Explaining Tinnitus to Others?

[russiancarl]

Hey, I'm sure this has been discussed before but I haven't found anything real recent or very relevant in my searches.

How do you explain your tinnitus to others so that they understand? I tried finding some literature but often times it just describes the symptoms and doesn't talk about how devastating it can be or how long the path to recovery can be. I feel like a lot of people don't believe me that this is a real thing and can be as bad as I describe it.

I've had T for 15 years but lately it's been much worse. One spike from a corticosteroid shot for my eczema that lasted 2-3 weeks, followed by a month of silence.. well, I guess I should say back to baseline, followed by now 3 weeks of spike again. I put off my vacation for this as it's so intrusive and driving me batty that I don't think I can handle 12 hours in a car by myself when even the road sounds no longer drown out the ringing.

I try to explain this to my friends and girlfriend but they don't seem to fully understand that it is now a daily battle to rehabituate. Some days I don't care about it, but other days I am a complete basket case. I know they care but they just don't get it... surely someone can help me out with explaining it better.

I've since scheduled another appointment with a different ENT and have a hearing test on Monday. I'm really hoping I can return to my baseline but I know as time goes on it gets less and less likely. Still no idea what started this... I had a 30mg intramuscular injection of Kenalog followed by 7 days of Keflex a cephalosporin class antibiotic, this was then followed by 28 days of Bactrim DS which is a sulfonamide. Both of which are relatively safe as far as antibiotics and ototoxicity go though the Bactrim I know can cause T it is quite low on the list.

Life is fun some days eh but staying positive Sorry I derailed at the end... help me explain this to people so they don't think I"m either crazy, weak or possibly both!

 

[Rhea]

hmmm..for me depends on who I am telling and how much I want/need them to know.

If I am telling a close friend family member etc I would just be honest and say that you have damage to the inner ear and auditory part of the brain and that this results in a constant and unsettling noise that you hear all the time that makes you feel - insert whatever you feel - (sad/depressed/frustrated/unable to concentrate/anxious) If they still don't "get it" ask them to imagine having two people standing either side of them blowing a whistle loud into each ear every second of every day for the rest of their lives. (I used that one before and send to make the horror of it sink in for people)

If I am telling someone who just needs to know the basics I will just say I have inner ear damage that results in a loud ringing noise and that I have to be very careful around noise so as not to make it worse.

If you really want someone to know how it feels download some tinnitus sounds on the net put them on your ipod and ask your love one to put it on for an hour and try and go about their daily life....gives them a little taste of it :|

 

[Ken219]

First ask them if they ever heard of ringing in the ears(tinnitus). If they say no, it depends what to say next. If you are are talking to someone at your job Just drop it. They might think you are crazy and hearing voices. People are that uninformed.

 

[carol kane]

No one, but no one gets it unless they have it, and that im afraid is a fact !!! my friends and family have seen me on my knees crying. they've seen me have panic attacks, they've heard me talk about ending my own life ... and they still blurt out stupid f>>>ing things like, there's a live band on tonight do you fancy it????? we're going to the circus, do you want to join us??? there's a brass band playing tonight come with us it'll be fun ??? i could literally f>>>>ing scream, are they all daft ? is everyone really so damn insensitive?? I often ask myself it was them with T and not me, would i be just as stupid as them ? would i be doing ass hole things around them ? suggesting nights out that if zapped they would try and end their own life ??? i don't know the answer, maybe i would as i wouldn't know just how debilitating this stupid affliction is. I know that if i saw someone sitting in a wheel chair with no legs i wouldn't ask them if they wanted to dance ... or ask a blind person have you seen my keys !!! everyone in my life just pisses me off ... rant over !!

 

[Denny]

It is really not worth explaining to most people they will view it as a
Mental illness if they don't understand your description.

 

[washashore]

Most people that I've told have either heard about it, have experienced it at some point in their lives, or have some level of chronic T themselves. And for those who don't get it, I would cut them some slack about asking you to go into loud situations. Let's face it, T is an invisible condition and no one is going to truly understand the anxiety that going clubbing would cause you, for example, without having T themselves. This is something that I am slowly coming to terms with. I'm sure I know many people who are struggling with their own medical or mental conditions, that I have no idea about.

One thing that has worked for me is trying to have a sense of humor about it. If my friends are blasting music in the car, I say "Hey guys, I have the ears of a 90 year old, can you turn that shit down!" They usually laugh and then turn it down. I've cracked jokes about it enough times that my my friends now usually ask if a place it too loud for me before we go it.

Also, when random people at a loud bar ask me why I have ear plugs in, I just say "I f**ked up my ears, so now I have to wear these things, quite the fashion statement, huh?" Then the conversation moves on to something more interesting that my medical problems.

 

[washashore]

Or you could email them this link -

 

[carol kane]

@washashore, i know that this thing is invisible to others, i'm just feeling so pissed off with having to deal with it every day ... putting plugs in only means that my T screams louder in my brain and i just can't wait to take them out !!! it would be great if i walked into a bar and saw someone with plugs in, i would know straight away what was going on, and would feel like i'm not the only one !!! but i've never came across anyone who plugs their ears, only me and i'm damn sick of it ... i just want to be normal, something i will never ever be again ...

 

[carol kane]

Or you could email them this link -

I want Zachery's T ... i couldn't hear anything ...

 

[washashore]

@carol kane

Yeah, I know how you feel. It sucks big time. Wouldn't it be cool if there were a Tinnitus bar, where everyone has ear plugs or, even better, everyone dances to the sounds of waterfall sounds instead of loud music. What a sight that would be.

I can't say that I've completely figured out how to deal with this condition. I have some really good days and bad days, but i usually feel the best when I don't let it stop me from doing things I would have done before T. And some humor works for me - it lightens my mood - but everyone has to find the approach that works for them, I guess.

In terms of hearing the T more when you have the plugs in - yes, that's true, but for me, it's better than than staying home and not being with friends. I also got custom plugs with interchangeable filters, so I can adjust the attenuation based on the situation, which helps. I still haven't ventured into a rock concert or club since the T started though... thankfully, that's not really my scene anyways

 

[Rachel Murray]

I have both high frequency and low frequency tinnitus.I explain it to the others like this: in my left ear I have a very loud whistle and ringing that never stops; in my right ear I have a car engine that it particularly annoying when I'm in bed , sometimes it is so strong it's like a truck engine and at the same time I have a strong vibration, like a window glass vibrating when a plane passes by. Most of the people think I am exaggerating. Or that it won't last forever. They say:" it will get better, don't worry!". Sure...

 

[carol kane]

@ washashore, thanks for your reply, i too have good and bad days, i just want my before life back ... i agree staying at home alone sucks big time, and also like you, rock music and even concerts have never been my thing ... but bars and nice restaurants are my thing, although i still go i don't enjoy them the same as i'm plugged and miss alot of what people are saying and joking about, that makes me feel sad !! this shit will either make me or break me, right now i couldn't care less one way or the other ... a wee joke for you ... i called the tinnitus hot line the other day, but it just kept on ringing !!! hahahah!! thanks for your help.

 

[carol kane]

I have both high frequency and low frequency tinnitus.I explain it to the others like this: in my left ear I have a very loud whistle and ringing that never stops; in my right ear I have a car engine that it particularly annoying when I'm in bed , sometimes it is so strong it's like a truck engine and at the same time I have a strong vibration, like a window glass vibrating when a plane passes by. Most of the people think I am exaggerating. Or that it won't last forever. They say:" it will get better, don't worry!". Sure...

Idiots, the whole point of this effing thing is that it doesn't get better, it can and often does get worse !!!!

 

[russiancarl]

Well, maybe I should point people to this thread if they don't quite understand it.

My T was mild for so very long it didn't affect me. But over the last 2 months some wonky stuff has gone on that has severely affected my previous habituation. I mean, my T before was covered by fans usually or I was in tune enough with it that even in a silent room it wouldn't bother me as I knew it'd go away before long. Now it's above a room fan and a white noise machine I have going on...

It is difficult to deal with but I know it could be much worse. I get relief from taking showers, and when my focus is on other tasks it is greatly reduced... I am thankful for that. Still, some days all I can do is lay in bed playing Animal Crossing on my 3DS as it's the only thing that takes the ringing from my mind. It doesn't help that it seems to mix in sounds too. The high pitch stuff I can deal with I think because it's what I've had all along and is just louder, but when I get that lower pitch tone tossed in...g ergadsfh I want to break something before my mind itself break.

The worst thing is I know this is all my fault. My eczema flared up for months before a trip I was supposed to make at the end of May so I went in and got a shot I knew wasn't all that great... the Kenalog. I hadn't had any issues with ringing in my ears before but it would make me feel like crap for a while. Then I got a skin infection that took a while to heal. I could've avoided it all by not itching my eczema and now that trip keeps getting pushed back as my body just keeps getting thrown off the cliff.

I really miss that month in between where the T was back to normal-ish. No idea why it came back... still don't know if it was the Bactrim DS. It is odd to me that it started 2 weeks after stopping the medicine and not while I was on it daily for a month.

 

[Telis]

Save yourself the time and frustration, just don't explain it at all. I spent months trying to inform family and close friends. For the most part I found that they thought I was weak, or thought I had mental issues. Or, I got the same well meaning standard advise...saying things like "at least you don't have cancer or something serious". People I told at the beginning think it's weird it is still bothering me. Or that maybe I'm just dwelling on things, and it's time to move on.

Now I come here if I need to relate to others.

I still see family and friends, I just leave tinnitus out of it.

 

[Mal]

I try not to get annoyed when people can't understand why I am depressed. My famile and friends have known me for so many years, and since my tinnitus onset I have simply become another person. Of course it must be weird to observe that from another perspective, but I also believe that in times like these we will naturally seek out other people.

Theres always a motive for keeping in touch with others, and I have learned that I simply cannot offer them back the joy, that I used to. The contact to some family and friends have slipped a little out because of this, and I expect to lose these bonds in the future. My new person will though find other people (maybe other tinnitus sufferers), because we would share a bigger empathy and understanding.

Thats why I try not to blame other people for not connecting so well to the 'new me'. However, I also hope that they accept, that I can no longer give them the person, that I used to, and that they dont remember me as someone, who just ditched them for other reasons.

I dont think, that non-tinnitus sufferers can understand the effect of tinnitus, and I dont think, that it should be a goal for us to make them understand.

 

[gary]

hmmm..for me depends on who I am telling and how much I want/need them to know.

If I am telling a close friend family member etc I would just be honest and say that you have damage to the inner ear and auditory part of the brain and that this results in a constant and unsettling noise that you hear all the time that makes you feel - insert whatever you feel - (sad/depressed/frustrated/unable to concentrate/anxious) If they still don't "get it" ask them to imagine having two people standing either side of them blowing a whistle loud into each ear every second of every day for the rest of their lives. (I used that one before and send to make the horror of it sink in for people)

If I am telling someone who just needs to know the basics I will just say I have inner ear damage that results in a loud ringing noise and that I have to be very careful around noise so as not to make it worse.

If you really want someone to know how it feels download some tinnitus sounds on the net put them on your ipod and ask your love one to put it on for an hour and try and go about their daily life....gives them a little taste of it :|

Cheap & easy. Take a FM radio, tune to where there is no station, put speaker by person ear, turn up volume until they can barley here you. Tell them this is what people that wear maskers have to listen to just block out most of the the tinnitus noise. That white noise alone usually then gives them a pretty good overall idea...

 

[Telis]

I want Zachery's T ... i couldn't hear anything ...

Yours is probably is the same if you couldn't hear anything, it matched and overlapped the frequency which yours is at.

 

[gary]

No one, but no one gets it unless they have it, and that im afraid is a fact !!! my friends and family have seen me on my knees crying. they've seen me have panic attacks, they've heard me talk about ending my own life ... and they still blurt out stupid f>>>ing things like, there's a live band on tonight do you fancy it????? we're going to the circus, do you want to join us??? there's a brass band playing tonight come with us it'll be fun ??? i could literally f>>>>ing scream, are they all daft ? is everyone really so damn insensitive?? I often ask myself it was them with T and not me, would i be just as stupid as them ? would i be doing ass hole things around them ? suggesting nights out that if zapped they would try and end their own life ??? i don't know the answer, maybe i would as i wouldn't know just how debilitating this stupid affliction is. I know that if i saw someone sitting in a wheel chair with no legs i wouldn't ask them if they wanted to dance ... or ask a blind person have you seen my keys !!! everyone in my life just pisses me off ... rant over !!

Hi Carol "No one, but no one gets it unless they have it" If you did not have it then yes, you likely would ask someone with T to go out to try and cheer them up. I think those people are trying to help in their own way. I have been through the same thing with friends, well meaning but they will never get it.

 

[carol kane]

Yours is probably is the same if you couldn't hear anything, it matched and overlapped the frequency which yours is at.

No!!! Telis, i could hear mine but when is was played i couldn't hear it as mine was louder...

 

[valeri]

Last year during my performance review at work, my boss said that my t is "an old news"!!!!!!?????

My jaw dropped, I was soooo dissapointed.

I still make an effort to go to work, never missed a day even on days when I feel more like dying than working, and that's what I get.
I still do my job as best as I can, most people don't even know about my t, but she had guts to call my suffering "an old news"!!!

Just to tell you what some people are like!

 

[attheedgeofscience]

Last year during my performance review at work, my boss said that my t is "an old news"!!!!!!?????

My jaw dropped, I was soooo dissapointed.

I still make an effort to go to work, never missed a day even on days when I feel more like dying than working, and that's what I get.
I still do my job as best as I can, most people don't even know about my t, but she had guts to call my suffering "an old news"!!!

Just to tell you what some people are like!

In most countries, tinnitus and hearing loss is not recognized as a disability. The employer is therefore not required to pay special attention to such handicaps, as I am sure you know. As I see it, the "fault" therefore - in severe cases of tinnitus - lies more with the health authorities, than with the employers. Which is why the modern world of equality is still not so equal, perhaps. For one, I have had tinnitus since birth/childhood, and at this point in life, I have - as an example - probably taken around 60 four-hour exams throughout my school/university period. Should I have been awarded the same benefits that someone with dyslexia would been given? I honestly don't know the answer to that question. But I do know that the world is not always fair. And that's the way it is.

Veterans do get disability for tinnitus and hearing loss. Whether such benefits should be extended to civilians is an area of controversy, I suppose.

 

[Marlene]

Let's hope your boss is never on the receiving end of getting tinnitus hey,no one immune to it like everything else health related in this life..I'd give her Old News ,nerve of the woman,to even say it.Never you mind about likes of her.not worthy to be in your air space as far as I'm concerned,with her comment.now people like that get my shackles right up.Keep your chin up.X

 

[valeri]

@attheedgeofscience

My intention with this post was to show how insensitive people can be towards us who are suffering from t.

I have never expected to be treated differently or intended to seek any form of compensation.

This was a pure example of human stupidity and inability to show compassion and understanding.

 

[RaZaH]

Its impossible , one of many frustrations with T that are best abandoned.

 

[attheedgeofscience]

My intention with this post was to show how insensitive people can be towards us who are suffering from t.

Understood.

I am not a mind reader, however; I can only interpret what people write, and since you wrote...

Last year during my performance review at work, my boss said that my t is "an old news"!!!!!!?????

...I am assuming - and for good reason - that you brought up the topic of tinnitus yourself at some point during the review eg. in defense of critique from your manager, or otherwise. Bringing up a non-recognized disability is putting the manager in a difficult situation. So again, as I see it, the problem does not really lie with the manager, it lies with the "system", if you like ie. if tinnitus was recognized as a disability, then you could bring it up with the legitimacy it deserves.

I mainly joined this forum to provide other members with unique insight from the world of medicine (I am at the very forefront of experimental tinnitus medicine: clinical trials, off-label drug use, stem cells, brain-surgery, etc.). Once in a while, I respond to unrelated posts in order to give some perspective - such as the financial insight I have provided this board with the other day in the thread IPO Auris Medical. Others may not always agree with what I write, but then again, I never joined this board to win a popularity contest. For that very reason, you can be sure that my posts always reflect an unbiased, honest, and objective point-of-view. And as "uncharming" as those three traits may be, I think they are nevertheless important.

I wish you well.

 

[carol kane]

Last year during my performance review at work, my boss said that my t is "an old news"!!!!!!?????

My jaw dropped, I was soooo dissapointed.

I still make an effort to go to work, never missed a day even on days when I feel more like dying than working, and that's what I get.
I still do my job as best as I can, most people don't even know about my t, but she had guts to call my suffering "an old news"!!!

Just to tell you what some people are like!

Valeri, my point exactly ... what a dumb ass bitch of a person, let's hope she becomes old news and pisses off. X

 

[Marlene]

Valeri's so called boss is another of life's bullies,there out there in droves,it's how they say things to people,to me that's a type of bullying,two types ones who do it behind closed doors,others who do it for show.Call them truly sad,
What goes around comes around,maybe tinnitus will come along and bite Valeri 's boss in her backside one of these fine days.

 

[all to gain]

I explain it like this:

Imagine you are sleeping. A fly is in the room and keeps buzzing near your face. You try to swat it away, but it is always there. It keeps coming back and back and never goes away. It torments you. Eventually, enough is enough. You get out of bed and kill the fly. You then go back to bed all happy and snug. You fall back to sleep.

That's like tinnitus EXCEPT the fly is in my head, and I can never kill it. My torment is forever.