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James_ATW

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Reply with quote  #1 

 

Hi, my name is James and I desperately need your advice on how to deal with a severe case of hyperacusis that has been plagued me for 5 years now but recently become much much worse. I’m in a really tough spot and not sure how to dig myself out. I’m hoping that if I explain how I got to this point, then someone might be able to advise me how to dig myself out of this whole I find myself in. I came here because while I have a diagnosis, and TRT ear piece but most healthcare professions in my area of the UK have have been of little help.

 

In the beginning I didn’t have a name for the disease.Doctors mocked my request to see audiology, the audiologist had no clue at all and was very condescending. After dropping out of university (I would later finish my chemistry degree from home), my solution to the problem before I got to see an ENT, almost a year later, was to wear ear defenders 24/7 and sticking to my house as much as possible because I was scared and panicked. A remedy which obviously doesn’t work. Fast forward several further declines in sound tolerance from events such as car journeys even with ear defenders on, conversations that have last more than a couple of hours and an MRI and my tolerance to sound became cripplingly low. Almost Everything hurt and I have needed my ear defenders 24/7 ever since.

 

The hyperacusis manifests itself as pain and tension bilaterally in both ears, and lasts well after offending noise has passed several hours or days depending on the degree of aggravation. The pain itself starts of relatively minor but can quickly build to intolerable levels. I also have tinnitus and hearing loss but they are both manageable, if slightly annoying.

 

I have a TRT ear piece but rarely used it, because I *had* given up much hope long ago. However my sound sensitivity had previously been improving perhaps over 2017 without me being entirely conscious of it. I built upon this in 2018 with positive sound associations like video games and music which I had been previously unable to tolerate (I think). I didn’t bother much with TRT, I was convinced I would never get better, it just started to happen without me being conscious of it.

 

The reason I make this post however is that while I was in a major funk, I have had several major setbacks in terms of of hyperacusis and I feel my sound tolerance has collapsed entirely. I wasn’t in a good place last winter, mentally, and failed to realize the danger I was in. Things had been getting worse after a funeral, a trip to the dentist, a visit to the ENT where I was asked to take my ear defenders off and converse, and finally a social visit (I am very isolated) for a couple of hours.

 

 In the space of a little over one month I’ve gone from being able to hold quiet conversations, listen to quiet music and games without pain to being in constant pain. A pain which has only worsened since becoming constant in late December 2017.

 

The pain has now been constant for near enough two and bit months, it feels like all sound is too much even with ear defenders. My fear is that I’ve collapsed tolerance to the point that all sound is painful and thus I am stuck in a never ending spiral of aggravation and pain.

 

My world has collapsed inwards. I could once interact with the world with my ear defenders on or headphones in the controlled environment of my room. Now I can’t vacuum, converse with my family for any length, listen to anything. My attempts at making it better have only made it worse. I spend my time in my room with ear defenders on alone because it feels like ambient noise is too much.

 

 

Pink noise therapy which I have been trying for just minutes of time, hurts, and I’m loosing hope. My life is a mess because of my condition and own own mental health problems that led to a mismanagement  and sabotage of my condition. The last plan I have is to play pink noise through speakers at a barely perceivable level while I have my ear defenders on and hope for some improvement.

 

TLDR: sound tolerance completely collapsed everything hurts and pain persists well after the noise has ended, and I am not sure how to dig myself out of this hole.

I realize I’ve just spat a wall of text at you but I hope you advise me because I am so very scared and alone and don’t know how to proceed. Please help.My main questions are:

Is it possible that I have worsened my hyperacusis to a point where recovery is impossible? A positive loop of sound and pain.

Can TRT work despite causing pain? Or should I find a different strategy?

 

How can I wean myself off ear defenders? Should I even try at this stage given the severity of the condition?

 

Has anyone else had this type of HA in which the pain lasts well after the stimulus has ended? I often wake up still in pain or still feel the effects of a short car journey with ear protection through the rest of the day, sometimes longer. Recently that pain has been persisting for a lot longer.

 

Is there any hope for me even if the treatment (TRT) is causing me pain?

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phacker

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Reply with quote  #2 
James,

I will give you my routine for reducing the pain.  This is not a quick fix as it will take two to six weeks. The target of my routine is to increase blood flow to the ears.  Take one 250 mg of Magnesium in the morning.  Take two hot baths a day with water up to ears, but do not put the ears under the water.  If you are having pain during the day, put a heating pad on your ears. Take one 5mg of Melatonin a half hour before bedtime. The Magnesium and Melatonin can be purchased over the counter. 

You have to start decreasing the time that you wear your ear defenders once you start getting some reduction in pain.  Wearing the ear defenders full time is only going to make your ears more sensitive to sound and you will never break the cycle. Start with taking out the ear defenders when it is quite in your room and build up the time in your house without the ear defenders. If you need the ear defenders for some temporary loud sound like a vacuum cleaner, put them in. When you go out of the house put in your ear defenders, so that, you do not get a set back once you start improving.  You need to find some type of sound you can handle at a low volume.  You are young and your sound tolerance will improve, but it will take time. Once the pain is gone and you feel up to it start the pink noise at a very low sound level. 

Getting professional help from trained TRT expert could be a great help to you. Check out the list of TRT certified professionals on this site. 




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James_ATW

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Reply with quote  #3 
Hi, thank you for the advice!

I had not heard that melatonin and magnesium are helpful for hyperacusis. I will purchase said supplements and give it a  go, I have nothing to lose.

Previously I had been listening to sounds as I could tolerate but recently (since December) my tolerance collapsed to the point where it hurts literally morning till dusk because for whatever reason, the pain associated with my H takes ages to calm down, and since I feel like everything will now aggravate my ears they never abate. Hence the over protection and further withdrawal.

I find it therefore very difficult to break the dichotomy between over-protection and exposure to noise. As for seeing a specialist I am wearing because I lack transport, money and the car journey would be horrific at this junction. What I could manage four months ago would be unthinkable now.
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phacker

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Reply with quote  #4 
There have been studies that show Magnesium has helped after loud exposure to sound. Magnesium increases the blood flow to the ears. After every set back, I always take the Magnesium.  There are other other people on the H network that take Magnesium. 

Melatonin will help you sleep, so maybe you can take out the ear defenders at night, and studies have shown value in reducing the tinnitus. I was taking the Melatonin to help me sleep and I noticed that my T & H were better in the morning.  Melatonin is not addictive. 

I hope these supplements make your life a little better in the near future.  
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TallDude

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Reply with quote  #5 
Hi James,

I'm in with H for about almost a year now. I also experience pain for days or even weeks.
The last ENT subscribed me Liponixx or Alpha-Lipoic Acid. It is an antioxidant. It passes the blood brain barrier easy and is used for nerve pains. This can be bought over the counter also. I take 2x600mg.
Now, when i expose myself to loud noise, i still notice increased T but no pain anymore. A big improvement. However i have to say he also placed a patch on my eardrum. So, i'm not sure the Liponixx or the patch or the combination of both is helping me.

It doesn't cause any side effects for me, where as GABA-A did. I'm taking Liponixx for about 5 weeks now.

Last saturday i did a test again, drove 2x 60' on highway, when into the city and a crowded very noisy restaurant (with glass and concrete walls all around). I didn't use my plugs for a second.
I've done this several times before (with much lower noise levels) but each time I had days or even weeks onset with much louder T and severe H and PAIN. Today, i'm still fine, just a small increase in T and H, but NO pain.


https://www.webmd.com/vitamins/ai/ingredientmono-767/alpha-lipoic-acid

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phacker

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Reply with quote  #6 
Tall dude,

Was the patch on the ear drum because you had a hole in the ear drum?  Does the use of Alpha-Lipoic Acid cause your T to increase?  


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James_ATW

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Reply with quote  #7 
Thank you for the suggestion, I am truly grateful. When the thread got views but no replies I did despair a bit.

Anyway I will order it off amazon and give it a go.
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EDogg

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Reply with quote  #8 
Hi James,

Thank you for sharing your experience. I’m sorry I haven’t replied earlier but needed to take some time to synthesize a helpful (hopefully) response. You definitely are NOT alone. There are many here and in other sites around the web who have pain as a significant accompanying symptom with hyperacusis. I am so sorry to hear how difficult this has become for you and that you’ve been dealing with it for so long. You mentioned you have TRT devices. Have you been evaluated and received treatment from an audiologist who has significant experience in treating hyperacusis?

I, too, have lasting pain from even moderately loud sounds and certain people’s voices. Mine comes and goes, can last anywhere from a day or two to weeks. Burning deep inside ears, fullness, burning sensation radiating to scalp, forehead, throat, outer ear, jaw. I, too, found TRT was too harsh for my ears to tolerate and caused pain. In fact, anything directing sound in my ears, headphone for example, also cause ear pain. Sometimes it feels like NO sounds could be helpful, but that’s just not true. There are sounds that you can tolerate, you just need to find them. For me, it took an experienced audiologist to point out that I could tolerate certain sounds through external speakers, like gentle rain, or the sounds of a river, or ocean, at low volumes, without any repercussions. These are sounds that I like to hear, that bring peace and are pleasant. I am working on slowly playing them in the background each day, with the eventual goal of increasing the length of time played and then, very slowly, increasing the volume. I am in control on it. I have very severe hyperacusis, with lasting pain, and this is part of my plan.

Another part of the plan is addressing the pain and psychological collateral damage that inevitably comes from suffering from this condition for a period of time. Pain is both a physical sensation and also a psychological perception. It is very tricky to treat, but it is possible. I am pursuing help from my primary doctor, from my audiologists and soon likely from a neurologist, to help better address the ear pain part. It may very well be that for me, and perhaps you, a little help treating the pain will allow us the opportunity to desensitize our auditory system without suffering. That is the ultimate goal. I do believe the pain and the hyperacusis are related (in my case), and that improving sound tolerance will ultimately decrease the pain. A simple remedy I have found that eases my burning ear pain is to ice my ear, my neck and scalp. I also experience some pain reduction with several prescription medicines.

To answer your specific questions: No, I don’t believe you have reached a point of no return with your hyperacusis. You are in a very difficult spot right now, but you can bounce back from this and improve. Why do I say that, coming from someone who struggles immensely with this? Because I have seen so many success stories throughout various forums. This is a marathon, not a sprint, and it can take a long time to improve, but you and I both can get better! This forum is rich with many years of discussion and thousands of users. Specifically when it comes to ear pain, take a look at Rob’s story, or Laurene, or Maree, or Patti, or Saab.. many more I am probably missing.

Check out this story: https://www.audiologyonline.com/articles/overprotection-hyperacusis-phonophobia-tinnitus-retraining-1105

If TRT is causing you pain, It might not be the right approach for you, at least right now (my opinion). There are many other ways to desensitize to sound, including one I mentioned above. There is not a one size fits all treatment, especially with pain issues. I think you will definitely benefit from some professional evaluation and guidance to help you break this cycle and come up with some creative solutions that work for you. Some people have gotten great benefit from working with a pain psychologist in concern with sound treatment. Just an idea.

Yes, you can wean off the ear defenders. Slowly and systematically, over time. Again, would be best to have some professional direction on this if possible. But the answer is yes you can wean off them and yes you can improve. Just like you improved before, you can improve again.

Here’s one audiologists approach to treating hyperacusis with pain that you may find helpful:
https://journals.lww.com/thehearingjournal/fulltext/2017/02000/Effective_Management_of_Pain_Hyperacusis.7.aspx

I hope that you can find something helpful here. I am on the journey as well and we are here to help each other along the road.

Best,
EDogg



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TallDude

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Reply with quote  #9 
Quote:
Originally Posted by phacker
Tall dude,

Was the patch on the ear drum because you had a hole in the ear drum?  Does the use of Alpha-Lipoic Acid cause your T to increase?  




No, it is placed on the eardrum to relax the tensor tympani muscle. No, my T hasn't increased using Liponixx.

EDogg is right, you can improve again.

Read the thread on friendly chat of Keith2, he got T and H after a car accident 30 years ago. He lived like a recluse for almost 10 years untill he discovered this forum and is doing fine now at 82.

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health

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Reply with quote  #10 
some other things that help with pain that I use are:

-massaging/tugging on the outer lobes as  needed-this was shown to me by a masseuse.  it greatly  relaxes the tissue/muscles which decrease the strain & tension, which decrease pain.

-rubbing a bit of Magnesium chloride-from health food store-from a barely moist fingertip dipped in the solution (ie:  not dropping onto the ears-just rubbing a fingertip with just enough on finger to moisten).  this-like oral magnesium relaxes muscles.  I also take oral magnesium citrate 450 mg/d-helps body muscles too.

-putting a bit of witch hazel-over the counter from grocery/pharmacy stores-plus it's cheap- on surrounding ear areas that are tight.  I can't put it closer than ~1/2" from the ears as it may increase ear compression since it is an anti-inflammatory.  for me, any anti-inflammatory increases ear compression.  I started applying it on my temple where I had ongoing throbbing & forehead strain & con't to move towards the ear bit by bit to test.  it's amazingly effective!  feels like I've been able to place it closer to the ears over time too.  great for strained body muscles too.

-zanax as needed-this is prescription...but at least u can take it only when needed vs other pills that may need to take everyday irregardless.  the more relaxed I am, the less tension, the better my H & all it's symptoms are.

I take 2 showers/day which help my ears & body muscles & apply the above to my head & ear areas wherever there is strain on clean skin for max absorption.  they take effect within ~10-15 mins!!!!!!!!!!!!  yeah.

these have been life savers for me being able to improve my quality of life like a miracle.

-neck:  icing as needed & diclofenac 4% mixed with aloe vera on strained muscles all help as all these muscles affect my ears. 

pysio neck exercises-can prob. just go online to find- also help relax the muscles.  do slowly & breathe relaxed!!!!!!!do all as needed. 

I do all of them everyday & what a difference they make.


here's to refinding joy & hope in our lives.  I wish u all the very best in life.  big hugs!!!







__________________
wellness now
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James_ATW

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Reply with quote  #11 
Hi everyone, thank you for your suggestions.

I however would find it hard to implement many of them, even just a months ago  many would be possible, but my tolerance keeps declining. Yesterday I was in genuine pain from having my ear defenders off for 10 minutes... there is a distant road that seeps in through my double glazing it probably makes 10-20DB of noise.

Recently the declines are daily and I haven't left my room or spoke to anyone without ear defenders so going to see therapists or hearing  audiologists seems a bit out of the question.

It's weird the sound doesn't sound unbearable loud (I mean some sounds do without my ear protection) but all the sound that's seem to cause me pain are not perceived to be too loud. They just hurt a lot. Is this a common form of hyperacusis or something else?

If anyone has dealt with a similar scenario I would greatly appreciate your advice.

Best Wishes
    James.
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Pamela

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Reply with quote  #12 
Sorry you are experiencing so much pain. I don’t have much advice, but I read that if the sound generators are too loud for in-ear use, hang headphones around your neck with the pink noise playing. I can’t use ear buds either.
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James_ATW

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Reply with quote  #13 
That's a good idea. I think given that ambient noise is too much for me right now without ear defenders, I will give it a try at night when the house is at it's most quiet.

 If I had been less cavalier/panicked and had come to you lot first I woudn't be in half the hole I am in now. I still feel like I'm past the point of no return but this advice is surely a step in the right direction. So thank you, I am truly grateful.

Best wishes
   James.


Edit: does anyone know if there is any benefit from playing brown/pink noise for even minuscule amounts of time? Say 15 seconds on the first day, 30 the next and so on. I feel like I definitely need to work from the lowest base possible, but not sure if such a strategy is sufficient to see progress.
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Johan_l

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Reply with quote  #14 
Quote:
Originally Posted by James_ATW
Hi everyone, thank you for your suggestions.

I however would find it hard to implement many of them, even just a months ago  many would be possible, but my tolerance keeps declining. Yesterday I was in genuine pain from having my ear defenders off for 10 minutes... there is a distant road that seeps in through my double glazing it probably makes 10-20DB of noise.

Recently the declines are daily and I haven't left my room or spoke to anyone without ear defenders so going to see therapists or hearing  audiologists seems a bit out of the question.

It's weird the sound doesn't sound unbearable loud (I mean some sounds do without my ear protection) but all the sound that's seem to cause me pain are not perceived to be too loud. They just hurt a lot. Is this a common form of hyperacusis or something else?

If anyone has dealt with a similar scenario I would greatly appreciate your advice.

Best Wishes
    James.


I am in a similar situation, but not as bad (yet)... Earlier things that sounded loud could cause pain. Nowadays sounds that do not sound loud also cause pain. Makes it difficult to know when something will cause pain... usually I notice it "too late".

If you are not able to improve with sound therapy, this is worth mentioning. I was in contact with Myriam Westcott regarding a succesful case of treating the pain from sound. Hopefully the paper with details will be out shortly. It's not a totally risk free procedure, but it is considered a standard procedure.

It did not fix other symptoms such as loudness gain or ear fullness. It might work for 1 out 100 or for 99 out of a 100.  


Excerpt: "I am currently finishing off the paper about the stellate ganglion block – it is a case study involving one hyperacusis patient with very severe sound-induced pain. Her pain was successfully and immediately treated by a series of stellate ganglion blocks for progressively longer periods. Adding botox has provided the most long lasting effect. However this is one patient only and a trail involving more patients is currently underway and will take time to complete. Please wait for the case study paper for more details re the treatment, I am writing it in conjunction with the pain specialist who provided the treatment."

The case is mentioned here:
https://www.themonthly.com.au/issue/2018/may/1525096800/kate-cole-adams/when-sound-becomes-pain


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Pattig

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Reply with quote  #15 
Hi James,
It looks like you have gotten a lot of really good advice! I also take magnesium and will look into lipoic acid.
H can result from so many different reasons, they’re finding.
My H started about 2 years ago from a minor car accident that shouldn’t have resulted in any injuries. It seems my central nervous system (cns) took the biggest hit of all resulting in many sensory sensitivities. Concentrating on the H for this conversation, I too was at my wits end with ear pain and sound sensitivity. It got bad enough to where I couldn’t tolerate ANY noise (my ears/brain hurt so bad, I could’ve cared less about being awake, what was the point?), even with noise cancelling headphones and earplugs at the same time, even my husband’s whispered voice thru both devices. At one point I could literally hear separately all the different parts working in the engine in my car while I was driving. I went no where except dr appts and it would take weeks to recover from any one appt. By recovery I mean back to the dark, quiet basement till I could tolerate being upstairs with the fridge and outside noise coming into the house (even with closed windows and doors and both ear protection on).
The good news is, I’m doing better. I am far from normal yet, but better. It has taken loads of research, trial/error, setbacks and the most determination I have ever had to muster.
In my case, I was not willing to let this be my life! All of the H experts were telling me I had to shove noise into my brain even a tiny bit at a time until the brain started to retrain and get usd to it.
That was NOT working for me but making things worse!
I have gotten better b/c I stopped forcing any sound that didn’t feel ok on myself. I let my brain rest and tell me when IT was ready to try something. That’s not to say that I was being lazy, or that TRT isn’t a valid modality. I want my normal life back. It takes determination to do what’s best and not what’s easiest.
I am doing neurofeedback (retraining the brain) 1-2x daily, hyperbaric oxygen rounds to help regenerate nerve cells and feed the brain higher amounts of oxygen, these 2 are expensive therapies but are helping me with all of the sensory issues I’m experiencing. I participate in cranial sacral PT, which helps me to look inside my own body for answers on how to help it. I use an unbelievable cbd oil salve called Momed (touted for its fast delivery transdermally instead of just topical).
The Momed, I put on all tense parts, jaw (especially the joint near the ears), around the ears, even though it says external use, I very carefully and gently put it in my ear canals with a qtip. I use it on my temples, occipital areas, neck and shoulder blades. This stuff is magic (ps...discount code of momed5 gets you a 5% savings off their site).
I think one thing is not really talked about...we who experience this severe ear/brain pain from sound, get stressed out. Pain of any kind causes stress! When we do that, all of our muscles and nerves in the areas tighten, this is such a complicated area of the body, so many muscles and nerves converging in a small area close to the brain. Some of us go into a high sense of (natural) fight or flight mode, we subconsciously try to protect ourselves from danger. The danger being the pain from the offending cause, (in H cases...sound). I also use medicinal marijuana, it is expensive but it helps calm that cns and therefore your flight/fight reaction.
Everyone’s case is so different but in my case... I needed to create an agreement with my brain...i’ll help control my surroundings so you (brain) can calm down. In return, you need to signal me when your ready for the next step, i’ll be waiting for you as patiently as I can.
It may sound silly, but try it...personality is a very different part of the brain than autonomic fight/flight and a lot of the time gets in the way b/c we want something we are not ready for yet.
My journey has led to empowering myself, being an advocate for my own brain not just with doctors but even with my own self. It seems the more understanding you can give yourself, the more it will communicate what it needs, what you can do to help it. I think this is actually the first step...sound causes me pain/discomfort, what can I do to help me besides giving up on sound.
With the use of all these modalities, I am now doing a listening therapy, I finally can now tolerate it. I even actually go into small stores for 10-15 min. I can have short conversations. I still wear ear protection when outside of house so I have a ways to go but am on the right road
My personal biggest tip would be to find things like Momed or medical marijuana, magnesium, lipoid acid, anything of the like to help your cns calm down. Use more if applicable when you are more stressed. When you have something that gives no side affects, just helps, you are sending your brain a message, that you are listening, that you are trying to help make the road ahead easier to travel.
I hope you find bits and pieces in everyones replies to help you.
Pattig
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EDogg

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Reply with quote  #16 
Pattig,

Thank you so much. I wish I could take your message, seal it up in a jar, and save it forever. But... copy and paste into a notepad works too! Your words, the description of what you’ve been through, really resonates with my experience. I needed to hear your message at this moment, during a severe pain set back and weathering dark times. I, like you, developed H from a brain injury. I, like you, found force feeding sound into my ears through ear level sound generators was uniformly ineffective and caused pain. I, like you, am determined to get better. I am slowly learning to be more gentle with the brain and give it sound when it accepts it. I am beginning to find sounds my brain agrees to and starting there. I appreciate everything you suggested and will definitely consider these additional treatment options.

With much gratitude,
EDogg
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James_ATW

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Reply with quote  #17 
Pattig,

Thank you for your response. Hearing that some form of recovery can be had without TRT is of great comfort to me. I believe that TRT is ultimately the best way to improve if other testimonials are to be be believed, we just need to get to that point where that's possible.

Do you mind describing your hyperacusis symptoms to me? Do you get lasting pain that creeps up after exposure to noise that exceeds your comfort? I got my Hyperacusis from auditory shock but maybe if your symptoms are like mine I can fully commit to this plan.

Also if possible can you tell me a little bit more about what your isolation and self-therapy protocols looks like?

I don't think your wrong (about what works for you) but my mind is one that accepts nothing easily, and right now I can't truly convince it there is a way out. I was always a stubborn and argumentative cynic, mental illness hasn't done that trait any good.

I pray  for your continued recovery and you EDogg, it seems like you have a lot to put up with H/pain wise. Your posts have also been of comfort to me.

Best wishes to you all
    James
 
 
 
 
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Pattig

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Reply with quote  #18 
EDogg
Keep me posted!!
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Rob

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Reply with quote  #19 

James -

You need to be properly tested, diagnosed, and guided by a knowledgeable hearing healthcare professional.  If a knowledgeable clinician is not located nearby, you need to be willing to travel to one (no matter how “horrific” or “out of the question” you believe travel will be.)  If you continue to try to improve on your own, you should expect the same results you have achieved so far.    

I suggest you schedule an appointment with Jackie Sheldrake.  She is located at 32 Devonshire Pl, Marylebone, London W1G 6JL.  Her phone number is +44 20 7487 2701.

Is it possible you have worsened hyperacusis to a point where recovery is impossible?  In my view, your chances of recovery are next-to-impossible unless you get help.      

Can TRT work despite causing pain or should you find a different strategy?  You aren’t doing TRT.  The “strategy” you are using has made you more, not less, sensitive to sound. 

Should you wait it out, hope your sound tolerance improves and pain declines and then attempt my music protocol?  Or should you reintroduce sound right away?  I suggest you get help from a knowledgeable hearing healthcare professional and let that person guide you.

Is any medicine helpful in the treatment of decreased sound tolerance?  Not in my view. 

Can you wean yourself off hearing protection and should you try to do so given the severity?  You should stop trying to do this on your own.  
 

Has anyone else had this type of hyperacusis in which the pain lasts well after the stimulus has ended?  Yes.

Is there any hope for you even if TRT is causing pain?  You aren’t using TRT.  Your best chance is to put yourself in the hands of a knowledgeable clinician, trust that person’s thinking, and follow his or her approach.   

Do I know of anyone who went through the same thing and recovered?  Yes.

Rob

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James_ATW

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Reply with quote  #20 
Thank you for the reply rob.

I'll admit it was exactly the opposite of what I was hoping for. My pain is 6 out of 10 and I am struggling to cope. I could spin a sad story about the other things that are wrong... my hands hurt etc. Anyway I guess I was hoping there was convenient answer that didn't lead to my pain becoming 10/10.

Still thank your advice. I will consider it deeply no matter how unpalatable it seems.

Kind regards
  James
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Pattig

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Reply with quote  #21 
Hi James
I thought I answered u but it doesn’t appear so.

Yes lots of advice!

My ear pain was unmanageable. I had electric shock like pain, burning pain, throbbing pain, you name it! And it did last for hours, days, weeks. It just depended how my brain felt. Noise made me crazy with pain. It elevated to head and jaw and neck and so on b/c it hurt so bad I would tense up so much.

Rob is right when he says, you should see someone. But it isn’t always that simple, either, it isn’t easy to find someone who understands where YOU are at.

I had to do it on my own to get to the point that I could start a listening therapy.
I have had many setbacks, but that’s b/c I pushed a little to hard. I call it my red line...but I had to figure that red line out...something in my ears actually starts to flutter when my brain has had enough, almost like the sound is backing up in my ears b/c my brain can’t absorb anymore.
So when I get this warning, I stop. I retreat and relax with the Momed and the med mj. And then I start again. If I’m not able to stop b/c I’m at a dr appt or something then I just do the same when I get home. Sometimes I only need a few hours like lately, when it was bad, I needed days or weeks when it was at its worst.
The pt is, u have to listen to your brain, when it has too much and when it is open. And keep trying, don’t give up, just keep pushing forward. The size of the step forward never matters b/c it’s the direction that counts.

Someone has to meet you at a level you can accept. If you’ve been dealing with this for a long time, like I said, it becomes more, u become a slave to it b/c you are trying to keep functioning.

Like today...my ears hurt, not horrific, but after playing cards for a while with headphones on and light conversation, and 2 decent days in a row, my brain is saying...reset, reset, reset. So I will be in quiet the rest of the day. I’m just listening to my brain.

As I said, lots of advice, try it all until you come up with what works for you.
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Reply with quote  #22 
Pattig & all others using medical marijuana...I tried several forms of the med. marijuana & it seemed to increase the compression in the ears even with using a very small amount which I assume is from the anti-inflammatory effects.  I've tried lower THC ratios which were better, but basically it was such a minute amount that I didn't have any benefit from it.

so the question i'd like to throw out is:  how many people can use it & how many can't?  do other people get increased compression with it/other symptoms?

thanks.

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Reply with quote  #23 
I guess I was hoping there was convenient answer that didn't lead to my pain becoming 10/10.

James, health challenges are inconvenient.  Try not to make predictions about your pain level.  I think you stand a good chance to feel considerably better if you work with a knowledgeable clinician with experience in diagnosing and treating decreased sound tolerance, develop a strategy with your clinician, and stick with it.  

Rob   


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It's a truly bizarre thing, the noises that hurt aren't even perceived to be too loud they just hurt. No blinding pain either, it just creeps up on you. Making it difficult to know what's too loud and too much noise.

The last time I was at my lowest point in November 2015 I still had wiggle room left even I didn't know it at the time. I got so much better just to bugger it up, and then dig myself so deep. I am truly struggling to believe there is any noise I can tolerate. I tried reading in a quiet house, with ear plugs on and the pain still creeped up.

So given that being told to go see someone that will require the best part of 10 hours of travel to make one appoint is so vexing. Can anyone help me if I can't even tell which noises are safe?
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Reply with quote  #25 
Since your recent bout with pain from low level noises have you seen an ENT to confirm that there is nothing else going on with your ears?  I recently recovered from an ear fungal infection with on going pain and increased sensitivity and many of the symptoms were similar to H. With the regular use of ear plugs we do increase the chance of getting an ear infections as it creates the perfect environment for fungus and bacteria to grow. 

Make a phone call to the London H clinic and tell them about your travel concerns. You might do a test drive with ear plugs and ear muffs to see how you react. 

I totally understand about your travel concerns, but often we are tougher than we think we are and we somehow get through the process.  For example, I did not go to a dentist for 5 years because of fear and my H. I had two abscess teeth that needed to be pulled, and so far I have done 6 fillings, two dental implants and teeth cleaning. I went to the dentist yesterday, as I am typing this my ears are ringing with increased sensitivity from dental work, but I will get through the process.  


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James_ATW

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Reply with quote  #26 
I have not seen an ENT recently. It did not occur to me to check such things. My increased pain/decreased tolerance came after successive exposures to 'loud' noise. It correlates so perfectly I doubt it's anything else.

Prior to this January I wore no ear plugs, Just my raggedy ear defenders that leaked noise.

It is however certainly worth looking into and double checking. Thank you.
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Reply with quote  #27 
James,

This comes from a place of compassion, encouragement and care for you, as a fellow sufferer. You need to seek out help and get evaluated, now. It is clear the approach you have been taking is not working. You are in a very challenging spot, but as Rob said above, you have a very good chance of finding improvement with the proper help. No amount of continued probing on this message board, or other ones, is going to help your condition right now. You need to be properly evaluated, develop a treatment plan, and stick with it no matter how hard or impossible it may seem. Read the success stories. There’s a common thread amongst suffers, and yes many were very severe cases. They found a strategy with professional guidance and committed to it. Retreating and avoiding sound is not healthy for the auditory system or the emotional state. We are wired for sound and human interaction, in varying degrees. The best thing you could do for yourself is seek help.

I totally agree with phacker. I’m still a hyperacusis noob (at 19 months) but one thing I have learned, not only from my own experience, but from others, is that hyperacusis setbacks, and ear pain, is highly unpredictable. You may be surprised how much you might be able to tolerate. You are a student of chemistry, right? It’s similar to the Heisenberg uncertainty principle. You can never accurately predict the extent or length of hyperacusis setback and pain from any given sound exposure at any given time. It’s utterly bizarre, just like quantum physics, and that’s ok! You have so much to gain and very little to lose by taking this step.

Keep in mind, too, that chronic physical pain and fear, anxiety and emotional trauma are now shown to be all processed in similar parts of the brain. These are areas that are quite different than those activated by acute pain processing. Taking steps to get help with the audiologic side, in concert with help from the emotional side, may result in synergistic benefits in terms of pain control, outlook, and recovery. Food for thought.

I’m hopeful for you and we are all rooting you on and are here for support. You got to take the first steps though.

Best,
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Reply with quote  #28 
“It's a truly bizarre thing, the noises that hurt aren't even perceived to be too loud they just hurt. No blinding pain either, it just creeps up on you. Making it difficult to know what's too loud and too much noise.”

This is a very good description of the bind that hyperacusis puts us in. Of course, lots of noises that other people don’t notice seem loud to me. And loud noises hurt. But the loudness alone isn’t what mostly hurts. And for me it’s not certain frequencies, either. It’s just patterns of sound, plus the additional loudness. I’m convinced that for me, the quick changes of sound are especially what brings pain.


Engines are especially bad because they have lots of fast-repeating, changing noise. Even my refrigerator and my furnace fan, which are softish noises, are painful over time for me. It’s the irritation, plus the repetition, plus the time exposure. It builds up over the course of the day and makes my ears even more sensitive.

If I’m lucky enough to spend some hours in nature and hear natural breeze and the many small sounds in a natural backdrop, I find my ears relaxing and feeling better.

Hyperacusis is much more complex than it’s made out to be.

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James_ATW

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Reply with quote  #29 
Thank you all for your advice and support as usual. I am sorry about that I was in the middle of a literal 24 hour hour panic attack. It was a like a constant of mild terror, and I hadn't slept well as a result.

Not being able to find a noise even with ear plugs that I could tolerate without without pain rattled me.I had a small  conversation with a dear friend for less than 5 minutes through whispers and with considerable ear protection. Even that lead to an increase in pain. It was nice however to see a friendly face.

I am perusing lots of lines of inquiry right now. Pain management at my local hospital, as they were kind to me a few years ago. They felt like the one group of people that felt like they actually cared . Unlike the the hospitals audiology department. I will see if audiology might administer an LDL test and adjust tinnitus masker for me. They offer the latter not sure about the former.

I am also going to have my dad ring the the hyperacusis center in London and ask for advice, perhaps they would consider it for cash. If I can't find some manner of improvement closer to home then I will pursue the trip to London and HA center perhaps in a couple of months. I need time to find the money for transport and consultation, as well as willpower for the Journey.

I am sorry about the last post. I am just so desperate to find  reassurances and convenient solutions and when no magic genie was forthcoming to save me from this colossal hole I've dug myself into, I began to panic (more than I usually do).

Kind Regards

  James.
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Reply with quote  #30 
Hi James,

No need to apologize. We have been/are there with the anxiety and panic. I think most of us can understand those thoughts and feelings. Given that the auditory system is so crucial, it is wired right into the primitive brain stem and can induce incredibly intense aversive reactions, unlike any I personally have experienced prior to developing H. It might be beneficial to address the sleep issue. I have found several meds and a supplement that aid in sleep. Getting decent sleep could help in coping with this condition.

I am so thrilled to hear you are taking steps to get help. Great news there! In regard to audiologists, I wouldn’t bother seeing just anyone. If I were you, I’d make a concerted effort to see someone who understands hyperacusis and has experience (and success) treating patients. You can contact Dr. Sheldrake Clinic via email as well. She has a whole list of audiologists in UK who are trained in TRT method. Perhaps she might have someone in mind who is closer by and would be easier to get to?

Best,
EDogg
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whatistheanswer

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Quote:
Originally Posted by James_ATW

 

Hi, my name is James and I desperately need your advice on how to deal with a severe case of hyperacusis that has been plagued me for 5 years now but recently become much much worse. I’m in a really tough spot and not sure how to dig myself out. I’m hoping that if I explain how I got to this point, then someone might be able to advise me how to dig myself out of this whole I find myself in. I came here because while I have a diagnosis, and TRT ear piece but most healthcare professions in my area of the UK have have been of little help.

 

In the beginning I didn’t have a name for the disease.Doctors mocked my request to see audiology, the audiologist had no clue at all and was very condescending. After dropping out of university (I would later finish my chemistry degree from home), my solution to the problem before I got to see an ENT, almost a year later, was to wear ear defenders 24/7 and sticking to my house as much as possible because I was scared and panicked. A remedy which obviously doesn’t work. Fast forward several further declines in sound tolerance from events such as car journeys even with ear defenders on, conversations that have last more than a couple of hours and an MRI and my tolerance to sound became cripplingly low. Almost Everything hurt and I have needed my ear defenders 24/7 ever since.

 

The hyperacusis manifests itself as pain and tension bilaterally in both ears, and lasts well after offending noise has passed several hours or days depending on the degree of aggravation. The pain itself starts of relatively minor but can quickly build to intolerable levels. I also have tinnitus and hearing loss but they are both manageable, if slightly annoying.

 

I have a TRT ear piece but rarely used it, because I *had* given up much hope long ago. However my sound sensitivity had previously been improving perhaps over 2017 without me being entirely conscious of it. I built upon this in 2018 with positive sound associations like video games and music which I had been previously unable to tolerate (I think). I didn’t bother much with TRT, I was convinced I would never get better, it just started to happen without me being conscious of it.

 

The reason I make this post however is that while I was in a major funk, I have had several major setbacks in terms of of hyperacusis and I feel my sound tolerance has collapsed entirely. I wasn’t in a good place last winter, mentally, and failed to realize the danger I was in. Things had been getting worse after a funeral, a trip to the dentist, a visit to the ENT where I was asked to take my ear defenders off and converse, and finally a social visit (I am very isolated) for a couple of hours.

 

 In the space of a little over one month I’ve gone from being able to hold quiet conversations, listen to quiet music and games without pain to being in constant pain. A pain which has only worsened since becoming constant in late December 2017.

 

The pain has now been constant for near enough two and bit months, it feels like all sound is too much even with ear defenders. My fear is that I’ve collapsed tolerance to the point that all sound is painful and thus I am stuck in a never ending spiral of aggravation and pain.

 

My world has collapsed inwards. I could once interact with the world with my ear defenders on or headphones in the controlled environment of my room. Now I can’t vacuum, converse with my family for any length, listen to anything. My attempts at making it better have only made it worse. I spend my time in my room with ear defenders on alone because it feels like ambient noise is too much.

 

 

Pink noise therapy which I have been trying for just minutes of time, hurts, and I’m loosing hope. My life is a mess because of my condition and own own mental health problems that led to a mismanagement  and sabotage of my condition. The last plan I have is to play pink noise through speakers at a barely perceivable level while I have my ear defenders on and hope for some improvement.

 

TLDR: sound tolerance completely collapsed everything hurts and pain persists well after the noise has ended, and I am not sure how to dig myself out of this hole.

I realize I’ve just spat a wall of text at you but I hope you advise me because I am so very scared and alone and don’t know how to proceed. Please help.My main questions are:

Is it possible that I have worsened my hyperacusis to a point where recovery is impossible? A positive loop of sound and pain.

Can TRT work despite causing pain? Or should I find a different strategy?

 

How can I wean myself off ear defenders? Should I even try at this stage given the severity of the condition?

 

Has anyone else had this type of HA in which the pain lasts well after the stimulus has ended? I often wake up still in pain or still feel the effects of a short car journey with ear protection through the rest of the day, sometimes longer. Recently that pain has been persisting for a lot longer.

 

Is there any hope for me even if the treatment (TRT) is causing me pain?

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whatistheanswer

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Reply with quote  #32 
Hi James,everything you said in your letter could apply to me.I live in Glasgow ,Scotland I have suffered with Hyperacusis for 10years.I have TRT sound generators which are actually making the hyperacusis pain worse.Recently I have been listening to Deep Brown Noise 24/7 .It is helping ,also your doctor should be able to prescribe Gabapentin for the pain,it has helped me and it also has helped with the associated anxiety.I hope this may be of help to you😊
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Butterflildy99

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Reply with quote  #33 
James have your cochleas checked for fluid. And your vestibular nerve . A audiologist can do both tests. Both will cause extreme pain . The tests are very uncomfortable but so is everyday life with H. I had a lot of fluid in my cochleas and diruteics have helped dry that up and significantly reduce my pain. Stop wearing earplugs. You're keeping yourself in a EXTREMELY sensitive state and will stay there . Reduce them 10 minutes a day every day for 1 week than 20, then 30 and so on.
Air purifiers help with background noise . Turn on while you sleep. Several months later I dont notice mine much and keeps your ENT clearer.
I found a doc on this network that helped the most after 12 "I don't knows and try this doctor instead " noone helped me and doctors and hard surfaces were miserable and made me sick for days . I didn't feel like a person after awhile and like they didn't care. Not to mention Waiting times inbetween.
Hope some of this helps ... I'm in Colorado

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cozo

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Reply with quote  #34 
Hi mate have a look at HYPERCUSSIS SURGERY SUCCESS TALK....on Facebook lots of info on there, The round and oval window closer is the operation for Hypercussis
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contrast

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Reply with quote  #35 
These inconsistent results only show the failure of Pawel Jastreboff's model  trying to treat physical damage in the cochlea with sound therapy to strain it even more.

I am upset just knowing people with cochlear damage are begging and desperate to try TRT and sound therapy with inconsistent results as if it were there hope and savior.

I hope one day scientist at Decibel Therapeutics and Otonomy find treatments to repair the damaged nerve cells in the cochlea so we don't have to put up with this horrible standard of care. I really do hope scientist 10 years from now might look back and laugh at how the standard of care of hyperacusis was so dogmatic. 

Science on how the inner ear and audiotory system actually works is going to replace dogma with science based medical treatments hopefully sooner then later.


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Aplomado

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Reply with quote  #36 
Quote:
Originally Posted by contrast
These inconsistent results only show the failure of Pawel Jastreboff's model  trying to treat physical damage in the cochlea with sound therapy to strain it even more.


While TRT doesn't fix cochlea damage, it can potentially reduce sound sensitivity and the resulting pain in many people with hyperacusis.  Me, for example.  
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Reply with quote  #37 

Quote:
Originally Posted by Aplomado


While TRT doesn't fix cochlea damage, it can potentially reduce sound sensitivity and the resulting pain in many people with hyperacusis.  Me, for example.  

I know two women I have been in close contact who worsened from TRT and sound therapies and have sworn it is not helpful for them.  There are two unfortunate gentlemen on tinnitustalk.  PeteJ , dpdx who has reported worsening and sound therapy providing no help.  This forum, /r/hyperacusis and tinnitus talk is filled with conflicting results.



I know some people benefit, but want to know the science of why? Peripheral nerves also heal themselves and peripheral neuropathy can fluxuate in a favorable manor when exposed to touch/massage mechanosensory esque therapies.


I'm pushing in favor of research to advance so we can get people better help.

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Reply with quote  #38 
Quote:
Originally Posted by Aplomado


While TRT doesn't fix cochlea damage, it can potentially reduce sound sensitivity and the resulting pain in many people with hyperacusis.  Me, for example.  

Would any pink noise, sound therapy help or is it strictly Jastreboff approved TRT you are advocating?

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Aplomado

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Reply with quote  #39 
Quote:
Originally Posted by contrast

Would any pink noise, sound therapy help or is it strictly Jastreboff approved TRT you are advocating?


Wearable sound generators (TRT) + playing pink noise at very slowly increasing volumes is what decreases my sensitivity.  The first time I tried it, my hyperacusis was 98% cured in six months.

Unfortunately, I'm not a poster boy for TRT success since I have had multiple relapses since then.  So, I can say sound therapy does work for some people (including myself) but it can be extremely difficult.

I have also heard of people, who were unable to get good results with sound therapy.  Obviously, people's results vary with it.  Sound therapy can and should be done starting out with very low volumes that are unlikely to aggrevate hyperacusis.  If it is annoying you, you are probably starting out with it too loud.  I don't think properly done sound therapy should make someone worse (though I can't guarantee it will make everyone better).  The point of sound therapy is to desensitize the brain.  If it is annoying the brain you aren't doing it right in the first place.

When I do pink noise therapy, I start with it very low and only up the volume one decibel at time when I can do so without annoyance.

I would love to take a pill and be rid of all this.  However, at this point it doesn't seem likely.  I don't want people to think that they have permanently damaged ears, and that hearing gentle noise will make them worse.  What will absolutely make your ears worse is depriving them of gentle sound stimulation. 
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contrast

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Reply with quote  #40 
Quote:
Originally Posted by Aplomado


I don't want people to think that they have permanently damaged ears, and that hearing gentle noise will make them worse.

Scientific research on this topic already has shown this is the case. It's not about our feelings or wishful thinking, it's about accepting reality. 




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Quote:
Originally Posted by Aplomado


I don't want people to think that they have permanently damaged ears, and that hearing gentle noise will make them worse.

Scientific research on this topic already has shown this is the case. It's not about our feelings or wishful thinking, it's about accepting reality. 

I posted the research here
http://www.chat-hyperacusis.net/post/show_single_post?pid=1308557087&postcount=3&forum=47709

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Reply with quote  #42 

Quote:
Originally Posted by contrast

Scientific research on this topic already has shown this is the case. It's not about our feelings or wishful thinking, it's about accepting reality. 

I posted the research here
http://www.chat-hyperacusis.net/post/show_single_post?pid=1308557087&postcount=3&forum=47709


Thank you for posting those articles.  They are very interesting.  I believe hyperacusis usually starts out with ear damage.  The method that hyperacusis can induce pain mentioned int he article sounds very plausible as well (though I do think there can be a strong fear avoidance learning competent in hyperacusis pain too).

Correct me if I am wrong, but the article did not say that gentle sound exposure causes further physical ear damage.  That is what I am asserting.  Pain does not always equal physical damage.  Sometimes the pain system starts malfunctioning and telling our brain to feel pain inappropriately.  Such is the case with hyperacusis in my opinion.  

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