How Do You Live With This?

Discussion in 'Introduce Yourself' started by RobC, Jun 19, 2014.

tinnitus forum
    1. RobC

      RobC Member

      Location:
      California
      Tinnitus Since:
      06/2014
      I've had this less than a month and I'm about to go crazy.
      IT WILL NOT STOP!!!! AAAAAAAAAAAAAAAAAAAAAAAAHHHHH!!!!!!
      Is this what the rest of my life is going to be like?
      How do you cope?
       
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    2. citigirl13
      Dreaming

      citigirl13 Member

      Location:
      North Yorkshire, England
      Tinnitus Since:
      17/1/14
      Hi @RobC.

      T is terrible. I know exactly how you feel - all you want in the world is for it to stop. BUT YOU LEARN TO COPE. As unrealistic as this sounds to you right now, you will get used to the sound. After all, you can fall sleep with air conditioning rumbling and it doesn't bother you.

      You are just in the early stages of T. It will get easier. And it can go. People have had it go even after years of having it, for no rhyme or reason.

      Perhaps you could tell us a bit more about your T e.g. how you got it? What it sounds like? Have you seen a doctor?
       
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    3. RobC

      RobC Member

      Location:
      California
      Tinnitus Since:
      06/2014
      I have no idea how I got it. One night, I noticed a loud, high pitched ringing in my ears. It was strange because I hadn't gone to any clubs or concerts. I didn't think much of it, and just went to sleep. To my horror, when I woke up, IT WAS STILL THERE... and LOUDER!

      I thought it would just go away, so I tried to ignore it. Total Fail. Then I started playing music to hide it. That kind of worked. The only problem is, I don't like a lot of noise. I have always needed silence, especially for my work. I used to do most of my creative work at night, when everyone was asleep, so that I could just sit in quiet and think. Now, my friend silence has become my arch enemy.

      I've become some wretched creature that constantly has to have noise and bustle around me so that I can avoid silence at all costs. Even then, it pierces through... like a high pitched laser drilling into my right temple. The only solace I have is when I'm sleeping. But as soon as I am conscious, the laser starts drilling again.

      I'm going to see an otolaryngologist tomorrow. I needed to get a referral just to get in, and because I've been healthy up until now, my insurance carries a high deductible. So, not only is it going to cost a lot, but based on what I've read, I'm not hopeful he / she can even do anything for me.

      I sound like a damn baby. There are people that have dealt with this for years. But this has worn me down like you would not believe, psychologically and physically.
       
      • Optimistic Optimistic x 3
    4. Teri
      Artistic

      Teri Member Benefactor

      Tinnitus Since:
      4/2014
      Time will make things better for you Rob. I too, was taken by surprise by this. I too, have always preferred silence. I have had it 3 months and I must say that it has gotten a little better with time.
       
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    5. citigirl13
      Dreaming

      citigirl13 Member

      Location:
      North Yorkshire, England
      Tinnitus Since:
      17/1/14
      It will get better with time. I used to get really annoyed when people said that because I didn't believe it, but it is true. I can be in a quiet room reading sometimes and not notice it. I remember one time I was at work and got fleeting T (i.e. where you get a high pitched ringing in your ear while feeling that you have gone a bit deaf. Don't worry, everyone gets this, even people without T) and I was really enjoyed because even though it went after 10-15 seconds I had forgotten that I even had T, and it had reminded me. Another time I was in the bathroom and suddenly noticed the ringing in my ear (don't know why I suddenly noticed it; maybe it had spiked a bit?) and realised I had been sitting in a silence room and hadn't noticed it. It would have been unthinkable at the beginning. What I'm trying to say is that you do learn to live with it.

      I am sorry that you don't know why you have T. Sounds like you haven't damaged your ears by loud noise at any rate. Sometimes I think people get T with old age because it is linked with hearing loss, and everyone suffers from that. However, T can be a sign for a lot of things e.g. tumour in the brain (very unlikely, and usually only from one ear), diabetes etc, so if I were you I would get a full check up if your ears seem okay. I think T can be a warning that something is wrong, so I would advise getting a blood sample done and maybe and MRI. I'm sure other people can give you more advice.

      I too love silence. I used to wake up in the middle of the night and marvel at how quiet it was. I miss that. And I understand that concentration is difficult with the T in the background. I would advise you getting some masking sounds on your phone/computer and playing them. I have relaxing sounds app on my phone and usually use rain/forest etc, but there are others such as the dryer and a train which mask loud noises. If you put something like thunder storm/wind etc, you can trick your mind into forgetting about the T for a bit because we are used to hearing the weather.

      Please don't feel bad or weak for complaining. T is more a mental ailment that anything else, and many people have suffered depression because of it - I'm sure everyone here will agree that they have had difficult times - whether that's days or months or even years. But the majority of people learn to cope with T in time. The trick is trying not to seek it out, keeping busy and not reacting to the noise. I would suggest sleeping well (if needed use masking sounds to help you sleep, or ask your doctor for some meds to temporarily help), eating healthily, exercising and keeping busy, especially at the beginning. I would also try to do stuff that you love, whether it's reading your favourite books or hanging out with friends (hopefully in quiet places. If not - take earplugs/don't go/suggest somewhere else). You won't feel like meeting up with people/doing work because I'm guessing you're quite stressed, but the more you do it the easier it gets.

      Let us know how you are getting on and feel free to ask any questions you have.
       
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    6. RobC

      RobC Member

      Location:
      California
      Tinnitus Since:
      06/2014
      Thanks for the kind words and good advice. I am trying to keep it together. I woke up this morning, and it was in the other ear as well... except this one had an alternating pitch, hi lo hi lo, in rapid succession. At first I was like, you have got to be kidding me. This cannot be happening. But it was. I almost lost it. I felt all my emotions welling up, like I wanted to run out of my own head. It took all of my control not to go into a full blown panic. I decided to take a shower, which is the only time I can't really hear it. When I got out, the other ear was quiet. What an amazing sense of relief.

      I've been reading that poor sleep can exacerbate the ringing, so I guess that is what may have caused it. I could not sleep at all last night. Imagine trying to sleep with a giant wasp next to your bed. You watch it out of the corner of your eye, hoping it won't sting you, but every time you are about to go to sleep, it does and you wake up. That's what it felt like. I just layed there tossing and turning and hoping I would just lose consciousness. I got maybe 3 hours of sleep.

      One good thing is that I'm going to the doctor today. I doubt they can do anything for me, but might as well go through the motions. I'm less than thrilled at the prospect of spending thousands of dollars just to find out that I'm stuck with this. But I'm so desperate at this point, I am still hoping. I think that's what's grinding me down the most... the alternating hope and despair. I wish I could get past this phase and just accept it. But I can't. Yet.

      I will post an update when I get back from the doctor. Thank you to everyone here. Knowing that I am not alone is a comfort.
       
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    7. Ken219
      No Mood

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      @RobC You have tinnitus started this month? I've had it for 24 years. I have had a few relapses but always habituated. Lets do this together. Hang in there.
       
      • Like Like x 5
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    8. Jeff M.
      Cowabunga

      Jeff M. Member Benefactor

      Location:
      La Jolla, CA
      Tinnitus Since:
      Oct. 2012
      Cause of Tinnitus:
      Idiopathic
      @RobC - Your avatar kinda says it all man!! That's exactly what I felt like (and maybe looked like!!) during the first months dealing with my T!!!! Dude, everything you are feeling and thinking is valid, so don't even think twice about posting here on TT, especially if you need to vent!! We "GET IT" here on TT. I am sorry but people who do not have T, don't get it. I have had gnarly high volume, high pitch (like your laser drill) for a year and a half. My wife, who knows me better than anyone, and loves me more than anyone, bless her heart, but even she doesn't totally get it! In the beginning T is vicious, mean, terrifying and horrible!! :mad::X3::nailbiting::coldfeet:!!!

      BUT, as has been shared above, there is hope man!!! Seriously!! (y) Just as citigirl shared, I too hated it when people told me I would "learn to live with it"!! :banghead: I didn't want that, I wanted it to GO AWAY!! No offense to the great doctor's we have here on TT, but the medical community was useless to me. Yet withe time and efforted I have habituated for the most part, and you will to!!!;)

      I did find solace in exploring the various threads here on TT and getting input and shared experiences with T. I encourage that you do the same. There is a wealth of knowledge and experience on this forum. Also, as you have already somewhat experienced, FANTASTIC SUPPORT!! Stay connected here!!

      You nailed it about SLEEP :sleep:!! That is the key to getting yourself stabilized and able to deal. Do what you gotta do to get your sleep on man!! So important!!meds (if need be, under medical supervision), homeopathic sleep aids, exercise, masking, etc.... You'll be amazed how much easier it is to cope once you get back into a steady sleep pattern!!

      Peace and rest to you Rob!!

      Jeff

      :rockingbanana:
       
      • Like Like x 3
    9. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      I agree with Ken219. I've had tinnitus for over 25 years, and habituated. Then, it relapsed, and I am in the process of habituating again. Rob, please don't be discouraged. You are new to tinnitus, but, for most of us, if you can slowly begin to adjust to it, your brain will adjust, too. Habituation is possible; you'll see!
       
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    10. Alex Senkowski
      Tolerant

      Alex Senkowski Member

      Location:
      Canada
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      Otosclerosis
      We have to live with it and hope that it either goes away or our brains adapt and relegate it to being harmless background noise. Six months ago I couldn't imagine being able to endure it but now I can because I know that it's just a noise in my head. It's unpleasant and irritating but harmless.
       
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    11. Jeff M.
      Cowabunga

      Jeff M. Member Benefactor

      Location:
      La Jolla, CA
      Tinnitus Since:
      Oct. 2012
      Cause of Tinnitus:
      Idiopathic
      Spot on Alex!!!
       
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    12. MikeA
      Curious

      MikeA Member

      Location:
      USA
      Tinnitus Since:
      1992
      Most certainly is. I was cruising along nicely when my T increased much 4 months ago. But it's subsided a lot and I'm acclimated once again. I figure it's not too loud, only a sound, mheh.

      I was talking to a relative recently when he mentioned he's had T for many years. Says it doesn't bother him and added that he'd thought for most of that time that many individuals experience constant ringing/hissing. I'm thinking this points to acceptance as a key factor in the habituation process.
       
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    13. Teri
      Artistic

      Teri Member Benefactor

      Tinnitus Since:
      4/2014
      Great posts! Very encouraging. I wanted to add that there are going to be good days and bad days. I have just had to learn to accept the bad days for what they are and know that a good day is coming.
       
    14. RobC

      RobC Member

      Location:
      California
      Tinnitus Since:
      06/2014
      Hello all... first off, thanks so much to everyone! Sincerely, THANK YOU! Hearing your stories and knowing I'm not alone has really helped tremendously.

      I got mixed news today. I went to the doctor and I found out (I think) what is going on. I've had a totally separate ear condition for a few years now. It sounds like my right ear is plugged all the time, and when I talk, I can hear myself inside the ear. I found out that it is a condition called Patulous Eustachian Tube, where the tube basically stays open all the time, causing autophony.

      The doctor wanted to figure out how it happened, so he asked me if I'd lost a lot of weight in the past. I'm a pretty fit guy, but back in 2008, I cut around 40 pounds to compete in the BJJ world championships. That's when my ear problem first started. Well, turns out that losing that much weight caused adipose tissue around my eustachian tube to disappear, causing the tube to pop (and stay) open. The funny thing is, I might be able to cure it by gaining a lot of weight. But, I'm not going to do that.

      I was relieved to find out what was causing the autophony, because I had been worried that I had a brain tumor or something. But what I found out next was very difficult to digest.

      Moving on from the eustachian tubes, the doctor then tried to find the cause of the tinnitis. He asked if I had been exposed to any loud noises recently. I had not. However, because my eustachian tube is always open, my own voice goes directly into my ear without much buffer. And, it can be LOUD. So, the doctor asked if I'd been speaking loudly recently. It turns out I have.

      I'm a hip hop artist, and I'd recently been in the studio recording. It turns out that the volume of my own voice is probably what caused the tinnitis. Unfortunately, I'm now caught in a catch 22... give up doing what I love, or risk increased tinnitis and deafness in my right ear. Even worse, I still have 7 tracks left to finish, with several different artists, and most of the parts already recorded and ready to go.

      On the bright side, I think this qualifies me for the shittiest rapper ever... after all, how many rappers are so bad they make you go deaf?

      Thanks again everyone!
       
      • Like Like x 1
    15. citigirl13
      Dreaming

      citigirl13 Member

      Location:
      North Yorkshire, England
      Tinnitus Since:
      17/1/14
      Hi @RobC. I have heard about this happening with the eustachian tube and yes, it can happen due to rapid weight changes. Unfortunately I don't know much else about the condition, because when I was reading about it, it was generally talking about women having it and b/c of hormone changes.

      I am sorry about how you got your T. It's actually quite unfair considering that if you hadn't had this condition in the first place it is unlikely you would have gotten T. Unfortunately T is quite common with musicians.

      It could still go, but I would try and give your ears and rest and I would also think about trying to get your eustachian tubes back to normal again if you can. I'm afraid I don't know whether it is bad for your eustachian tubes to be open all the time - it's probably better than having them blocked anyway. Did the doctor suggest any treatment?
       
    16. RobC

      RobC Member

      Location:
      California
      Tinnitus Since:
      06/2014
      @citigirl13 The doctor advised against treatment. He said they could block the tube, then put an artificial tube in it, etc. But given my active lifestyle, after he told me about all of the drawbacks, it would be more trouble than it's worth.

      The interesting thing is that you can actually block the eustachian tube by standing straight up, bending forward at the waist 90 degrees, and letting your head hang. Something about the muscle action closes the tubes. Imagine a very exaggerated Japanese bow. I tried it and was amazed to hear my voice how I used to hear it. Maybe I should just start bowing when I speak to people. They will think I'm being very polite.

      In the meantime, I'm thinking of how I can apply my skills to improve the situation. Right now I'm thinking about composing some music or maybe modifying an mp3 player to help administer notched sound therapy. I think taking active steps will help me feel like I'm doing something to fight back.
       
    17. citigirl13
      Dreaming

      citigirl13 Member

      Location:
      North Yorkshire, England
      Tinnitus Since:
      17/1/14
      That sounds like a good idea. I always prefer doing something about my T because, as you said, you feel better for it.

      If your doctor advised against treatment that is definitely for the best. I myself would not like to have surgery if possible and would try to avoid it, though my Eustachian tubes are the opposite of yours: blocked, and I may need tubes because I have fluid in my ears.

      You sound like you are doing well so hopefully it will stay that way. As I've said before T can go, so hopefully you will be very lucky and it will disappear. I hope so. Let us know how you are doing.
       
      • Like Like x 1
    18. MikeA
      Curious

      MikeA Member

      Location:
      USA
      Tinnitus Since:
      1992
      Very funny!


      More positive attitude. Excellent. That's the spirit!
       
      • Like Like x 1
    19. RobC

      RobC Member

      Location:
      California
      Tinnitus Since:
      06/2014
      So, I've been experimenting with stuff all weekend. I have multiple frequencies, with the loudest, most irritating one being around 8k. I discovered something interesting about my tinnitus. I've found that playing a sine wav tone and it's associated acrn frequencies at around half that frequency lowers the volume of my tinnitus for a few seconds. I'm using the general fuzz tone generator and a tone of 3918hz. I have also tried doing it at the next octave up (16k), but I can't really perceive the tones on my shitty laptop speakers. I will try it on my nice studio monitors when I get to the office.

      I stumbled on this by accident. I was trying to identify my tinnitus frequency using some of the online tools. However, I was having a hard time pinpointing the high pitched tone. I would try to listen to it in my head, then play a tone on the generator, but it never quite sounded right. I thought that an easier way to do it would be to find the same tone at a lower octave, one i could whistle, then scale up.

      I started whistling the tone and found the lower octave frequency to be around 3900 hz. I listened to it for a few seconds to make sure, then played the ACRN tones for 3900hz. But, when I went to double it, I found that the higher pitch tone was really soft, to the point i had to strain to hear it. I was jumping around like I scored a touchdown. But, after a few seconds, the tone returned. Still, it is reproducible for me. When the very high pitched laser drilling sound comes in, I can attenuate it by playing the sine wave and acrn tones for the same note an octave lower. Or, when I hear the 7836hz tone, I can make it softer by playing 3918hz and it's ACRN frequencies. But, it only lasts for a few seconds.

      Two octaves below did not do anything. So, when I try it with ~1950hz, it does not affect the high pitched sound at all. But a single octave below immediately softens the tone for the octave above it for a few seconds.

      This trick does not work for the other frequencies I hear. However, the low pitched ones are much less annoying. It's that high pitched laser drill that drives me crazy. I don't know if this will work for anyone else, but I wanted to post it because it is working for me right now.

      I tried looking up research on this approach, and found the topic of "Linear Octave Frequency Transposition", but it seems to be related to hearing aids more than any kind of tone generation.

      http://www.plosone.org/article/info:doi/10.1371/journal.pone.0051915

      The next thing Im going to experiment with is phase shifting the actual frequency. As a musician, I learned that phase issues can cause sounds to be soft or make them disappear entirely. Seems like there is already research into this:

      http://www.tinnituscare.net/pdf/LipmanHeadandNeckSurgeryJournal.pdf?origin=publication_detail

      I have a list of things I'm going to play with, and I'll report my experiments here. Might as well be my own guinea pig.

      EDIT: After further experimentation, I don't think the ACRN tones do anything at all. I just tried using them only, and it does not attenuate the drill. It is the tone itself, octave shifted down, that is working for me.

      @citigirl13 Sorry to hear about your eustachian tubes. I would check out alternatives before getting the surgery, my doctor seemed sketch on it.
       
    20. citigirl13
      Dreaming

      citigirl13 Member

      Location:
      North Yorkshire, England
      Tinnitus Since:
      17/1/14
      Tell me about it. I think I am going to ask if his opinion, hopefully he will be able to use some technology to see whether I actually still have fluid in my ears. If I can I want to wait for a year to see if there is any change, and if I do get tubes put in my ears then I want another appointment 5-7 days after so if it makes my ears worse I can get them taken out.

      How are you doing?
       
      • Like Like x 1
    21. nogood
      Torn

      nogood Member Benefactor

      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      ototoxicity/infection
      @RobC for Patulous Eustachian Tube issue u can try to gain some weight. This problem is caused by not enough fat tissues in the tubes. Its just a suggestion, its better than doing a surgery.
       
      • Like Like x 1
    22. RobC

      RobC Member

      Location:
      California
      Tinnitus Since:
      06/2014
      @citigirl13 Surely they can take a peek inside your ears? At my appointment yesterday, the doctor shoved a foot long bendable camera up my nose and poked all up in my eustachian tube. The must have a way to check ear fluid.

      Regarding placing tubes, make sure to do your research. My doctor mentioned it again yesterday, and he is not a fan of the procedure.

      On a positive note, I just finished mixing my latest song (the one I just recorded which I think caused my tinnitus), so at least I feel good creatively.

      @nogood I am about as fat as I get right now, and it still sounds like I'm in a cavern when I speak. The problem is that I do a lot of activities that burn calories, so even when I'm on the In and Out diet, I don't get that big. The doctor said he could do a reverse liposuction procedure to implant fat around my eustachian tube, but it sounds like more trouble than it's worth.

      I've just started speaking really softly, or laying down / bending at the waist to speak loudly. Unfortunately, the doctor believes the Patulous Eustachian Tube is a big contributor to my tinnitus, so I may have to address it at some point. But, changing my lifestyle doesn't seem like an option to me. BJJ, salsa, cycling, surfing... that's what I live for. I'd rather not speak :)
       
    23. citigirl13
      Dreaming

      citigirl13 Member

      Location:
      North Yorkshire, England
      Tinnitus Since:
      17/1/14
      I have not been to see an ENT yet. In my country you can't go unless a doctor refers you. Mine finally has, and my appointment is on the 1st August. A long time to wait. :-(

      My own doctor took the same line as yours. He doesn't want me to have the procedure unless I have to. He says that if it is fluid, I could get the tubes to drain it, but unless my Eustachian tubes clear the problem will come back once the tubes are taken out. Hopefully the fluid is gone and my Eustachian tubes are partially blocked? I don't know. Hopefully I will find out.

      Glad to hear you're doing well. I think to get you Eustachian tubes to close you would have to gain weight, but it's up to you. If it doesn't bother you, then perhaps don't bother.
       
    24. RobC

      RobC Member

      Location:
      California
      Tinnitus Since:
      06/2014
      @citigirl13 What? How long did that take? So you had to wait this entire time just to see an ENT? It's crazy that I've already been to two ENT appointments and you just got referred. Wow.
       
    25. citigirl13
      Dreaming

      citigirl13 Member

      Location:
      North Yorkshire, England
      Tinnitus Since:
      17/1/14
      I know. It's so frustrating. I don't want to blame my doctor because he is a great doctor. He explained what he thought the problem was, what could be done etc. he was Beth kind and sympathetic. He had faith it would have gone by now. Unfortunately I have not been so lucky :-(
       
    26. MarkD
      Fine

      MarkD Member

      Location:
      Sydney, Australia
      Tinnitus Since:
      05/2014
      Hi Citigirl,

      If you keep your healthy diet and exercise routine going and ears protected, there's always a chance it will subside at any time. That's really the best you can do that's in your control.
       

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