Please help me!

Hi, my name is Nina. I've had unilateral tinnitus for just over 3 months now. It's high pitched, its extremely distressing, and unable to be masked out. I hear it all the time. I've read millions of tinnitus journal articles, websites, books, everything. I've seen an Audiologist, and ENT surgeon. Both said to live with it and to go on with life as if it were not there. How is that possible when I hear it loudly all day, all night? How can I ignore it when it's right there all the time. I'm an extremely anxious person so the paranoia isn't helping things. Also, whenever I talk I hear, and feel, a clicking sound in the ear that has the tinnitus. I was told it's a tic, and it's unrelated to the tinnitus. I do not agree. I want someone to tell me that it will go away. I want someone to tell me I can get my old life back. I want someone to help me please! Thank you!

 

Hello Nina
I assume they've told you that it's permanent and you should just Deal with it.
At this point, at any point, not even specialists know whether it is permanent or not. Any specialist who knows how it is having tinnitus, would know you can't ignore it, key is accepting it/becoming 'friends' with it.
I'm anxious to an extreme degree myself, and after t onset something with hearing my own voice has changed,
and it Is Horrible. One thing is t, another is the extra dimension of the sound when speaking. When having a conversation it can get extremely hard to focus on the actual conversation as you're speaking, but in some I've managed to maintain my focus, with success of ignoring the change of your own voice.
My voice hasn't changed, but something in my perception of it has But! This has happened before. It used to be more prevalent in waves once in a while, but now it's there constantly. Point being for me this resonance of my own voice has come and gone, meaning yours will probably be able to too. A most likely is what I can provide, trying to accept it is the quickest way for habituation/putting less stress on your body by thinking about it, will give you more ressources hence better odds of healing Ah yeah, and just because a specialist tell you something, it doesn't mean it's correct. Listen to me on the other hand

 

Hey Nina, I am going through the exact same thing right now ( 3 weeks in) i´m devastated about this ringing and hissing that i get all day every day, i wont let myself accept that this has happened to me, i long for the old me back.
I wont go out, and i don´t want to see anyone! having said that i´m not helping myself, i need to start adjusting to this new thing that has come into my life, for now it´s here and i can´t do anything about it. As of tomorrow i don´t care how hard it´s going to be... i´m going out into the big wide world, if i cry then i cry, i´ll take plenty of tissues with me, it has to be done i will not let this thing rule my life anymore, i´m very scared at the thought of it,but trust me i´m going out and i´m staying out all day i will not let myself run home and lock the door no way.
So i hope you will push yourself to try and come to terms with this terrible thing called Tinnitus, who knows it could just go away as suddenly as it came, or at least get lower that´s what i´m focusing on right now!! my attitude has changed only since today, yesterday i was definitely going to top myself, but not today, today i say ok i can`t control you but you sure as hell wont be controlling me!!!!! I wish you well, and hope that this has helped
I´m suffering just like you, but i´m going to at least try to overcome my fear, it wont be easy but i´m determined that my life wont be spoiled by this, interrupted yes,but spoiled NO!!!!! Good luck and listen to the great advice you get from this forum.

 

Nina - give your self some time ..it took month for my T to settle down ..but it did .how did you get T any way ?

 

Hi Neenie,

I too have a clicking in my T ear. Do you know the cause of your T?

 

Thank you for sharing that info about the clicking sounds, Karen. I thought the clicking was the misfiring of damaged neurons (heard something about that as a possibility in a video I watch). Glad to know there's something else it could be.

 

Thank you everyone who commented! I've never been on a support forum before so I'm not really sure how to post and reply and simple things like that. I've also been sitting at home, weeping, thinking of ways to end it all, but being to scared to do anything because what if the next day things are better? They never are though. I try to stay positive, but it is exhausting. I think about my tinnitus all day long. Literally. I read all the stuff about the Limbic System playing a large part in the perception of loudness, and to me....that is a nice reason/explanation...but I dont buy it. I dont think the limbic system has anything to do with it. It's a loud noise. High frequency. That's it. Other people dont understand. My family is getting tired of me talking about my tinnitus 24hrs a day 7 days a week. But even if I try to moderate what I say/tell other people it doesnt change the fact that I myself still am thinking of it all the time. I've read that you'te meant to do all the things you would have normally dont on that day if you didnt have tinnitus, but I do them, but just go through the motions while I spend that time still thinking of my tinnitus. The only good news is that I got into Masters in Clinical Audiology! Yes!! If no-one else can fix this, then I am going to study hard and research tinnitus and find something out there that is better than "just deal with it"!!!!!!!!!!!!!!

 

Neenie, I'm sorry you are struggling. I was told the same thing basically. I think many if us have heard that. I found an app that makes the sounds that T makes. I made my husband listen to it, my daughter and my nurse practitioner. BOOM! Like magic, the got it. Granted they don't hear it all day every day but when they heard what I hear say in and day out, they all said they couldn't stand it. It's not easy to adjust to it, but the stress I can assure you is not helpful. If you can find anything, like masking by showering or some type of music you can play, or sound apps with rain, birds, rustling leaves that gives you a few moments where your not bombarded with the T. It can give you moments to take a breath and find peace. It will take time. Ask your family and friends to be patient with you, you need support. You will find plenty here too. Hang in there, you can get to a place of dealing with it, be patient with yourself too. This is no small thing to deal with. I cried too plenty of times, don't feel bad about that. Hugs to you!

 

It may not be such a good idea to spend your time researching and studying tinnitus as this simply focuses your attention on something your brain has to learn to ignore or, at least, suppress. By all means educate yourself what tinnitus is but do not waste your time looking for a miracle cure - it does not exist. If you are anxious and distressed by your tinnitus seek professional help and support from a psychologist and a sympathetic GP or psychiatrist. Make sure you have something to treat your anxiety and feelings of panic when they occur. Make sure you get to sleep and take whatever medications work for you - discuss this with your doctors. It will get easier over time. The first and most difficult step is grieving over the 'loss' of your pre-tinnitus life. Your tinnitus may well not be permanent and may improve over time but you have to learn the skills you will need to cope with it and adjust accordingly. Tinnitus is not a fatal or terminal illness. It is a symptom of some disorder that may yet resolve or require treatment. The longer you use sound-masking and sound-enrichment techniques, the easier it will be for your brain to learn to ignore the tinnitus - as it will in time. I treat patients with tinnitus and developed tinnitus myself some months ago. I also treat patients who have had strokes and other brain trauma and have become unable to walk or blind or deaf - trust me, that is much worse than tinnitus. It is the 'newness' of the tinnitus that makes you feel as you do but remember "it is only tinnitus" and you will beat it.

 

I use an APP called Relax melodies (premium), it's cheap and they do offer free ones too. I use the oriental one as it has birds and flutes and lots if water sounds, crickets etc. It allows you to use a few sounds at a time. Like rain, birds, rustling leaves. I don't enjoy the white noise, Brown noise or pink noise and such, as much as I do natural sounds and I don't particularly enjoy ear buds anymore either so I just play it through the iPod or docking station and just focus on the sounds that are calming and soothing to me. There are other relax melodies APPS you may find more suited for you. You never want your masking to be way over your T, it should match your sound or a little lower.

 

Neenie - hang in there ..you will be ok one day plus as one had mentioned we
Might have medical break through in next few years ..you can go through my thread " how loud is your tinnitus "..one of the point was to find out how loud is t generally for most people..
Every one started out with v v loud volume but it does subside over the time .
How did you get T?loud noise ?

 

Hi again. Thank you everyone who has posted. I appreciate the support and understanding as I find I simply can not get this in the real world. I too have played a mp3 file of how it sounds to my family and my Mum said "oh, that's not so bad", and I was devastated. Really? That's the response you're going to give me?! I dont know how I got Tinnitus. I have always been very conscious of healthy hearing. It was definitely not caused by noise exposure. It was not an ear infection. It was not a car accident. It was nothing. I was watching TV at a normal level and bang, it was there. With me all the time since. I cant sleep. I take sleeping tablets. I'm depressed. I take 3 different antidepressants. I can't eat. I'm too stressed. I can't do anything. I've gotten into Masters and I'm worried that I won't be able to sit through the lectures without going crazy. I want a magic pill that I know does not exist. I want it to get a little better each day. It does not. I want to enjoy other things in my day. I can not. I wasn't that happy before Tinnitus but now I long for those days. I should have been more appreciative back then. A lot of people have said to me "this isn't cancer, there's many worse things that can happen to you". This I realise. But I feel that for each person whatever they are dealing with right now, right here, IS the worst thing to happen. Please someone tell me it's going to be ok

 

Sorry to hear about your troubles, but things will definitely get better! Just out of curiosity - why are you on 3 different anti-depressents and which ones are they?

 

I'm on 200mg Amitripyline, 50mg Agomelatine, 15 mg Mirtazipine (antidepressants that are sedating), pericyazine (anti-psychotic which is sedating ), Zolopidem 20mg (sleeping tablets), Triazolam (sleeping tablet). It's a lot. I realise. But all of it is just to help me sleep. I can't sleep. At all. And all the medication I take is purely for the sedating effects. On it I sleep 2-3hrs. Without it I sleep 0hrs. I hope things will get better. It's just that it hasn't improved in the 3 months I've had it and I'm terrified it will stay this bad forever.

 

Were you on these before the onset of your tinnitus?

I'm no expert and I know nothing about your history, so the advice I'm giving is just my opinion, but those are a LOT of meds to be taking just to get to sleep. I can definitely understand how frustrating it is to get a good nights sleep, have been on zolpidem for years myself but those are some very heavy duty medications to be taking all at once, especially mixing multiple anti-depressants, anti-psychotics and CNS hypnotics. You need to wary that some of these medications can cause all sorts of side effects, including tinnitus. You also need to be really careful about developing dependencies on these medicines. If possible, I would work with your doctor on trying to eliminating the meds you don't need and trying to find a way to simplify your regime - you might even find your tinnitus beginning to improve once you remove some of the meds. But again, this is all just opinion.

Hope you start to feel better soon!

 

I can only totally agree on what yonkapin says. It seems too much medication and all mixed together no wonder you are not feeling good. Probably they also make your tinnitus worse all together. I wonder why a doctor would prescribe all of them... especially as they are very addictive. So please go and see your doctor and try to talk to him about this issue.

 

Hi Neenie, reading your post brought it all back to me, how bad it was at the beginning. I was suicidal for quite some time and it was only the effect it would have on my daughters that stopped me.
It WILL get better over time. You say nothing caused it but you may be going through a stressful time with your studies and there may be things from way back that caused you anxiety or you just may be an anxious person.
Look at the TRT (tinnitus retraining therapy) website and listen to the audio on counseling, it explains how the limbic system is involved. I know at the moment you are just thinking that it's loud and frightening and that's it, but when you understand how it all works it really helps. I know it is SO very difficult not to react to it but try to not get distressed for 1 minute, then gradually increase this. Some people can only do this for a few seconds at a time and that's fine......just do what you can. By doing that, you are training your subconcious to believe that the sound is NOT a threat and it will start to block it. When you first go into a room with a loud ticking clock, you are very aware but your limbic system knows it is not a threat so it blocks the sound so you don't actually hear it. This is the aim of TRT. By gradually NOT reacting to the sound, your subcon. will block it so at first the sound appears quieter and the less you react to it the quieter it gets. Don't spend hours looking for a 'cure', the cure is in your own reaction. I'm not being glib when I say that because I have been on drugs, packed up a much loved job, stayed at home crying when the rest of my family went on holiday and more than once, planned my own death. So I know how you feel. I saw countless medical people (all a total waste of time) and after reading probably 98% of everything written about it I am now sure that tinnitus has very little if anything to do with your ears but a lot to do with your personality, levels of stress, childhood etc. You are just hearing perfectly normal sounds in your own brain/nerves of hearing/blood flow etc that have always been there but are now amplified due to your levels of stress and/or anxiety.

I have a friend who often said many years ago, how 'noisy' silence was. I didn't understand her because my silence was silent! She says she sometimes finds it hard to get to sleep because of all the wooshing/clicking/pulsing sounds in her head, yet she doesn't think for a minute that she has tinnitus and feels sorry for me because I do! I'm sure hers is worse than mine (because most of the time mine is just 'there' but not a problem at all) and I will never tell her she's got tinnitus because it may then become a problem. She thinks it is normal so most of the time is completely unaware.

You will be OK. Be kind to yourself and ignore all the doom and gloom people. You'll be a much stronger person at the end. I wish you well.

 

Neenie - that's lot of meds..totally not right..I don't know who gave you those meds.i am in to healthcare and I know about meds ..it's insane. !
No matter what you don't need those medications ..not that many .
Please just know it WILL get better but stop those meds !( speak to your doctor first )..
I am sure your T is very loud and masking doesn't work but try masking it lil bit..exercise in the morning so ur tired at night so u can sleep .
I wonder what kinda doctor will give those meds to you .

 

I agree that the meds you are taking are probably not a good combination. It sounds like the prescribing doctor has reacted to your distress by 'desperate' prescribing. I would advise you get a referral to a psychiatrist and if this is a psychiatrist who has prescribed all these, then I would ask for a 2nd opinion.

 

I could agree but only to a certain degree. You see, I don't believe a T cure is a miracle. The reason so many people go around calling any cure for T a miracle is that GPs and ENTs are MAKING it feel like it demands a miraculous remedy of some sort. They are so narrow minded. They don't have a clue about T but they are sure as hell when they describe the hopeless aspect of it all, the outlook is always worse than terrible - in other words totally incurable. How do they know that? Just because THEY have zero knowledge on T they start spreading the "good news" of total incurable conditions. It makes me sick.

I think its important that we as T sufferers do pursuit treatment methods and possible cures and its very important to "shake the tree". I do this myself and ENTs hate it, cause every now and again I find material that is proving I'm right and they're wrong. It's important to find answers, and if you don't look you will never find. Things that general practitioners never would have found cause they really don't care. An old saying has made sense to me in my life and that is "never accept a no from a person that doesn't have the authority to say yes." ENT's and GPs wouldn't know a cure for T if it came up and bit them in the ass, that's the honest truth about that.

So again, WE need to make sure that the medical world knows about us. We need to keep raising questions, reading doctoral reports, new science and always strive for answers. To just lay down and accept the death sentence from ignorant "doctors" is not what I call constructive behavior. Thanks to my own persistence I know more about hyperacusis now than I would ever know if I actually accepted what the ENTs I've been to told me, they basically fed me nonsense. I know that now because I educated myself and I approached my questions with initiative. I just had a session with my local GP, he's an alright guy and quite young. He actually thanked me for informing him on H and how H interacts with T. He's rather unique cause 9 of 10 docs would hate patients to know stuff. It just doesn't fit their world view.

So, as much as I agree with you that it's not constructive to monitor the T too much or "listen for trouble", I really do think its of utmost importance to believe in what you refer to as the miracle, cause as I said, I don't think it needs to be a miracle. All we need is countries to contribute financially to T research so that it's possible to chase a cure on the same level as they did with AIDS. In 1985 everyone with the HIV virus was told to lay down and accept death. Today most HIV positives live as long as anyone without the virus. Why? Because someone believed in making "miracles" come alive. All it took was funds, focus and will. T is NOT incurable. It's just insanely overlooked and not cared for! And it doesn't change unless WE tell the world to wake up. Start with your own ENT. Mak'em know that you care about answers. That you read, study and follow science. By accepting nonsense you are not making progress.

 

I agree with per.only reason we don't have cure because not enough research has been done .i know one day we will have cure ..I don't know how soon one say will come though ..could be years ..till then we can't stop our life and wait for the cure because there is chance it might not be in our life time .

 

your story describes me perfectly - i do not know how i can make it from one day to the next - i have tried masking with restful rain and mixing it with Enya, at the same time on a boat load of meds that would make most people turn into a zombie. every day is a struggle for me but the end of the day i managed to go on, so a small victory every day. i try to stay positive that gradually music therapy and restful rain CD will eventually help my limbic system turn it down, but i suffered a continuous series of noise events, and each event would set me back more and more - i make 2 steps forward, and then 3 steps backward. sometimes i wish i was just a dog and they could easily put me to sleep, but being a person is different, we have a spot in society and expectations etc., and our family would be worse off without us, so i just somehow cling to the hope that i will gradually get better. it is real tough, i too am going through a very rough patch. but 3 months ago i was thinking i would be in a pine box very soon, and 3 months later i'm still standing, so i'm rambling on here, but i agree with you it is very tough to be a human and suffer these kinds of illnesses that no one could have imagined when we were just small kids and everything was o.k.

 

Thanks all. I also feel that we need to control our own destiny. I have tinnitus in my left ear. I hear clicking noises that are audible to people nearby whenever I speak, also in my left ear. The ENT told me they were not related. This I do not believe, as they both happened at the same time. My tinnitus has not gotten even a little bit better yet and it's been over 3 months. Meanwhile I am now going back to uni to do my Masters in Clinical Audiology and I will find a way out. Just because Tinnitus isn't live threatening doesn't mean it's not distressing. I dislike it when people minimise the effects of tinnitus on others peoples emotional state. Anyway, thanks all for the replies

 

Nina, I just want to say that I have been through hell and back and I'm still alive. I'm not saying it has been easy. That would be a lie, but there are times that I don't hear or listen to the constant noise. When I'm distracted, the noise seems to disappear but when I'm in a quiet place and do not have my guard up, I get very emotional. We all feel this bad feeling, so don't get dismayed that you are alone. Also, the clicking I believe has to do with the three bones in the middle ear. Maybe I'm wrong but I heard this clicking for years. This has quieted down but the constant pitch of tinnitus never did. I know there is hope, so I pray that you are not discouraged. You have so many people on your side supporting you. I believe you will be a survivor because you are trying to find answers which may help others along the way. We all have burdens in life, and this happens to be ours. Please keep on keepin on. Never ever give up because we will find the answers together.

 

I'm hopeful that the Mute Button device coming out next year will help. Here is their website: How It Works | mutebutton is an innovative new tinnitus treatment that simultaneously presents sound to the senses of hearing and touch.

There is also a device called Reltus that I may try. It has a 30 day return policy. What is Tinnitus, Ear Ringing & Ear Buzzing Alternate Treatment | Reltus

Hang in there!

 

Neenie, I think you would benefit from some good talk therapy (preferably with a psychotherapist who has worked with tinnitus patients) as well as having your medications prescribed through a good psychiatrist, as Dr. Ancill suggested. Research has shown that medications are far more successful for anxious tinnitus patients (and boy, I sure am one) when coupled with what is called cognitive behavioral therapy.

Basically, such therapy teaches you ways to redirect your thinking so that something that feels like an overwhelming catastrophe with no solution becomes manageable. In a way, it teaches you to accept your tinnitus versus objecting to it. I know, it sounds impossible when you are living in such a state of anxiety. I was, too. But it has helped me tremendously. It taught me it was OK to grieve for the life I had and that yes, my life would not be the same as before -- but that it still could have a good life, and do all the things that are important to me.

Good luck. We all feel for you and do understand.

 

In a way, it teaches you to accept your tinnitus versus objecting to it. I know, it sounds impossible when you are living in such a state of anxiety.

My experience may be atypical, but I am convinced that "giving up" on fighting the problem greatly helped me fully recover, if that's the word. I came to this site because I found myself thinking a lot today about my experience with tinnitus several years ago, which lasted about 6 months. Many of the experiences described here -- pretty much constant static noise in one ear, aggravated by many sounds like running water, and never any respite. Went to doctors, all kinds of tests, and finally told myself it was just the way life would be and I'd stop looking for cures or relief. And it lessened, over a few weeks, then not there. I have on a few occasions felt similar symptoms since, though never as severe or persistent.

Obviously, I don't know for sure what happened. Nobody does. If one takes the words of the experts seriously, it seems one has to accept the fact it may last forever, go away tomorrow, or anything else "it" chooses! Some hope there, it seems, in the knowledge that one may get lucky. Or not. Like so much else. One thing's for sure-- I'm glad I hung around long enough to realize it could go away just like it came, and just like it might come back.

 

It is a real bear. It is very distressing, and can be very discouraging. it is important to have a constant positive attitude and keep going because always eventually is you do everything properly, you will get habituated, even though that can take 2 years. so do not give up.

 

I have this clicking sound also , only when I speak ? What is that ?