ENT's misinforming patients - how to help?

[Johnista]

Hi, what I'm talking about is a condition called hyperacusis (increased sensitivity to sound). Most ENT's give out horrible advice about this condition and often give people no hope and make their condition even worse with bad advice about ear protection and sound exposure. ENT's often say Hyperacusis is permantent, which is absolutely false, and most can make a complete or near complete recovery.

What would be the best way to increase awareness about TRT (Tinnitus Retraining Therapy) and the Jastreboff model for hearing? Hyperacusis needs to be treated and usually gets worse without the right help. ENT doctors should be pointing people to that help. Tinnitus is also treatable.

This is what I am trying to share with as many ENT doctors as I can, so they don't keep misinforming people. Hyperacusis can be devastating to a patient when they don't have good information and help.

Any thoughts on how to reach as many ENTs as possible?

John

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[koojo]

Why don't you post on here what you're trying to say?

 

[DrBodacious]

Lol

 

[KLPM]

 

[Johnista]

Why don't you post on here what you're trying to say?

I will, but I started a thread in another part of this forum and got an infraction from a moderator claiming I was seeking medical advice. Though my post could have been worded better. It's against forum rules to seek or provide medical advice, so I risk being banned.

Just so there is no mistake, I am not seeking medical advice or giving it directly. I am only trying to share about a very effective treatment for hyperacusis called TRT. All the information I provide is that from proffessionals, audiologists and doctors who treat hyperacusis and have success doing it.

The best site to read about hyperacusis and tinnitus treatment can be found here: www.tinnitus.org

TRT was developed by Dr. Pawel J. Jastreboff and Jonathan W.P. Hazell, and they also wrote a very good book on the subject called Tinnitus Retraining Therapy - Implementing the Neurophysiological Model In the book, three different placebo controlled studies are detailed for tinnitus and one includes hyperacusis. Also, TRT providers generally report a 90 percent success rate for treating hyperacusis.

Treatment involves the careful application of broadband noise, and directive counseling from a TRT provider. The directive counselling is a very important part of TRT, and the broadband noise is applied through ear devises that look like hearing aids but have a hole to let external sound in.

Hyperacusis is defined as increased auditory gain (amplification) caused by either peripheral or central auditory disfunction. Characterizing a person's sensivity is done through a test called a loudness discomfort level (LDL) test. A person's LDL's vary with frequency as well, so a person could have higher LDL at lower frequencies but much lower LDL's at higher frequencies.

This is a big subject, so I'm just trying to hit the main points, and will continue to share more in later posts.

There are some common mistakes made by ENT's in dealing with hyperacusis patients. They often have patients get an MRI, and neglect to advise patients to use good ear protection. MRI machines are very loud and can make hyperacusis much worse.

Also, patients with hyperacusis tend to seek out quiet or silence, and this only serves to make sensitivity worse. The brain turns up the central auditory gain very fast in the presence of silence. This is similar to how eyes become very sensitive in total darkness. ENT's often advise the use of ear protection to deal with hyperacusis symptoms. Ear protection should not be used except around excessive noise that can make hyperacusis worse, like concerts, loud movies, sporting events, clubs and the like.

Telling patients that hyperacusis is permanent or there is no treatment for it is very hard on patients, and makes them fear sounds that hurt and associate it with damage. They in turn start completely avoiding sounds that have hurt them; this is called phonophobia (fear of sound) and can make sensitivity worse and cause further decreased sound tolerance.

Anyway, I have more to say but want to end this post by saying that patients need professional help and hyperacusis generally gets worse without the right help.

Thanks for listening ...

John

 

[Johnista]

LOL, very funny KLPM, enjoy!

 

[resxn]

Most ENT's give out horrible advice about this condition and often give people no hope and make their condition even worse with bad advice about ear protection and sound exposure.

You're not going to get a real response because this is a troll post if ever there was one. As an ENT I'm offended that you say "most." I think unless you have data to support that, you're FOS. I also think you're FOS when you say "horrible" as well.

I refer patients to TRT all the time mostly for tinnitus, but also for hyperacusis, although this is a much less frequent complaint in my clinic and usually is from children between the ages of 2-5 and this cohort usually has spontaneous resolution.

I have 4 other docs in my group who also are aware of TRT. I have close ENT colleagues in and around town who also utilize this treatment modality. I could easily say more than 1/2 do that I know about and there's probably a significant amount more that do that I don't know about.

Having said that, my own empirical study indicates most ENT's (at least in my neck of the woods) do know how to treat hyperacusis and do not disseminate horrible advice.

My first thought reading this post was that it was either someone who has had this condition and didn't get good help either because they were incapable of clearly indicating what their problem was or they had a jerk for a doctor. I would say the jerk was in the minority of ENT's, IMHO.

My 2nd thought is that this poster is someone who has something to sell.

My 3rd now is that perhaps it's just someone without tact.

In any case, I'm not going to help out a troll.

 

[Johnista]

You're not going to get a real response because this is a troll post if ever there was one. As an ENT I'm offended that you say "most." I think unless you have data to support that, you're FOS. I also think you're FOS when you say "horrible" as well.

Hi, I am absolutely not trolling and I am not trying to offend. Sorry if my post came accross that way. Yes, I've had hyperacusis as well as phonophobia. Right, I did get horrible advice from top ENT's, Neurologists from top medical facilities. I have no data to support my "most" comment. All I can say is that almost every person with hyperacusis I've had contact with, over 100, have often seen many ENT's and recieved little to no helpful advice. They are sometimes not even given the name of their condition, and are told it is "not treatable," "learn to live with it," "see a psychologist," and so on. A relation locally with hyperacusis and phonobia sought help from an ENT and was not given the name of his condition. I gave it to him after a family member contacted me on his behalf.

It is common knowledge to those who treat hyperacusis professionally that ENTs often give out poor advice, and negative counsel patients. I know things are improving some and that's great.

I'm really glad you and those you work with know about TRT and give out helpful advice. Like I say I'm not here to offend. It is very important for those with sound sensitivity to seek out the help of an ENT and get a correct diagnosis. I know ENTs can and do diagose other problems like lyme disease, brain tumors, drug reactions that can cause sound sensitivty. But, often if a doctor finds no cause for the sensitivity they give patients no other options.

Help really needs to be more accessible for people with hyperacusis. Hyperacusis patients have about the same experience with neurologists. Often offered meds to treat the symptoms. Meds can be a dangerous path and not a real solution to sound sensitivity, and can lead to even worse sensitivity.

Anyway, I am really interested in discussing and increasing awareness of hyperacusis. There really is not enough accessible help for people with sounds sensitivities.

Best Regards,
John

 

[VisionaryTics]

It is common knowledge to those who treat hyperacusis professionally that ENTs often give out poor advice, and negative counsel patients. I know things are improving some and that's great.

You mean like board-certified otolaryngologists?

 

[Johnista]

You mean like board-certified otolaryngologists?

No, I mean like an audiologist or ENT or other professional who has taken the TRT training course either in the US or in the UK. It appears that the most common profession to treat hyperacusis is Audiology. There are some who treat hyperacusis who have not taken the TRT training course and are very good.There are also some who claim to practice TRT who have had no training and are not knowledgeable - they can really hurt people.

Directive counseling is a big part of TRT, and desensitization can take months to years depending on a person's sensitivity level and whether or not they've had phonophobia (fear of sound).

John

 

[OtoHNS]

I generally find that the vast majority of my tinnitus patients are satisfied with reassurance, education, and simple masking techniques. Most of the problem tinnitus patients I see have comorbid depression or other psych issues. I do reserve TRT referral as an option for people who are continually bothered by their tinnitus despite first line measures. I think it's more than the average tinnitus patient needs though.

I have very rarely seen hyperacusis patients during residency or in the 3 years since I graduated.

 

[Pir8DeacDoc]

I generally find that the vast majority of my tinnitus patients are satisfied with reassurance, education, and simple masking techniques. Most of the problem tinnitus patients I see have comorbid depression or other psych issues. I do reserve TRT referral as an option for people who are continually bothered by their tinnitus despite first line measures. I think it's more than the average tinnitus patient needs though.

I have very rarely seen hyperacusis patients during residency or in the 3 years since I graduated.

Would agree with this as well. I don't have easy access to TRT. It requires a very interested audiologist and there are just so few patients that need it, it's hard to come by. I find it interesting that a sufferer of this condition is coming by to save me from mismanaging patients. I certainly feel enlightened

 

[Johnista]

I generally find that the vast majority of my tinnitus patients are satisfied with reassurance, education, and simple masking techniques. Most of the problem tinnitus patients I see have comorbid depression or other psych issues. I do reserve TRT referral as an option for people who are continually bothered by their tinnitus despite first line measures. I think it's more than the average tinnitus patient needs though.

I have very rarely seen hyperacusis patients during residency or in the 3 years since I graduated.

Yep, I agree that TRT isn't for everyone, some people are better at dealing with tinnitus than others, but it can be a very big problem for some like you say. Well, I obviously can't speak about the patients you mention with problem tinnitus, but tinnitus can cause depression, inability to concentrate, and other symptoms like nausea or headaches. When people find tinnitus a threat to either there hearing or quality of life it prevents habituation to the sound. These symptoms are a limbic and autonomic nervous system response the tinnitus "sound."

Masking can provide relief for some, though most I've talked to haven't found it helpful, probably because they are also dealing with sound sensitivities. Sometimes because it's perceived as too loud to be masked or because it changes or increases it in loudness with sound exposure. Most people I have talked to with tinnitus also have sound sensitivity, which makes a difference.

Also, completely masking tinnitus, as is done with masking devices, is not recommended in TRT and is a kind of avoidance strategy (like ear protection) that can end up making tinnitus a worse problem as it prevents habituation to the sound of tinnitus. Using sound enrichment, like recorded nature sounds especially at night and in quiet evironments, can reduce the strength you respond to tinnitus and aid in habituation.

I know that hyperacusis is less common than tinnitus but the right information and help is really needed. The earlier the better. Sometimes mild hyperacusis can go away on it own but often doesn't and there are simple things people can do early on to help themselves like sound enrichment and avoidance of silence.

 

[Johnista]

Would agree with this as well. I don't have easy access to TRT. It requires a very interested audiologist and there are just so few patients that need it, it's hard to come by. I find it interesting that a sufferer of this condition is coming by to save me from mismanaging patients. I certainly feel enlightened

Right, there is not enough help for people with hyperacusis, and the help there is can be expensive and usually not covered by insurance. Who better to increase awareness about sound sensitivity than someone who's had hyperacusis and phonophobia?

My friend Marilyn developed hyperacusis after a shotgun blast. She saw three ENTs and never learned that there was any help for her, until she stumbled onto the Hyperacusis Network Message Board. She had gradually gotten worse over a three year period and was using ear protection all the time and could only talk for 20 minutes. I and some other knowledgeable people helped her and pointed her in the right direction. She eventually made a full recovery and is now going to school to become a counselor. Prior to that she said she was contemplating suicide after here son was on his own.

I've seen five ENTs, two before finding help on J. Hazell's website, and non of them knew about TRT or gave me any good advice. The last ENT I saw was highly recommended, and I was just going to get an LDL test. He also did not know about TRT but suggested I get an MRI because my high frequency hearing loss was slighty worse. I decided not to do that because I knew my hearing had not changed for years. I'm glad I didn't do that because he did not mention that MRI machines are very loud. Many with hyperacusis have their condition made worse from MRI machines when they are not given ear protection.

There are hundreds of stories out there like Marilyn's and mine, and I could on and on. So, I take it personally when people are given bad advice.

I know there are very knowledgeable doctors out there, but when it comes to hyperacusis my opinion is that most ENTs don't know enough about it.

Regards,
John

 

[Johnista]

This was posted on the message board just yesterday (see below), and is a perfect example of what many people with hyperacusis face when trying to find help. Again, this person was given very bad advice that made her condition worse and referred to other doctors, not to a TRT clinician, and she couldn't afford it if she was.

When people have used ear protection a lot or completely avoided some sounds, treatment also requires very gradually increasing exposure to more sounds (not just broadband noise) .... it's called exposure desensitization and is part of TRT. Cognitive Behavior Therapy is very helpful when working at exposure, and examples of CBT can be found on the "TRT exercises" link on Jonathan Hazell's site - www.tinnitus.org

"I have read all the information on the website and have been reading the message board. This is my first time posting.

I always had sensitive ears but it wasn't a problem until I made the mistake of seeing Cirque du Soleil one year ago and forgot my earplugs. (Why I didn't get up and walk out from the loudest sound I ever heard is beyond me.) Within a month I had tinnitus and my sound sensitivity was worse. I went to an ENT who tells me to put cotton in my ears 24/7 for a month. Having no clue what hyperacusis was or that doing this could make me much worse, I listened to him. When the cotton came out, ALL sounds were way too loud and painful. I went back and he refers me to another doctor (inner ear specialist) who I went to see. I went to an audiologist for a hearing test (required for inner ear specialist exam) and she tested my LDL's by telling me not to put my hand up until I couldn't stand the noise anymore. The inner ear specialist then refers me to yet another doctor. I did not go.

I have been out of work for 2 1/2 years and unemployment ran out last July. I cannot pay $5,000 - $5,500 for TRT. I applied for SSDI and was denied.

I do sound enrichment 24 hours a day. I don't plug up my ears unless I hear lawnmowers, leaf blowers and edgers (all going at the same time). That noise level is too much to handle.

I just about never go outside (except the dr. appointments). I can't stand the sounds of airplanes, sirens, horns, car doors slamming, barking dogs, chirping birds, trucks banging down the street, etc. I haven't been anywhere since last October (the last time I was in a restaurant, store, etc.). I had worn ear plugs that day and still everything was way too loud.

I ordered the pink noise CD from this website and have been listening to it for 8 months now everyday for over 6 hours on a boombox [no headphones]. I started to raise the volume a tiny amount every 7 - 10 days after four months. When I do this, the tinnutus gets extremely loud."

 

[tco]

This was posted on the message board just yesterday (see below), and is a perfect example of what many people with hyperacusis face when trying to find help. Again, this person was given very bad advice that made her condition worse and referred to other doctors, not to a TRT clinician, and she couldn't afford it if she was.

When people have used ear protection a lot or completely avoided some sounds, treatment also requires very gradually increasing exposure to more sounds (not just broadband noise) .... it's called exposure desensitization and is part of TRT. Cognitive Behavior Therapy is very helpful when working at exposure, and examples of CBT can be found on the "TRT exercises" link on Jonathan Hazell's site - www.tinnitus.org

"I have read all the information on the website and have been reading the message board. This is my first time posting.

I always had sensitive ears but it wasn't a problem until I made the mistake of seeing Cirque du Soleil one year ago and forgot my earplugs. (Why I didn't get up and walk out from the loudest sound I ever heard is beyond me.) Within a month I had tinnitus and my sound sensitivity was worse. I went to an ENT who tells me to put cotton in my ears 24/7 for a month. Having no clue what hyperacusis was or that doing this could make me much worse, I listened to him. When the cotton came out, ALL sounds were way too loud and painful. I went back and he refers me to another doctor (inner ear specialist) who I went to see. I went to an audiologist for a hearing test (required for inner ear specialist exam) and she tested my LDL's by telling me not to put my hand up until I couldn't stand the noise anymore. The inner ear specialist then refers me to yet another doctor. I did not go.

I have been out of work for 2 1/2 years and unemployment ran out last July. I cannot pay $5,000 - $5,500 for TRT. I applied for SSDI and was denied.

I do sound enrichment 24 hours a day. I don't plug up my ears unless I hear lawnmowers, leaf blowers and edgers (all going at the same time). That noise level is too much to handle.

I just about never go outside (except the dr. appointments). I can't stand the sounds of airplanes, sirens, horns, car doors slamming, barking dogs, chirping birds, trucks banging down the street, etc. I haven't been anywhere since last October (the last time I was in a restaurant, store, etc.). I had worn ear plugs that day and still everything was way too loud.

I ordered the pink noise CD from this website and have been listening to it for 8 months now everyday for over 6 hours on a boombox [no headphones]. I started to raise the volume a tiny amount every 7 - 10 days after four months. When I do this, the tinnutus gets extremely loud."

There it is.

 

[Johnista]

Here is a really good article on Decreased Sound Tolerance (DST) posted on the Hyperacusis Network (link below), written by Dr Jastreboff -

Decreased Sound Tolerance (DST): Hyperacusis/Misophonia/Phonophobia

It's very much worth the short time it takes to read. He touches on the pitfalls patients face in trying to find help, in the first paragraph, gives an thorough overview of DST, and gives some points to keep in mind at the end.

 

[Johnista]

This is very typical (below) of the comments I hear from people when they seek help for sound sensitivities. When people aren't given an explanation of their condition and how to deal with it they often get discouraged and quit seeking help. This woman found help on the Hyperacusis Network message board.

"Just read your story and I got the same rubbish from my doctors and ENTs. Antibiotics, nasal sprays and recommendations for anxiety medication. What worked for me is a three-pronged approach. 1) white noise therapy from a qualified audiologist. 2) Mindfullness and meditation for mental turmoil. 3) physiotherapy and trigger-point massage for the knots and inflammation. It's a holistic approach and its about restoring homeostasis and that takes time."

Finding the right help is so important because most people with hyperacusis get worse over time without good treatment, often quitting work, retreating indoors, losing friends. Sometimes they commit suicide. I fear a good friend in the UK may have done just that. She was in the hands of doctors for the last two years in the UK national health care system who supposedly treat hyperausis, but they were not trained by Dr. Jastreboff. While they did give her broad band noise generators and she did work at exposure desensitization with my help, they didn't even acknowledge her misophonia, which she tried to share information about. They just offered enough anxiety drugs to practically kill her at times. She did make some good progress and started traveling, but still struggled. She wanted to trust her doctors and they suggested some new anxiety treatment for her. She said it was a disaster and that she was bedridden and in horrible shape, but she was finally supposed to see a TRT trained audiologist in a couple months. That was 6 months ago and she hasn't replied to me since.

When a patient has decreased sound tolerance due to misophonia or phonophobia desensitization needs to be done slowly. Taking desensitization too fast can make sensitivity worse, cause other sensitivities and even cause neurological damage in some cases. I don't know what happened to my friend, but it makes me sad to not hear from her.

Also, people with hyperacusis and/or phonphobia/misophonia often develop other sensitivities. It's call "global hypersensitivity," and it's a challenge I've faced for the past 16 years as a result of phonophobia, but I have made very good progress with it once I found Johnathan Hazell's website and got some good advice from him via email.

Anyway, I'll share more about my experience soon.

John

 

[Johnista]

Here is another example, and this is the norm and not exception reported on the Hyperacusis message board:

"Hello forum members,
I'm not sure if I have hyperacusis or some form of it. About two months ago I started having pain in my right ear whenever I'd hear high pitched sounds like the beep on the microwave, the beep on elevators, and other similar sounds. I went to an audiologist and an ENT specialist. My hearing is normal and I don't have any ringing in my ears. The ENT had absolutely no answers - he pretty much said that I just have to live with it and maybe it will go away. Does anyone know what could cause this pain? It feels like someone is jabbing an icepick deep inside my ear when I am exposed to these high-pitched noises.
I haven't been able to find any answers on the internet; it seems like everything includes hearing loss and/or ringing. Anyone have any experience with this?"

And it's not just ENT's giving out bad information either. It's Neurologists and other health professionals. The problem is when people don't get good information about Hyperacusis, the tend to fear their symptoms and over protect their ears which just causes increased sensitivity. It's a positive feedback loop. Often people become so limited they can't leave their own home, and are even wearing ear protection all the time. That is where I started.

What happened to me:

I had a condition that could have been treated in 6-7 months. My sound sensitivity was not too bad when I sought professional (ENT) help. But, their advice just scared me. Three months later, I was living indoors and wearing both plugs and muffs constantly for 9 months. What I had read in medical journals while trying to find help just reinforced my inappropriate beliefs. One medical paper called "Hyperacusis Hurts" talked about hyperacusis causing loud tinnitus where the patients couldn't hear anything else, and also facial paralysis, headaches, and dizziness. It also mentioned that people who repeatedly hurt there ears could make their situation much worse and have loud tinnitus that drowned out other sounds.

Just after the first two weeks after retreating indoors I saw an ENT again while wearing ear plugs and muffs. When I explained that I could hear a sound like chimes in my head when brushing my teeth, he just said that ears make lots of sounds. And offered no help, just said there is nothing I could do for that kind of sensitivity and told me to see a psychologist.

Well, the chimes I was hearing was the electrical signals in my brain. The ear can hear all the electrical signals in the brain but these sounds are usually filtered out. It's called habituation of perception. At one point I was hearing all these electrical signals (heartbeat, etc ...). It sounded like very beautiful music. I later learned that the electrical signals of the brain have the same harmonic structure as music.

But, I developed many sensitivities. Walking to much started causing me bad headaches, hurt my ears, dizziness. I couldn't touch my teeth without ear pain. I had all kinds of neuropathy (burning scalp, heat racing down my back, facial burning or numbness), I had headaches, dizziness, and some nausea. At my lowest point I couldn't walk more than 20 feet, touch my teeth, talk, was wearing ear protection all the time.

So, after nine months I finally found out about TRT from Jonathan Hazell's website and he generously gave me some advice via email that changed my life. He said I had Global Hypersensitivity and my symptoms where just a limbic and autonomic nervous system response to something I was phobic or had aversion to. So I worked at very gradual exposure desensitization and within 3 months I had all my ear protection off at least in my own room with the window cracked slightly for sound.

It's been a long road trying to overcome all my sensitivities, 16 years. While my life is vastly improved (eat out, take car trips, read pretty well, etc.) I still can't work because of aversion to many sounds, this limits how long I can listen to them. I can walk 2 miles at one time but can't be active all day, and some days I have chill and let things calm down.

I'm dealing with the same part of the brain that's responsible for autism, PTSD, anxiety problems, etc.

Anyway, as for those that think this is too rare a condition to be knowledgeable about it I strongly disagree. Just because superior canal dehiscence is rare, does it mean you all shouldn't know what it is or how to treat it? It can also cause sound sensitivity. And ENT's should know what this is, be able to diagnose it, and know what the treatment involves. Is that right?

I have a bit more to say about global hypersensitivity, and will post more soon.

Best Regards,
John

 

[Johnista]

This is a brief explanation of global hypersensitivity given on Jonathan Hazell's website ( www.tinnitus.org ). It's advice from Jonathan Hazell via email that changed my life.

"The Limbic System, Emotional Responses and Global Hypersensitivity
Changes in emotional state, particularly mood fluctuations or anxiety can increase overall arousal and make us more able to detect potential threats in our environment. This is a normal protective mechanism. These emotional changes can also increase the apparent loudness and irritation of sounds to which we are already hypersensitive. In some people this results in a "global" hypersensitivity where all stimuli, be it vision, touch, heat, smell, taste or pain are increased greatly in their perceived intensity.
The process of developing an increased sensitivity to specific sound always involves the limbic system and autonomic nervous system. Where phonophobia or misophonia exists there is an inevitable association of fear or dislike, associated with the appearance of the sound, whenever it occurs. The attentional focus becomes filled with that sound, so that interference with concentration (on another task) occurs. These conditioned responses act like survival reflexes and have to carry a message of unpleasant emotion, in order to ensure that a response occurs. They also stimulate the autonomic nervous system to prepare us for 'flight or fight' so there may be coincident increases in heart rate, sweating, muscle tension, and other adrenaline-mediated body responses. Check Figure 2 again. "

The systems associated with Global Hypersensitivity can be headaches, dizziness, neuropathy (burning or numbness in the face, top of head, and so on), nausea, TTTS, and more ...

 

[Johnista]

Please read the post above this first (just posted). Thanks!

Here is a post by another person on the message board complaining about symptoms related to Global Hypersensitivity. It's a good post! And this is common among those with sound sensitivity. I gave him some good advice about how to go about exposure desensitization. He listened, understood, and last I heard he was doing really well. He also saw a number of health professionals that checked him out for different conditions, but gave him no explanation or helpful advice about how to improve his tolerances. I'm just disappointed that he had to show up on a message board and find me to get good advice. There is also a ton of misinformation given out on message boards.

Unfortunately, most TRT trained clinicians don't really get it either, even though it is supposed to be taught in Jastreboff's TRT course. It's only a 3 day course though.

"Hi, All,

I've had hyperacusis for a number of years. TRT has been a big help - it's given me a few years of an almost normal life.

I've had a setback since Memorial Day weekend. I'd like to share about it for support. Some of my symptoms are a bit different than what is often posted here, so I thought I'd put it out there for feedback. And, perhaps others have similar issues.

I'm sensitive to both sound and vibration. It feels like the ear is bruised and anything moving my ear hurts it. My inner ear feels like a jar of water that sloshes every time I turn it. So, turning my head, standing up or sitting down, walking - any movement - I can feel it in my ear. I can feel my footsteps in my ear. Also riding in a car. The feeling has caused nausea- I carry plastic bags in my car just in case. Nausea can come from the car, listening to music, talking to others, moving, etc. Exercise is difficult. My ear feels sore, especially when I lift something. Facial numbness in response to sound/vibration is another symptom.

This current episode started in a crowded restaurant. I felt something tearing or breaking in my ear- kind of like electrical shocks, then a numb feeling.

The next day I woke to my ear drum fluttering, and the "sloshing" feeling when I turned my head. And of course sound sensitivity.

I took it easy in work ( I'm a carpenter) - stayed away from power tools - and in a week or so I was symptom free.

I hopped on my bike, rode a few miles, and realized my ear was getting bad again from the vibrations on the road. By the time I got home, my ear was really bad, and didn't ease up for months.

A CT scan shows no dehiscenence. MRI is OK. Balance testing shows no abnormalities.

So I am thinking this is related to hyperacusis.

In the last four months, I've only had one let up of symptoms, and that started this past week. A friend drove me to the DR - 4 hrs round trip. My symptoms subsided on the way up, and at the dr's , and on the way back. We even stopped at a restaurant for dinner .

So I had a couple of normal days. This a.m., I tried the bike for a few blocks. Symptoms returned by the the time I got back.

So, anyone have similar symptoms, especially with the vestibular issues? Any wisdom on what is going on?

Much thanks"

 

[SouthernSurgeon]

Why exactly do you keep bumping this dead thread to push your personal agenda?

 

[Johnista]

Why exactly do you keep bumping this dead thread to push your personal agenda?

Because I care! Because my life and other's peoples life's are severely affected by ignorance about how our sensory system works. I'm trying to create awareness about a very treatable health problem. People need help with this, and it's a doctors job to find out what's going on and get people the right help ... not to hurt people.

Do you care? How about any other doctors around here, do you care? I'm not here to bash ENT's and other doctors, but why you all have such apathy for this subject is beyond me. May just be wasting my time but I've learned the importance of trying. I don't give up ... hopefully some people will read this thread and get something out of it.

 

[SouthernSurgeon]

Because I care! Because my life and other's peoples life's are severely affected by ignorance about how our sensory system works. I'm trying to create awareness about a very treatable health problem. People need help with this, and it's a doctors job to find out what's going on and get people the right help ... not to hurt people.

Do you care? How about any other doctors around here, do you care? I'm not here to bash ENT's and other doctors, but why you all have such apathy for this subject is beyond me. May just be wasting my time but I've learned the importance of trying. I don't give up ... hopefully some people will read this thread and get something out of it.

You incorrectly conflate people not caring about your (poorly informed, biased, personal agenda driven) posts with not caring about the condition and their patients in the first place.

 

[Johnista]

You incorrectly conflate people not caring about your (poorly informed, biased, personal agenda driven) posts with not caring about the condition and their patients in the first place.

I think you're the one that's poorly informed. Are doctors like Dr. Jastreboff, Dr. Nagler, Dr. Jonathan Hazell and others who professionally treat sound sensitivity problems also poorly informed? They are well aware of the ignorance of the medical community about sound sensitivity.

Was the head of Neurology at a highly acclaimed university hospital poorly informed when he told me he's never heard of anything like my condition and said that no one in the state could help me. Why couldn't anyone in the state help me with this. Why can't I still find anyone local who can properly diagnose my condition or offer any help? Who's misinformed here?

If you all want to show me how uninformed I am, share your breadth of knowledge on the subject with me instead of throwing out snide remarks.

John

 

[Johnista]

Anyway, SouthernIM I'm not here to pick a fight. Do you treat hyperausis? Any ENT who wants to be properly informed and help people with the condition could take Jastreboff's 3 day course. Your name would be on a list of TRT providers and people with hyperacusis would seek out your help. You could make a difference!

Best Regards,
John

 

[resxn]

You're right. You got us, well at least me anyway. I'll have to admit it. I really don't try to help people. It's too hard. I tell people with loud tinnitus, hyperacusis, and sound sensitivity to suck it up. They're just being pansies. I tell them to go away from my clinic so I can focus on a patient with a real problem that I can do something about. Something where the care is lucrative. I simply tell them to take 2 prozac and call their psychiatrist in the morning. You're so right Johnista, John, or JimmyJohn8. You've beat the truth of it out of me. My goal throughout my career has been to dump on the sufferers and focus on something I can cut out. I feel so foolish for trying to have tricked such a clever troll otherwise. My apologies. I'm a liar and an idiot and clearly incapable of helping. I'm going to refer everyone to Dr. Jastreboff's outstanding website. Clearly, he has developed a model that is far superior to the neuromonics device. He's far better than the Callier Center. Or the Marion Downs' Center. Or any of an hundred other places. All ENT's are stupid. Thank goodness there are enlightened trolls.

Ban now please. Again.

 

[KLPM]

resxn based on what you just wrote, you sound like a pretty awesome guy. Don't mind the joker.