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alexc2201

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Reply with quote  #1 
Hello, all,

I've been suffering from Hyperacusis for over five months now and have decided the pink noise cd provided by this site is the way to go. My questions.

Can the pink noise cd be used alone, with no assistance from any medical professional? I assumed this was the case but saw a comment on another thread stating the pink noise cd has to be in conjunction with care from a medical professional. This is confusing as I've read about people getting better by using just the CD.

What is the difference between buying the CD and buying the pre-loaded iPod? It seems it would be cheaper to buy the cd, buy a cheap CD player, get the right earbuds and download the CD to the proper format, but with it being such a delicate situation if spending £100 more ensures everything is done properly then of course that's what I'll do.

Do you just play the pink noise at the same level the entire length of treatment, or do you have to increase the volume over time, and if so, how do you gauge this?

I apologise if these questions have been answered but I have looked and aren't having any luck. Thanks [smile]

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Joseph_Redgate

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Reply with quote  #2 
Hello Alex,

If you haven't already done so, I would recommend that you seek out an audiologist that is familiar with H&T and discuss it with them.  The internet and discussion forums can be very helpful and informative, but it is always a good idea to speak with people who specialize in these things. 

I have heard various accounts of people using pink noise CDs or devices on their own and experiencing a good deal of relief, but I have also heard the exact opposite and that some people have made themselves much worse attempting to treat themselves without speaking to professionals first.

It might not be the answer you were looking for, but I strongly suggest talking it over with an audiologist before attempting any treatment.

__________________
"A lie can travel half way around the world while the truth is putting on its shoes." C.H. Spurgeon
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Rob

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Reply with quote  #3 
alexc2201 -

Welcome to the site.  It is important for you to be evaluated by a hearing healthcare professional who is experienced in diagnosing and treating hyperacusis.  It's fine to order the CD and to use it, but some guidance from a professional could be very helpful to you. 

You are asking good questions.  

Rob   

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alexc2201

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Reply with quote  #4 
Thanks, both.

I saw an ENT a few months ago, but like a lot of people seem to experience, he wasn't helpful, and actually only used the word ''Hyperacusis'' after I brought it up. His answer to the problem was ''I think it will get better in time.'' Is Jacqui Sheldrake the only person I can see about this? I read that you need to get an expert to assess you, but then I read that she is the only person suitably qualified in the UK, where I am. I also read it would cost around £300 to see her for this, which is offputting for a diagnosis.

Anybody have any answers to my other questions too? [smile]
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alexc2201

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Reply with quote  #5 
Nobody?
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Aplomado

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Reply with quote  #6 
Some people get better with time, but it is not something to count on.  I didn't.  You should really see an audiologist that does TRT therapy and get started with it ASAP.  It is not cheap; but it is worth it.

I recommend that you do TRT with the wearable sound generators and do other sound therapy through a cd player etc using the pink noise cd, water noise etc.

I find it is helpful to wear the ear generators and listen to open field noise also... that is just me.

TRT really can work; did suffer a relapse unfortunately after getting better, and am slowly recovering again.

Don't just sit around hoping things will get better on their own, see a competent audiologist and do your TRT.

This is what I do in addition to TRT (but the results reported in the article did not happen so quickly to me!!!! It is still helpful though):

http://www.ncbi.nlm.nih.gov/pubmed/19268128
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Rob

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Reply with quote  #7 

I saw an ENT a few months ago, but like a lot of people seem to experience, he wasn't helpful, and actually only used the word ''Hyperacusis'' after I brought it up.

 

You would be in a much better position if you were evaluated by a hearing healthcare clinician who is familiar with how to diagnose hyperacusis and treat it. 

 

His answer to the problem was ''I think it will get better in time.''

 

Sometimes, hyperacusis can get better over time.  Often, it requires much more than just letting some time pass. 

 

Is Jacqui Sheldrake the only person I can see about this?

 

Not at all.  But she is a very knowledgeable, very experienced, and very good clinician. 

 

Can the pink noise cd be used alone, with no assistance from any medical professional? I assumed this was the case but saw a comment on another thread stating the pink noise cd has to be in conjunction with care from a medical professional.

 

Pink noise can be used as part of a treatment plan for hyperacusis.  It doesn’t have to be used in conjunction with care from a medical professional, but there are other things you would want to do as part of treatment, such as not over-relying on hearing protection and not sleeping in silence.  From what you have written, it sounds like you described your symptoms to your ENT and he determined from your description that you have hyperacusis.  I think it would be in your best interest to find out for sure by being evaluated by someone who will test your sound tolerance.

 

It seems it would be cheaper to buy the cd, buy a cheap CD player, get the right earbuds and download the CD to the proper format, but with it being such a delicate situation if spending £100 more ensures everything is done properly then of course that's what I'll do.

 

I like the way you are thinking about this.  A very important part of ensuring “everything is done properly” is to be properly evaluated and diagnosed.  I think that is your next step. 

 

Do you just play the pink noise at the same level the entire length of treatment, or do you have to increase the volume over time, and if so, how do you gauge this?

 

It is fine to increase the volume over time, but never play it so loud that it covers over sound in your immediate environment.  You should be able to clearly hear everything around you – people talking to you, music, television, etc. 

 

Rob
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alexc2201

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Reply with quote  #8 
Thanks for your replies, both.

Aplomado,

You say find an audiologist that knows what they're doing, but how exactly? The list of people that do TRT on this site has only Jacqui Sheldrake in the UK. When you search Google you get nothing. I've been through the NHS and the ENT I saw was useless. So can someone please, please tell me where all these other experts in the field are hiding? [confuse] Thanks for the link and other advice.

Rob,

''You would be in a much better position if you were evaluated by a hearing healthcare clinician who is familiar with how to diagnose hyperacusis and treat it.''

To repeat what I said to Aplomado, I would be thrilled to do so, if only I knew where to look [confuse]Thanks for your other advice.

 



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Rob

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Reply with quote  #9 
alex -

If you live near London, I suggest you contact Jacqui Sheldrake at the Tinnitus and Hyperacusis Centre, in London.  She has successfully treated many hyperacusis patients and I am sure she can be a great help to you.  Here is Jacqui's contact information.


email: info@jacquelinesheldrake.com
tel 44+ (0)20 7487 2701  

Rob
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alexc2201

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Reply with quote  #10 
Thank, Rob. I'm gonna give them a call. I don't live near London though, it'll be a six hour train journey there and back [frown]
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alexc2201

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Reply with quote  #11 
Well, I made an appointment and they said it would be between £300-400 for an hour and a half assessment. I just don't think I can justify that, I really don't. There has to be a better option, anybody?
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Rob

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Reply with quote  #12 
What we are willing to spend for a diagnosis and reliable information on the steps we can take to feel better is a personal decision. 

I can tell you that it took me five doctors until I was properly diagnosed with hyperacusis and I would have paid whatever it took for a doctor to tell me what I was dealing with.  It is hard to put a price on one's well-being.

I think a lot of folks with this or related auditory conditions feel the way I did about it, as they traveled long distances to see capable doctors. 

I am certain there are other clinicians in the UK who are quite capable of diagnosing and treating hyperacusis.  Perhaps you can find a good one on a referral basis or someone else from the UK can recommend one to you?  Best of luck.

Rob     
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Aplomado

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Reply with quote  #13 
alexc2201, I paid $3000 to my audiologist.  This got me the sound generators, counseling, and repeated checkups (until I'm done).  It's well worth not being in agony every day.  

Especially considering all the massive amount of money I wasted on useless ENTs, etc... I had two MRIs that were worthless!  I even wasted a bunch of money on a useless
hypnotherapist who said it was psychosomatic!

You need to go to an audiologist who actually knows what they are doing...

Are you going to see 
Jacqui Sheldrake?  Based on her website, it looks like she knows what she is doing, and I would recommend you go.

Before I started treatment with my audiologist, I was in agony for six months, wasting time and money on ear doctors and hoping it would get better on its own.  I only started to
see improvement after starting TRT.
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alexc2201

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Reply with quote  #14 
Thanks for the responses.

No, I'm not going. My H isn't as bad as yours was, the only time I've felt pain is at night if I've had a set back during the day, and then it's only minor pangs, annoying but not overly painful. I don't cringe when people are talking to me, and general everyday sounds seem louder to me now, but they don't cause me pain. It's when I listen to something that my ears perceive as too loud for a period of time, like a TV or loud music in a restaurant  I'll get the various uncomfortable feelings in my ears. I went to a football match recently, with the away fans, the loudest, so that's two thousand men singing for ninety minutes, and it caused slight discomfort but nothing more. That's why I don't want to pay £300-400 for an hour and a half, because I don't feel it is that severe, and I know I'll feel completely short-changed. You guys must make really good money, 'cause you talk about dropping thousands of dollars on a coin toss like it's nothing [smile]

If anyone in the UK is reading, is there anyone you can recommend that won't charge so much? London was going to be a six hour train journey there and back, so I don't mind the distance.
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Aplomado

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Reply with quote  #15 
I'm glad your hyperacusis isn't too bad.

I paid the money because every day was pain pain pain.  My ldls were about 60 when I started treatment.

I don't have any more advice for you.
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Billymoe

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Reply with quote  #16 
I'd give up every penny in my bank account if I could get back my ears to the 
way they were before I had Hyperacusis.

Bill M.
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Johnloudb

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Reply with quote  #17 

" I went to a football match recently, with the away fans, the loudest, so that's two thousand men singing for ninety minutes, and it caused slight discomfort but nothing more. "

Hi, doesn't sound like you have hyperacusis. That's is way loud.  LDL's of 100dB are considered normal. That doesn't mean you don't have a sensitivity problem ... sounds like you do. But that is not hyperacusis. Sounds more like misophonia, and that is very treatable, so no worries. But you really should get help with it ... help involves retraining your ears to respond normally to everyday sounds.

Restaurant music is not that loud in most cases and certainly below your LDLs since you tolerated a loud football match.

You can use sound enrichment, which helps and the pink noise also helps. treating misophonia is mostly  about doing exposure desensitization and cognitive behavior therapy. With pink noise you just set it at and easily audible level (not loud) in a quiet environment, and then listen for 8 hours if you can. if it becomes fatiguing or painful, or sets of loud tinnitus. Stop listening for that period. 

For instance if you can tolerate a sound for a period a time with no pain then it is aversion, NOT hyperacusis. So you very gradually listen longer to these sounds you have aversion to. Its helpful to listen to music a period everyday to.

Anyway, you really should seek professional help with this. It can be difficult, people worry about their symptoms and generally do less exposure, not the other way around, without directive counseling from a good TRT doctor who knows how to treat misophonia. 

I agree with comments that it's money well spent. You don't want to go backwards as so many often do. 

John

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alexc2201

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Reply with quote  #18 
Aplomodo

Thanks for your input. I hope your ears improved. I apologise if I have been rude at any point, it's just frustration boiling over. The last several years have been a nightmare for me, and after toughing it out my life was really beginning to turn around, then like a punch in the face this issue comes out of nowhere. And I'm trying to take the first step to fix it but it feels like smacking my head against a wall.

John,

Thanks for the post.

I know the first thing I need to do is find someone that can correctly diagnose the problem, but I can't pay £300-400 for that, it's robbery, it really is. I'm going to post on here and other places and see if someone in the UK can recommend someone that won't charge an exorbitant fee.

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Rob

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Reply with quote  #19 
alex -

You don't sound like you are describing hyperacusis.  If you did, it is unlikely that you would be able to attend a football match and feel only "slight discomfort".  Perhaps, at best, you are describing minor hyperacusis.  Perhaps.  If the task before you was to simply find a doctor to confirm you have hyperacusis, I'd say ask your ENT to recommend an audiologist who can administer a loudness discomfort level (LDL) test to you to determine if your tolerance of sound is in the 100s and 110s or not.  (Some clinicians refer to this as a test to determine uncomfortable loudness levels.)  The test is inexpensive and there are countless hearing healthcare professionals in the UK who could administer it to you.  The problem with this approach is that it may not help you with your own particular challenges that have made the last several years a "nightmare".  

I think the real challenge for you is to figure out what you are dealing with - and for that, your best bet is to work with a clinician who can help you determine what is going on and advise you on steps to take to get your life back, so that you no longer have "various uncomfortable feelings" in your ears and no longer feel blindsided by sound.  Decreased sound tolerance can take the form of hyperacusis, but other things too. 

I don't want you to pay £300-400 and feel shortchanged either.  As I said earlier, the amount a person is willing to spend on a health-related challenge is a personal decision.  I suggested Jacqui Sheldrake to you because she has evaluated more individuals suffering from some form of decreased sound tolerance than anyone else I can think of in the UK.  She has been doing this for a long time and could help steer you in the right direction.  I wanted you to understand where I'm coming from with my recommendation.  Whatever you decide to do, I want to wish you the best of luck. 

Rob        


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StringBean

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Reply with quote  #20 
Alex,

Could you describe in more detail what exactly is bothering you?

I can tell you I did TRT on ipod earbuds without seeing a trained specialist. I wouldn't recommend doing it all on your own like I did, but the principles of habituation and neuroplasticity will still work if you follow the protocol. Please make absolutely sure you know what you are getting into before you begin. It is a serious, time-consuming treatment protocol that does not work if you don't commit absolutely.
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alexc2201

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Reply with quote  #21 
Thanks for your replies, much appreciated.

Rob,

That's part of what is bothering me, not knowing exactly what it is, if not Hyperacusis. The last time I booked an appointment with my ENT it took six waits for it to come through, and when I saw him he was useless. I could imagine waiting another six weeks then going to this guy and hitting a dead end. But I will consider that. The stuff that's made my life a nightmare the last several years is unrelated to ear issues. I understand why you suggested Jacqui Sheldrake, but like you seem to understand yourself, whereas some people probably need to pay £300+ to see her, there's a decent chance I don't.

Stringbean,

I had Tinnitus for a few years, but I was managing it, it wasn't stopping me from getting on with my life. But the Tinnitus came about probably because of noise exposure. I used a thing on Youtube that was supposed to help T but it hurt my ears and they rang loudly for about two weeks then went back to the normal level of T. About three months later I had a spicy meal, chilli con carni, and the next morning my T was a lot worse, and has been at that level ever since, though it isn't debilitating. Seemed a bit of a coincidence the chilli incident happened less than three months after the noise exposure thing.

Point of that little anecdote was that my ears also became sensitive to really bassy sounds, like when you have a speaker and you turn the bass on, it hurt my ears. Well, six or so months ago I got a sound system for my new TV, watched a movie with the bass on, and ever since my ears have been sensitive to non bassy sounds. I can only watch the TV at a low volume or it causes a weird, umcomfortable feeling in my ears. Music in say a restaurant, that previously wouldn't have bothered me, now does. Before Xmas I was in a restaurant for over an hour where the music was louder than it usually is, and as a result at night, when I'm in bed, for a few days afterwards, I experienced pangs of mild pain in both ears. That's gone now, for the most part. Sounds like a digital watch beeping don't cause me pain, but seems extra clear, if that makes sense?

In regards to the TRT on a ipod, if I do have to do that I'm quite lucky as I work from home so would be able to listen to eight hours a day with no trouble. I would be sure to know what I was doing first though, I'm no well aware of how delicate the ears are. Did the TRT work for you?

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Rob

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Reply with quote  #22 
Alex -

I disagree.  I think it would be helpful to you to be evaluated by Jacqui Sheldrake.  Here's how I see it.  When you try to do this on your own, you end up feeling worse.  When you go to a doctor who apparently has very little, if any experience diagnosing someone with some form of decreased sound tolerance, it feels like a waste of your time.  Doing this on your own and going to clinicians with little experience with these types of challenges has not served you well. 

I don't know if you are describing hyperacusis, misophonia, or some other condition.  I do know that your best bet in determining what is going on and doing something about it is to make an appointment with someone who has experience in these things.  So, I hope you change your mind. 

Rob
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alexc2201

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Reply with quote  #23 
Hi, Rob,

Thanks for your continued help. I know I come across as irritable, but it really is appreciated, as is the help from everyone else on here.

The only advice I've been given so far is from an ENT who wasn't very knowledgeable, so it isn't as if I've exhausted every other avenue. I've done virtually nothing in this regard.

I live in the City so this morning went to all the audiologists advertised in my city centre. The best I got was from a place that did hearing tests but nothing to do with Hyperacusis. The guy was pretty knowledgeable (even used the word ''useless'' when guessing how my experience with the ENT went) and suggested I type in ''Hyperacusis clinic'' in to Google, as there is one two hours from me that his boss (or someone higher up in the business) uses for his Hyperacusis. It was the Tinnitus Clinic, I think there's four in the UK, so still not what I was looking for, although I get a bad feeling I'll end up biting the bullet and having to pay through the ear, nose and throat.

''I'd say ask your ENT to recommend an audiologist who can administer a loudness discomfort level (LDL) test to you to determine if your tolerance of sound is in the 100s and 110s or not.  (Some clinicians refer to this as a test to determine uncomfortable loudness levels.)  The test is inexpensive and there are countless hearing healthcare professionals in the UK who could administer it to you.''

This is why I'm responding now. You say there are countless people but I can't actually seem to find them? Whenever I search for an audiologist all I get are people who do a basic hearing test. I almost French kissed the guy today that offered me the advice on searching for a clinic, that's how starved of direction I've been to this point.
Where exactly do I find the people? All I want is to try and find an inexpensive test to determine precisely what is wrong with my ears.
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Paulbe

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Reply with quote  #24 
Trust me Alex, its not just the UK.
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alexc2201

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Reply with quote  #25 
Well, I'm going to see Jacqui Sheldrake soon, I just need to put the money aside first rather than make a dent in my savings.

I just needed to ask, if I could find somebody that could tell me my LDL's, would this alone be enough for me to perhaps ascertain what the problem with my ears are? Say if my LDL's were a lot better than the average Hyperacusis sufferer, then I could maybe figure out what it wrong through my own research? With train costs, an hour and a half appointment to see Jacqui Sheldrake is gonna run me around £450, so I want to make sure I haven't missed an option. Thanks so much.
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Aplomado

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Reply with quote  #26 
Any audiologist should be able to tell you your LDLs.  Just make sure that they go slow and respond if you want to stop.  I don't know that you would save much money that way though.
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alexc2201

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Reply with quote  #27 
Thanks a lot. But what I really wanted to know is that if I find out what my LDL's are, would that allow me to diagnose what is wrong with my ears? So, say my LDL's are number whatever, it would rule out Hyperacusis and most likely be *insert condition here*?
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Aplomado

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Reply with quote  #28 
Yes, I see... I suspect that that the specialist you have an appointment with may be able to help you with whatever your audiology issue... whether it is phonophobia, hyperacusis or something else.

Audiology appointments aren't cheap anyway if insurance doesn't pay them, that's what I was thinking of.
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Paulbe

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Reply with quote  #29 
Which is how you would find out that nobody will really answer that final question "what is wrong with me?".  Tinnitus, Hyperacisis?  they are symptoms. The LDL measures the intensity of the symptom, rather like a 1 - 10 pain score.  This whole thing is based around treating symptoms because no-one really understands, or knows how to definitively or efficiently diagnose the primary disease process, ears being what they are.  Do Cardiologists treat chest pain with long-term tolerance building measures?  Of course not, but that is how audiological problems of this kind get treated because that seems to be the best (all?) we have at this time.  Don't waste anymore time and money with ENTs either unless you get put onto someone exceptional.  This kind of condition is not part of their specialty once the simple outer/middle ear solutions are exhausted.  For that you would have to seek out an Otoneurologist.  And for that, needle, meet haystack.
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Aplomado

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Reply with quote  #30 
If your LDLs are 90 or above you probably don't have hyperacusis.  I say probably because I'm not too confident in LDL ratings.  LDLs are defined as discomfort with the sound played for 1 minute.  My in experience, the audiologist plays the sound for a second or two, so I suspect sometimes LDLs are overestimated.  There's a huge difference between tolerating a sound ok for 2 seconds and 1 minute.
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Paulbe

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Reply with quote  #31 
There is a school of thought even among Audiologists that LDLs serve no purpose other than to reinforce the fear and anxiety factor while providing no therapeutic benefit. 
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alexc2201

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Reply with quote  #32 
So the opinion is that finding out my LDL's alone won't be enough for me to accurately figure out exactly what is wrong with my ears?
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alexc2201

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Reply with quote  #33 
Sorry. Thanks again for your replies.
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Paulbe

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Reply with quote  #34 

"So the opinion is that finding out my LDL's alone won't be enough for me to accurately figure out exactly what is wrong with my ears?"

No more than scoring pain on a 1-10 scale will tell you what's going on in your chest.  For most of us identification of the symptom is the only "diagnosis" we ever get, and audiology is the only only real support we get.  Whether you have LDLs of this or that level is less important than understanding you have sound intolerance and dealing with that.  This is one of the reasons I often argue that Dysacusis is the more correct term, not Hyperacusis, as I think Hyperacusis is a subset of the condition of Dysacusis, and not all sound intolerances are the same or necessarily have the same causes.  Not all of us suffer from volume issues.  I suspect where you are going is wanting to know the actual cause and whether there is a medical or surgical process by which it can be reversed.  That is the preserve of the ENT at this point in history, and you've already seen how well they've picked up that ball and run with it.  I know I can sound negative, but I've been in almost exactly your position for over a year now and the only real sense of being helped that I've had was when I got in to see Myriam Westcott (leading Australian audiologist) a year ago, but I live on the opposite end of Australia to her, so follow-up wasn't feasible, and there is no-one up here with the skill and maturity to work with confidently, so I'm certainly sympathetic to how alone you may be feeling with this.  I got sick of spending money on people who thought chatting was therapeutic at 100+ bucks a pop, and resolved I'd go it alone as much as possible unless someone emerged out of the ether who could actually resolve or improve my physical condition.  I'm expecting that to happen any century now.
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Rob

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Reply with quote  #35 
I had my LDLs administered a number of times by the audiologist who worked with Dr. Jastreboff at Emory and was my audiologist in private practice.  If a tone immediately caused discomfort, we stopped.  I didn't try to imagine what that tone would sound like if I were to hear it for a minute.  I was always tested twice in each ear and he always used the second set of readings. 

Any professional who says LDLs serve no purpose should find another career, in my opinion.  LDLs are not overestimated.  They are essential for folks with decreased sound tolerance, and very helpful.  They provided me with a lot of hope as I started to improve my tolerance of sound.  They also showed me areas (i.e., frequency ranges) where I needed to improve.  They didn't reinforce my fear or anxiety about sound; the opposite is the case.  They were a fantastically helpful tool to show me how I was doing independent of my own take on things. 

Alex, if your LDLs are below about 100 for the various frequencies measured, then you may have some degree of hyperacusis.  (An experienced clinician would be in the best position to make that determination.)   If your LDLs are around 100 or more, then something else is going on for sure.  

*****

Whether you have LDLs of this or that level is less important than understanding you have sound intolerance and dealing with that. 

Strongly disagree with you on this, Paul.  There are different kinds of sound intolerance and different ways of treating them.  A person with phonophobia wouldn't treat that condition the same as a person with hyperacusis. 

unless someone emerged out of the ether who could actually resolve or improve my physical condition.  I'm expecting that to happen any century now. 

Paul, did Myriam Westcott diagnose you with hyperacusis? 


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Paulbe

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Reply with quote  #36 
Yes she did, and TTTS.  She didn't do LDL's.  She believed they were unhelpful as far as treatment options went, and maybe even psychologically detrimental, reinforcing existing thought processes when new ones needed to be built.  She believed in time as the healer, but without setting targets, which included focusing on LDLs as some kind of yardstick.  She was very specific about allowing yourself to heal, using the principles of TRT and not being driven by targets of numbers and times, thus not being disappointed (set back) by not reaching specific dates or numbers.  She was very much about a positive outlook without adding artificial restraints.

I've worked in Healthcare all my life, and I understand where she's coming from.  Measuring everything does not always add value to the process.  For some patients, yeah, that "yardstick" can be something that allows them to see how they are going.  Personally, for me, I think I would have gotten bogged down worrying about it and living for the next test all the time, and I have improved without knowing my LDLs.  Myriam is very much of the TTTS school of thought (autonomic retraining).

Would you like to email her and tell her to find another career?
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Rob

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Reply with quote  #37 
I disagree with Westcott's perspective on LDLs, or the perspective you described.  I think LDLs are a fantastic way to see how you're doing and a very important diagnostic tool.  LDLs showed me where I was progressing and where I needed to make changes.  Since I treated myself, using customized pink noise I created in a recording studio, facts about my progress were important to me.  I don't think the test is psychologically detrimental.  I found the opposite was true for me.  It didn't reinforce anything negative for me; rather, LDLs were just a useful tool.  They reinforced what my own ears were telling me! 

Like Westcott, I don't believe in setting targets either.  I don't think treating hyperacusis has a thing to do with setting targets.  It has to do with getting off the sidelines, with consistency, learning, working at it, and being flexible in one's approach.   

I wasn't focused on LDLs.  In fact, between tests I never gave them a thought.  As for disappointment, I had more than my share of that - but it had nothing to do with how I did on a test.  Hyperacusis treatment frequently doesn't go in a straight line.  I had to get used to that, and did.  The test was one of a number of different things that helped me feel positive and hopeful that I could do something about hyperacusis.  Another thing that made me feel that way was to get out in the world.  Another thing was that during the darker times when I had to dig deep, I did.   

Rob
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Paulbe

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Reply with quote  #38 
OK.  That's great, but that's whats worked for you in the way you did things (access to resources and all that).  Myriam's observations come from many clients over many years and I'm sure she didn't come to this opinion for no reason, and I'm sure not all her clients have a recording studio.  Not knowing has ultimately made no difference to me as my improvement seems to have taken much the same time and pattern as others here who have gone the full investigational gamut (I have read a lot of posts, here and elsewhere...one step forward two steps back and all that).  I wouldn't be so quick to devalue an opposing philosophy of treatment in a field notorious for grey areas anyway.  I've certainly given thought to the idea of having LDL's done, but for me, it just hasn't seemed that I would get anything additional from doing so.  Getting out in the world, as you say, probably did more to get me going than any TRT protocol, as it made me confront that fear....that damnable fear.  Myriam isn't big on white noise/pink noise etc either.  She believes that autonomic retraining (basically habituation) can be achieved with any comforting, pleasurable, non-intrusive sound, not necessarily just the white noises. 

Anyway Alex, there it is.  You can get LDL's done if you feel that you need to work from a known baseline and are happy to do it that way, or you can skip it and just read the messages of your own body and experience over time and see if that works for you.  Either way, you still need at least some face-time with someone who understands what this is.
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Rob

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Reply with quote  #39 

Myriam's observations come from many clients over many years and I'm sure she didn't come to this opinion for no reason,

 

First of all, in 2013, Westcott wrote "loudness discomfort levels are in general use as a measure of hyperacusis as well as tracking the efficacy of hyperacusis desensitization therapy."  Second, Dr. Jastreboff’s observations on LDLs also come from many clients over many years and he didn’t come to his opinion for no reason.  His views on LDLs can be found in his book and in various papers he has written. 

 

and I'm sure not all her clients have a recording studio. 

 

I don’t have a recording studio.  I was resourceful.  You have the same opportunity I did to be resourceful, just in a different way that works for you. 

 

I wouldn't be so quick to devalue an opposing philosophy of treatment in a field notorious for grey areas anyway. 

 

Paul, the field isn’t notorious for gray areas.  The chances for improving decreased sound tolerance are very, very good. 

 

Myriam isn't big on white noise/pink noise etc either.  She believes that autonomic retraining (basically habituation) can be achieved with any comforting, pleasurable, non-intrusive sound, not necessarily just the white noises. 

 

I disagree that any sound can help a hyperacusic improve one’s sound tolerance.  The reason broadband noise is useful is because it covers a wide frequency range.  I also disagree that re-establishing sound tolerance has to do with habituation.  It doesn't sound like Westcott administered TRT to you.  

You can get LDL's done if you feel that you need to work from a known baseline and are happy to do it that way, or you can skip it and just read the messages of your own body and experience over time and see if that works for you. 

 

Absolutely disagree with you here.  LDLs are a tremendous diagnostic tool.  The percentage of folks who read the messages of their own bodies and are convinced they have hyperacusis – only to learn that they have misophonia – is non-trivial. 

 

Rob

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alexc2201

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Posts: 18
Reply with quote  #40 
Thanks for your thoughts, both.

It seems to me that it's either Hyperacusis or Misophonia, and that's very likely what a clinician will tell me. I can't do the therapy thing as it's just too expensive, so will be using the pink noise cd. The thing is, if the pink noise cd is the path I'm going to take with this anyway, is there any point in me seeing a clinician? Do I really need to go through all the expense just to be told something I already probably know, and I already know the treatment I'll use? If it was £50 then I'd just do it, but £450-odd is a different matter. It isn't that I can't afford that, but I don't like wasting money, let alone a large amount.
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Aplomado

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Posts: 711
Reply with quote  #41 
I recommend going.
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emmy

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Reply with quote  #42 
Alec you make the correct decision NOT to have the LDL test. 
You can tell on your own whether you are getting better or worse.
A test will tell you nothing you do not already know yourself by the feeling in your ears.  
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Rob

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Posts: 4,049
Reply with quote  #43 
It seems to me that it's either Hyperacusis or Misophonia, and that's very likely what a clinician will tell me.  I can't do the therapy thing as it's just too expensive, so will be using the pink noise cd.  The thing is, if the pink noise cd is the path I'm going to take with this anyway, is there any point in me seeing a clinician?

If you are interested in a diagnosis,  I'd say yes.  You wouldn't use the pink noise CD for misophonia, for starters.  It's great for hyperacusis, but it wouldn't help someone with misophonia.


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