An ENT Doctor with Tinnitus

#32
hi bb , im also a Doctor , the only steroid that worked for me (oral) , was dexametasona 4mg or 8mg day the first few days . then 20 days of metilprednisolona . The first days you need high dose to reach the cochlea seems that dexa is potent enough or betametasona also . predinosona will not reach . Its strange but I had to try it myself because I couldnt find it anywhere in textbooks . Any way when I had steroids (oral) my symptoms clearly diminish . I had viral laberynthitis one year ago and got T on my left ear . Around 6-8khz sound . Ive lost some dB in that region but not too much . Hope you recover :)
 
#33
brownbear said:
P.S I think all ENT surgeons should be able to council patients properly regarding tinnitus, even if it is not their area of special interest. It is too common a condition not to, and we are the first port of call for patients.
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brownbear said:
There are many medical problems that people have unquestioning sympathy for such as cancer, stroke etc
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@brownbear
I agree with you on both of your statements brownbear and I have written about this on more than one occasion. Please see the post below titled: Who are the tinnitus experts, that I wrote some time ago. Whilst ENT Doctors like yourself whom I have a lot of respect for know about the anatomy of the ear, the majority of them are not like you because they haven't experienced loud intrusive tinnitus.

Most Doctors regardless of the medical condition treat it either medically or surgically and this includes the ear. They are not trained in counselling, which is a different set of skills required when treating someone that has intrusive tinnitus. Such a person is usually referred to a Hearing Therapist or Audiologist trained in tinnitus counselling to help patients with treatments such as: TRT and CBT. They help patients through counselling not to see their tinnitus as a threat.

Many Hearing Therapists and Audiologists that work with tinnitus patients also have tinnitus. Whilst it's not a prerequisite to have the condition, you will find these people are likely to have more understanding on an emotional level, of how their tinnitus patients are affected daily because we are dealing with a person's mental well being so they often make good tinnitus counsellors. My Hearing therapist was born with tinnitus.

Who are the tinnitus experts?

The onset of my tinnitus stems back to a time when the Internet hadn't yet gone mainstream. My main source of information about it came from tinnitus organizations and books that I had got from the library or bought at a store. How times have changed. Although I learned a lot from books, I really wanted to meet with people that had experience with tinnitus and would be able to advise me how best to cope especially in the early days. For all I had been hearing was, there is no cure you'll just have to learn to live with it.

Through one of the tinnitus organizations that I had joined they published a magazine which I found very informative. I was heartened to see they had readers letter pages, where people could write in for advice or ask questions and hopefully they'd be answered by more experienced people living with tinnitus.

It was nearly 20 years ago when a video tape recorder was in many homes. I thought my luck was in when I had the opportunity to borrow a VHS tape of a tinnitus seminar held by a Dr, that worked in ENT and was a tinnitus expert who also wrote a book on it. The venue was in a large hall. He stood on a podium behind a lectern with microphone and presided over his seated audience and looked very official. After his introduction he said he'd answer any questions at the end of the evening . At last I thought I was going to learn something and settled down to watch the hour long tape.

To say I didn't like what I had seen would be a polite way of describing it. For one hour I watched and listened to this person say everyone gets tinnitus occasionally. It is mostly to do with noisy background activity withing the body and it travels up to the auditory system where the signals are transmitted to the brain. Most people can easily ignore these signals was his theory but those with tinnitus, have allowed their brain to focus on them, until they become louder and eventually become a problem. He asked the audience, how many had been for a night out where the music was played loud and at the end of the evening their ears were ringing?

Nearly everyone put their hand up. He walked pompously from behind the lectern and stood at the front of the stage and said "And by the morning the ringing has gone a way right"? Looking very pleased with himself he continued. "But in your case you've allowed your brain to hold on to the tinnitus and when you don't hear it any longer you say". In disbelief I watched him start to jog up and down the stage shouting out "Where's my tinnitus, where's my tinnitus?".

When he eventually stopped he could hardly contain the huge smile that was spread across his face, as he looked very pleased with himself. However, the audience looked less than impressed at what they'd seen because no one said a word. I watched the tape until the end and sent it back with a letter of thanks and my comments which were not favourable. My letter was printed in that tinnitus magazine to warn other potential readers of what to expect before asking to borrow it.

What I had witnessed all those years ago on that video by a so called tinnitus expert, was nothing short of mocking people that find tinnitus debilitating when it's severe. It was very clear to me, that Dr had never experienced loud intrusive tinnitus once in his life. Thankfully times have moved on and there is greater understanding and help for people with tinnitus, and not all health professionals think it's all in the mind or something that can easily be dismissed because it isn't.

I am thankful to the Internet for enabling people to come together and meet in forums like tinnitustalk and give help and support to those that need it. In my opinion, these are the people that are the real tinnitus experts because they know what it's like to live with the condition daily.

Michael

PS: My consultant whom I have a lot of respect for knows all about the anatomy of the ear, for she is an Audiovestibular physician. She once told me, that I know more about tinnitus than her – I asked why is this so? She replied: "Because I have never experienced tinnitus".
 
#34
I'm having a better day but remain fearful that my hearing will drop again as my ear feels so abnormal. A colleague of mine gave me some good advice though - he describes sudden hearing loss and tinnitus as like being mugged. If you are mugged then you become hyper-vigilant and fearful that it will happen to you again. You feel as though you would never cope if it happened again. However it is very unlikely you will be mugged again, and if you were, you probably would cope as you are doing now. I quite like that analogy.
 
#35
brownbear said:
If you are mugged then you become hyper-vigilant and fearful that it will happen to you again.
Click to expand...
I became interested reading about acoustic shock disorder.
My hearing loss and associated discomforts where caused by a loud explosion.
The event was very stressful because I instantly realised what must have happened in my inner ear. The explosion was really loud.
And now I wonder if I am unconsciously "stuck" in this hyper-vigilant state.
The therapy I am following also talks about this subconscious or autonomic nerve system a lot.
 
#36
This condition makes you feel awful and feel like a failure for not dealing with it better. What a nightmare
 
#37
Sorry you have had to come to such a forum, but welcome, here you will realise you are not alone. My tinnitus started like yours SSHL, after MRI they diagnosed a TIA. The hearing has, to a degree, come back, though very distorted (think Donald Duck). I have hearing aid. It helps the hearing but not the tinnitus.

I'm not habituated, as every day is different with it and a challenge, but I am accepting. Your comment about your ear feeling abnormal strikes a chord, so does mine, sometimes worse than other times. Yesterday for instance, not too bad, this morning, I must've laid on it. Horrendous, hollow, full, congested feeling. Ah, it's a pain, but life goes on. Good luck.
 
#38
brownbear said:
This condition makes you feel awful and feel like a failure for not dealing with it better. What a nightmare
Click to expand...
@brownbear Chin up, doc. I've got idiopathic tinnitus that started Nov 4, 2015. I suspect it may be due to long term noise exposure from driving truck, my profession, however all tests, including hearing, came back fairly normal and is having my ENT, an neurologist, and 4 GP's scratching their heads, telling me to use white noise to mask and try to live with it. Well, I'm trying.
I wouldn't wish this on my worst enemy, probably because I don't really have one, but in a way it's nice to have an ENT go through this; you could become quite the activist and push things into the right direction.
I wish there was more support for us. The worst thing, or one of the worst, is worrying about not being able to maintain ones job, worrying about money and bills. It makes everything worse.

There's another doctor here from Columbia who has treated himself with intravenous lidocaine. Says it works for a few days, then T creeps back. Depending on your openness to experiment, there are quite a few things you can try.
There are also many supplements that, depending on the cause of your demise, can be of help.

One thing I can promise anyone here in a dire financial situation, that doesn't know what the hell to do from here on.. Should I win the lottery jackpot at some time, there will be a place for you to relax and recover.

In the meantime, I'm keeping my fingers crossed for some more research and development in the treatment of this bullshit nonsense crap shoot called tinnitus.
 
#40
brownbear said:
This condition makes you feel awful and feel like a failure for not dealing with it better. What a nightmare
Click to expand...

You are correct. This is a nightmare!
I am so sorry that you have joined the club @brownbear, but it is refreshing to hear at least one otologist describe tinnitus as a nightmare. I went to three different ENT doctors after profound, unilateral hearing loss and the onset of tinnitus. The first told me to "learn to live with it". The others told me that they had ear ringing too.
Ultimately, I have evolved to agree with them.... In the absence of a cure or effective medical treatment, learning to live with it is the best option. The only other option is suicide (which many sufferers contemplate and some execute). I just wish that more doctors understood what a nightmare this can be. New patients need help learning to live with it.
 
#41
I'm really struggling at the moment. Some better days, but a lot of bad days. Will report back if I see any improvements.
 
#43
@brownbear ,
Stay strong and you will come through the storm.
I am also going through a tough time and very emotional after 12 years it's getting to me more and more with a aditional sound.
The sun will come out again after battling a storm....lots of love glynis
 
#45
@brownbear are u still following the hydrous diet?
Got mine a month before u...so tricky in the beginning. Have to mask during several ours...have a couple of ok days here and there too.

We're holding out for some medical discovery, there's a neuroscience professor on here too who has some interesting info.

Keep on thinking of the day I'll get my meds, my injection or whatever. It's got to happen, right?
 
#47
Also @brownbear please be kinder to yourself, it is a new reality that you're having to get used to.
The reason we feel like we should be dealing with it better is that that is what we're told. Then we think "sc..ew this today I'm ignoring it and getting on with life". That doesn't work because the actual thing is intrusive and loud and that's why we're all on this board. I suspect we'd also be accused of paying too much attention to it...however when an obsession is at play, the brain does eventually shift its awareness and you will stop looking for the stimulus. Where many of us on here are is nowhere near the stage of looking for the sound. The sound is finding us.

Trying to find a way forward is what we're doing...not wallowing, we've all got lives to get back to...
 
#48
@Candy. Yes still doing everything I should. No pattern to it. It just seems to be doing its own thing. I really thought that once my hearing improved (which it did), that the tinnitus would fade. Recently it's worse than ever. Seeing many people with tinnitus at work is not helping.
 
#49
I agree Candy, I REALLY don't need to try to find the sound - it is overwhelmingly loud
 
#50
Sorry that you are having a tough time now @brownbear and welcome to TT where you are never alone. No one is superhuman nor ready for severely intrusive T when it first hit, even doctors/ENTs. The initial stage is the worst suffering stage when the body will not follow the will nor knowledge. The body is simply overwhelmed in trauma by such an alien, alarming and seemingly unshakable sensation. It is like a form of torture that you can't shake off.

It doesn't help when even the medical people who we trust tell us that it is going to be a life-long condition without any pills nor treatments to fix or heal. My ENT didn't just tell me to live with it. He emphasized it by saying 'the only way I can stop your ringing is to shoot you!!!'. That is too much for any one on suicide watch or having a nervous breakdown while dealing with a maddening scream non-stop 7/24. The meds school should really have a class for future ENTs on how to counsel tinnitus patients or simply learn to direct them to other treatments which may help them, such as TRT, CBT, mindfulness etc.

While the initial stage of suffering is tough as our mind is controlled by the 'fight or flight' mode of reaction and when the Amydgala takes over processing the T stimulus, for many people this stage will pass when the body gets more used to the new sensation. After some time, the brain realizes we didn't die, didn't kill ourselves out of insanity or ending up in the nut house, and with sites like this forum where we realize we are not alone with many people actually recovered, then the brain will learn to relax a bit. We can also learn from others many coping or healing strategies which can reduce the severity of the reaction or symptoms. Gradually, the fight or flight mode of functioning is over, and the T signal is no longer perceived as a threat (even though it is still irritating). When that happens, the pre-frontal cortex takes over from the Amydgala in processing this T stimulus, and things will improve by the miles.

If you read the success stories, the common element of success is TIME. The body simply needs time to get over the initial trauma. Then if we keep being positive and focusing on other things in life, or taking on some meaningful or fun things to do (like new hobbies), the stupid brain just can't focus on T like before. It finds rejuvenation when something interesting distracts it from zooming on T. Some members find great result too with treatment like TRT, CBT, diet changes, life style changes, taking supplements, etc. Many find the need to mask T initially to reduce the anxiety and stress level which can aggravate T. Some find restful ways to have good sleep which can do a ton of good for reducing T. Whatever works. Each person's T may be different and so it is best to read a lot of success stories to find what will work best for you.

I had gone through 'hell' with my ultra high pitch T and then severe hyperacusis a few years back. With prior problem of PTSD and anxiety & panic disorder, T & H just floored me physically and emotionally with relentless anxiety and panic attacks. I was suicidal and thought how on earth one can live with such unlivable condition life-long. I thought I would never recover and see good life again. But never say never. Today I live a normal, productive and absolutely enjoyable life and I wrote my success story like others. I list many helpful strategies from others and from my own to help me. The following links are those of my story plus those from doctors who had gone through tough T and survived. Hope you have time to read them. Take good care, doctor. God bless.

https://www.tinnitustalk.com/threads/from-darkness-to-light-how-i-recovered-from-tinnitus-hyperacusis.3148/

https://www.tinnitustalk.com/threads/how-cbt-helped-me-live-again-dr-hubbards-story.4608/
 
#51
@brownbear
Welcome to the club! Here is a good place to come complain and commiserate with people who understand what you're going through. You may also check out the Research News sub-forum given your occupation.

It's good you got on steroids so early. In your opinion did the IT steroids help at all with your tinnitus or did it help mostly with your hearing loss? I had the option to do intratympanic Prednisone 6 days after my acoustic trauma but opted to only do the oral steroids at that time because I had other engagements. Nine months later I still wonder if it would have helped.
 
#52
@Alue. My hearing had already been rising up on oral steroids by the time I had my intratympanic steroid. I mainly did the IT to see if it would help the tinnitus, rather than the hearing - which it didn't. Hope that helps
 
#53
@brownbear welcome to the world of T!
I am also a physician, internal medicine and in practice for 33 years. I developed SSHL in April 2,2016. I was told by otoneurologist at John Hopkins that by 6 months I should be better!
Unfortunately I still have T but I am no longer anxious about but just annoyed, I have moderate to severe hearing loss in my lt ear. When I first got symptoms I applied for disability but I slowly returned to work and I am back full time. Since there is no cure I hope to habituate.
Good luck !
 
#54
GregCA said:
When you tell them what you have, even then the sympathy is limited because nobody really knows what tinnitus is until they experience it. They think it's the "ear soreness" after a party. So they think it's no big deal.
Click to expand...

It's like any other human malady: "as long as *I* don't have it, I can live with it".

Anyway, when you go to a doctor, each has their own, unique approach to practicing medicine; some express empathy, others just shrug their shoulders and smile, while still others just rush you out so they can take in the next patient and collect their co-pay and bill their insurance.
 
#55
MikeL1972 said:
It's like any other human malady: "as long as *I* don't have it, I can live with it".
Click to expand...

I do think it's not like any other human malady unfortunately.
One of the reasons is that it's invisible (don't your friends tell you "you look great" when they see you? they have no clue what you're going through "inside").
One other reason is that people think they know what it is. They associate it with a mild annoyance. That's because they've been exposed to mild tinnitus before (the kind they've endured after a party), and they think it's no big deal. They have no idea that it can get loud and intrusive, and well, permanent. There's T and mega-T. Different ball game. It's actually hard to imagine that there could be such condition where your senses screw with you to the point that you are feeling pain or stressful stimuli, with nothing that modern medicine (or other really) can do to quench.
When I started understanding what was happening to me after onset, I was in disbelief: "what? this can actually happen? and I'm stuck with it forever? noone can do anything about it?". I'd be surprised if I was the only one thinking this...
 
#56
I had acupuncture two days ago and I am very surprised to say that the last two days have been the best I have had since July. I'm not holding my breath but it's interesting.
 
#57
I thought I would list the things I have done for my sudden hearing loss and tinnitus and give my view on whether they have helped me:

Helped:
Early steroids including IT
Combination hearing aid and noise generator ( had to stop using once my hearing returned as was over amplified)
Deep muscle relaxation
Mindfulness
CBT
Possibly acupuncture
Swimming in the sea!

Not helped:
Vitamin B12
Zinc
Gingko
Betahistine (serc)
Cranio sacral osteopathy
Steroid nasal spray

Of course this is just how I feel and will not apply to everyone
 
#58
I continue to have good days and bad days. I really feel that this does not relate to how I am feeling about it. It genuinely seems so variable. However I think I have identified what makes the bad days bad - it is not so much the volume but the pitch. When it is very high frequency there is no masking it whatsoever. It cuts through everything (even the sacred shower). I guess we just normally hear nothing at such high frequencies so there is nothing very natural to mask it with. I did read that there is not much in the studies to suggest that the volume of tinnitus corresponds well with the emotional impact - so I wonder if the pitch/nature of the sound/variability is more important.
On a side note relevant for those with sudden sensorineural loss - I got hold of a paper that suggested the presence of tinnitus is a good prognostic sign for hearing recovery - almost as if it is necessary for recovery. It's not the best piece of research I've read but I like the idea that tinnitus is the sound of repair!
 
#59
brownbear said:
On a side note relevant for those with sudden sensorineural loss - I got hold of a paper that suggested the presence of tinnitus is a good prognostic sign for hearing recovery - almost as if it is necessary for recovery. It's not the best piece of research I've read but I like the idea that tinnitus is the sound of repair!
Click to expand...

In the cochlear otosclerosis case, one of the assumptions of my neurotologist is that the tinnitus is the result of enzymes irritating the hair cells. Basically the cells may not be dead, but they are being insulted, and that leads to production of bogus signals.
Maybe this is in line with your findings: the cells may not be dead but they are malfunctioning, which may indicate that they are potentially still capable of being healthy.

If that hypothesis is correct, then I should be trying to arrest the otosclerosis process somehow (which is our strategy). I'm taking fluoride right now, and if that doesn't yield any measurable results, then I'm thinking of switching to bisphosphonates.
 
#60
Hi GregCA. Sorry I don't know all the background to your hearing - have you had a stapedectomy for your otosclerosis? I assume from your post that you have cochlea involvement so your bone conduction thresholds are affected too (i.e you don't only have a conductive hearing loss amenable to surgery)?
 

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