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Cemelia_03

Registered:
Posts: 7
Reply with quote  #1 
Hi all.
I have severe hyperacusis on left ear that causes EXCRUCIATING pain.
I have chronic tinnitus on both ears too.
It all happened last year when I had a terrible viral infection. Admitted to hospital for days and the next day after discharge...I couldn't hear in left ear.

Did numerous hearing tests and found out 60% permenant hearing loss in left ear. It's due to damaged inner ear hair cells.

2 months later...I developed pain hyperacusis.
The pain is so extreme and unbearable to the extent that normal human speech or normal conversational tones hurt me more than I can ever express.

I was forced to leave school.
I was room bound now.
I couldn't bear the sounds of outside noise the moment I stepped out of my room.
Everything is abnormally loud.
Now...I couldn't even stand people talking or whispering to me. And I need to wear earmuff. There isn't a choice. I wear it every day and everywhere I go. Removing it even for a short while seems impossible because the moment I took it off...that's where my extreme pain strikes.

And I cry daily. Because the pain is 24/7...not only when hearing sounds.
Even when I'm in a background with minimal sound...my ears can burst into extreme pain that is worse than thousands of knives stabbing my ear CONTINUOUSLY.

I felt gunshot pain when I expose to SOUND.
It's like bullets penetrating my ear CONTINUOUSLY.
My ear pain lasts for few hours...usually 6 HOURS and above.
Sometimes it lasts for days...even weeks...

So how???
I'm really depressed and trying to cope daily drives me mad.
I'm traumatised by sound.
And I'm worried. Scared...afraid...anxious and worried.
Worried what my future holds for me.
What can I do???
I cannot even talk to people.
I cannot lead a normal life.
People are giving me grief for no reason.
They don't understand because it's not them and they'll find ways to discourage me.

What should I do?????
Exposing to sounds make my hyperacusis and tinnitus worse.
My pain is getting worse.

I have high suicidal thoughts and severe depression.
I have chronic insomnia and I'm too tired to do anything.
What should I do???
I have no choice or options now.
Everything I do...seems to backfire and hurt me more.

In the end...I just retreat into my room or not pain gets worse.
I cut myself out completely from people.

Nothing is the same anymore.
Every happy moment I have is merely something in the past.

Every day I ask the same questions but no one can provide me with the answers.
Every day I wake up knowing it's another day to suffer from pain.
Every day...when I look at other people's lives...I couldn't help but to think of mine.
Every day...I wish it could stop but it never ends.
Every day...I try my best but in the end it's still the same.
Every day...I try my best to be positive but I ended up sadder than before.

Everything seems to get worse tenfold.
Please...can anyone help me or advise me?
I'm lost and confused.
0
EDogg

Registered:
Posts: 158
Reply with quote  #2 
Hi Cemelia,

I am so sorry you are continuing to struggle and my heart goes out to you. Please hang in there and stay strong. You need to get help for your depression and anxiety urgently! Many (most) folks with hyperacusis eventually recover. Take heart in this. Does your family know how severely this affects you? Your friends? Please reach out for help. Please see your doctor and get the help you desperately need. You can overcome this, but you cannot do it alone, shut up in a room. Please read the comments on your previous post — they still ring true.

You have support here. Many of us understand this ear pain and hyperacusis. It is not easy to deal with, but it can (and most likely will) get better.

EDogg
0
bananacupcakes

Registered:
Posts: 60
Reply with quote  #3 
I agree, ear pain is tough!!! I can handle loudness hyperacusis but not pain hyperacusis. It's just soul-destroying. I was suicidal when I first had pain hyperacusis, but someone encouraged me to wait for at least a year before I did anything drastic. Thankfully, after three months of crying everyday ans isolating myself from the world, my pain went from level 10 to around level 5, which is what I have now on better days. But to be honest, if I hadn't improved after a year at most, I wouldn't be here any longer. I tried all sorts of painkillers and nothing worked. A life full of pain is a curse, not a gift.

But do give yourself some time before deciding to do anything final.
0
Cemelia_03

Registered:
Posts: 7
Reply with quote  #4 
Tq so very much for giving the understanding and support that most people here don't give me. 💓

I have chronic pain hyperacusis and
tinnitus shoot up with pain too.
And unfortunately...from where I came from(Malaysia )...nobody has hyperacusis.

It's very rare and debilitating condition that even all the ENTs I met seemed to scratch their heads.

And I cry daily because of my ear pain strikes real hard.
Living with this is like hell...especially for a 15 year old.
I gave up almost everything.
I gave up schooling for my sake.
I gave up listening to music and singing which was once my passion and the best way for me to destress.

But...the hardest and sadest thing is that people are making it tougher for me to survive through this moment.

I had met so many ENTs that put me in an even lower position.
They never truly understand my situation.

One of them said...
Look Cemelia...your ear is finished.
It's gone. KAPUT. There's nothing you can do to get rid of pain. And there's nothing I can help.

Another said...
Hey...I think you need to be in a mental hospital.
You are like insane rather than having actual pain.
You might be crazy you know?

I couldn't bear the fact that doctors that are supposed to help people will be that unethical.
I cried so much after seeing those doctors.

Then...I went to see the third ENT specialist but unfortunately...
He said...
There's nothing wrong with your ear.
Stop destroying your life and GET ON WITH IT. YOU ARE DESTROYING YOURSELF.

Wow...so harsh and cruel.
I don't know what to do and how long I could last anymore.
Because my pain is as real as it is and it's getting worse.
How to get the right help and for people to understand what I'm going through at this moment?

I have very painful and piercing hyperacusis.
Too painful.
For a person at this age...I really don't deserve this.

And my family members are really loud and cranky.
I have to cope a lot living in a noisy household with babies and kids around.

And I have an abusive father.
Whenever I cry from pain hyperacusis...he will shout even louder just to see me in pain and will also hit me.

I have chronic insomnia and depression.
My suicidal thoughts are very high and I attempted suicide thrice.

But in the end...I'm still giving myself a chance to live.
Live for the physical and emotional pain people brought me.

My family are like...
It's just a tiny ounce of pain
You're such a wimp.

Hey...do you know how much pain i suffered all along?
It's very unfair to me already and I'm suffering alone for 10 months ++ and this is the support I get?

Please help me guys.
You're my last hope and I need help asap.
It's not good to be abused and misunderstood.
0
cactus

Registered:
Posts: 86
Reply with quote  #5 
Hyperacusis is treatable and often curable, even in severe cases. I cannot guarantee you that you will make a full recovery, but under care of a knowledgeable audiologist who specializes in hyperacusis treatment it should generally be possible to make improvement.

ENTs usually do not know enough about this condition to treat it properly and will tell you horror stories about not being able to improve. This is simply not true.

Most H patients also improve with time, although it can take many months. I hope you will be able to find someone who can help you with your treatment.
0
Aplomado

Registered:
Posts: 602
Reply with quote  #6 

I have pain hyperacusis also, caused by noise from a gunshot.  It was very severe in the beginning.  Sound therapy has helped a lot, though for me it has been very difficult with many setbacks.  You are getting bad advice from docs, I am afraid, few know about hyperacusis.  Forget those ENTs that tell you you cannot ever get better.  

Finding an audiologist that does TRT treatment would be ideal.

However....

If you do not have access to a audiologist that does TRT treatment, you can do sound therapy at home.

If you have a smart phone an mp3 player, there is a free app that you can use for sound therapy:

https://play.google.com/store/apps/details?id=com.ileisou.htsoundtherapy

This pink noise CD is good for sound therapy and comes with instructions, though it is not free: (it is a good product, I use it)

http://www.hyperacusis.net/what-to-do/helpful-products/

You can do music therapy; rob has a protocol that helped him (I have not done it):

https://www.chat-hyperacusis.net/post/music-protocol-for-decreased-sound-tolerance-7894014

Of these, the pink noise CD is the only one I have used personally.  I have also used CDs of water noises, slowly increasing the volume over time.  (I found the pink noise more effective, but water noises did help too).

You will probably need to start out very quiet with the music / sound you listen to and increase very slowly.

Most people inprove with gentle sound exposure.  There is a lot of variation in response though.  We can't promise you how you will respond.

I also wanted to kill myself when I got hyperacusis.  I am very glad I did not.  While I still have hyperacusis, it is not nearly as bad as it used to be.  Do not hurt yourself.  Not only does God forbid it, it deprives you of the chance to ever get better.

A lot of us here have had similar feelings to you.

0
Wellness1_manifested

Registered:
Posts: 23
Reply with quote  #7 
Hang in there. I was diagnosed with Severe Hyperacusis in bothcears. I, too, seriously thought of committing suicide until I found out about fistula repair surgery. There is hope! I have had successful surgery from the Brilliant Dr. Silverstein at the Silverstein Institute in Sarasota, Florida. Check out Hyperacusis Hope on facebook. Wellness abounds!
0
brownie

Registered:
Posts: 10
Reply with quote  #8 
Quote:
Originally Posted by Cemelia_03
Hi all.
I have severe hyperacusis on left ear that causes EXCRUCIATING pain.
I have chronic tinnitus on both ears too.
It all happened last year when I had a terrible viral infection. Admitted to hospital for days and the next day after discharge...I couldn't hear in left ear.

Did numerous hearing tests and found out 60% permenant hearing loss in left ear. It's due to damaged inner ear hair cells.

2 months later...I developed pain hyperacusis.
The pain is so extreme and unbearable to the extent that normal human speech or normal conversational tones hurt me more than I can ever express.

I was forced to leave school.
I was room bound now.
I couldn't bear the sounds of outside noise the moment I stepped out of my room.
Everything is abnormally loud.
Now...I couldn't even stand people talking or whispering to me. And I need to wear earmuff. There isn't a choice. I wear it every day and everywhere I go. Removing it even for a short while seems impossible because the moment I took it off...that's where my extreme pain strikes.

And I cry daily. Because the pain is 24/7...not only when hearing sounds.
Even when I'm in a background with minimal sound...my ears can burst into extreme pain that is worse than thousands of knives stabbing my ear CONTINUOUSLY.

I felt gunshot pain when I expose to SOUND.
It's like bullets penetrating my ear CONTINUOUSLY.
My ear pain lasts for few hours...usually 6 HOURS and above.
Sometimes it lasts for days...even weeks...

So how???
I'm really depressed and trying to cope daily drives me mad.
I'm traumatised by sound.
And I'm worried. Scared...afraid...anxious and worried.
Worried what my future holds for me.
What can I do???
I cannot even talk to people.
I cannot lead a normal life.
People are giving me grief for no reason.
They don't understand because it's not them and they'll find ways to discourage me.

What should I do?????
Exposing to sounds make my hyperacusis and tinnitus worse.
My pain is getting worse.

I have high suicidal thoughts and severe depression.
I have chronic insomnia and I'm too tired to do anything.
What should I do???
I have no choice or options now.
Everything I do...seems to backfire and hurt me more.

In the end...I just retreat into my room or not pain gets worse.
I cut myself out completely from people.

Nothing is the same anymore.
Every happy moment I have is merely something in the past.

Every day I ask the same questions but no one can provide me with the answers.
Every day I wake up knowing it's another day to suffer from pain.
Every day...when I look at other people's lives...I couldn't help but to think of mine.
Every day...I wish it could stop but it never ends.
Every day...I try my best but in the end it's still the same.
Every day...I try my best to be positive but I ended up sadder than before.

Everything seems to get worse tenfold.
Please...can anyone help me or advise me?
I'm lost and confused.
0
brownie

Registered:
Posts: 10
Reply with quote  #9 
Hi Camelia, i know exactly what your going thru. iv vertu all become a hermit after working years in the hospitality industry. all of a sudden i cant stand ANY NOISE!! Even the birds drive me crazy. the rustle of paper, more than 1 person talking the everyday sounds j6st hurt SO MUCH!! NO ONE WILL LISTEN, THEY THINK YOU ARE LAZY AND DONT WONT TO WORK!! I love and miss working,but the noise is so painful and debilitating. Please dont give up. there are many of us out there, that i didnt realise that has this horrible illness. we look fine on the outside but inside we are screaming with excruciating pain. ive seen on this message board that there is this Dr Herbert Silverstein who has operated on patients on the fisibular round window in the ear that has been successful and this Dr Anirvan Banerjee. im not good at adding info from other pages but try to google it, my email address is sue.dia@live.com. please contact me anytime as i know exactly how you feel. im going to see my ent specialist about this operation, but im on a very low income so will have to save to see them.i live in NSW Australia. where are you
0
Wellness1_manifested

Registered:
Posts: 23
Reply with quote  #10 
The links for surgery in the UK and the Silverstein Institute are on facebook "Hyperacusis Hope. I feel for the pain you're going through. Wellness prayers to you and all who suffer with this debilitating condition. We need to get some celebrities to raise awareness of this! Wellness2 manifested/Sandy McDonald
0
DanMalcore

Avatar / Picture

Dan
Registered:
Posts: 1,397
Reply with quote  #11 
Dr. Silverstein's procedure is a band aid and, in my view, does not put the patient on the proper path to improving their decreased tolerance to sound.  I want to be clear on this - I understand that reinforcement of the round and oval window with temporalis fascia or tragal perichondrium may offer some benefit for individuals with severe hyperacusis however these are, for the most part I believe, are individuals who have never been to a qualified clinician and completed TRT.  

In 1991 I came down with severe hyperacusis.  The mere sound of my ears running across my pillow at night were too loud.  My LDL's were at minus decibel levels.  I could not tolerate my own voice.  For those who have not heard my story it can be seen at this link:

http://www.hyperacusis.net/what-to-do/success-stories/

I understand that everyone wants a quick fix, but Dr. Silverstein's approach, in my view is not the way to begin.  And contrary to what some would have you believe, it can have a negative impact on tinnitus.  Furthermore, as one ages and hearing loss sets in the opposite problem surfaces - how do I undo this so I can hear better.  The non-invasive path to improving decreased sound tolerance (DST) is sound therapy.  YOU CAN DO THIS ON YOUR OWN through the proper diagnosis, treatment and directive counseling of a qualified clinician.  Yes it takes time but rehab always takes time as it taps into your bodies own ability to recover.  In a survey this network took years ago by those who completed TRT 91% saw significant improvement in their DST.

As the founder and administrator of this network from the very beginning it troubles me to see the advocates of the Silverstein patch take over this network message board lately.  I question whether some of these individuals are receiving any compensation or are employed by the Silverstein team when in fact they appear in his promotional videos.  The constant soliciting of this approach will be monitored from this point on.  This message board will not continue to promote his practice because it violates the rules of this forum.  In closing I want to make it clear that I am not suggesting that the doctor is unprofessional or unethical in any way.  To his credit he has developed a quick fix with a very invasive surgical procedure that does dampen sound somewhat because of what is done to the inner ear.  I quite frankly would not want anyone tampering with my inner ear when I know I can improve my sound tolerances with sound therapy.  The first step should be sound therapy not the scalpel.

I will not do a back and forth with people who want to argue with me on my position on this.

Dan

__________________
"Yesterday is ashes, tomorrow is wood, only today does the fire burn brightly"
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