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Cemelia_03

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Posts: 7
Reply with quote  #1 
I wanted to know more abt why H n T is still a medical mystery...not only to medical professionals but also to the sufferers.

As a chronic severe pain hyperacusis and tinnitus sufferer....i developed TTTS N ASD along the line too.

It's been 12 months with no improvement either.
I hv to downplay my symptoms all the time n it's wearing out on me.

Thing is...all these doesn't go off. The pain stays after exposure to sound.
It aggravates my pain tenfold.

It's always there to remind me.
No matter what I do.

In Malaysia no clinician who succeeded in treatment for H n T.

My ear pain seems to translate into cochlear related issues or nerve is quite damage n injured from the noise impact.

Couldn't there be any other way out?
1 less painful with not so many relapses?

I relapse in almost every hour and very prone to pain attacks n hearing distortion that normal human speech or normal conversational tones hurt me more than I can ever express my pain.

I almost hv the feeling that H n T can worsen any given minute without being cautious.

N living with H n T seems to make yr mind appear frazzled.
Anyone has that sensation?
Like you're floating in clouds instead of walking on land.

Like you're living...but at the same time you're not living.
If u get what i mean.

Every setback is so extreme and unbelievably overbearing for me.
Relapses i face r major not minor...
At least in my case...

Every patient's case seem to differ to a certain extent.


Correct me if I'm wrong but it's rather evident that clinicians n experts r extracting a lot of information from the sufferers. Since what we hv is considered rare n few in numbers( if u compared to other health conditions) they try to put the perspective into view by getting hyperacusis patients to tell n describe.
However...I would like to add that there's many medical professionals that clearly aren't interested in these types n will try to discourage or mislead patients into thinking they can't recover n I've personally encountered numerous occasions whereby my doctor... even ENTs that disregard my ear pain n hyperacusis.

I feel we as the ones having it should have the audacity to bring these matters into light and to educate ourselves n medical professionals into tapping into it further. Of course provided they listened n offered moral support. Some of them are downright misleading I must regretfully say.

What I read abt H n T so far ...
It might hv to do with neurons misfiring signals into our ear...

N in severe pain hyperacusis....pain fibers in cochlea r constantly activated....initiating the pain response.

Of course when I explain it to everyone else n people around me they don't genuinely believe that. It's rather unlucky to be living in pain and having zero support. People can say the most absurd things n the nastiest remarks.

But I hope you guys can understand my situation n needs...
I wanted to ask...

What other options are available considering I couldn't tolerate even gentle brown noise?

Unstable noise is even worse so no nature sounds like birds ocean rain or whatever.

Pls advise n do help ur fellow sufferer.
And if anyone would like to discuss/explain/educate/inform the mechanisms of what causes H n T n its implications...solutions n treatment goals...I'll be very grateful for that.
Let's all help to educate each other in any way possible.

Btw im 15 n i live in pain daily.

Many thanks.
0
gvkk

Registered:
Posts: 18
Reply with quote  #2 
Cemelia,
I'm sorry that you have this. Did you say that you're 15 years old? You write very well for someone of age 15. 

I am writing because I don't know what TTTS N ASD  are, and apparently it is not hyperacusis and, or tinnitus but something else, right? Would you explain it.

And yes, hyperacusis is all about pain. But for me it gets worse if I'm tired, or upset or my allergies are bad. 

Some people say pink noise.

For me it comes and goes. 

G

__________________
gvkk
0
JohnMarc

Registered:
Posts: 26
Reply with quote  #3 
Quote:
Originally Posted by Cemelia_03
I wanted to know more abt why H n T is still a medical mystery...not only to medical professionals but also to the sufferers.

As a chronic severe pain hyperacusis and tinnitus sufferer....i developed TTTS N ASD along the line too.

It's been 12 months with no improvement either.
I hv to downplay my symptoms all the time n it's wearing out on me.

Thing is...all these doesn't go off. The pain stays after exposure to sound.
It aggravates my pain tenfold.

It's always there to remind me.
No matter what I do.

In Malaysia no clinician who succeeded in treatment for H n T.

My ear pain seems to translate into cochlear related issues or nerve is quite damage n injured from the noise impact.

Couldn't there be any other way out?
1 less painful with not so many relapses?

I relapse in almost every hour and very prone to pain attacks n hearing distortion that normal human speech or normal conversational tones hurt me more than I can ever express my pain.

I almost hv the feeling that H n T can worsen any given minute without being cautious.

N living with H n T seems to make yr mind appear frazzled.
Anyone has that sensation?
Like you're floating in clouds instead of walking on land.

Like you're living...but at the same time you're not living.
If u get what i mean.

Every setback is so extreme and unbelievably overbearing for me.
Relapses i face r major not minor...
At least in my case...

Every patient's case seem to differ to a certain extent.


Correct me if I'm wrong but it's rather evident that clinicians n experts r extracting a lot of information from the sufferers. Since what we hv is considered rare n few in numbers( if u compared to other health conditions) they try to put the perspective into view by getting hyperacusis patients to tell n describe.
However...I would like to add that there's many medical professionals that clearly aren't interested in these types n will try to discourage or mislead patients into thinking they can't recover n I've personally encountered numerous occasions whereby my doctor... even ENTs that disregard my ear pain n hyperacusis.

I feel we as the ones having it should have the audacity to bring these matters into light and to educate ourselves n medical professionals into tapping into it further. Of course provided they listened n offered moral support. Some of them are downright misleading I must regretfully say.

What I read abt H n T so far ...
It might hv to do with neurons misfiring signals into our ear...

N in severe pain hyperacusis....pain fibers in cochlea r constantly activated....initiating the pain response.

Of course when I explain it to everyone else n people around me they don't genuinely believe that. It's rather unlucky to be living in pain and having zero support. People can say the most absurd things n the nastiest remarks.

But I hope you guys can understand my situation n needs...
I wanted to ask...

What other options are available considering I couldn't tolerate even gentle brown noise?

Unstable noise is even worse so no nature sounds like birds ocean rain or whatever.

Pls advise n do help ur fellow sufferer.
And if anyone would like to discuss/explain/educate/inform the mechanisms of what causes H n T n its implications...solutions n treatment goals...I'll be very grateful for that.
Let's all help to educate each other in any way possible.

Btw im 15 n i live in pain daily.

Many thanks.


I am really sorry about your situation. And am not sure what will be your best way forward. But here are my suggestions. 1) get into counseling therapy if you aren't already. With you extreme case I'm sure it's taking a toll on you mentally and cbt will be very helpful for you, even if it doesn't help to explain you the causes of H and T. 2) I would recommend buying books by Jastreboff that talk about this condition. I think in the intro message on this board there are other book recommendations too. These books will explain to you the mechanisms of H and T better than someone could do in a short message on this board. 3) Once you are armed with your best understanding through these books, then I would say contact Jastreboff and other well-renowned medical professionals in H and T via phone or email, and ask for their advice, since there doesn't seem to be any expert in this area where you live in Malaysia. You can do step 2 and 3 concurrently, don't need to wait until you have read the books before you contact Jastreboff etc.

If anyone has additional or better suggestions, please chime in, as I'm sure there are better suggestions for you than what I said.
0
JohnMarc

Registered:
Posts: 26
Reply with quote  #4 
Quote:
Originally Posted by Cemelia_03
I wanted to know more abt why H n T is still a medical mystery...not only to medical professionals but also to the sufferers.

As a chronic severe pain hyperacusis and tinnitus sufferer....i developed TTTS N ASD along the line too.

It's been 12 months with no improvement either.
I hv to downplay my symptoms all the time n it's wearing out on me.

Thing is...all these doesn't go off. The pain stays after exposure to sound.
It aggravates my pain tenfold.

It's always there to remind me.
No matter what I do.

In Malaysia no clinician who succeeded in treatment for H n T.

My ear pain seems to translate into cochlear related issues or nerve is quite damage n injured from the noise impact.

Couldn't there be any other way out?
1 less painful with not so many relapses?

I relapse in almost every hour and very prone to pain attacks n hearing distortion that normal human speech or normal conversational tones hurt me more than I can ever express my pain.

I almost hv the feeling that H n T can worsen any given minute without being cautious.

N living with H n T seems to make yr mind appear frazzled.
Anyone has that sensation?
Like you're floating in clouds instead of walking on land.

Like you're living...but at the same time you're not living.
If u get what i mean.

Every setback is so extreme and unbelievably overbearing for me.
Relapses i face r major not minor...
At least in my case...

Every patient's case seem to differ to a certain extent.


Correct me if I'm wrong but it's rather evident that clinicians n experts r extracting a lot of information from the sufferers. Since what we hv is considered rare n few in numbers( if u compared to other health conditions) they try to put the perspective into view by getting hyperacusis patients to tell n describe.
However...I would like to add that there's many medical professionals that clearly aren't interested in these types n will try to discourage or mislead patients into thinking they can't recover n I've personally encountered numerous occasions whereby my doctor... even ENTs that disregard my ear pain n hyperacusis.

I feel we as the ones having it should have the audacity to bring these matters into light and to educate ourselves n medical professionals into tapping into it further. Of course provided they listened n offered moral support. Some of them are downright misleading I must regretfully say.

What I read abt H n T so far ...
It might hv to do with neurons misfiring signals into our ear...

N in severe pain hyperacusis....pain fibers in cochlea r constantly activated....initiating the pain response.

Of course when I explain it to everyone else n people around me they don't genuinely believe that. It's rather unlucky to be living in pain and having zero support. People can say the most absurd things n the nastiest remarks.

But I hope you guys can understand my situation n needs...
I wanted to ask...

What other options are available considering I couldn't tolerate even gentle brown noise?

Unstable noise is even worse so no nature sounds like birds ocean rain or whatever.

Pls advise n do help ur fellow sufferer.
And if anyone would like to discuss/explain/educate/inform the mechanisms of what causes H n T n its implications...solutions n treatment goals...I'll be very grateful for that.
Let's all help to educate each other in any way possible.

Btw im 15 n i live in pain daily.

Many thanks.


Also, read Rob's post on this board. He couldn't tolerate pink noise either in the beginning. Even though pink noise has lower energy in the higher frequency it is still broadband ie contains some energy in all frequencies. Even brown noise I believe contains some energy in all frequencies. What Rob did I believe was he used filtered noise, i.e. completely removed frequencies that he couldn't tolerate at all.. and just listened to the noise filtered down to his tolerable frequencies (ie frequencies where your LDLs are better than other frequencies).. and then slowly started adding other frequencies. Birds, rain, ocean all of them likely contain at least some energy in the frequencies that you can't tolerate, so if you use those, again filter out your problem frequencies to start with, then add them slowly over time. This would be another thing you can try. I think there should be tools online that help you filter out frequencies if you provide them with certain audio files.

Rob was able to overcome his H and is a legend on this board, so his posts have a lot of valuable advice, especially since his LDLs started really low too.
0
WhatHappenedDenis

Registered:
Posts: 46
Reply with quote  #5 

Hi Camelia:
Every thing you state is true but what is also true is that "IT WILL GET BETTER!'
When I first read that I thought it was a joke but now 18 months later I'm saying it myself :-)

You're only 15 so I'll say it in some terms that might make some sense- Think of a dam that has a crack and water seeps through - only after the entire crack is sealed will the water stop . That's how it's been for me - eight months of non stop loud ringing and loud reaction to any sound then one day it started getting better. It's as if one section of the brain has the crack and another another one is signalling the problem (H and T) This section will start slowly reducing the strength and effectiveness of T (H goes away slowly T becomes less bothersome) once the section of the brain that had the crack is covered. The section with the issue heals very slowly - we're used to 'instant' relief tablets hence this slow recovery is not what we can bear!

In the meantime go the https://www.tinnitustalk.com/ website and search on your specific issue - I believe I read something there about your case - Every case is different and don't read the scary posts if the symptom is not EXACTLY like yours

Get an adult to help you on this and also look for supplements that fix ear related issues (I took Tebonin and Vitamin B3 because I have high blood pressure and wanted more blood blow to the brain to expedite healing). And it may have worked ! You're right - the medical community don't have a clue and it's not financially important for them to worry about these 'exceptions

Think of my post as a relay stick  (in a sports race) . The above information gave me strength to get through and now I'm passing it to you to continue the race and then pass it to someone else and FINALLY WE WIN!!!

0
DanMalcore

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Dan
Registered:
Posts: 1,456
Reply with quote  #6 
Quote:
I wear earmuffs all the time too.


Dear Cemelia, my heart breaks for you because you have painted yourself in a corner.  There is no way you will get better when you wear earmuffs all the time.  Your sound tolerances will continue to worsen and your pain will not go away.  You are overcome with a fear of noise.  There is only one way to get your life back and that is through sound therapy.  Denis's promise that you will get better is true providing you undergo sound therapy and face up to your fear of noise.  It is critical that you travel to see a trained clinician.  If you refuse to do this I highly recommend you contact Stephen Nagler, M.D. through his website...

http://www.atlantatinnitus.com/

I am very concerned about you.  He has treated cases as severe as yours and would be the key to you getting your life back.

Please do this.

Dan

__________________
"Yesterday is ashes, tomorrow is wood, only today does the fire burn brightly"
0
WhatHappenedDenis

Registered:
Posts: 46
Reply with quote  #7 

Hi Dan:
I have great respect for Dr Nagler and recommend his non biased posts to anyone suffering from Tinnitus. However we're talking about Hyperacusis here - something he has neither suffered nor comments on. So you know , he doesn't believe in 'reactive tinnitus' -something that I suffer from too so his mention in this case is not very relevant

I feel we should always first address the emotional distress we feel in the early months instead of adding to it by forcing habituation. I wore earmuffs too in the early months as it let me go out and enjoy a few things instead of despairing in a closed room- slowly I wore them lesser and lesser and habituated to sounds- now 18 months later it's much better and I feel good that I got something out of life even in the days of despair by using ear protection. Each case is different and I too believe in habituation and not overusing ear plugs - but getting through the early months is the most distressing part which is more important 
Also clinicians and other audio technologists work well for sound trauma related Tinnitus not H 

She's just a teenager - so enjoyment with friends is foremost for her (weren't we there once) . Recovery is inevitable (no matter how slow it is) but this phase of her youth won't return. The people around her are best to guide her through this . We both wish her well so that's all we can do in this forum

Best

0
Phillychris1

Registered:
Posts: 13
Reply with quote  #8 
For some temporary relief try A drug called klonipin. I have sever pain related H and T that comes and goes, and it’s been a few years now. I’ve tried everything. My current regimen that seems to be the best yet is. NAC supplement, magnesium supplement, then 6 Advil and 4 Aleive before I go to work. And I protect my ears several times a day but only when necessary. Mainly driving and other pound environments. I use clear musicians plugs that aren’t noticeable. Then each night I take a Klonipin to sleep. I’ve found that good sleep is essential for me. And the klonipin also seems to help with the stress of this terrible hopeless pain.
I know many on here say to not use drugs as it only masks the pain. But I only get a 30 day script when it gets really bad and as soon as I take 1 about an hour later I can feel the tension pulling around my ear start to ease. Each day it gets better and I sleep well. After a few weeks of this I feel almost healed. Although it never lasts. But at least I get a few weeks of feeling normal here and there. I’ve also started getting head massages concentrated around my bad ear and that helps tremendously, for me, it seemed to get worse as my muscles around my ear and neck seem to tightened and once they are aggravated. Tolerance is down, and that leads to more pain and more tension. So once it’s so bad I can’t take it, I do another 30 days of meds, massages and protection to get back to a place where I can live a relatively normal life.

It’s different for everyone and I’ve tried everything and this latest method seems to be the best yet for me.


Good luck.
0
WhatHappenedDenis

Registered:
Posts: 46
Reply with quote  #9 

Chris:
Have you tried pink noise? I bought a machine and have it on 24X7 slowly raised the volume from close to zero to almost 4 now

I too believe in head massages - I picked up a head massage oil and spend about 3 mins a day doing a head massage - made me feel better and had huge positive effects on the hair :-)

I also learnt some breathing exercises whereby you take a deep breath and move it around the lungs and then exhale - that seems to have some effect on the inner ear and helps too

Do try the pink noise - you really just need to leave the sound machine on - there's a lot of research indicating positive effects and I o believe that helped in sound tolerance for me - bust as you may say who knows what helps and what doesn't?

Good luck ..

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