Things People Say When You Tell Them You Have Tinnitus

I feel very sad to hear this. I think about you sometimes, because I remember talking with you before here on Tinnitus Talk. Tinnitus is a day by day, hour by hour affair to deal with. I don't know how much this means to you, but I believe you can go on, since you have made it this far. I sincerely hope you will have better days ahead of you.

 

"That's a real bitch, mine drives me crazy sometimes" is a thing I hear with some frequency.

But I hang out with people who do loud stuff.

 

I sometimes get, "it's just tinnitus", or "I know this person or that person with tinnitus and it's no big deal". Of course, those people have tinnitus that is barely there "in quiet rooms". If I had to seek it out in quiet rooms only to hear it, it wouldn't be a big deal to me either. One person said, well at least you're not on the street and broke. Honestly, I'd take that over 24/7 tinnitus. At least being broke can be overcome. I think that's the main difference between tinnitus and other problems including many medical problems. Most problems at least have something you can try to make it better. Tinnitus just does whatever the heck it wants. We all hope it goes away or improves, but there is nothing we can do to usher that in.

 

A friend told me to eat red cabbage. Thanks.

 

Well unless people suffer from it, finding a truly understanding person is difficult.

So today I saw a world renowned neuro/otologist at Massachusetts Eye & Ear. And by world renowned I mean that he is an educator and speaks at national/international conferences etc. Very nice man. He told me that everybody, and I quote “everybody” who has hearing loss has some degree of tinnitus. And I countered that with the fact that my father doesn’t, and he has profound hearing loss and has bilateral hearing aids and he still can’t hear even with those hearing aids. So I’m not sure that was 100% accurate. My dad must be one of those people who can only hear tinnitus in a sound proof room. That said, he basically told me that there is no correlation between the amount of hearing loss you have and the loudness of the tinnitus as one experiences it, because of course, I’m concerned that as I continue to lose hearing as I age, my tinnitus is only going to get worse as it already has, and I asked what to expect. But he did spend a fair amount of time explaining to me that my anxiety around the tinnitus is making it worse. And although he’s ordered a bunch of tests to rule out an acoustic neuroma etc., his final verdict was my left ear is damaged for reasons we may never know. He said that damaged ears have fluctuating hearing, and that it is not uncommon for hearing to get worse, then better, then perhaps worse again. I should’ve asked him if he had tinnitus. He seemed to be about the age where he would have some age related hearing loss. I think I’ll put that on my question list for when I have my telehealth visit with him following my brain MRI.

I left with a referral to a mind/body specialist. I’m not saying it won’t be helpful, but the one thing that was clear, and this from a neurologist, there is not a damn thing that medicine can do to help tinnitus. Not that this was news to me or any of us on this forum.

One other thing he said that I thought was interesting is that typically, it takes about two months for the brain to register that there has been a shift in hearing, and for the neurons to start firing and create the tinnitus sounds.

 

That's not all of it. I have chronic prostatitis now and I am in pain every day. Painkillers make my tinnitus worse. I can't take anything for pain. Then I need to be on a long course of antibiotics, Doxycycline or Ciprofloxacin (both can cause or worsen tinnitus). I can't take any of them. I have made it until now but I don't think can push any further. I can't take ototoxic medication. I am not in a position to experiment.

 

Hi @BrStan@!

Have you heard of Kratom or Kava Kava? They are both natural painkillers. I am currently trying Kratom for my chronic back pain and migraines. I'll update if it works.

 

I'm wondering if I'm going to be able to, with how it's going today. I am in a job search, with several debilitating symptoms going on at once, but I need to make money. The symptoms I have are, like the tinnitus, invisible, so I get a lot of the reactions that people get to invisible chronic illness, like "but you look fine!" And they wonder why it would affect my working...

Hope we all get some help sooner rather than later!

 

One of my friends told me, "Oh, I couldn't" [bear this].

Which is probably the most annoying answer I could think of. It's not like we have the choice.

 

"Oh, I have that too"

I had low level tinnitus too for many years. I only recognize what it was now. It was very slight and not at all intrusive. When people say that I play a recording of what I hear most of the time. That pretty much stops the conversation...

But really, what is anyone going to say? Before my tinnitus about 8 years ago, I would have had no sensitivity to this if someone said they had it, I like to think I'm a generally empathetic person.

Fortunately, even though my tinnitus is quite loud, it really doesn't freak me out (it did in the first 6 months). People with other emotional/psychological issues seem to be the most affected, by FAR.

 

The most recent one I’ve gotten was “Are you sure it’s not a tumor?”

 

I used to have that all my life before the incident happened and I received as a gift this 5 tonal monster in my head.

I used to love the silence (the 0.2/10 tinnitus hissing) when I was going to sleep with or without my earbuds.

 

"oh [NAME], you're such a p*ssy"

Work colleague, after I returned to work from a week long absence, not having slept more than 30 minutes a day, and wondering if I ever would again, due to newly onset severe tinnitus.

"I mean, if we all took time off work just because of a little ringing..."



Doctor, refusing to provide my employer with a sick note justifying my week long absence from work, due to newly onset severe tinnitus.

 

A statement like that would make my blood boil till evaporation.

 

Those are doctors who have never suffered from tinnitus and do not know personally any sufferers.

I once met a doctor that totally understood this condition and knew that it can prevent people from sleeping etc.

 

lol

I see this a lot, but mostly on the internet.

Online doctors and health forums.

The minute anyone mentions "tinnitus" there's always a self taught forum scientist/expert (or legit Doctor even) to step in and declare:

"It could be an acoustic neuroma! You need to get it checked out immediately!"

 

I almost passed out with anger, @Stacken77.

But the look of outrage on my face when she said it, made it very clear to her she had made a big mistake.

As a result, she quickly made a compromise that didn't challenge her belief in tinnitus being a "little ringing", but didn't step on my toes regarding the issuing of a sick note for my work.

So the official reason for my absence was recorded as "anxiety due to tinnitus", which is inaccurate, but meant that I got paid for that week and didn't have to go through a series of interviews with my employer.

As you know, in this climate of ignorance, we take what we can get.

You've just described my long term doctor, @Juan.

In fact, I have had two extremely compassionate doctors in the past 13 years, who have been incredibly supportive and sympathetic toward my circumstances. Unfortunately one of them has recently retired, but the other (my long term/regular GP) does their best to understand the condition, despite never having experienced it themselves.

That's what means the most to me, and what makes them a Top 1% doctor; is the fact that although they don't/can't fully understand the illness, and what it's like to live with it, they listen and believe what I tell them about it.

 

Oddly, it's hard to find ENTs who put themselves in the patient's shoes and understand tinnitus. Most doctors would say "I can do nothing for you" or "you have to learn to live with it"...

 

Yes, clearly compounded ear problems like reactive tinnitus, hyperacusis, noxacusis, TTTS, ETD, patulous Eustachian tube, hearing loss play no role. It's just psychological issues.

 

1. Think about something else. You’re too focused on it.
2. My friend has that and he’s fine.
3. Sleep with the TV on. No big deal.
4. Be happy you don’t have cancer.
5. Have you tried yoga?
6. Your anxiety is causing it.
7. Maybe you should talk to someone about it.
8. It won’t kill you.

 

Go get “help”

 

If I had a dollar for every time I heard that one.

Another good one is “you still have it, it didn’t go away yet?”

 

The blank stare. And the look on their face is just something else.

 

Accurate.

 

This made me laugh out loud. Go eat some dates.

When asked why I have not recorded any new songs since May and I explained why the response was "I literally could not live without my music". I almost said "is this a bonding moment or is that a suggestion?".

You can't make this shit up.

George

 

Just the other day, "Das (Tinnitus) habe ich auch, aber ich bin halt nicht so eine Heulsuse* / I've got tinnitus, too, only I'm not such a crybaby* about it."

After asking about loudness and frequency it turned out that this person's ringing comes and goes (sometimes even for months) and - drumroll - can be masked by breathing a little more deeply.

*The crybaby remark pissed me off the most, because I only talk to people about my tinnitus if they explicitly inquire about it.

 

Not something people say, but that whole exhaustion of patience with an attitude of... "ok I felt sorry for you for x months now, back to real world problems" and the whole lack of awareness from close people that their lives are not like yours where they actually get peace.

 

I have very severe tinnitus and total hearing loss in right ear, with hyperacusis in left ear. I have tried to explain what I am dealing with to my closer friends. I have a tinnitus app that I have played for them on my phone that pretty closely mimics the hissing, static, idling 737 noise inside my head 24/7 and they give me that wide eyed look and say something like... "Holy hell, how do you live with that?" Which usually finds me replying with... "Uh, because I really don't have much choice?" And then I just love it when a few months later one of them will say... "Hey, do you still have the thing with your ears?"

 

They’re insulting you off the heavy assumption that your tinnitus experience is like theirs, which doesn’t make any sense.

 

That one is an all-time favourite of mine, too. Sigh.