Having hard time understanding my hearing and tinnitus

[JohnG]

Hi
Maybe someone can tell me what the hell is going on with me since doctors sure the hell can't. About two and half months ago, the T started as I was coming off a sleeping pill. I went to my family doctor and he just said it was stress, then I want to ER and they said the same. So I never go any steroids. The medical system failed me here in Vancouver, BC Canada. I went to an ENT in the US because one in BC would take 5 months. Basically, he was no help and said I missed the window.

But here is where I am scared and confused. I tested very well for up to 4K, then the nose dive to 8K.
My T is a loud, high pitched hissing sound. It seems like when the T is very high, I just can't hear voices as well. But my voice range was excellent on the audiogram.

I'm so scared, I not only have the loud hissing but my hearing is awful. I will try the HBO treatment but it has been two months.

The only thing that seems to be better is the H. Ear pain is gone and birds sound ok. But the loud hissing just seems to block speech. But my audiogram was excellent at speech.

I just can't take this....I can't focus on my job and I have a family to support. There is NO help for me. Medicine is useless. I'm depressed. I can't even enjoy music.

 

[Kerry H]

@JohnG - Hang in there man. I don't have all the answers, but I just wanted to say that I also scored perfectly on the voice portion of the audiogram, yet still have trouble understanding when others are talking to me sometimes.

I'm glad you H is better. One day at a time my friend.

 

[JohnG]

Thanks Kerry. I just wish I had more answers.

 

[Lynnette]

John I have that loud hissing noise all the time as well. It's extremely difficult to deal with. I find it much worse in the evenings. The busier I stay the more I can tune it out, but this is still a work in progress since I'm only 7 months in. I'm also on an ssri for depression and that seems to help me cope better...but hasn't make the T any less that's for sure. When my depression is managed, I do much better with my T...when I dip into the pit of hell, my T is unbearable again...as with everything else.

 

[Martin69]

Hi John.

I have also high pitched T for 5 months. Still trying to cope with it.
Audiogram in speech area (1-4 kHz) is fine, above 6 it goes down. So there is a hearing loss in the high frequencies - which is age-related (I am 45). The T is normally in the area where there is hearing loss. So in most cases, it has a high frequency, which makes it more difficult to manage (because it is not easy to mask). Probably it is the same for you.

I don't know why your hearing is problematic. Normally, T doesn't have effect on hearing.

Anxiety and depression is normal. I am still with them. Things that help in my case:
- Mirtazapin/Remeron. I take 30 mg in the evening. This helps against depression and is a good sleeping aid.
- Hearing aids. They increase input in the high frequencies. So I have more input which works against my T.
- Masking with sounds. So have a headphone connected to my laptop playing cicada or other sounds. Program I use is Aire Freshener.
- Reading success stories again and again.
- Trying to keep busy. I have started working again after 5 months for some hours daily.

I hope this all helps me working towards habituation.

It is difficult (also for me the most difficult time in my life) and and I can understand your frustration. Here are many people helping. Stay strong.

 

[JohnG]

Hi Lynnette, I know staying positive is always the best way to go forward. But it seems even if I'm more optimistic the T is still as loud as ever. Maybe it is too soon to freak out. I'm taking Mirtazipine at night for sleep and depression. Funny it does seem to be better in the morning than in the evening. I have a theory that it is the noise of the day that aggravates my T.

 

[JohnG]

Hi Martin69...I've thought of hearing aids at the high freq but maybe it is too soon. I know I had some hearing loss before all this happened but I really don't need 6k to 8k to function. But it might lessen the T if I compensate at those freq since that is were my T is.

But the problem seems to be that when I am around noise like a bus, train, people all talking in a room, my T goes way up and seems to go all over my voice range. After awhile, when my T is too high, I can't hear people talk clearly.

Maybe I'm wrong but it is almost like the T is scrambling my brain at all freq. Maybe the neurons in my inner ear are all overexcited so all freq are disturbed. This is a problem because if I try to mask the T or listen to music a little too long, I start to lose hearing. So noise of any kind seems problematic. It seems my H has gone away so my inner ear is not hurting. But noise of any kind seems to bother my T. That is the most frustrating part of all this.

I'm taking mirtazapine too at 30mg/night for sleep. I'm taking all kinds of vitamins and getting out a bit for exercise.

Thanks for encouragement ...I guess if other people can do it...so can I.

 

[billie48]

I have empathy for what you are going through, John. T is always tough at the beginning. It is a new sensation to the brain and it doesn't go away at our will nor with any medication. That is why the brain is scared about this sensation it cannot get out. It feels stuck so it generates many negative reactions and emotions.

Just like others, I encourage you to hang in there. You are so new with T. It will take some time for the brain to absorb this new sensation without panicking. You last sentence above will likely bring you recovery. That was how I thought when a desperate newbie like me a few years back joined support forums and read up many success stories. If other people can do it... so can I. That is a powerful positive affirmation to our mind and if we continue on that faith, then it will only be a matter of time before we can get better. Learn all the collective wisdom from successful members and copy their approach(es). Be ready for set back at times. Don't give up. Eventually we will get there. Time is a magic wand in healing and time is on our side.

All the best to you John and God bless your recovery. We being in BC, Canada, our situation can't get any worse than the Canucks (our NHL hockey team). Haha. Just kidding. Cheers and take care.

 

[awbw8]

Hey there @JohnG. Like others who posted here, we have felt similarly. The beginning of T is traumatic and terrifying, we are plagued with "what-if's" and regret and fear. I know it feels impossibly lonely and the support of our loved ones just feels like an insult to how excruciating our experience is sometimes, but with time and some work on your part, you can regain your happy life. You probably will not be the same, but you can be a new, and perhaps better, version of yourself again.

I wouldn't worry too much about the HBO or steroids and panicking about having missed the window because of how it seems your T came about. HBO is normally only useful within the first three months of acute noise induced tinnitus - at least from the studies I've read. The same goes for steroids - except that window goes down to a couple of days and even then it may not help.

It's not uncommon, from what I've read, for T to come about as one comes off of a sleeping pill or benzo (anti-anxiety drug), those drugs can be ototoxic (harmful to the hearing apparatus) for some people.

All of this said, I'm no doctor, just someone who has read and researched a LOT about tinnitus in the year I've had it and is trying to spread the benefits of those hours of searching and reading. There are a lot of resources out there. One good one I've found is here: http://www.tinnitusformula.com/library/ I cannot swear by the product (I did try it to no avail, but I have a dear family friend who swears by it - his T is panic induced - probably different cause from ours). The information in the library, however, has been invaluable to me.

In any of these cases, try not to blame yourself. Sometimes things just happen, sometimes things that feel awful and insurmountable at the time. We have a disability that no one can see or hear and that can be very lonely. However, we are all here for you. As billie48 said, time is the great healer, as hard as that is to accept. Be patient with yourself, allow yourself to grieve. You can come back though.

I wanted to die when mine started, truly. It woke me up every 2-3 hours and the panic kept me up. I lost a ton of weight, was gone from work - it was really, really bad. But here I am a year later almost and while I would definitely still get rid of it if I could, and some moments I'm just like "ugh, why" - it's more of an annoyance (if that) than a tragedy now. Most days it's neither - I don't think about and if I do it's just there - it's become a harmless part of my silence. I never, never would have imagined I could feel this way a year ago - but I can and you can and so have many others on this board. It is incredible how your brain can adapt and learn to filter out things that you stop deeming as harmful.

Remember that being positive takes time to take root in your brain - your brain physically hard-wires a panic response for that T sound when you freak out about it. Even if you have an hour of feeling positive and not panicking, it's going to probably take a few months for your brain to be like "okay, this t is just a noise, not a bear trying to eat me." - because that's about what it's thinking and when there's a bear, your brain wont let you focus on anything else. Think of it this way, ever notice how when you read your nose is in your field of vision? I bet you did now that I said that - it's always there, but you filter it out. T isn't exactly the same, but there will be a day when it's closer to that than what you're feeling now.

I started a blog for myself about three months in - I don't normally post it, but it seems like something that might be of comfort, or at least give you a little information (I tried a lot of things): www.hopeblog.org It's not selling anything, promise.

Last thing, since yours didn't come from a completely obvious event (mine started directly after/during a loud concert), you should go to a doctor and make sure they check to see that it's not something more serious. Also, I might give the hearing aids a shot if you have significant hearing loss - that really might "get rid of" a lot of your T, not to mention help you hear those around you better.

Take care of yourself and we are here for you! You can be okay again. Just know that T will either go away, or you will habituate with time and a little work. Either way, it is a "cure". You can be fine.

Sorry for the essay - I remember how scary it is and just want to calm all the fears at once! *hugs*

 

[JohnG]

Thanks billie48 and awbw8. I will try to take your advice. This just happened so fast. Just this past New Year I celebrated with my wife and could hear great and went to bed in silence. It seems like so little time ago I was "normal"...now I have reduced hearing and T. I just have to be strong and try to make it through the day at work like nothing has happened to me. Cheers all. I really needed the encouragement.

 

[mikey13]

as I am also a newer suffer of T., perhaps i can offer some insight?

I'm almost 2 months into my T. just literally showed up one night out of the blue. went to sleep fine,woke up an hour later with it. I have had allergy problems most of my life,and chronic sinus issues for the last 16 years , so I'm inclined to believe these things brought it on.... about 3 weeks into it,when it wasn't going away, I had a bit of a breakdown - crying,screaming,pleading, the whole thing. I actually found this a bit therapeutic, cause i was basically holding in all I was feeling. so if you feel the need to just let it all out,the frustration,the anger,the hurt, just do it!

the sooner you get back to the things you used to do,the better! I sat around for a few weeks,and neglected not only chores that needed doing because I was depressed, but stopped exercising,stopped doing my hobby, stopped playing games with my son or going places with him... I discovered the more of these I started doing again,the better I felt, even with the T. blasting in my right ear. you need to start teaching your brain that this T. isn't a threat to you,and one way to do it is to teach the brain that this noise will not interfere with your normal days routine.

someone posted that if your t. starts to bother you or overwhelm you -do something! ANYTHING! go for a walk or run. play a video game. take a drive. go fishing. anything at all, because if you're busy doing something that occupies your mind,that's less time and energy it has to spend on your T...

sleep is VERY important! if you have to take medication,use a masker,whatever it takes,do whatever necessary to get your rest. you'll be surprised just how much easier it is to deal with your T. if you're nice and rested.

I've discovered,in my attempts at habituation, that it seems to be a 2-part process. the first part is acceptance. it took me about a month to do this,but it varies for everyone. my T. is blaring right now - I don't care. I'm typing this up, I was playing Candy Crush on my son's I-Pad before, later on we're going to watch Thor : The Dark World... you have to get the mentality in our head that your T., while constant,doesn't matter. it can't stop you from doing things. it WON'T stop you from doing things! once you get this mindset,you're on your way... is it bad then if you notice your T. ? no. I notice it several times a day! I'm like "You bastard ear!!", get mad for a few seconds,then move onto something else. the goal is to not have it bother you,even when you hear it. to reduce it to something that doesn't matter. this also comes with time. cause once you can get to that point,you'll start on the road to NOT noticing it as much. I do notice it almost every day,but there's large sections of my day where I DON'T notice it now. eventually ,over time, I'll notice it less and less as it becomes more of a background noise for my brain,and the ultimate goal is to one day NOT notice it at all,even though it's still there. millions upon millions of people have reached this goal,and I not only know I will reach this point, but you will as well! have trust and faith in yourself,your spirit, your resolve,and your body and mind's ability to overcome.

 

[JohnG]

Thanks Mikey13. I too have bad sinuses. Not sure if that helped it get worse. I, unfortunately have T in both ears...but one is way worse than the other. The real problem is the distortion of sound and the aversion to loud noise. I suppose this will go away over time.... then it will just be my new companion, Mr. T.

 

[Mark McDill]

Hi
Maybe someone can tell me what the hell is going on with me since doctors sure the hell can't. About two and half months ago, the T started as I was coming off a sleeping pill. I went to my family doctor and he just said it was stress, then I want to ER and they said the same. So I never go any steroids. The medical system failed me here in Vancouver, BC Canada. I went to an ENT in the US because one in BC would take 5 months. Basically, he was no help and said I missed the window.

But here is where I am scared and confused. I tested very well for up to 4K, then the nose dive to 8K.
My T is a loud, high pitched hissing sound. It seems like when the T is very high, I just can't hear voices as well. But my voice range was excellent on the audiogram.

I'm so scared, I not only have the loud hissing but my hearing is awful. I will try the HBO treatment but it has been two months.

The only thing that seems to be better is the H. Ear pain is gone and birds sound ok. But the loud hissing just seems to block speech. But my audiogram was excellent at speech.

I just can't take this....I can't focus on my job and I have a family to support. There is NO help for me. Medicine is useless. I'm depressed. I can't even enjoy music.

Hi John
I got T a year ago; mine sounded like a dental tool in the center of my head (very loud, heard it over everything). I, too, thought my life was over and done; I couldn't handle it (work, family, everything). Fortunately, after a year of habituating, mine is now a hiss (not as loud) and I could really care less if its on or off. If someone told me that just four or five months ago I would have told them they were nuts and obviously didn't understand my T. Well, I'm living proof that you can habituate. You will.

I don't have H but from what I've heard on this site, it subsides (as you have already experienced).

Like many, you found out the medical community is useless on this topic; sending your stress/anxiety way over the top.

Stress is central to a lot of this; I got my T during a very stressful time -- I'm sure it had something to do with it. Managing stress (now) is a central part of managing my T.

Right now your brain is in fight/flight mode (it's horrible); that is why your anxiety is through the roof -- your brain is on full alert whether you like it or not. Try, for all you are worth, to accept your situation (easier said than done -- I hated hearing those words at the beginning but they were right). It felt like giving up/giving in (kind of scary in fact); however, as I accepted the fact that I have T (still hating it, but acquiescing nonetheless) I was able to start habituating; it got better from there on.

I also got some hearing aids with white noise generators to mask the T; they were a God send.

Mark

 

[JohnG]

Hi Mark,
I am thinking when things settle down a bit to perhaps go the HA route with some kind of masking/white noise. Right now, if I amplify sound, that doesn't help...it just amplifies the T. But...probably when things adjust in my brain, I will go for another hearing test. I just need the high freq amplified. HA aren't cheap so I need to do my research and wait. It does kinda make me feel old to wear them but I guess I need to get over that too.

 

[Mark McDill]

Hi Mark,
I am thinking when things settle down a bit to perhaps go the HA route with some kind of masking/white noise. Right now, if I amplify sound, that doesn't help...it just amplifies the T. But...probably when things adjust in my brain, I will go for another hearing test. I just need the high freq amplified. HA aren't cheap so I need to do my research and wait. It does kinda make me feel old to wear them but I guess I need to get over that too.

John
I don't have H; however, in my myriad visits to my audiologist I questioned him about one particular device they have -- it's designed for H. Essentially, they are dynamic ear plugs that cancel out noise and protect your ears; and give you relief from your H. That's about all I know about them; but they seemed pretty cool.

Mark

 

[JohnG]

That's what I need is a "smart" earplug. One that can tell how many db is hitting the ear and shut down to protect me from anything over 80db, for example.