What Do Doctors Need to Understand About Tinnitus?

[Ken219]

A bit more understanding as to how awful this can be.

I cannot sit in silence, it's gone. Silence may possibly not return... some empathy at least would be nice...

X

Kirsty, I hope you are doing well. 'Empathy' is hard for people that do not have tinnitus. I give you all the hugs of a not so understanding world. I pray for better treatments or cure. G-d bless, hope you are doing well.

 

[all to gain]

All doctors should be made to listen to the The Twilight Zone episode "Sounds and Silences" from 1964. It's literally about tinnitus and hyperacusis and the damage caused by noise.

@aot mentioned in a post, and it should be mentioned here.

Here's a radio version of it:



EDIT: Actually, I take it back, doctors shouldn't be told to watch or listen to that episode. I posted before I got to the end of it... he goes to a shrink and finds out it's all in his head

Not what we need...

 

[jeannie]

I wished my doctor knew just how intrusive and scary it was and how badly it affects our health. It has affected my nervous system; the first 2-3 doctors I've seen all said they have it too, and you just have to try to ignore it. Well, they obviously didn't have it the way I did, so they dismiss it as no big deal because you can't see it, it's just annoying. Mine was more than annoying. It was extremely intrusive and I had to quit my job.

 

[Michael01]

What I've been wishing for is something like "tinnitus house" where we could go, and have access to all the treatment and support we need without having to shop around ENT's to find a good one. Because if I could have accessed a good ENT from the start, I suspect that I'd be a lot better off right now.

 

[tpj]

This has already been mentioned but I think it's very important. I want doctors to know how debilitating tinnitus is. That it drives many people to think about or commit suicide.

 

[Hotspur2931]

1. Saying "it probably won't go away" is a knife to the heart of your patient and can send them into a panic that makes it louder and more permanent. The best thing to say to a new sufferer is that it can recede into the background if you take serious action to take your mind off it RIGHT NOW. All the things I learned about tinnitus came to me months and months in. If I'd known these things at the beginning I think I would have had a much easier ride.

2. Related to the above, EVERYONE who presents with tinnitus should be put into intensive counselling - with a specialist in hearing therapy - IMMEDIATELY. People spiral into depression and it can kill, not to mention being unnecessary. At the very least, do NOT let the patient walk out the door without giving them a toolkit of things to try and some clear direction. Very few people can navigate this all on their own.

3. Take it seriously and stop saying "there's nothing I can do" or "just get used to it". You're the doctor, there is ALWAYS something you can do. Even if it's just antidepressants. A person's experience of tinnitus can be GREATLY improved with good management and coping techniques. It is cruel and evil to tell someone to just live with it.

4. Be prepared to do further investigation. Some tinnitus can be fixed, if you can get to the root cause.

 

[Ken219]

All doctors should be made to listen to the The Twilight Zone episode "Sounds and Silences" from 1964. It's literally about tinnitus and hyperacusis and the damage caused by noise.

Most doctors lack empathy. They would say that is terrible and turn it off. It would be nice if they took the time to explain noise exposure and tinnitus, plus give you a set of earplugs. It would be nice if the doctor emphasized the importance of keeping away from loud noises.

 

[Isabella 123]

I wish the ENT I went to had been even remotely informed of anything about tinnitus and had at least one empathetic cell in his body. He was callous, condescending, rude and offered no help other than to keep my TV on all the time to drown out my tinnitus. I went out and sat in my car and cried so much I couldn't drive home for a long time.

 

[Ken219]

I wish the ENT I went to had been even remotely informed of anything about tinnitus and had at least one empathetic cell in his body. He was callous, condescending, rude and offered no help other than to keep my TV on all the time to drown out my tinnitus. I went out and sat in my car and cried so much I couldn't drive home for a long time.

Did the ENT at least explain the causes of tinnitus? Did the ENT say anything about avoiding exposure to loud noises?

 

[DaveFromChicago]

To Isabella123:

Whenever I have visited my ENT Doctor, all that happened was that the hearing test severely aggravated my tinnitus and I subsequently received the Doctor's flat out denial of any method of remediation.

When I got back to my car, my panic level was such that I had to swallow for a few minutes to counteract the serious urge to vomit. In order to drive home I had to turn up the volume of an unoccupied white noise band on FM that would mask the aggravated tinnitus.

 

[Isabella 123]

Not a word of information or encouragement. Just sat across the room messing with his laptop. "Wellllll. You have tinnitus. Nothing can be done about it. You just have to learn to live with it." He had looked into my ears and pronounced them fine. Then he said that thing about keeping the TV up loud and walked out.

 

[seekingpeace]

This is my first post and I want to give a little background before offering my two cents. My ears went berserk about 10 months ago after an acoustic trauma. This has made me as miserable as anything I've ever experienced, and I'd say it ruined my life for a while. The tinnitus continues to impact my life every hour of every day, though thankfully the worst of the hyperacusis has subsided and I am no longer panicking all the time. But what a misery. I've tried just about everything and seen every specialist possible. I have seen two ENTs, three audiologists, four psychotherapists, studied & practiced mindfulness meditation, had two audiograms, an EEG, taken anti-anxiety meds and a smattering of supplements, bought extra audio equipment to maintain a sound-enriched environment, plus a bunch of hearing protection to stay safe(r). I finally landed on a local tinnitus & hyperacusis clinic that finally gave an extended audiogram and diagnosed me with tinnitus, hyperacusis, tonic tensor tympani syndrome and misophonia, all triggered from that single event. I'm now starting my fourth month of TRT. I've spent upwards of US$6,000 out of pocket, so I have thought about what could have been done better.

Here's what I wish my doctor would have done:

1) Recognize that severe tinnitus/hyperacusis/etc. requires a multi-disciplinary treatment strategy, and help me organize it. It would have been tremendously helpful to have a designated medical person to coordinate my care, someone like the hospitalist who helps coordinate treatments when someone is in the hospital or has a serious illness. While some people may be minimally affected, those of us with serious problems like mine have REALLY serious problems, which requires a variety of specialists and information. I had to piecemeal my own approach based on the recommendations of the latest doctor I saw. Some freaked me out with their hopelessness, some gave me hope but couldn't deliver any treatment, and left me floundering. Most knew a little something, most cared, but all were isolated in their specialist world without an understanding of the bigger picture of what I needed, how to help, or what others could provide. And I needed a lot: mental health support, information on evidence-based treatment strategies and the normal course of recovery/rehabilitation, an extended audiogram, plus practical advice on how to protect your ears, and advice on how to avoid OVER-protecting your ears. Also knowledge of common treatments and quackery.

2) This is in the realm of fantasy: Provide insurance coverage for beneficial treatments like TRT. It's not a silver bullet, but it helps and gives me hope. It's just painfully expensive.

Aside from my tinnitus & hyperacusis clinic, this forum has given me the most help and hope. Ideally I'd like my doctors to be able to help steer my recovery and rehabilitation, but I am deeply grateful to all of the people who have shared their insights in this forum and filled in the knowledge that I can't get from my doctors.

 

[Zugzug]

Hazel, it is a good idea, but can you you ensure that a doctor would actually listen to this and not instantly delete it?

Unless we can get someone like Susan Shore or a past guest on the Tinnitus Talk Podcast to endorse it in some way? I mean my doctor and my audiologist have been very dismissive to such things as community-run forums on tinnitus.

I agree with this. This thread is loaded with valuable advice; every tinnitus and hyperacusis patient probably reads these comments and nods. But the core issue is that we are viewed as a bunch of crazies, despite being the people with the actual condition and totally in agreement. It's wild.

 

[BobDigi]

What can they do? There is no cure or treatment. You just have to get used to it or try a hearing aid.

Or try Prednisone.

 

[BobDigi]

For God's sake allow people to try Prednisone early. After all you don't face the prospect of intrusive ringing in your ear for the rest of your life.

So stop being as useful as a google search, allow people to try something that might help.
You know no more than i do do let me try something!

That is what I'd like to say to a doctor!

 

[etn_hopes]

1. Just how deeply depressing, threatening and life destroying this condition is when you have elevated tinnitus loudness level.

2. Intratympanic steroid injections should be the first line treatment.

 

[serendipity1996]

Another life taken too soon by this horrific affliction:

Tinnitus from pub gig made life unbearable for retired fireman who committed suicide

This article is from a few weeks ago (TW, suicide) - it's heartbreaking that nobody takes this seriously - in this case, it's clear that the doctors didn't treat him with any sense of urgency and apathy. This stuff can break someone - we need more empathy from the medical profession.

"She took him to the GP's surgery and demanded an emergency appointment. 'We wanted to see an audiologist but the GP said Glen would have to take a hearing test first – another two weeks away! He was just broken.'"

'He was given ear devices that generate white noise to trick the brain to focus on something else and was told to give them time to take effect.' Glen went back to work, but if there was a loud noise he'd have to go home. He stayed in and got anxious and depressed.

The tinnitus got worse and developed into hyperacusis, oversensitivity to everyday sounds. Linda desperately encouraged him to follow a normal life, like the doctors advised, but it felt like she was constantly bullying him.

Poor Glen's medication was changed in June and the new drug only made his tinnitus and anxiety worse. He had a referral to the mental health crisis team but everything was taking so long.

'At an appointment in July 2011, the GP said he just had to wait. I saw the light going out in Glen's eyes. I wanted to scream, "Can't you see he's suicidal?" But I couldn't bring myself to say the words out loud.

His widow is now trying to raise awareness of the condition amongst doctors and get them to take it more seriously.

 

[Keith Handy]

All I hoped for was to be pointed down some road. Given some kind of instruction for what would help or hurt. To be asked more details of the sound and behavior of the ringing. A pamphlet saying "lower salt/alcohol/caffeine" and "get exercise," "reduce stress," etc. isn't worth the paper it's printed on... that's just general health advice. And don't put me off for a full year before a follow-up. If you have nothing for me, help me find someone who might. Don't send your patient away with tears in their eyes.

 

[Keith Handy]

Relevant:

 

[Gman45]

My GP basically won't comment on tinnitus. Just sort of "yeah, that can happen". I told him it started after a concussion and he said that's odd. No advice.

My ENT was better. First he said my eardrums looked retracted and advised I take Prednisone and nose spray. Next time I did a hearing test. He quickly came to the conclusion my concussion triggered pre existing hearing loss tinnitus. Case closed. Nothing you can do.

My psychiatrist just wanted to talk about anxiety and Prozac. I let her know I was concerned about Prozac worsening tinnitus and no response. In fact, every time I would talk about tinnitus being my main problem and I need help coping, she just changed the subject.

I guess the doctors are quick to change the subject because there Is nothing they can do. I just wish they could really get to the bottom of tinnitus and help us have a game plan to treat or learn to cope. The worst thing Is dismissing your suffering or giving drugs that wont help it or maybe make it worse. I feel like I need a tinnitus doctor that really knows how to expertly advise what I can do, what exactly caused it, and help with managing it mentally even if that means just coming in to check out my ears and talk about it periodically so long as it's causing grief.

 

[star-affinity]

1) Do not miss the window of opportunity for steroids post acoustic trauma! It is your responsibility to offer your patient the chance to not live with deathly ringing/distortions/pain for life.

How long is that window if I may ask? I got my high pitched tinnitus and high pitched hearing-loss (probably at the same frequencies where the tinnitus is at) about one and a half month ago. Is there still time you think?

I agree that ENT doctors can be dismissive. Of course not everyone is the same, but the first I met after my trauma linked to above said "everyone has tinnitus — if people sit in a totally quiet room everyone will hear some noise from the ears" and when I asked if it was OK to play music all night while sleeping he said "as long as it won't wake up the neighbours" — somewhat jokingly I guess, but still.

I really wish the people working in health (I've been in contact with many) would react as soon as they hear people mention they have tinnitus and warn about masking with sound all night. Without letting the ears get a proper rest from sound and music (especially if there's also a lot of sound exposure during the day) it can make things worse and even trigger a new tinnitus which is what happened to me. This also includes listening to audio and music at volumes which are considered to me harmless even long term.

Tell people to:

•Set a timer if playing music to mask your tinnitus while going to sleep so playback stops after an hour or two. It's probably good to let the ears get some rest too.
•Remember to "listen" to the ears. If they feel "hollow" or "full" and/or starts to whoosh, take a more or less total break from sound and music until the ears start to feel normal again.

 

[Óscar PP]

I went to my ENT one week after onset, so the bastard should've given me Prednisone right away instead of telling me to learn to live with it.

Also they need to know that NOT ALL TINNITUS ARE THE SAME nor in loudness nor in pitch or type of sound, so not everyone can habituate so easily and it's not because of their "reaction to it" like Jastreboffs coping industry tries to push everyone to believe.

 

[cruise]

Doctors should understand that for many tinnitus sufferers there is a clear link between tinnitus and anxiety. They should understand that many tinnitus sufferers want to be helped with both the tinnitus and the anxiety.

 

[DaveFromChicago]

To cruise:
With all due respect, I have just about had it with your superior-than-thou, self-indulgent, sententious grandstanding (and the definition of "sententious" is "given to moralizing in a pompous or affected manor"; this fits you aptly).

For the life of me, I cannot understand your rationalizing, convoluted, tripping-all-over-yourself advice; given it's contradictory, unserviceable content, I cannot imagine how it could actually be realizable.

Your tone implies that "I was brilliantly successful in achieving a level of habituation that totally, in virtually every respect, resolved my tinnitus; why can't the rest of you do likewise? What is wrong with you pitifully lessor mortals?"

What concerns me about all of you ballyhooing apostles of habituation is that you regard it as necessary to remind us ad infinitum of how easily achievable it is, and thereby make me suspicious about the real results. I am reminded of a guy who was laid off, and how his wife would tell him that she had no problem with the fact that she was working and he wasn't; the only problem was that she would remind him about 20 times every week.

Or, this reminds me of what my psychiatrist would conclude if during a session I told him 30 times that there was absolutely nothing emotionally wrong with me (why would I feel the need to emphasize this to such a ludicrous degree). You also display an utter lack of compassion for those whose tinnitus reached such monstrous proportions that they have been incapacitated, or even taken their own lives.
What would you have said to Kent Taylor's family? (If you don't know who this is, Google him). "If only he had listened to me, and developed a method of totally annulling his perception of tinnitus from an emotional reaction to it (which directives would admittedly have challenged even a Zen Master), he would not have taken his own life."

 

[Rajin]

Most doctors want more people to get tinnitus to make more money. I stopped going to doctors for my tinnitus ... The only ones, in my opinion, who will care are doctors who experience it themselves.

I see a lot of new members here too, this is where probably the most help is.

 

[Athens]

My ENT was honest and told me not to really expect anything from TRT. That if one has hyperacusis, it gradually gets better and tolerance lessens. GPs need to simply stop blaming everything on anxiety and do their job. Most audiology clinics are incompetent and offer a bastardized version of TRT just to sell overpriced hearing aids.

What do you mean by "tolerance lessens?"

 

[IntotheBlue03]

Mostly, that the tinnitus was causing a level of distress that had me debating killing myself. Even though folks experiencing the worst kind of chronic, intrusive tinnitus seem to be relatively rare in the overall population of folks who have tinnitus, I'd want my ENT to understand that this population exists, and to be able to offer some compassion to them.

I am experiencing that kind of intrusive tinnitus and the indignity that we experience particularly with ENTs is unbelievable. That's why I'm so thankful for this community.

 

[DebInAustralia]

I wished my doctor knew just how intrusive and scary it was and how badly it affects our health. It has affected my nervous system; the first 2-3 doctors I've seen all said they have it too, and you just have to try to ignore it. Well, they obviously didn't have it the way I did, so they dismiss it as no big deal because you can't see it, it's just annoying. Mine was more than annoying. It was extremely intrusive and I had to quit my job.

Hi Jeanie,

I remember you from years ago. I am sorry you were forced to give away your job. Have things improved for you?

 

[Mister Muso]

Doctors need to understand that tinnitus can have multiple causes, sometimes in the same patient.

If the patient says it started after a noise trauma that caused them pain and temporary deafness, don't just examine the patient and tell them it's because they have Bruxism.

 

[jeannie]

I remember you from years ago. I am sorry you were forced to give away your job. Have things improved for you?

DebInAustralia, hi! No, I haven't been able to go back to work, I have neck issues and fibromyalgia as well.

Some days are better than others but still hoping for some tinnitus relief like everyone else on here.

I hope you are doing well.