Hyperacusis — How Does It Arise?

[AlecP]

Firstly, my heart goes out to anyone with this horrible condition and if you're unlucky enough to have tinnitus as well then you're a real trooper!

Basically, I haven't got it but I've read posts from some people saying that they developed it some time after their tinnitus appeared, sometimes a year or so after.

Why is this and what steps can I take to ensure this doesn't happen to me?

Cheers

Alec

 

[Ilija]

Firstly, my heart goes out to anyone with this horrible condition and if you're unlucky enough to have tinnitus as well then you're a real trooper!

Basically, I haven't got it but I've read posts from some people saying that they developed it some time after their tinnitus appeared, sometimes a year or so after.

Why is this and what steps can I take to ensure this doesn't happen to me?

Cheers

Alec

Well other than exposing yourself to really loud noises over long periods of time, nothing really.
I don't mean that in a THERE'S NOTHING YOU CAN DO WAY I mean as in unless you're actively thinking about it, stressing about it, imagining it, telling yourself this is so loud it hurts and stuff like that-which is basically what I'm doing and my hyperacusis/sound sensitivity is out of hand you're going to be A ok.
For instance I went to a friends and they laughed quite loudly, my Tinnitus has spiked and I'm on panic mode I'm monitoring sounds thinking about sound sensitivity and voila I get added sound sensitivity, this feeling that if I scratch myself or something I'm producing some other sounds and this is all making me quite mad.

As long as you don't do what I did and lose your mind over such things you'll be fine.

 

[stacey]

T and H has both literally killed me. My advice as long as your T doesn't get any worse the less chances you have at developing H. My H started after my T got louder. Try not to stress too much.

 

[Telis]

Ototoxic meds!! Don't take em unless it's life or death. My T started mild, no H. After taking a mix of ototoxic drugs my ears feel like they are totally destroyed and weak, any sound, including my own voice just plain hurts me.

 

[geg1992]

I got T from loud noise 3 months ago, I now suddenly have H out of nowhere, I can't cope any more.

 

[marqualler]

I had hyperacusis from about a month into my T onset until about December. Not severe but enough to have noticed when it seemed to subside. I still have noise sensitivity, usually when I'm tired or if I feel congested, especially when the rascal I'm holding in my picture has a temper tantrum (which is frequent at 17 months of age.)

 

[Zimichael]

As long as you don't do what I did and lose your mind over such things you'll be fine.

Ummmmmmmm...not always true. It is possible to get increased, permanent levels of T and H from sound exposure, ototoxic drugs, and IMHO - particularly combinations of the two at the same time...i.e. being on a potentially ototoxic med and exposure to loud or extended sound.
Fortunately this is somewhat rare, even in T and H folks, but it can happen.

If you want more on that you can see details in my Profile, and also many past posts I have written on this. (A search in this Hyperacusis section will pull up the more relevant ones re H).

Best, and stay 'sensibly safe'... Zimichael

 

[geg1992]

Interesting as I got my T, and now H, from taking antibiotics and going to a gig!

 

[svintegrity]

My T was sudden onset and I tried every treatment suggested over a year's period of time. I got H after my T got much worse, which was after using Neuromonics for two months. My audiologist claims this is not possible, but she is not living in my head. My T and H got so bad from listening to Neuromonics that I discontinued the treatment. It has been extremely painful over the past few months, I can't be in the same room as someone crumpling paper or doing dishes. It is difficult to cope. Has anybody else had this experience?

 

[PaulBe]

Neuromonics. You'd do just as well strapping cats to your ears.

 

[svintegrity]

Did you try Neuromonics? What was your experience?

 

[PaulBe]

Nothing really you can't also do with a good nature or pink noise or music file, and an understanding counselor/psychologist. Its the creation of a price and packaging model, priced to place it out of reach for most, thus making it look voodoo-level good that raised my scam-alert. I've known others on it. I can't see what extra it gives them that any other simple, properly designed program through a good Audiologist doesn't provide. Where I am there is a very visible chain of Audiology clinics, part-owned by an ENT group, that markets it aggressively. I'm of the opinion that an ENT hawking this (even from behind the curtain) is already testing the ethical boundaries.

 

[svintegrity]

Yes. I agree with you. There are definitely ethical boundaries being crossed with this high price and packaging model. I saw five ENTs and three audiologists. One of the audiologists is a "tinnitus and hyperacusis expert." I think she is more interested in making money off of Neuromonics than helping patients. But I have been suffering for over a year, and every treatment that is supposed to help has only made it worse. I have been told over and over that I was just going to have to learn to live with this. So vulnerability and desperation leads one to try Neuromonics, which made it worse too. The CEO of Neuromonics, Inc. shouted me down refusing to answer any of my questions, when I asked if the company felt any responsibility for my worsening condition. He literally said that he had no empathy for me, and was shocked that I would think he would care that his company's product was causing harm. I did not have hyperacusis before I started Neuromonics. And Neuromonics made my tinnitus worse.

 

[PaulBe]

If that's how the CEO conducts himself then the scam alert should be red hot. Anyone who plays the "I'm shocked....SHOCKED!" card is not interested in addressing issues.

 

[svintegrity]

@PaulBe You've got that right! I have never been treated so abusively by anyone else in my entire life. The CEO Neuromonics, Eula Adams takes the cake. He is only interested in the bottom line--money, as is the audiologist I was formerly working with. When I told them both that Neuromonics was making my tinnitus worse, their advice was to keep using it. As was also the advice of the staff Neuromonics audiologist. But nobody would keep using it with it causing loud high-pitched screeching in both ears, when my T was originally unilateral. None offered to address the issues at hand.

 

[PaulBe]

You know, the more I read the less I know, and the less it seems anyone really knows. The absence of quality knowledge makes a great breeding ground for scammers.

 

[svintegrity]

You are so right!

 

[AlecP]

@svintegrity I am no legal expert or have any real knowledge about Neuromonics, but do you think you may have grounds for a lawsuit? I suppose they have special T's & C's that protect them against the possibility of it making your condition worse :/

 

[svintegrity]

@AlecP I appreciate your post. I didn't sign anything about consent for treatment, nor did I even receive a purchase agreement from the audiologist. Pardon my ignorance but what are T's and C's? I do know that my audiologist falsified my medical record, without proper corrections of annotations or according to the state laws of record keeping. But as you know, dealing with debilitating T can be a full-time job without having an adversarial relationship with one's audiologist, which is what is happening now. I am trying to just end the relationship and walk away (let her keep the $4500, even though I am unable to work at present), but she keeps poking me, with inaccurate information. Her first audio said I had H in my right ear, when I asked her to fax my records last week, the same audio was completely differently annotated and said I had H in my left ear. I have only had one audio done with her, and I had H in my right ear. Both audios were dated the same date one was typewritten, the second in her handwriting. And my T has remained higher and more debilitating than before treatment with Neuromonics. It is so tiring to deal with this on no sleep. Thanks for your post.

 

[AlecP]

@svintegrity Sounds like she's messing around with you a lot, probably a good idea to leave her and find a new audiologist. T's and C's stands for Terms and Conditions, i.e. the legal stuff that most companies make people agree to, that no-one ever reads. I was just wondering because naturally if you signed something or agreed to the T's and C's they probably say somewhere that 'Neuromonics are not responsible for any increase in tinnitus or hyperacusis, use at your own risk...etc etc'.

 

[svintegrity]

@AlecP Thanks for you reply. I never signed anything with my audiologist about Neuromonics. I have been trying to leave her for a month now and she just keeps poking at me. Sending false health information about me to others. I am no expert on HIPPA, but I am trying to find out if she is in violation. It really takes someone who knows the law, and I live in a very small town. I also am not able to work, so I don't have the money or energy to hire an attorney. As you know, having debilitating T & H is a full-time job without having to deal with these other hassles on top of it. I appreciate your information.

 

[PaulBe]

Isn't ending personal information about you to others without your consent a major ethical violation? Why does she even need to do that?

 

[svintegrity]

@PaulBe I think it might be an ethical violation, but what protections does a person have against it? She is doing it for her own self justification. People who we go to for help, who are actually doing harm, makes me very sad and tired.