An ENT Doctor with Tinnitus

Hello @brownbear .

If you have time, could you please describe how your own experiences with tinnitus has influenced your response to your patients who also suffer? I am just curious.

 

Hope you has as good a Christmas as you could. Here's to better days. Yes I'm interested in the Mutebutton as well. Trying not to get my hopes hope but to be honest I'd be interested in even a little reduction!

 

Hi @dougwarby. Sorry to hear you've struggled. Anxiety can certainly play a big part, but sometimes it's just loud and awful!

 

I'll get back to you @Lorac - still entertaining christmas guests that won't go home.......

 

Same. Something has to give. I can’t cope for years at this relentlessly loud and piercing level. I’ve tried to contact them about release dates but zero joy. I worry we’re looking at 6 more months realistically.

 

@Lorac. Sorry for the delay. I think I may have discussed this before but one of the things I have to be careful about is not projecting my own experience with tinnitus onto my patients. Bear in mind that almost no one I see seems even as remotely as affected by their tinnitus as I am (and those are the ones who are concerned enough to have made it past their GP). I'd say about twice a year I see a severe sufferer and I can spot the look in their eyes a mile off. I don't always tell them about my own experiences unless I get the feeling that they think I don't understand/care (I suppose to try to give myself some credibility if needed). I take these patients very seriously and see them more often than I used to I think (often, as in regular visits to review them)

Hope you are doing ok by the way

Best wishes

 

Do we have it louder, higher frequency, more relentless. What is going on?!? Do you discuss aspects of the noise with them! I’m at a loss to understand why I cannot even begin to imagine living anything close to a normal life with this noise blaring away and am always on the edge of a cliff and apparently other people can go about their day perfectly unflustered.

 

Yes like Bam I'd be interested in your opinion on this too. Can you speculate as to why some are more affected by tinnitus than others? The obvious factor is variation in tinnitus loudness - my tinnitus varies a lot so it makes perfect sense to me that mild tinnitus does not affect most people too much, and severe tinnitus can affect some greatly. But it also seems obvious there are massive variations in response at the same perceived "loudness" of tinnitus. E.g. my father and a former colleague have tinnitus that can be heard over everything, but it doesn't seem to bother them much. The same level of tinnitus bothers me a lot. My partner has moderate tinnitus that doesn't bother him in the least, but he seems to be more reactive than me to other illnesses. Why might variation in reaction to tinnitus vary so?

 

@Bam. Yes I go into quite a lot of detail about the nature (largely for my own interest!). In my experience I do see a general trend towards the more unmaskable the more distress, but it is not clear cut. Of the severe sufferers I was mentioning I'd say there is a pretty even split between those with what sounds like tiny tinnitus (only heard with head on pillow for example) and those with the Full English of noises. Also definitely see lots of people with what sounds like difficult tinnitus, who couldn't care less.

 

@brownbear ,
Thanks for the reply. I visited three ENT doctors before reluctantly accepting that there was no cure for this. Two of them told me that they also had tinnitus. I guess they meant well but it seemed like they were indeed projecting their own experiences onto me. I felt like they did not understand how different my tinnitus was from theirs. At that time, I was a suicidal basket case! I now agree that "learning to live with it" is all there is, in the absence of a cure. They were absolutely right about that and I am in the process of habituating. Five plus years later, I still do not believe that their tinnitus is anything like mine though. I am glad that you are able to spot more severe cases because these people are so fragile.
I wish you well @brownbear !

 

So what treatment do you provide?

 

Couldnt care less or don’t want to appear weak and/or are in denial ?!! Come on if they couldn’t care less they wouldnt be sitting in front of you.

 

I do think personalities make a difference. I know guy at work who seems to have decently loud tinnitus and wasn't in much distress but went to the ent for a follow up to make sure nothing serious was happening. I mean in my opinion tinnitus is serious as it has changed my life but I guess its possible to have loud tinnitus and not care?

 

I find this really interesting. My wife always says that she always can see once I suffer more in my eyes. The eyes never lies and shows the pain from a mile's distance. Furthermore I think even a small sound can turn one's life upside down but it should be quite easy to adapt to. The typical 3-6 month would be enough for most people to get their life back to normal. If only shower masks, then that's a complete different ballgame and could require several years. Some of us will never completely recover but have to learn to live and accept this this as a chronic decease.

I have a very close friend that got his tinnitus several years before me. He could never really understand why my tinnitus struck me so hard. Then he got some nasty reactive and sound sensitive parts added to his tinnitus and his life fell apart.

Even if psychological factor also contributes it is clear to me that the severity of your tinnitus closely correlates to your ability to habituate. If more health professionals understood this we could sort the more severe cases early on and give them professional help the first critical weeks/month.

 

@brownbear hope you do not find this question too personal. Do you take any meds for your tinnitus? Do you prescribe those for yourself or do you always ask another health professional for prescriptions? I have tried pretty much everything mentioned on Tinnitus Talk but the only thing that really helped in the end are SSRIs and Benzos (at some stages).

 

Well, I have to ask myself- who is it that doesn't care in this situation? To me the answer is obviously the ENT. OK, so there's nothing that can be done, but why aren't the ENTs telling their professional organization that they need effective treatments for their tinnitus patients? And why are the professional organization not lobbying government and researchers for funding and serious, hard science research?

Because, the ENT has an out, he/she can refer the patient onto audiology or now psychology and absolve themselves and even feel like they've done something for the patient.

This has been going on for years. And its just being perpetuated by physicians, audiologists and psychologists and to a certain extent by ATA and BTA.

I am very curious to hear Dr. @brownbear 's side of it.

TC

 

I still don’t buy this....... I think it serves people who have mild T to up sell it as louder than it is. This buys them a degree of sympathy and perhaps even admiration from people that saying ‘oh I can hardly hear it’ just wouldn’t.

I think the real truth of loud T is painted in this and countless other forums and involves heavy duty suffering.

 

Well said!

As we all know after a year most tinnitus sufferers just abandon hope of help. They stop bothering doctors and audiologists. Statistically they become success stories. They are perhaps even counted as people whose ‘tinnitus went away’.

But the truth is they’re still suffering like hell and have a seriously depleted quality of life. Why are the medical authorities and especially the BTA not interested in how many people this numbers? Why don’t they follow up with people like me and ask me how I’m doing over a year later?

Because they don’t want to know the ugly truth of this disease. Easier to pretend we’ve all just moved on and the T has become insignificant. That way there is no need for a cure. No need for money to be spent. No need for a change to the habituation status quo.

I said a while ago that @brownbear is the kind of guy who should be leading the BTA because he knows that tinnitus can be seriously heavy shit and needs curing and he has the medical background to be respected and not belittled by the people who would seek to defend the pitiful ‘get used to it’ situation we are still trapped in.

 

Personally, I think David Stockdale and BTA do a good job, especially with sharing information, but my reference point is the ATA which is a low hurdle. Anyway, its the Board of Trustees that sets the strategy for BTA. Someone like brownbear may be more influential serving as a Trustee. He could be vocal and visible in that role. Actually though, I'm surprised you would think someone who views patients with tinnitus as "couldn't care less " should be the head of BTA.

So really, if you are dissatisfied with BTA's strategy, you and others should join the organization and then let the Trustees know of your dissatisfaction. Also, look at the composition of the Professional Advisory Committee and the qualifications of the members to see what direction the organization is going scientifically. I may take my own advice and join BTA.

From my view as an American across the pond, BTA needs someone in a visible scientific role to coordinate research and hold researchers accountable. I think right now they have someone who is embedded in the group in Newcastle, but really they need someone who is out and about Europe and the US calling on researchers, attending conferences and shaking the trees.

I agree that at some point tinnitus patients are left to their own devices. I see that more as a medical issue than a BTA issue. BTA sponsor support groups and an online forum. I just don't see an organization like that being personally responsible for each member. I've seen 3 ENTs and at the conclusion of the appointment, every one of them said they didn't need to see me again and each one had referred me to either audiology or psychology. Which goes back to my original point- physicians have an out, they just refer you on. Anyway, we should all be seeing a GP once a year for a checkup and that's the time and place to let your suffering be known. And, another physician that should be demanding treatments and cures for their tinnitus patients.

Just my 2 cents- TC

 

Respect your opinion but I disagree here. I'm interested in this subject and have had very detailed conversations with other tinnitus sufferers about what exactly they can hear their tinnitus over, the pitch, how much it bothers them. I think there are definitely large differences in reaction to the same sort of "sound". Doesn't necessarily follow we should blame ourselves for being unable to cope with loud tinnitus. People may simply be wired differently in how they react to sound.

In addition..I was interested to notice tinnitus WAS taken seriously by some of the health professionals I saw - they knew this condition drove some to suicide - and to me this was in stark contrast to some other health problems. GPs rather than ENTs weirdly. I appreciate this has not been everyone's experience, but for me it was very striking - with almost all the other health conditions I have or have had, I did not feel the impact was "taken seriously", but this was not the case with tinnitus. When I first got a constant headache I saw someone had written in my medical notes that she saw me using my phone so I could not be in much pain for example- with tinnitus by contrast I was immediately told yes for some people this is a horrendous condition and has a huge impact on them.

I would guess one of the reasons for this is tinnitus is a condition that is linked to suicide, more than many other chronic conditions, despite the fact that it doesn't seem to bother some.

 

Not necessarily true. I was referred to ENT because of sudden loss of all hearing in my left ear.
While there, I told the doctor that I was hearing everything twice. Every sound I hear in my good ear produces noise in my bad ear. He told me I would probably have to learn to live with that. I went for a second and third opinion because I wasn't having much success at learning to live with it.

 

Interesting comments, thank you.

 

I think it would be good to have someone who has the credentials and has also felt the very real fear of the noose due to this condition. How can you be truly passionate about curing this if you’re not a severe sufferer?! Stockdale goes through the motions so he can pick up a paycheck.......Really I should do the job but I’m buggered if I’m getting up at 7 and living in Sheffield.

 

Nah, I think you should be head of the ATA. But, you'd have to be very photogenic, I mean all Torryn Brazell does is go around smiling and having her picture taken with this and that official. Then she comes back to the office and posts a few things on Facebook and calls it a day. They could use a BAM!

 

Right, that's why we need BAM! over here.

I mean seriously, you ask David Stockdale about some particular research and he will have an opinion. You ask Torryn Brazell and she'll tell you to look it up in ATA's magazine. Could you ever picture her doing a reflections video with Steve? I tried and failed.

Oh and you're absolutely right about the paycheck. He would do well in Pharma.

 

I just don’t know if I’m outspoken enough. Sometimes I struggle to convey my true feelings on tinnitus.

 

@David also raises funds with others running for the BTA ...
He is a lovely person and met him in person at the Birmingham Expo in September.

love glynis

 

It's many of my patients who couldn't care less, not me, just to clarify. I admit I never used to see T patients more than once, but now I make sure I see those suffering regularly. I meet with our audiologist monthly for a severe T team meeting where we decide on next steps and discuss cases in more detail. This seems to be helpful so far for our few most difficult cases.

Well I have no miracles, so the usual:
For hearing loss - Aiding or surgery where correctable (stapedectomy, ossiculoplasty, BAHA, CI etc)
For sudden hearing loss - IT steroids, HBOT occasionally
For Meniere's - IT steroids/Gent, rarely saccus decompression or total osseous labyrinthectomy
Also - CBT, Sound therapies, mindfulness etc
I am not in a cutting edge centre offering new research with tinnitus, but do get involved with collaborative work - so far none of my patients have benefited from any novel treatments.