What Do You Wish Your Doctor Had Told You?

[LendMeYourEars]

Hi all,

I'm an audiologist with a large ENT practice and am in the process of rewriting the handout we give to our tinnitus patients. I'd love your input as to what you might like to have included in such a document. Is there anything in particular you wish you had been told? Any resource you wish you had been recommended?

I appreciate any and all input.

Thanks!

Best,
Max Gilbane, Au.D.

 

[Athens]

I would have liked to have been given some treatment options such as a reference to working with an audiologist with TRT, using hearing aids, and also CBT with a therapist. It would also be helpful to reference that some people improve without any treatment over a period of time. One ENT that I saw just stared at me and said "people really struggle with [hyperacusis] and I have no treatment for you." When I mentioned sound therapy with an audiologist, the ENT just stared at me and said nothing in response.

 

[Rockman]

I really wish at onset they would have said to stay away from loud noise for a few months. I was told just to live on as normal. But wear earplugs for mowing or other yard work. I'd rather been told to hire someone for the time being.

 

[Snake]

1) Protect your hearing.
2) Don't use headphones.
3) If it's the beginning, get steroid treatment orally or I.V. at the hospital.
4) If you encounter another acoustic trauma and your tinnitus get worse, get steroids.
5) Check every medication you take with your doctor whether they are ototoxic.

 

[Michael Leigh]

It would be a good idea to advise people that have noise induced tinnitus, to be careful of exposure to loud noise even after they habituate. If they decide to use headphones, earbuds, or headset to keep the volume low.

If I were writing the document to give to tinnitus patients I would go further. Based on many years experience with noise-induced tinnitus, corresponding and counselling people with this condition. My advice would be not to listen to audio through any type of headphones even at low volume, as there's a risk of making the tinnitus worse.

Not everyone with noise induced tinnitus will be adversely affected by headphone use but many are. Please type headphones in the search box at the top of this page and read the posts.

Michael

 

[Aussie Lea]

1. Avoid loud noise for the rest of your life
2. If you cannot do 1), then protect your hearing with adequate hearing protection
   
3. Research medications for ototoxicity before taking them, assume your GP doesn't know shit about this
   
4. Be aware that it can always get worse, so much so that you end committing suicide
5. And if it gets worse, you can also get hyperacusis or noxacusis which take all joy out of your life as well
6. F*#! Pawel Jastreboff, worst scumbag there is, never stops victimizing tinnitus and hyperacusis sufferers
7. Never trust an audiologist, their sole purpose is to sell you $8,000 hearing aids
8. Do not listen to @Michael Leigh, listening to headphones at low volume is as safe as it is on speakers

 

[Pistolpete]

Ask if the patient is experiencing:

Insomnia/sleeping problems
Anxiety
Catastrophic thinking

If so - any of these things should be dealt with instantly. It's really important to try to avoid the onset of a potentially chronic fight/flight-response as well as the patient being obsessive about his/hers tinnitus, which for SOME could lead to a major worsening of the condition.

Others might disagree, but I'm living proof of the fact that a faint sound can develop to something way more loud and intrusive if you literally lose your mind when experiencing onset of tinnitus. Obsessing and anxious.

Please advise the patient to try to continue everyday life and to not obsess and ruminate.

Be aware that it can always get worse, so much so that you end committing suicide

The worst thing you could say! And there are examples of ENTs and GPs who have said this.

 

[Damocles]

1. Avoid loud noise for the rest of your life
2. If you cannot do 1), then protect your hearing with adequate hearing protection
3. Research medications for ototoxicity before taking them, assume your GP doesn't know shit about this
4. Be aware that it can always get worse, so much so that you end committing suicide
5. And if it gets worse, you can also get hyperacusis or noxacusis which take all joy out of your life as well
6. F*#! Pawel Jastreboff, worst scumbag there is, never stops victimizing tinnitus and hyperacusis sufferers
7. Never trust an audiologist, their sole purpose is to sell you $8,000 hearing aids
8. Do not listen to @Michael Leigh, listening to headphones at low volume is as safe as it is on speakers

I just keep reading 4 and 8 and thinking: what if it turns out you're wrong...?

Also, how do you expect your doctor to know @Michael Leigh?

 

[nogg]

Some things I wish I had known:

Avoid all impact noises without using good protection. Don't use a hammer or any equipment that generates a repetitive impulse noise without excellent hearing protection: the best earplugs and earmuffs.

Impact (or impulse) noises include things like the bark of a small dog. Try to avoid them.

Try out many different earplugs to find the ones that work best for you. Just like shoes, it takes the time to find ones that protect well and are comfortable.

If you are in any environment where you must raise your voice to be heard, use earplugs. It is too loud.

Don't allow a barber to use electric clippers. When next to an ear they are far too loud. Always tell a barber to use scissors only.

Tell a dental hygenist to NOT use ultrasound to clean teeth. Do it the old fashioned way instead using a pick. It works fine.

Get used to sticking your fingers in your ears for protection for unexpected, short-duration loud sounds. Don't be embarrassed by doing that.

Just because up to 85 dBA is OK for people with good ears it doesn't mean someone with tinnitus or hyperacusis can tolerate those sounds without damage. It might not make your hearing worse, but it sure can make the hyperacusis or tinnitus worse.

Unless absolutely necessary, don't undergo any tests that involve loud impact noises, such as an MRI. An ENT gave me a test that involved wearing headphones as I listened to a series of clicks. It sounded ok at the time, but afterwards I found that it made my hyperacusis permanently worse, and environments that I had no problem with were no longer tolerable. But ENTs will tell you that those things won't cause a problem, just a big lie or at the very least an exercise in ignorance.

People can often recover from a discrete noise trauma if they give their ears a rest from normal sounds for as much as a month. That includes not just loud exposures but lower continuous sounds like office noise. The advice of audiologist to just keep doing all your normal things is just clueless. There is an acute phase after a discrete noise trauma where full recovery is more likely. Miss that window and you will have a chronic condition.

Kitchen equipment can be as loud as shop equipment.

 

[Bambam0]

@LendMeYourEars,

1. Avoid loud noises for the next 3-6 months + no headphones.

2. There are studies supporting that Magnesium (400 mg) and Melatonin (3 mg) can help (among other things that are probably worth trying for patients AND that even if they don't work it's SOMETHING to try i.e. meditation, Ginkgo biloba, NAC).

3. The beginning is going to be difficult but over time you learn to cope better.

4. Support companies doing tinnitus research and spread the word.

5. Mask using white noise, rain sounds for sleep but right below the volume of your tinnitus.

 

[Rainer]

Is there anything in particular you wish you had been told?

Pure sine tones are to your ears what laser beams are to your eyes. Don't play with them unless you know exactly what you're doing.

 

[Matchbox]

Never ever mention suicide to patients! It will cause them to become desperate and risk making the tinnitus worse.

Don't bring up treatments you have no intention of pursuing like Hyperbaric Oxygen Therapy unless SSHL occurred.

Intratympanic Dexamethasone SHOULD be considered if the patient is severe based on masking levels.

Always, always, always tell them to stay away from loud noises, especially while on steroid treatments, and to taper steroids very gradually (moreso than usual). The tinnitus you hear is the damaged frequency, try to limit exposure to it (show chart of sounds in life and their basis of frequency).

Always, always tell them to not mess with it for at least two weeks! No random medication trials.

Bring up the use of white noise at low volume as an escape tool and for sleep. If having problems beyond a month, consider SSRIs / Melatonin for sleep aids. Consider very limited uses of benzos (if patient's tinnitus responds positively) on a 11/10 tinnitus day basis.

Foods to avoid "xanthines" should be brought up, as temporarily making ringing louder.

Review ototoxic medications and to limit exposure now that ears are damaged.

Ask the patient what they HEAR in silence/when wearing earplugs. If they complain about any other noises other than 4 kHz+ ringing/static then further testing should 'really' be pursued even if it the tinnitus is bilateral. Unilateral tinnitus should include MRI w/contrast of inner ear, ABR/ECoG/Air Bone Gap testings/blood workup for autoimmune panels, infections, standard cortisol/TSH, ferritin etc.

If symptoms include other auditory hallucinations, or visual ones, neurology should be pressured to consult.

No "if it isn't better by 72 hours or 6 months, it's permanent", make sure the patient knows people experience fading to silence of tinnitus OVER 6 months to 3 YEARS later. If the tinnitus worsens, encourage them to come back for further testing.

 

[Michael Leigh]

I just keep reading 4 and 8 and thinking: what if it turns out you're wrong...?

Also, how do you expect your doctor to know @Michael Leigh?

Well said @Damocles. There is no mention on @Aussie Lea's profile the cause of tinnitus and therefore, if it wasn't noise induced she will know nothing about it.

I do not want to derail this thread but would like to say:

I have said many times in this forum, it is mostly people that have suffered a noise trauma and developed tinnitus who are susceptible to it getting worse should they decide to listen to audio through any type of headphones, even at low volume after habituation. I have also said not everyone with noise induced tinnitus are adversely affected by headphone use but a lot of people are.

I did not arrive at this conclusion overnight or was suddenly struck by a bolt of lightning and see the light, quite the contrary. It is based on many years experience corresponding and counselling people that have suffered noise trauma and developed tinnitus with or without hyperacusis.

When I was a tinnitus support contact for a tinnitus organisation, people contacted me by telephone pouring their heart out because of the immense distress they were in with tinnitus. A lot of these people developed noise induced tinnitus from listening to audio through headphones, earbuds and headsets at too high a volume.

Many had successfully habituated for a year or more and were able to carry on with their lives and completely forget about tinnitus, until they noticed an increase in their tinnitus, often becoming more severe than when they first got it.

It was after a while I noticed a pattern starting to emerge. In the majority of cases, people that had noise induced tinnitus and habituated and then noticed a resurgence in the tinnitus, overwhelmingly it was caused by returning to using headphones, earbuds, or headsets even at low volume.

Michael

 

[Jerad]

I wish my audiologist had told me how bad tinnitus can get to make me realize how grateful I should've been back when it was more mild; mine was still maskable back then. I wouldn't hear it in an environment where the ambient noise was 40 dB. Still, tinnitus being new and all, caused catastrophic thinking, made me feel it was huge, and the worst thing imaginable. I had an obnoxious, low frequency hum that felt like vibrations in the ear, but it was still maskable and I couldn't hear it in most environments.

Now that my tinnitus worsened, I hear it everywhere and masking isn't effective. It now has an electrical, piercing quality where it's not just a noise anymore—it's a physical feeling, too. And it's painful, like electrical shocks zapping me frequently. It has literally reduced my life to ashes.

Had an audiologist told me early on, "You know, there's some people who can hear it everywhere, piercingly, with no ability to mask; in this very room, they'd hear it with no escape, no respite, a loud alarm...," then I think it would have helped; no joke, it might've put the whole thing in perspective for me. It might've made me realize I wasn't so bad off, as I would've compared it and sized it up to what they were saying. Early on, I think a lot of people—if not most—think their newly-formed tinnitus is catastrophic. It's important to suppress that thinking.

When the audiologist is lecturing a newbie on tinnitus, a little bit of scare tactics or a "fire and brimstone" approach might do some good. So that the person understands they need to be proactive and care for their ears. Most of the audiologists I've seen try to downplay the fear and assign anxiety as the cause of tinnitus.

Every time I say this or that caused it (a medication or listening to headphones, for example), the audiologist would say, "No, I don't think those are the causes. It's likely anxiety." And I knew for a fact what the causes were, based off what I had experienced first-hand. So it would be good for audiologists to warn about medications and supplements that can cause tinnitus, headphones, and being careful around loud noises, using protection when appropriate.

 

[Sentinel]

1. There are ongoing clinical trials for the condition.
2. Many causes despite hearing loss and noise insult getting the most press.
3. Address concerns without telling me to bugger off and put on a fan.
4. Literally everything @Matchbox said above.

 

[Safari1999]

Some things I wish I had known:

Avoid all impact noises without using good protection. Don't use a hammer or any equipment that generates a repetitive impulse noise without excellent hearing protection: the best earplugs and earmuffs.

Impact (or impulse) noises include things like the bark of a small dog. Try to avoid them.

Try out many different earplugs to find the ones that work best for you. Just like shoes, it takes the time to find ones that protect well and are comfortable.

If you are in any environment where you must raise your voice to be heard, use earplugs. It is too loud.

Don't allow a barber to use electric clippers. When next to an ear they are far too loud. Always tell a barber to use scissors only.

Tell a dental hygenist to NOT use ultrasound to clean teeth. Do it the old fashioned way instead using a pick. It works fine.

Get used to sticking your fingers in your ears for protection for unexpected, short-duration loud sounds. Don't be embarrassed by doing that.

Just because up to 85 dBA is OK for people with good ears it doesn't mean someone with tinnitus or hyperacusis can tolerate those sounds without damage. It might not make your hearing worse, but it sure can make the hyperacusis or tinnitus worse.

Unless absolutely necessary, don't undergo any tests that involve loud impact noises, such as an MRI. An ENT gave me a test that involved wearing headphones as I listened to a series of clicks. It sounded ok at the time, but afterwards I found that it made my hyperacusis permanently worse, and environments that I had no problem with were no longer tolerable. But ENTs will tell you that those things won't cause a problem, just a big lie or at the very least an exercise in ignorance.

People can often recover from a discrete noise trauma if they give their ears a rest from normal sounds for as much as a month. That includes not just loud exposures but lower continuous sounds like office noise. The advice of audiologist to just keep doing all your normal things is just clueless. There is an acute phase after a discrete noise trauma where full recovery is more likely. Miss that window and you will have a chronic condition.

Kitchen equipment can be as loud as shop equipment.

About that past point, does this mean that exposing yourself to loud noise in the first 2 weeks after onset will definitely mean I will develop a chronic condition? Is hyperacusis always chronic?

I'm 3 weeks into this which means I'm nearing the end of the acute stage, I assume. If I don't improve by the end of the 4th week, will this mean that, even If I eventually improve, I will be stuck with chronic hyperacusis?

 

[Sointu]

I was advised to live my life normally after acoustic trauma, just avoid going to cinema or to gigs for some time etc. After I lived my life normally, even used headphones a few times without knowing they could do harm, my hyperacusis got worse a month after the trauma and noises started to trigger pain. After I started to protect my ears when I felt like I needed to and gave my ears some rest, only then I noticed improvement.

I was said that it is not necessary to rest my ears or avoid sounds when my hyperacusis was at its worst. It was for me. Even when I experienced pain I was advised not to use ear protection in everyday life. Protecting my ears when I felt pain and felt like I needed to allowed me to make progress. I know that overprotecting ears is not good of course.

I also hope my ENT would not have used microsuction to clean my ears. I had a lot of earwax and my ears were cleaned soon after the acoustic trauma. My tinnitus did not like it and symptoms spiked. I hope my ENT would not have done this so soon after the acoustic trauma.

I hope my ENT would have said that some people do struggle with tinnitus and there is support available. I was struggling in the beginning but was just said basically "just forget it, it will most likely go away, concentrate on doing other stuff." Like it is a minor thing. Unfortunately this advice did not work for me and I was going through really hard time not knowing at all where to get support. It took time to find help.

But I am happy that not a single ENT I have met have said to me that my tinnitus is most likely permanent. It would be awful to hear, stealing hope from me. I still remain hopeful this would stop some day. They always have said to me tinnitus could stop some day or I can habituate to it someday. It means a lot to me! I need hope!

 

[Forever hopeful]

1. Avoid loud noise for the rest of your life
2. If you cannot do 1), then protect your hearing with adequate hearing protection
   
3. Research medications for ototoxicity before taking them, assume your GP doesn't know shit about this
   
4. Be aware that it can always get worse, so much so that you end committing suicide
5. And if it gets worse, you can also get hyperacusis or noxacusis which take all joy out of your life as well
6. F*#! Pawel Jastreboff, worst scumbag there is, never stops victimizing tinnitus and hyperacusis sufferers
7. Never trust an audiologist, their sole purpose is to sell you $8,000 hearing aids
8. Do not listen to @Michael Leigh, listening to headphones at low volume is as safe as it is on speakers

Well this isn't helpful.

 

[Forever hopeful]

About that past point, does this mean that exposing yourself to loud noise in the first 2 weeks after onset will definitely mean I will develop a chronic condition? Is hyperacusis always chronic?

I'm 3 weeks into this which means I'm nearing the end of the acute stage, I assume. If I don't improve by the end of the 4th week, will this mean that, even If I eventually improve, I will be stuck with chronic hyperacusis?

It doesn't mean that at all. I recovered from tinnitus after two years. It came back but for different reasons. Four weeks of tinnitus is very very very new. Hyperacusis takes time to recover from. You don't want to over protect but you should not expose yourself to loud noises. For sure rest your ears. Focus on sleep and self-care and not catastrophizing. The fear and anxiety can make it 20 times worse than the sound itself or the hyperacusis.

 

[Safari1999]

It doesn't mean that at all. I recovered from tinnitus after two years. It came back but for different reasons. Four weeks of tinnitus is very very very new. Hyperacusis takes time to recover from. You don't want to over protect but you should not expose yourself to loud noises. For sure rest your ears. Focus on sleep and self-care and not catastrophizing. The fear and anxiety can make it 20 times worse than the sound itself or the hyperacusis.

Yes, I've become very anxious over this but I'm finding ways to manage. Thank you for your reply.

Did your tinnitus completely go away? I honestly dont mind having very mild T but I also dont want to be reminded of my mistakes everytime I enter a quiet room lol.