Act Now What Do Doctors Need to Understand About Tinnitus?

1) Don't tell me to just live with it, there is nothing we can do. There is no living with it. It hurts. It changes things. DO something, keep trying, keep thinking. Keep working with me on it. Come up with something new, no matter how far out of the box it is. Be my Dr. House.

 

For ENTs: They should be able competent enough to recognise patients who are presenting with hyperacusis and/or acoustic trauma in addition to tinnitus. They should also understand the dangers (as shown in research) of performing microsuction on anyone let alone this subset of patients and, as such, avoid it. Keeping up to date on all research that relates to the auditory system should be mandatory if they want to continue practicing medicine.

For audiologists: they need to understand that they should avoid invasive hearing tests on patients presenting with tinnitus, hyperacusis and acoustic trauma.

 

I'd tell them to give their head a shake, and figure it out!

 

They should know that tinnitus kills.

 

1. Tinnitus is not a mental health problem.
2. Keep up with research, at least if you claim to be a tinnitus specialist.
3. "You will get used to it" doesn't work for everybody. Even if hearing sounds is not directly life threatening, it can and does kill. Comparing tinnitus to cancer and other potentially lethal conditions may be meant to be reassuring, but can be a slap in the face of tinnitus patients by invalidating their suffering.
5. Ototoxicity is underrated.
6. I know it is kind of a Catch 22, because certain tests can be beneficial to get closer to the root cause, but be aware that they also can worsen tinnitus/hyperacusis, even if "children undergo these tests every day without any issue".

 

When the ear infection became serious the doctor said "I don't see anything wrong with your ear."

Maybe he slept through causes of ear infection 101.

 

One of the doctors I was seeing, but has since retired, was committed to my health, and would go to bat for me, if needed to get the treatment I needed.

That's what I'm looking for in an ENT ideally. Someone that cares and is committed to help all the way. Not just dismiss me with "there is no cure".

 

Well... I guess no one is satisfied with the actual universal treatment we get for tinnitus, the all time famous "you'll have to live with it, 50 bucks please (if polite enough)"

There's something called the Hippocratic Oath that is well forgotten by most of the doctors I/we all cruised by (especially ENTs).

We know, now, that there's is no cure, no treatment and only some "esoteric ways" to alleviate our suffering a bit, BUT WE ALL deserve empathy, care, consideration, no trivialization, and, at least, advice.

I gathered all the things I know on tinnitus and hyperacusis from this fantastic community.
How is it possible that none of the "health professionals" I cruised by didn't tell me something, if not comforting, at least useful on my "health condition"?

If the statistics are correct, each and every ENT in the world has to deal with a patient with tinnitus several times a day. I can't believe we still face the abysses of void in the eyes of doctors when we say "I have a ringing in the ears, doc". I'm shocked every time I read on Tinnitus Talk that someone has "suddenly become" mentally ill at the moment he dared to speak about his suffering.
If the Inquisition was still in place I guess we all would deserve to be burnt alive...

Doctors do need to understand that tinnitus and hyperacusis are life changing, with a large scope, and has ALWAYS some kind of impact on someone's life. Our suffering may be exacerbated in the acute phase but that doesn't make our pain unreal or "mystic".

So, to answer to the question, I'd be happy if the doctors understood ALL about tinnitus but, at the moment, "A TINY BIT" would be quite an achievement.

 

I pretty much agree with everything said until now.

I want to add that they should trust us that what we're feeling/hearing is real. How many of us have to suffer until we get recognized? How long do we have to battle this?

It's so incredibly frustrating. And if you do get frustrated you just get sent to a psychiatrist. You asked me what my problem is, then you deny it. I am from East Europe and I am willing to take a bet it's not better in my neighboring countries either.

I wish society in general was more aware of tinnitus and hyperacusis.

 

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

 

My tinnitus got worse. GP’s comment: “I wouldn’t like to have it, it drives you mad”!!

The usual ‘advice’ was that you have hearing loss so get hearing aids.

 

I wish they had understood and conveyed that tinnitus can and will get worse if you are not very careful. As much as it is annoying and bothersome when you are initially struck down with tinnitus, it is nothing in comparison to what it can become if you are not very careful... it can actually end up killing you...

I was sent off after being told to resume my life and learn to live it... which is what I did... and now paying dearly for...

 

I realize now that I have tinnitus that I am the only one in charge of my health.

Doctors are overrated, and once damage has occurred to the ears, doctors are of little to no use. My doctor trivialized my tinnitus, while my ENT gave me a mixed look of horror and sympathy when I told her about my tinnitus. My sleep issues, and overall decline in energy was written off as "anxiety" and "depression" not stemming from my severe tinnitus. I have a new doctor and she wants to test me for sleep apnea.

I just don't think that they understand how truly disruptive this can be. My doctor would remark at my visits that, "You don't look very happy." I would tell her that she wouldn't be either if she were in my shoes. She pushed antidepressants on me that she knew I didn't want to take. Thank God that I have healed naturally by his grace.

When I first developed tinnitus I went to the ER. No mention of prednisone even though the doctor believed that it was a result of "inflammation".

I was reassured by many doctors that it would go away. It was only my ENT that thought otherwise. She said, "Maybe it will, maybe it won't."

I've literally educated my doctors, and I don't think they feel comfortable when that happens.

 

One ENT/Neurologist I saw told me that I was over reacting and that I needed to just relax. She insinuated that I had a mental health problem, not a tinnitus problem, because I was unnecessarily distressed about a loud ringing in my ears...

I wish they had more compassion and understanding. They clearly don't have tinnitus and can't relate or they have a minor version and think that is what everyone has.

 

That it's horrific and devastating.

The ENT said 'everyone has tinnitus'.

Which is bullshit.

I had to wait three months for an appointment that lasted two minutes.

Totally dismissive.

 

(Sorry bit off topic)

I was extremely lucky. I told my doctor I had tinnitus and the potential things that could be done to minimise its impact - thanks to you guys on Tinnitus Talk.
He had never heard of some of them, but was incredibly keen to help me, and even said, "I'll quickly research it and call you back."

Thanks to him, I know I done everything in the early stages that I could have. I guess I got extremely lucky there.

It was certainly a much better response from my doctor than the response I received from the demeaning ent specialist at the hospital who, when I said I could stop my pulsatile tinnitus by pressing on my neck, replied -"well there's your solution then."

Needless to say I walked out the hospital crying my eyes out...

 

I wish my ENT had told me to take time off the job to get into a quiet environment. Also I wish that he had sent me directly to the hospital for infusion therapy of some sort.

 

1989 (before internet) when I first noticed my slight ringing, I went to an ENT. He said I had high end hearing loss and nothing was mentioned about 'exposure to loud noises'.

A year later my tinnitus came full blast. I went to the library and researched 'tinnitus' - BAM! Found three books that referenced 'tinnitus'.

First thing avoid exposure to loud noises. If only had I known to ask or he could have at least told me about exposure to loud noises and tinnitus.

Doctors need to give more information to their patients!

 

I found out my ENT graduated from Univ Central Del Este (Uce) - Esc De Med - San Pedro De MacOris medical Dominican Republic school. I sure wish there was internet in 1989.

 

A required training for ENTs should be they have to download one of these tinnitus sound apps on their smart phones that mimic the different sounds of tinnitus, select one of the tinnitus sounds, like oh... the sound of an idling 737, turn the volume up a bit, and then strap the phone to the side of their head (or ear buds), covering one of their ears and spend the entire day with that crap blaring in their ears while they try to do whatever they do. They should have to do that for just one day. Maybe even go to bed and try and sleep with it turned on.

If they survive one day/night with that kind of treatment, THEN, they just might be able to commiserate with someone who comes in with that look of desperation in their eyes complaining of severe 24/7 tinnitus.

 

@JohnFox

They wouldn't be able to commiserate, the privilege of knowing that the sound is only temporary would probably make them unable to truly emphatise with how utterly cruel this condition really is.

 

Very well stated, JohnFox:

Last year someone reported that during a Physician's Conference several ENT Doctors agreed to participate in an experiment whereby they sat around a table with headphones on that played typical tinnitus sounds at typically received volumes.

The longest that any one of them could last under this artificially imposed tinnitus was 9 minutes.

 

I wish they understood the finer details first and foremost. I’m aware that it’s near impossible to keep up to date with every single medical condition that is out there, but for something that supposedly affects 1-10, it’s criminal how little most medical professionals know about it. This even includes specialists and audiologists. I was told by one ENT I saw that it was clear I knew more than he did! I thought it was very honest of him to be so upfront, but that doesn’t exactly help the tinnitus patients, does it?

It’s an ongoing mystery as to why all the professionals are stuck in the dark ages. If one actually does manage to find someone who will talk about it then it’s almost certain that they will regurgitate information that is decades old. It can be rather insulting when the realisation hits you that you most likely know more than the expert does. Most of them still use Jastreboff’s neurophysiological model of tinnitus from 1990. How has the clinical side not caught up with the current research yet? It’s mind-blowing.

A&E (ER) Drs also need to be more aware of acute acoustic trauma so that people don’t slip through the net in cases that may be treatable.

It’s clear that under-funding has led to negligence regarding this condition and this needs to change. We actually had a bit of momentum building up in this regard and then the coronavirus was dumped upon us. It is crucial that Drs receive better training, and more awareness is paramount.

 

I think ENTs should have a comprehensive checklist of items to check that may be connected to tinnitus or hyperacusis, including TMJ, neck issues, posture issues, noise damage, etc

It would also be helpful that doctors clarified from day one that hearing issues take a long time to resolve or change, that the timeframe we are looking at here is a minimum of 6 months, one year, to see some changes. In the best case maybe 2 - 3 months... otherwise patients just freak out because they are not prescribe any drug or therapy that can help them deal with tinnitus or hyperacusis, and no one tells them these conditions evolve incredible slowly.

I would also like to stress that doctors should avoid pitfalls, like ordering batteries of tests that can produce further damage and don't provide any answers, like an MRI, evoked potentials, acoustic reflex test etc If a patient never had tinnitus and says "I was exposed to this loud noise and now there's a ringing" -- this is just noise damage... so maybe it is best just to wait 6 months before ordering intensive testing that gets nowhere.

Another way to look at this conditions would be like a "reverse diagnosis", so instead of saying "let's do these tests and see what we find (MRI for instance)" they could look at audiograms and evaluate what the patients are saying about symptoms and then say: this could be these 4 things (diseases or conditions, or root causes), and out of these 4 possibilities, this is the likeliness for each of them. And then the patient decided whether to go for further tests.

Because ordering an MRI "to rule out a 0,5% chance of acoustic neuroma" for a patient with very likely cochlear damage due to noise exposure is just nonsense... and this is standard practice in many places.

 

Yes, you can learn to live with mild tinnitus. But what on earth do you do when it suddenly becomes 20x worse, it wakes you at 3am every morning, you develop hyperacusis, ear pain, TTTS, you can't do the washing-up without earplugs, you can't enjoy your favourite music, your family doesn't understand, and you are scared to leave your bedroom?

(There are actually many things you can do, but a doctor needs to understand and know how to address each of these symptoms without implying that you're crazy.)

 

1. Prednisone prednisone prednisone! I was shocked my ENT had never heard of this as an option for treating ear-related traumas.

2. "You'll just have to learn to live with it" is devastating. My ENT did not seem to grasp (or even come close to caring) that I was at a level of distress that was near suicidal. He just recommended I 'stop thinking about it'. The irony is that he is partially right in that anxiety exacerbates tinnitus, but the "you have it forever" line gave me more anxiety than anything else. It's better to emphasize the development of possible future treatments to give the patient some semblance of hope.

3. Don't assume a patient is wrong just because they don't have a medical degree. This is the main reason I doubt my ENT (or any of the medical professionals I've been to) would listen to a podcast on tinnitus. My dentist said TMJ and tinnitus aren't related. My ENT didn't know how prednisone could be used in ear-related trauma. It's very cynical, but I believe a lot of these professionals become complacent once they achieve a position of status where they're the most educated person in the room, and they use that as an excuse to not research their area further or keep abreast of new developments. Any patient who presents an idea they haven't heard of must have been browsing web MD too much.

A little negative for me, but I was very frustrated with my experience in the medical industry. Even moreso considering it was a nurse giving me an ear wax removal process that kicked off this crazy train of ringing. Back to being positive.

 

You have to educate the system, not the doctor.

 

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 couldn't agree with this statement more.

 

1. Prednisone can save lives.
2. Just because it's mild/moderate does not mean it's easy to live with. Every tinnitus is s..t, just the size of it differs.
3. It's not psychological, it's physical.