with on top of your T.

 

[Nick the Swede]

I think that suicide toughts are very common among T sufferers, but that´s not the way to go. I had them myself during the early days but it was not an option.
Don´t put all your money on the Trobalt horse, you will only get disssapointed if they refuse to prescribe it.
Try to think that you have the time on your side and there is no need to panic, lots of medcial stuff is in the pipelines and try to take it easy.
Try to sleep with some kind of background sound, like rain or something like that. Lots of good apps, Relax melodies, White noise sleep miracle to mention a few. I know it sounds stupid but having a sound in the bedroom turned the sleep thing around for me. I was more or less sleepless for the first months.

To let off some steam force yourself to do some exercise, push ups or some running. It really helps a lot, i was running like Forrest Gump when my T started and it really helped me put the anxiety under control.

 

[RicoS]

If we gave you great advice why still try to hang yourself You should follow our advice and not do it !!!
I had T very very bad...could not hear a word people were saying and the first view days when I walked in our garden I just passed out because of anxiety and stress......I was thinking of jumping before a train....but ...what if.... .,...what if there is a cure in the future.....what if it is getting less. You just got T man....after that period last year for me I was still feeling I was living in hell. Give your brain time to adjust.
One day you will not fail your attempt and than you have nothing left....and than you will never know if there is a cure or not in the near future. The only one who can get you out of this is yourself......remember that.....don't expect to much from others you have to get in line with yourself.
We try to support you as much as we can during our own struggle but you need some fighting spirit to go on and not take the easy way out.
Stay in there m8!

 

[Kopesy]

Hey Danny, these people are absolutely spot on! Know exactly what you're going through, the idea of this permanently scared the hell out of me to the point of absolute desperation! What doesn't help is the GPs here in the UK, all you get is "learn to live with it, blah, blah" but it's becoming an increasing issue & thus a lot of advancements in Tinnitus research is happening right now, now this is going to sound very weird to say but we're luckier than ever to have this now! Try to stay positive in what ever way you can, life is worth so much & more. It will get better if you let it. Keep in touch.

 

[Danny Boy]

Hey Danny, these people are absolutely spot on! Know exactly what you're going through, the idea of this permanently scared the hell out of me to the point of absolute desperation! What doesn't help is the GPs here in the UK, all you get is "learn to live with it, blah, blah" but it's becoming an increasing issue & thus a lot of advancements in Tinnitus research is happening right now, now this is going to sound very weird to say but we're luckier than ever to have this now! Try to stay positive in what ever way you can, life is worth so much & more. It will get better if you let it. Keep in touch.

I'm hoping treatments will come out within the next 5 years, because getting trobalt is impossible...

 

[Kopesy]

Yeah I read about this drug, some sort of epilepsy suppressor that has positive results on T. Did your GP get back to you on the possibility of prescribing this to you?

 

[Danny Boy]

They just wrote a letter to the ENT's at the hospital asking for advice about it. I did tell my doctor they wouldn't have a clue..

 

[Jeff M.]

Dude, SERIOUSLY LISTEN to everyone here trying to advise and comfort you!!! I back up what everyone is telling you man!!! It IS pure hell early on!! Absolutely! I wanted to end it too! Soooo f-ing glad I didn't!!! Get stabilized, get help, get support and by all means don't give in or up!! Re-read the advice above bro and be encouraged. Stay connected here on TT. The folks here on TT pretty much saved my life!!

Best to you bro!!

Jeff

 

[Kopesy]

Man, I feel you, It's like everyone follows a script regardless of what research or input you have. Some of the things I suggested to my GP just got blank looks & shrugs -_- Good thing is though that when I got booked into the ENT when mine started about a year back, they understood tinnitus very well, to the point where I was shocked! I didn't expect to be given any good advise at all but they were really helpful. Lets hope someone there understands. You managed to get yourself an appointment with the ENT yet?

 

[carol kane]

@ Kopsey, i live very near Northampton, although i'm in Florida at the moment, i've never met anyone in person with T, apart from an Army friend of mine, who quite frankly doesn't give a damn ... how i long to talk about it with someone who has a teeny, weeny, clue of what i'm talking about!!!

 

[Kopesy]

@ Carol, tell me about it -_- It's difficult explaining it to someone without simply because the way you make it sound doesn't sound so bad "oh I have ringing in the ear(s)" & although some people 'seem' to get it, you can't help thinking that they kind of disregard it because it sounds so petty on paper, when all of us here know it's definitely not!

 

[Larry OT]

Danny,
Everyone here supports you and we know what its like. As I am a father of two sons, I am certain that someone in your family and friends cares and loves you deeply and wants you to grow and be successful in this journey to heal. I am in the same process of struggling with my tinnitus and have gotten professional help and I am slowly doing better with their help, my family and friends and the great people here.
Please seek any psychological assistance you can as soon as possible, and keep your family and friends close.
Hang in there and keep the faith that you will improve. It takes time and you will get there.
from,
Larry (severe tinnitus, father of two sons and I am gaining strength and courage in every way).

 

[billie48]

I like what Telis suggested, giving yourself some time to see how things progress before you consider the doing the unthinkable. During my darkest days of suffering, when every day I was overwhelmed mentally and physically by all manner of sufferings from tinnitus, hyperacusis, relentless anxiety and panic attacks, the idea of ending it all was tempting. But doing that would mean I would pass my suffering to my love ones and the rest of their lives would be forever tainted with sorrow and grief. I wouldn't want to pass my pain to them. As a Christian, I take the reality of after-life very seriously. Does suicide really end the sufferings? I decided to check out youtube on people who had near-death experience from suicides and their hellish experiences were not something I want to risk. For me, I would rather endure a temporary hell than risking anything, especially this temporary hell can be as short as a year or two.

Particularly after joining the support forums, I found that so many people get better after some time with tinnitus. It is liveable and bearable after some time, after some treatments, with meds and masking, etc. You actually hear from some of them even in this thread. So why risk it all by killing yourself if there is a high chance you can get better in a year or two ? I decided to give myself 3-5 years to see how things progress, like Telis is doing. For goodness sake, we only get to live this life once. I decided I am going to fight this at least for a few years to see if I can improve like others. Like Telis posted, once I chose this path, my anxiety for imminent death by my own hand just vanished, and I felt so much better. The rest is history. In 1 year, I began to see improvement. In 2 years, my life was back to fun again and T became less and less of an issue. By the 3rd year, I wrote my success story, hopefully to persuade others not to give up on life so easily.

I am someone who suffered anxiety and panic disorder for decades prior to T & H. That is why I had relentless anxiety & panic attacks on auto mode triggered by T & H. These attack symptoms are so horrible sensation that they can make people home bound or not willing to get on a plane for life. Royce White, a NBA rookie with 260 lbs frame, gave up his potential multi-million career because he can't stand panic attacks on plane. Well he could choose to avoid panic attacks. Yet my T & H gave me panic attacks daily without choice, sometimes hourly, as if they are on auto mode whenever T screamed & H pierced. I had thought no way any one can survive this but I somehow survive, and I am not alone. The success stories are full of these people. If a panic prone person like me can fight and survive my ultra high pitch dog whistle T (and severe H too), have confidence that you can too. But you need to be patient, to seek and follow the wise advice of others, and above all, to give it time. Your body needs time to get used from the current traumatic phase of T suffering.

 

[Kathi]

@Danny Boy ---Please hang in there until recovery starts. When I first came here it was because I googled "I want to kill myself because of Tinnitus" and this site came up. The members took me under their wing. I then got some sleep meds--I don't think I'd slept more than 2-3 hours in a month--and some anti-anxiety meds. I am now coming up on a year and I'm on the road to habituation. I still have bad days a few times a week but it's nothing like almost a year ago when everyday was a bad day--and I don't let my tinnitus stop me anymore. I have times when I'm forgetting it now--even when it's a really loud day. My T cycles so it's harder to habituate but I'm getting there. Listen to all these wonderful members. Suicide is a permanent solution to a temporary problem. Like @Telis said, give some time.