Hyperacusis Spikes After Trying to Start Living Normally

[Aleph]

Gaslighting in its purest form.

So I suppose Brian Newman's experience is invalid, then?

My post was directed to the OP, who told me his case was similar to mine.

Brian Newman's setback is not permanent. I mean, we don't know. But I read stories of people with stabbing and burning pain who managed to stop the pain. None of them got better being depressed, self-isolating, and covering their ears permanently.

My guide is for TTTS, which according to my experience, was and sometimes is the source of my sound intolerance. I also had increased loudness perception with ambient sounds, like the sounds of the street. But this was created by using earplugs. I gradually quit earplugs and the volume sensation got back to normal.

I also noted:

"I don't know exactly how this pain in direct reaction to sounds related by StoneinFocus is. It is probable that is part of the same mechanism and it follows the same logic. But I don't know if it is convenient to manage pain differently."

Gaslighting...? Nah... That is something to manipulate people. I was just trying to help the OP.

 

[Aleph]

@Brian Newman, I am sorry about your experience.

My post was directed to the OP, who told me his case was similar to mine.

I am sure you will get better, sooner or later. And have you visited an audiologist who knows about hyperacusis? Even if they are not perfect, I think it could be important to talk to someone personally and try to find a solution to your problem. Anyway, this is a thread about Ross97's question, but you could reply briefly if you want and the staff allows it.

 

[Josh59]

I'm not convinced by potassium channel openers because I'm not convinced by the Fuchs model in general (although if you look at my post history going back a year or two, I was the biggest proponent of the type II afferent theory, so I'm open to being wrong).

Regarding treatments, I think anything that truly addresses the co-factors listed in the Norena model could help. In some cases that would mean multi-modal treatment i.e. addressing multiple co-factors at the same time. This is antithesis to what many of us sufferers often look for (I include myself in this), which is a silver bullet.

In Norena's latest paper, one the patients' symptoms completely resolved from botox to the tensor veli palatini. That's not surprising when you consider that muscle shares a tendon with the TTM and is innervated by the mandibular nerve, which is a branch of the trigeminal nerve. But looking at the various co-factors, there's enough anecdotal evidence of cases who have improved from addressing those co-factors. I'd have to do some digging and find all the cases, but there are people who got better from using a nightguard, from strengthening (as opposed to stretching) their neck muscles, from creatine, strict low histamine diets, SNRIs, ambroxol, pure oxygen and many more. Lets now look at how any of those anecdotal cases are consistent with Norena's model:

• Creatine isn't surprising because it plays a role in ATP and muscle fatigue. ATP energy crisis is part of the Norena model.
• Low histamine diet isn't surprising because histamine inflammation is rather unique to the middle ear and histamine is known to play a role in neuropathic pain
• SNRIs are not surprising because norepinephrine has been shown to activate nociceptors, not to mention the effect on the sympathetic nervous system
• Oxygen treatment isn't surprising because hypoxia is also accounted for in the Norena model. However, pure oxygen can easily go the other way and cause damage through free radicals, so I think it's too high risk to try.
• Ambroxol has been used in multiple studies to drain middle ear fluid. Norena's model explains that a chronically inflammed TTM can lead to fluid from middle ear mucosa. It's not just a sodium channel blocker, which blocks pain in the trigeminal.
• Botox. If muscle overload leads to an overactive TTM, and if you consider the tensor veli palatini and the TTM a combined functional unit (as per Norena), then stopping that muscle from activating will allow it to rest and break the cycle. This also explains why some of us see benefit from high dose ionic magnesium. I find it interesting that many people with noxacusis complain of "burning", because that is the feeling you get in an overused muscle due to lactic acid. It's not a stretch then to think that maybe this issue is related to muscles in the middle ear.

I've posted this photo from Norena's paper before but I'm sharing it again because I think it is very helpful in helping to understand what I mean by co-factors and how so many things can affect the cycle.

View attachment 51036

Anecdotally, and in my own personal experience, my symptoms have been at their best when I've tried to address all these co-factors through a combination of ambroxol, neck strengthening, creatine supplementation, stress relief, muscle relaxants and more. I truly believe this is for most of us a multi-faceted problem that requires a complex solution.

Hello @Aaron91.

What type of neck strengthening do you recommend? For my part, this area is sensitive to somatosensory modulated tinnitus.

It's interesting this story about the tensor muscle of the eardrum, but what bothers me is that the tinnitus is reactive to the sound environment (continuously) as well as to the movement of my jaw, posture.

I wanted to ask you, do you also have loud cracking/screeping in your ears when you swallow? I have this symptom when swallowing my saliva. And I can also make these cracks voluntarily by contracting the muscles in that area (eardrum/Eustachian tube).

 

[AnthonyMcDonald]

I was just trying to help the OP.

By telling him to do the exact opposite of what will help him?

He CAN'T POSSIBLY get worse, right?

 

[Stacken77]

Just to add my own experience; my right ear spasms violently in response to sound and sometimes spontaneously in rapid succession - I've always attributed this to "TTTS". This phenomenon correlate strongly with the state of my loudness hyperacusis (which in my case improves with gentle exposure), so I am inclined to agree with those who are convinced that TTTS can be a manifestation of hyperacusis, and not the other way around.

In my way of thought, for the tensor tympani to spasm, there needs to be nerves firing from the brain, which processes the sound according to the current centralized tolerances. I think this explains why I, for instance, have experienced spasms in response to non-real sounds, like brain zaps.

What I find interesting though is that the spasms are always unilateral, which also gives me the impression that there has to be some form of local damage that enables the overreaction.

 

[Stacken77]

But I read stories of people with stabbing and burning pain who managed to stop the pain. None of them got better being depressed, self-isolating, and covering their ears permanently.

Please, the community has enough untrue rumors like these, which just reinforces the incorrect view held by the medical establishment.

Tinnitus, hyperacusis - loud or pain, are physical conditions. The mind is a powerful tool in coping with said conditions, however it does not determine the objective outcome, i.e. improvements or worsenings. Nerves will fire, neurons will act up, but I don't see how they should care about my mood.

 

[Aaron91]

Hello @Aaron91.

What type of neck strengthening do you recommend? For my part, this area is sensitive to somatosensory modulated tinnitus.

It's interesting this story about the tensor muscle of the eardrum, but what bothers me is that the tinnitus is reactive to the sound environment (continuously) as well as to the movement of my jaw, posture.

I wanted to ask you, do you also have loud cracking/screeping in your ears when you swallow? I have this symptom when swallowing my saliva. And I can also make these cracks voluntarily by contracting the muscles in that area (eardrum/Eustachian tube).

I'm a bit confused you're talking about tinnitus, as this is a hyperacusis thread.

Norena's model is about middle ear pathology in relation to TTTS and hyperacusis, not so much tinnitus, which can have dozens of causes.

Regarding crackling when I swallow: yes, I have that, although it has much improved since working on my tongue posture and learning to swallow "correctly" - there are some YouTube videos on this.

In my way of thought, for the tensor tympani to spasm, there needs to be nerves firing from the brain, which processes the sound according to the current centralized tolerances. I think this explains why I, for instance, have experienced spasms in response to non-real sounds, like brain zaps

I feel like you're overthinking this. Muscle spasms are common in the body after any muscle injury/aggravation - think back injuries, for example. This is pretty much what is happening in the middle ear when the TTM becomes overactive and inflamed.

 

[Aleph]

By telling him to do the exact opposite of what will help him?

He CAN'T POSSIBLY get worse, right?

Hey, funny boy, why don't you give your advice full of wisdom to the OP?

That is how forums are useful. You give your opinion so the OP can reach his conclusions.

And if you disagree with me, show your rational arguments.

 

[Aleph]

Just to add my own experience; my right ear spasms violently in response to sound and sometimes spontaneously in rapid succession - I've always attributed this to "TTTS". This phenomenon correlate strongly with the state of my loudness hyperacusis (which in my case improves with gentle exposure), so I am inclined to agree with those who are convinced that TTTS can be a manifestation of hyperacusis, and not the other way around.

In my way of thought, for the tensor tympani to spasm, there needs to be nerves firing from the brain, which processes the sound according to the current centralized tolerances. I think this explains why I, for instance, have experienced spasms in response to non-real sounds, like brain zaps.

What I find interesting though is that the spasms are always unilateral, which also gives me the impression that there has to be some form of local damage that enables the overreaction.

There aren't two things: Hyperacusis and TTTS as a consequence. There is only one thing, TTTS, which is psycho-physiological problem.

You have spasms in only one ear because there is previous state of physical tension, nervousness or abnormality in the muscle, or in the mechanism in general. This is called TTTS.

It is ridiculous to overlap TTTS to a phantom "hyperacusis" as a pathologic entity.

Please, the community has enough untrue rumors like these, which just reinforces the incorrect view held by the medical establishment.

So, what is your point? Do you think that people get better being depressed, self-isolating, and covering their ears permanently? That would be curious.

 

[DimLeb]

(unless you don't want to get better)

All the gaslighting and victim shaming in a nutshell. You still have time to delete all that wall of crap dude.

 

[Brian Newman]

@Brian Newman, I am sorry about your experience.

My post was directed to the OP, who told me his case was similar to mine.

I am sure you will get better, sooner or later. And have you visited an audiologist who knows about hyperacusis? Even if they are not perfect, I think it could be important to talk to someone personally and try to find a solution to your problem. Anyway, this is a thread about Ross97's question, but you could reply briefly if you want and the staff allows it.

I've ben to 12 audiologists, 6 ENTs, 3 neurotologists; they don't know. I've tried every single thing in the book. The only way to manage the severe pain is to avoid triggering noise. I tried going out multiple times, trying to ignore it, not be a wuss, all it does is worsen it faster. I do not have a normal case. The problem with severe cases like mine is, yeah, I can go out and be in even worse extreme pain, the issue is, it worsens, the pain does not let up for weeks after a setback, and my tolerance drops. Before I tried sound therapy and did stuff, I could live happily in my house and not be in extreme pain. When it worsens, I start getting extreme pain from every noise even through thick earplugs. Then I'm in severe pain just trying to eat breakfast or get out of bed, or even talk.

I had a taste of that for a while and very few people would be able to deal with it at that level. The only thing I forced myself to do was driving to acupuncture because it helps a little. With acupuncture, and runs at night, I can get to the level to where I can talk again, shower with earplugs, watch a little TV, play a little Xbox on mute. It's not really a life but it sure as heck beats the level I was at before. I do suspect some of my issues are middle ear related, I'll have to get surgery eventually, but I do have a good hunch the bad pain is cochlear because of how it acts and how deep it is.

A lot of people do recover from this, but not everyone. Life isn't always sunshine and rainbows with this ear stuff. There isn't always a happy ending. I do believe something works for everybody. Hopefully I find my something.

 

[WilliamS95]

There aren't two things: Hyperacusis and TTTS as a consequence. There is only one thing, TTTS, which is psycho-physiological problem.

You have spasms in only one ear because there is previous state of physical tension, nervousness or abnormality in the muscle, or in the mechanism in general. This is called TTTS.

It is ridiculous to overlap TTTS to a phantom "hyperacusis" as a pathologic entity.

Where do you get this information?

It baffles me how people who are seemingly completely uneducated on the subject are arrogant enough to make claims like this. How do you breathe with your head so far up your own ass?

There's literally people with pain hyperacusis who had their tensor tympani muscle cut, taking that out of the equation completely, and had zero improvement.

 

[Ava Lugo]

I've ben to 12 audiologists, 6 ENTs, 3 neurotologists; they don't know. I've tried every single thing in the book. The only way to manage the severe pain is to avoid triggering noise. I tried going out multiple times, trying to ignore it, not be a wuss, all it does is worsen it faster. I do not have a normal case. The problem with severe cases like mine is, yeah, I can go out and be in even worse extreme pain, the issue is, it worsens, the pain does not let up for weeks after a setback, and my tolerance drops. Before I tried sound therapy and did stuff, I could live happily in my house and not be in extreme pain. When it worsens, I start getting extreme pain from every noise even through thick earplugs. Then I'm in severe pain just trying to eat breakfast or get out of bed, or even talk.

I had a taste of that for a while and very few people would be able to deal with it at that level. The only thing I forced myself to do was driving to acupuncture because it helps a little. With acupuncture, and runs at night, I can get to the level to where I can talk again, shower with earplugs, watch a little TV, play a little Xbox on mute. It's not really a life but it sure as heck beats the level I was at before. I do suspect some of my issues are middle ear related, I'll have to get surgery eventually, but I do have a good hunch the bad pain is cochlear because of how it acts and how deep it is.

A lot of people do recover from this, but not everyone. Life isn't always sunshine and rainbows with this ear stuff. There isn't always a happy ending. I do believe something works for everybody. Hopefully I find my something.

You've been through a lot. I hope you find that something that helps you tremendously with your ear pain and hopefully I'll find my something too for my reactive tinnitus issues.

 

[Stacken77]

So, what is your point? Do you think that people get better being depressed, self-isolating, and covering their ears permanently? That would be curious.

My point is rather; they don't get objectively better either, in the same way positive thinking won't determine the outcome of tumor growth.

As I've already stated; the mindset, positive thinking, are powerful tools in dealing with the conditions, however it won't improve the severity of them. Claiming that it does are straight up false while continuing to fuel a view held by the public and medical establishment which reduces the understanding and compassion patients deserve.

 

[Brian Newman]

You've been through a lot. I hope you find that something that helps you tremendously with your ear pain and hopefully I'll find my something too for my reactive tinnitus issues.

Thanks Ava, I hope you get some relief soon. Let's hope we see good results for OTO-313 next month. I would love for my reactive tinnitus to calm down. Have you seen any improvement since we last talked?

 

[AnthonyMcDonald]

Hey, funny boy, why don't you give your advice full of wisdom to the OP?

I don't need to. @Brian Newman and @Stacken77 have already said enough and I agree with them 100%.

In any case, "positive thinking", even with my horrendous catastrophic reactive tinnitus and hyperacusis that spiked permanently from <20 decibels, helped a bit (finding hope in future treatments, etc.), but certainly wasn't a sure-fire-method.

P.S. The only thing that's helped me was a quiet environment. If I had stayed in that louder environment without protection I wouldn't have seen any improvement at all and probably would have continued getting worse until I couldn't take it anymore.

 

[DimLeb]

It baffles me how people who are seemingly completely uneducated on the subject are arrogant enough to make claims like this

It's funny because even educated-on-the-subject people are in fact uneducated when it comes to ear pathologies (including doctors, audiologists etc).

 

[Josh59]

I'm a bit confused you're talking about tinnitus, as this is a hyperacusis thread.

Norena's model is about middle ear pathology in relation to TTTS and hyperacusis, not so much tinnitus, which can have dozens of causes.

Regarding crackling when I swallow: yes, I have that, although it has much improved since working on my tongue posture and learning to swallow "correctly" - there are some YouTube videos on this.

I feel like you're overthinking this. Muscle spasms are common in the body after any muscle injury/aggravation - think back injuries, for example. This is pretty much what is happening in the middle ear when the TTM becomes overactive and inflamed.

Hello,

I was referring to environmental noise reactive tinnitus because many people with hyperacusis have their tinnitus increase in intensity with everyday sounds.

For many people, the worse the hyperacusis gets, the louder and more reactive the tinnitus becomes.

This has been my case for 5 years. 5 years of aggravation while trying to "live normally" and protecting myself when necessary.

Unfortunately the central tone of the tinnitus is much louder and more reactive (after a shower, a discussion...) and my tolerance thresholds have dropped.

The crazy thing is that my symptoms have become much worse in the last 5 years than before my chronic tinnitus arrived.

Why am I talking about somatic tinnitus and hyperacusis?

Simply because many people have this type of symptoms and since then there is research on this level: "Somatic modulation in hyperacusis".

The tensor tympani muscle is innervated by the mandibular nerve (jaw).

To conclude on hyperacusis and reactive tinnitus, Damien Ponsot (who worked with Norena) talks about it in his study. "Category 4: hyperacusis and tinnitus aggravated by noise exposure"

L'HYPERACOUSIE: ÉTAT DE LA SCIENCE (archives-ouvertes.fr)

 

[Ava Lugo]

Hello,

I was referring to environmental noise reactive tinnitus because many people with hyperacusis have their tinnitus increase in intensity with everyday sounds.

For many people, the worse the hyperacusis gets, the louder and more reactive the tinnitus becomes.

This has been my case for 5 years. 5 years of aggravation while trying to "live normally" and protecting myself when necessary.

Unfortunately the central tone of the tinnitus is much louder and more reactive (after a shower, a discussion...) and my tolerance thresholds have dropped.

The crazy thing is that my symptoms have become much worse in the last 5 years than before my chronic tinnitus arrived.

Why am I talking about somatic tinnitus and hyperacusis?

Simply because many people have this type of symptoms and since then there is research on this level: "Somatic modulation in hyperacusis".

The tensor tympani muscle is innervated by the mandibular nerve (jaw).

To conclude on hyperacusis and reactive tinnitus, Damien Ponsot (who worked with Norena) talks about it in his study. "Category 4: hyperacusis and tinnitus aggravated by noise exposure"

L'HYPERACOUSIE: ÉTAT DE LA SCIENCE (archives-ouvertes.fr)

So I guess I really do have hyperacusis if I have unmaskable reactive tinnitus It does make sense since the ringing that competes with everyday sound makes it uncomfortable to deal with. Sounds don't appear louder to me, it just makes the ringing rise a little above the external sound. Some people argue that reactive tinnitus isn't the same as hyperacusis.

 

[StoneInFocus]

So, what is your point? Do you think that people get better being depressed, self-isolating, and covering their ears permanently? That would be curious.

Being depressed no, self-isolating as long as necessary and covering ears when appropriate, totally yes. Why do you think this is so curious?

It's interesting that ENT doctors, and some people on here too, often caution against "overprotecting", whatever that means, even though there is barely any evidence, not even anecdotal, that wearing hearing protection too much worsens one's hyperacusis, whatever its type.

 

[Ava Lugo]

Thanks Ava, I hope you get some relief soon. Let's hope we see good results for OTO-313 next month. I would love for my reactive tinnitus to calm down. Have you seen any improvement since we last talked?

To tell you the truth, I don't know... I don't think the reactivity has improved much at all but then again, I look back at all the things I managed to do despite this condition that I couldn't bring myself to do in the first year. I went on some dates and while most of the dates didn't work out, I'm still proud of myself for putting myself out there. I had a one month relationship and I never thought I'd be in one again. I try keeping busy with coloring and drawing and certain games. That helps bring my stress down a bit. I focus on what I can do and what I can't and I'm still figuring things out.

I'm having trouble sleeping. I always had that issue even with mild tinnitus. It takes me 3 or 4 hours to fall asleep even with Melatonin or Benadryl. I use to drink alcohol and pass out but I'm reading that messes up your sleep cycle so I'm trying to cut back even though it quiets the tinnitus. If I don't sleep then I hear the tinnitus 24/7 and that's extremely exhausting. I don't want prescription drugs anymore or at least until hearing drugs come out. I hate going through withdrawal.

I'm miserable today because I went to bed sober and only slept under an hour. I hope eventually my sleep improves. I could tolerate the unmaskable tinnitus better during the day if I could get at least 5 hours of sleep instead of the usual 3 hours I get.

 

[Aaron91]

So I guess I really do have hyperacusis if I have unmaskable reactive tinnitus It does make sense since the ringing that competes with everyday sound makes it uncomfortable to deal with. Sounds don't appear louder to me, it just makes the ringing rise a little above the external sound. Some people argue that reactive tinnitus isn't the same as hyperacusis.

Reactive tinnitus and hyperacusis are not the same - take it from someone who has both. They may be part of the same pathology, but in symptoms and experience they are very different. Reactive tinnitus sucks, but hyperacusis is hell on earth.

 

[Brian Newman]

To tell you the truth, I don't know... I don't think the reactivity has improved much at all but then again, I look back at all the things I managed to do despite this condition that I couldn't bring myself to do in the first year. I went on some dates and while most of the dates didn't work out, I'm still proud of myself for putting myself out there. I had a one month relationship and I never thought I'd be in one again. I try keeping busy with coloring and drawing and certain games. That helps bring my stress down a bit. I focus on what I can do and what I can't and I'm still figuring things out.

I'm having trouble sleeping. I always had that issue even with mild tinnitus. It takes me 3 or 4 hours to fall asleep even with Melatonin or Benadryl. I use to drink alcohol and pass out but I'm reading that messes up your sleep cycle so I'm trying to cut back even though it quiets the tinnitus. If I don't sleep then I hear the tinnitus 24/7 and that's extremely exhausting. I don't want prescription drugs anymore or at least until hearing drugs come out. I hate going through withdrawal.

I'm miserable today because I went to bed sober and only slept under an hour. I hope eventually my sleep improves. I could tolerate the unmaskable tinnitus better during the day if I could get at least 5 hours of sleep instead of the usual 3 hours I get.

Ahhh, I'm sorry. Yeah not sleeping makes all this so much worse for sure. I've gotten pretty good at sleeping hearing all my tinnitus tones. Only when it's really spiked I can't sleep. The pain keeps me up on bad days though. I'm glad you did some basic things. That's good, helps you try and get your mind off it. I can barely do anything, but I can play Xbox with earplugs in, and run at night somehow. I've been day trading so I've been focusing on that. The video games are definitely therapy for me, they suck me in for a while and my mind can wander from the pain if it's not severe.

Yep, focus on what we can do, that's all we can do.

 

[Brian Newman]

Being depressed no, self-isolating as long as necessary and covering ears when appropriate, totally yes. Why do you think this is so curious?

It's interesting that ENT doctors, and some people on here too, often caution against "overprotecting", whatever that means, even though there is barely any evidence, not even anecdotal, that wearing hearing protection too much worsens one's hyperacusis, whatever its type.

It's interesting. To be honest, all the doctors I've seen and the better audiologists, wrote in my treatment plan to wear earplugs when out and about before I was catastrophic. Even my neurotologist said I should do an MRI but it's going to be loud so I need to decide if I was going to do it or not. My therapist even agreed with me, that this was not a mental issue. We even tested it by trying to distract me while my pain was going off, he wrote down patient's pain does not get affected by mood or mental aspects. Even Ben Thompson, who people on here don't like, made a newer video about people with pain hyperacusis, where he said sound therapy does not work for it.

Of every single doctor and audiologist I've seen, probably 30-40 total, not one told me to suck it up and push through sound and try to ignore it. Not one The more I think about the pain and protect, the worse it's going to get. I do think doctors are starting to catch on that noise makes ears worse, especially if the damage was from noise lol. I've broken and sprained my left ankle many times. Not once did trying to be positive, and pushing through it, did make it get better. I couldn't sit there and be like it's all in the brain lol, oh it's all better.

I also haven't had once doctor mention sound therapy for my noxacusis either, all the better doctors were honest and they knew, they said you know more than I do honestly, I'm not going to lie to you. I wish I could help you but hearing damage is permanent. I'm more ok with that than being gaslighted for sure. I do agree with doctors when they can tell a patient is mild, and is panicking, which is a lot of people, who will probably never get worse unless they mess up bad, telling them not to be afraid of noise, which isn't horrible advice, because I definitely know some mild cases that are so scared, they are homebound and won't leave. But obviously going to loud places is bad news if you have any hyperacusis or bad tinnitus, so obviously it's all in moderation and not overdoing it. I definitely know from experience that people will treat you differently if you are not panicking and freaking out because obviously it's going to seem like a mental thing. It's hard not to panic because all this stuff is scary.

My first ENT suggested Xanax. He didn't even say this was mental, he just said it helps. That's the worst response I got personally. I definitely know when a doctor sees me in their office and when I'm calm and collected, they don't question me ever. Any time I was anxious they could tell and would not take me seriously. I mean definitely the worst cases I've ever seen or heard of the people were not panicking, but they were suffering incredibly. I think doctors should be smart enough to tell the difference.

But yea, the gaslighting for this condition is incredible. Like I'm not afraid to leave the house, I'm not afraid to go around noise, I'll do it right now. But it's not worth the pain and worsening. That's definitely the difference between somebody who is afraid of getting worse, who should be trying to live life (carefully) and somebody who knows their ears and knows they will permanently worsen from something. I just wanted to add this to the thread. I have seen so many people gaslighted and treated horribly, by friends, family, doctors, people in general. It makes me angry thinking about it. I guess I have been lucky, because very few people have questioned what I've been going through, even in a doctors' office I would tell the nurse, hey please, stop that, it really hurts my ears. They are like ok, I'm sorry. Everybody in my life has been supportive of this and I am really thankful for it. I guess I'm lucky in that aspect.

Because anybody who knows me knows for damn sure I wasn't giving up my killer awesome life unless I was really sick. Even my friends would say they definitely see me wheeling myself in the gym if I had no legs, or most other conditions. I wouldn't just lock myself away and give up and hide. All of us who have this ear stuff really bad know it's not like other conditions and there's no working around it sometimes. You gotta accept it and face it head on, and deal with the level you have it, and hope you improve.

I left most of the support groups, because they don't do anything for me, and I'm sure most severe cases feel the same. None of us appreciate seeing mild cases trying to give us advice, by saying it's because we're depressed or it's all in our heads and that we need to be around noise. Just really angers me and makes me feel like crap. Because we know for damn sure it's not true. Or when people call themselves severe, omg I had to wear earplugs to the club, I'm so severe, that makes me feel horrible too, not going to lie. It's like what would those people do on my level...

But enough of this. That was my rant for the day. Anybody who has this of any level, their lives are affected and it stinks. I've had this ear stuff on many levels. I definitely know. Well, sorry I jacked your thread OP. I hope all you guys are having better days as well.

 

[Wrfortiscue]

It's interesting. To be honest, all the doctors I've seen and the better audiologists, wrote in my treatment plan to wear earplugs when out and about before I was catastrophic. Even my neurotologist said I should do an MRI but it's going to be loud so I need to decide if I was going to do it or not. My therapist even agreed with me, that this was not a mental issue. We even tested it by trying to distract me while my pain was going off, he wrote down patient's pain does not get affected by mood or mental aspects. Even Ben Thompson, who people on here don't like, made a newer video about people with pain hyperacusis, where he said sound therapy does not work for it.

Of every single doctor and audiologist I've seen, probably 30-40 total, not one told me to suck it up and push through sound and try to ignore it. Not one The more I think about the pain and protect, the worse it's going to get. I do think doctors are starting to catch on that noise makes ears worse, especially if the damage was from noise lol. I've broken and sprained my left ankle many times. Not once did trying to be positive, and pushing through it, did make it get better. I couldn't sit there and be like it's all in the brain lol, oh it's all better.

I also haven't had once doctor mention sound therapy for my noxacusis either, all the better doctors were honest and they knew, they said you know more than I do honestly, I'm not going to lie to you. I wish I could help you but hearing damage is permanent. I'm more ok with that than being gaslighted for sure. I do agree with doctors when they can tell a patient is mild, and is panicking, which is a lot of people, who will probably never get worse unless they mess up bad, telling them not to be afraid of noise, which isn't horrible advice, because I definitely know some mild cases that are so scared, they are homebound and won't leave. But obviously going to loud places is bad news if you have any hyperacusis or bad tinnitus, so obviously it's all in moderation and not overdoing it. I definitely know from experience that people will treat you differently if you are not panicking and freaking out because obviously it's going to seem like a mental thing. It's hard not to panic because all this stuff is scary.

My first ENT suggested Xanax. He didn't even say this was mental, he just said it helps. That's the worst response I got personally. I definitely know when a doctor sees me in their office and when I'm calm and collected, they don't question me ever. Any time I was anxious they could tell and would not take me seriously. I mean definitely the worst cases I've ever seen or heard of the people were not panicking, but they were suffering incredibly. I think doctors should be smart enough to tell the difference.

But yea, the gaslighting for this condition is incredible. Like I'm not afraid to leave the house, I'm not afraid to go around noise, I'll do it right now. But it's not worth the pain and worsening. That's definitely the difference between somebody who is afraid of getting worse, who should be trying to live life (carefully) and somebody who knows their ears and knows they will permanently worsen from something. I just wanted to add this to the thread. I have seen so many people gaslighted and treated horribly, by friends, family, doctors, people in general. It makes me angry thinking about it. I guess I have been lucky, because very few people have questioned what I've been going through, even in a doctors' office I would tell the nurse, hey please, stop that, it really hurts my ears. They are like ok, I'm sorry. Everybody in my life has been supportive of this and I am really thankful for it. I guess I'm lucky in that aspect.

Because anybody who knows me knows for damn sure I wasn't giving up my killer awesome life unless I was really sick. Even my friends would say they definitely see me wheeling myself in the gym if I had no legs, or most other conditions. I wouldn't just lock myself away and give up and hide. All of us who have this ear stuff really bad know it's not like other conditions and there's no working around it sometimes. You gotta accept it and face it head on, and deal with the level you have it, and hope you improve.

I left most of the support groups, because they don't do anything for me, and I'm sure most severe cases feel the same. None of us appreciate seeing mild cases trying to give us advice, by saying it's because we're depressed or it's all in our heads and that we need to be around noise. Just really angers me and makes me feel like crap. Because we know for damn sure it's not true. Or when people call themselves severe, omg I had to wear earplugs to the club, I'm so severe, that makes me feel horrible too, not going to lie. It's like what would those people do on my level...

But enough of this. That was my rant for the day. Anybody who has this of any level, their lives are affected and it stinks. I've had this ear stuff on many levels. I definitely know. Well, sorry I jacked your thread OP. I hope all you guys are having better days as well.

Yeppers. I've tried different methods and only thing that happens is I delay worsening. No improvement, just delay lol. Sucks bro.

 

[ShaunR]

Why all the hate for @Aleph? The guy (or gal) comes on here with a solid argument and gets shot down in flames just because his ideas don't fit with others. Jeeezus even professionals don't know what's wrong with us. Maybe an open mind would suit us all well.

IMHO no one likes to hear this is a psychological disorder but IMHO (which I'm entitled to) psychology plays a huge part in this, not a superficial part. The whole affluent hair cell bulls*it just doesn't cut if for me and has never been proven. At one time I was one of those who denied it was a psychological problem (my pride wouldn't let me accept that just maybe it was my mind causing this) and I was obsessed that this was hair cell damage.

I suffered for 2 years (acid burning, fullness, face neck and head burning, the whole works) and it was only when I stopped obsessing over sound that I started to get better. I still obsess over sound to a certain degree and still I suffer because of it... However, not quite as bad. For example, I heard a subjectively loud sound at work (someone dropped something, were not talking gunshot here) and I panicked and worried and boom, the symptoms come flooding back. The tension, the burning, the face pain.

My point is that everyone is entitled to their opinion and maybe, just maybe, some of us need to open our minds to other ideas. @Aleph wasn't forcing his or hers ideas upon anyone nor do I think their advise is particular dangerous.

Again I'm not suggesting that my opinion has greater weight than anyone else's. Health care professionals can't help us so maybe we should try help each other.

Shaun

 

[WilliamS95]

Why all the hate for @Aleph? The guy (or gal) comes on here with a solid argument and gets shot down in flames just because his ideas don't fit with others. Jeeezus even professionals don't know what's wrong with us. Maybe an open mind would suit us all well.

IMHO no one likes to hear this is a psychological disorder but IMHO (which I'm entitled to) psychology plays a huge part in this, not a superficial part. The whole affluent hair cell bulls*it just doesn't cut if for me and has never been proven. At one time I was one of those who denied it was a psychological problem (my pride wouldn't let me accept that just maybe it was my mind causing this) and I was obsessed that this was hair cell damage.

I suffered for 2 years (acid burning, fullness, face neck and head burning, the whole works) and it was only when I stopped obsessing over sound that I started to get better. I still obsess over sound to a certain degree and still I suffer because of it... However, not quite as bad. For example, I heard a subjectively loud sound at work (someone dropped something, were not talking gunshot here) and I panicked and worried and boom, the symptoms come flooding back. The tension, the burning, the face pain.

My point is that everyone is entitled to their opinion and maybe, just maybe, some of us need to open our minds to other ideas. @Aleph wasn't forcing his or hers ideas upon anyone nor do I think their advise is particular dangerous.

Again I'm not suggesting that my opinion has greater weight than anyone else's. Health care professionals can't help us so maybe we should try help each other.

Shaun

The guy straight up said that hyperacusis is caused only by tensor tympani syndrome. That's nonsense. His whole post is unsubstantiated, arrogant nonsense.

Tensor tympani may play a role, but it's not the whole picture. Saying otherwise is objectively wrong.

If your hyperacusis was fixed by focusing on sounds less, that is very, very good and you should be happy with the progress. For others it doesn't.

How did your hyperacusis start?

 

[ShaunR]

The guy straight up said that hyperacusis is caused only by tensor tympani syndrome. That's nonsense. His whole post is unsubstantiated, arrogant nonsense.

Tensor tympani may play a role, but it's not the whole picture. Saying otherwise is objectively wrong.

If your hyperacusis was fixed by focusing on sounds less, that is very, very good and you should be happy with the progress. For others it doesn't.

How did your hyperacusis start?

How can you say it's objectively wrong when no one fully understands the mechanics of hyperacusis? That's my point. And I believe that @Aleph was trying to make that point and responded in kind when shot down unnecessarily for trying to help the OP. If you don't buy into the affluent hair cell nonsense (my opinion and I'm entitled to it) then your opinion doesn't count as far as some people here are concerned.

I don't have hyperacusis in the sense of everything sounding loud. I believe what I have is noxacusis. I always have some pain all day long. However, during a setback it's back in the front of my mind and becomes objectively worse. I believe it was caused by an acoustic shock... Truth is I don't know. I heard something objectively loud (wheel spin), worried and worried that it damaged my hearing and lo and behold the symptoms appeared.

Cheers,
Shaun

 

[WilliamS95]

How can you say it's objectively wrong when no one fully understands the mechanics of hyperacusis? That's my point. And I believe that @Aleph was trying to make that point and responded in kind when shot down unnecessarily for trying to help the OP. If you don't buy into the affluent hair cell nonsense (my opinion and I'm entitled to it) then your opinion doesn't count as far as some people here are concerned.

I don't have hyperacusis in the sense of everything sounding loud. I believe what I have is noxacusis. I always have some pain all day long. However, during a setback it's back in the front of my mind and becomes objectively worse. I believe it was caused by an acoustic shock... Truth is I don't know. I heard something objectively loud (wheel spin), worried and worried that it damaged my hearing and lo and behold the symptoms appeared.

Cheers,
Shaun

True, the mechanism is not fully understood. Nobody here claims it is. But his claims that it is only because of tensor tympani syndrome is objectively wrong because many people have had their tensor tympani cut without any benefit. It can play a role for sure. For some people more than others. But claiming that that is 100% the only reason and everything else is just people fooling themselves is objectively wrong.

 

[Moss]

A lot of people are patronising by default. I've been chronically ill all my life, gaslit in the most horrid, torturous ways, and even when I am finally able to present a genetic reason for my health complications - because well, research has finally caught up with the condition - doctors still won't listen to me. They just won't let me talk, cut me off, and go on a rant about presumed psychological problems and the magic of CBT.

I can't sleep, I have restless legs syndrome, I have abnormal pain sensitivity, and the extreme hyperacusis and tinnitus now on top of it all, and I'm pretty sure these problems have common neurological denominators (for instance, central sensitisation, low brain iron, glutamate excitotoxicity and stuff like that). But guess what, no one really knows anything about neurology. The brainiest neurologists themselves don't know everything yet and clearly other doctors don't get taught even the basics. So when I talk about it, I get told I'm deluded and that I somatise my anxiety. In these instances it's like being one of few seeing people in a world full of blind people. Yes sure I get stressed and even anxious, because I'm human after all! But it has no bearing whatsoever on any of my physical problems. Only physiological states affect physiological states. In fact, I don't believe in magical thinking, lol. Your thoughts don't manipulate matter. But it's funny how many doctors and psychs do.

Thanks @Brian Newman for having the guts to speak out, it's very helpful for those of us who really do have a severe version of the condition. I agree that it's just tiring listening to people who complain about trivial levels of discomfort and think their epiphanies and solutions will save the rest of us sufferers from ourselves.