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Leila9

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Posts: 5
Reply with quote  #1 
Hi,
I have severe hyperacusis resulting from a mild concussion that does not show up on an MRI or CT scan. Because nothing shows up on an MRI and because of how severe it is, many doctors quickly jump to the conclusion that I have a mental disorder and insist the proper treatment is anti-depressants and mood stabilizers. None of these medications have helped me over the past 9 months. Yet, they continue to treat me like it's all psychological and I simply need to not be anxious around sound. The problem is I've tried just dealing with noise that bothers me and it makes me much much worse. It causes setbacks when I'm slowly improving with hyperbaric treatment. I'm basically home bound because of noise sensitivity. Pink noise only makes my condition worse and electronic sounds are the most damaging to my ears so I do not think sound treatment is best for my case.

Hyperbaric treatment in a chamber is very loud so I decided to replicate the pressure used to treat concussions by simply scuba diving at the correct depth (between 6.6 feet and 15 feet has been shown to heal concussions at the same rate, even with regular air and not 100% oxygen) . I got scuba certified years ago because I used to want to be a marine biologist. However, doctors will obviously not recommend scuba diving to replicate hyperbarics. I don't expect them to because it doesn't have a medical label even though it provides the same pressure treatment. Unfortunately, I think this also makes me appear crazy even though it works.

Any advice on how to approach doctors and psychiatrists that insist it is a mental disorder and nothing else? They use the MRI results as definitive proof that I only have a psychological disorder. I tell them mild concussions don't show up on an MRI and they don't care. I got the MRI over a year ago when my noise sensitivity was not as bad and they want to give me another one. They think I'm even more crazy for not agreeing to an MRI. They don't understand that loud noise would cause terrible damage to my ears.

I really need doctors who will listen and provide good advice because my family is getting the impression that I'm crazy from them. And my parents want to force me to accept sound that I know will cause damage because of prior experiences I've had with sound.

Thanks so much for any help.
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dave2

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Posts: 96
Reply with quote  #2 
You could print out the article at this link and share it with your doctors. It discusses in detail the current state of research with regard to hyperacusis - from a physical point of view, not mental.

And read the comments at the bottom, here is one from someone that seems to be struggling with their doctors too:

"This is a great article. My worst experience with the medical fraternity here is to find that l am not even believed when l try to describe my symptoms, and then find myself being told to consult a psychiatrist."

http://hyperacusisresearch.org/an-md-summary-of-the-2016-aro-hyperacusis-symposium/

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bellsareriging

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Posts: 16
Reply with quote  #3 
I  agree with  Dave2  this is  the best, most detailed  credible  information  you  will ever read  regarding
Hyperacusis.
The entire  article at long last answers many Questions we have all sought, for those that suffer  enourmously
this is compulsory reading.

For the  longest time  I have advocated that my hyperacusis is not  because of  my Mental state,    my hyperacusis / was bought about by a Physical incident, but by the time I reached many   doctors/ audiologists/  ENT/  and the rest, it  could be easy,  now looking back  to access my hyperacusis with a Mental   disorder, because I exhibited  all the  signs,
*depression, anxiety, panic attacks, and the list can go on* But  is was  Because Of MY  HYPERACUSIS  and  Lack Of
UNDERSTANDING  by the medical  Profession.

Whilst the article  requires  understanding, and most of us are sufferers, It is an important  article to have  downloaded  to take  to  your   Hyperacusis appointments.

We are not in the  dark any more if we choose  to  read  this, it has been  written and worked on because of us, to benefit  us, this is  the contributors  to this articles  work  " to Understand  hyperacusis"  to undo
some  of the  "hoo doo "  damage that is online.

No one knows your body like you do, now take the  next step, educate yourself, then educate  the Medical world  armed with this document.

* Note the  wearing  of headphones, I am noticing that all they do Is confuse my ears !  whilst they
may block out  sound  when required, when I remove them, my hyperacusis is at it's worst, in essence
our  ears  are there  for a reason when we cover the out of neccesity  we are confusing them.

exallant  article  that should help may of us.

Bell
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Johnloudb

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Posts: 1,951
Reply with quote  #4 
Leila,

Don't be discouraged. So far your doctors have not offered you treatment that actually works. You haven't done TRT yet. Just trying pink noise is not TRT ... I truely hope you find some real help and find your way forward.

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Aplomado

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Posts: 711
Reply with quote  #5 
I agree that hyperacusis is for most people not a psychiatric problem, other than the torment that the pain causes.

The posted article is incorrect in saying that sound therapy may "help some people gain several dB of LDL but none have been found to come close to a cure."

Sound therapy does completely cure some people, as some members of this board can tell you.  Sound therapy does significantly help others and let them live normally.  There are some people that are not helped by sound therapy though.  I don't know if it will help you, but it would be a good idea to try.

The hyperacusis research page doesn't give much emphasis to sound therapy for some reason.
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Leila9

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Posts: 5
Reply with quote  #6 
Thank you all for your advice! I love the great article summing up hyperacusis research. I plan on bringing it to future doctors appointments. I'll also look more into TRT.

Another treatment option I have heard about is PEMF. A doctor mentioned it to me in the past but he said it was a $40,000 mat so I didn't research into it much. It's much more affordable now than it used to be. A lot of research has shown that it can help heal a variety of medical conditions. I came across PEMF again on Facebook recently through Lil Bub's Facebook page. I'll attach a screenshot of a section of his biography below.

They sell affordable mats with payment plans at pemfsupply.com. I'm considering trying it out.

Attached Images
Click image for larger version - Name: IMG_0948.JPG, Views: 26, Size: 398.64 KB 

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bellsareriging

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Posts: 16
Reply with quote  #7 
Leila9

I  do Not think you are  crazy, I believe you have a very  real condition in relation to noise,

What is  possibly crazy  is that  your family  would think it is  Okay  for you to under go another  MRI Scan.
MRI scans,   can do enormous  damage to the ears, even wearing protection,  which  is  evidenced  On this  site,
I don't  think many Radiographer's  world  wide  Know Of Hyperacusis/ or " A" noise  related  illness created by Noise, we are still in the   early  days  Of having this  as  common Knowledge,
MRI scans  cause Noise   related illness to name 2  Hyperacusis/tinnutus.

Suggestion,  download the  above evidence and give it your family to read  be patient with them,
as it can take a long time  to process that ears  can in fact  feel" Pain" and  understand what you are  feeling and why they hurt.

Go back  and read the article again and you will know that   anything that costs  $40-000 thousand dollars is exploitation of  our illness, and posting links  to  mats  on a possible  payment plan  is Not correct, please don't  do that or advertise it, they are the " loony's "  for
lack of a better word  that exploit  our pain ! and very vulnerable  people  so tired of the  daily grind  that is associated  with pain in the ears  will succumb and try anything.

Good Luck, you are NOT  crazy, 




Bell




I had to  come back and edit  my post  after reading about the mats and the  site you advertised, 

Leila9 listen to some  calming  music on low,  sit  in " silence" do Not buy those mats. I promise  you " silence will help more than those mats will, adapt your life style,  don't  pay for  it  !  just my opinion  but I am going to  go on record and  say those mats are bad  for hyperacusis   people.


You  need to  read the posts on the board, and then determine  what will help you,  because any Doctor that tells you that you have a mental  disorder  is not helping  you, those  doctors are the Ones  you leave behind In your thoughts  In your dreams, in your  desperation  to find a CURE. &  I Note  from your post  you have worked out what is  helping and what is Not, so don't  repeat  the   cures you have tried, educate yourself more, then inform  those who care for you and go from there, I hope I have  helped you [helpdesk]


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Leila9

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Posts: 5
Reply with quote  #8 
Thank you for your advice Bell! I would listen to music on low volume but surprisingly even that damages my ears. Natural sounds such as human voices, loud dogs barking, or the ocean don't bother me though. For some reason, I am very sensitive to electrical sounds. At one point, before I damaged my ears again with sound, pink noise really helped me (before I got a concussion I could go to loud concerts without any problems. After the concussion, I began to experience damage to my ears from noise very easily). I went from not being able to tolerate the sound of music or a voice on the phone or the hum of the refrigerator to being able to tolerate all of that again in a matter of a few days listening to pink noise. This was after I was on steroids for about ten days to treat noise damage. I don't believe I would have been able to tolerate pink noise before going on steroids. So I feel I need to figure out a way to heal more before introducing sound to speed up the recovery process. Because every time I attempt to listen to pink noise or something electrical, I experience setbacks. I think that aspect of my case is kind of unique. Thankfully, I can tolerate the sound of driving though. I should have posted more information about PEMF in my previous post. NASA has done a lot of research on PEMF. Here are a few links: https://research.jsc.nasa.gov/pdf/slisci-12.pdf https://ston.jsc.nasa.gov/collections/TRS/_techrep/TP-2003-212054.pdf The PEMF site I posted previously sells the mat for a little over $1000. I noticed there is a 90 day refund policy with a 12% restocking fee. The payment plans are $33 a month for 36 months. I have no idea if it is worth it but NASA research shows it helps regenerate and heal tissues. In the free PEMF book on their site, they also say that someone would only require a PEMF mat if they are not in direct contact with the soil enough. "Individuals who spend a large amount of time every single day going barefoot in the soil or sand- absorb plenty of these frequencies and don't need to supplement the frequency from the earth with a PEMF mat. The folks who would benefit from using a PEMF mat are the ones who are disconnected from the earth. People disconnect themselves from the earth by living in buildings that have wooden or concrete floors, wearing shoes with rubber soles, and riding in vehicles with rubber tires. " So there's a free way to get these frequencies as well. I remain impressed because NASA research supports it. Thank you for believing I am not crazy!

Setbacks are one reason I feel it is severe. I lose progress very easily. My hyperacusis has made it very hard to function.

For some reason, all electrical sounds are much louder to me than natural sounds. Though, occasionally some natural sounds bother me as well. I do wear ear plugs. And it's challenging because the human voice does not sound that much louder to me since developing hyperacusis. So I end up having problems hearing people with my ear plugs in sometimes. At the same time, electrical noises really bother me even when I am wearing ear plugs. This also confuses some people when they know I am noise sensitive, yet have difficulty hearing them... I usually just explain that some frequencies sound louder to me.

The sound of dishes don't bother me. The sound of electric paper shredders, vacuums, police sirens and car alarms definitely do.

Often, it feels there is something that does not belong in my ears. And the burning sensation will get much worse when I am bothered by noise. Sometimes, the strong burning sensation will last for days before returning to a more moderate level of pain.
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Mithrandir

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Posts: 24
Reply with quote  #9 
Aplomado, did TRT cure you ?
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Aplomado

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Posts: 711
Reply with quote  #10 
After I first got hyperacusis, TRT got rid of 98% of my hyperacusis in about six months of treatment.  It was pretty dramatic.

Unfortunately, I have suffered several relapses since then due to very loud noise, and have had to re-start therapy repeatedly.  It is has been a lot slower going since then, unfortunately (though it does work).
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Mithrandir

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Posts: 24
Reply with quote  #11 
So maybe TRT improved your symptoms first time but that's not a cure if I understand ?
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Aplomado

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Posts: 711
Reply with quote  #12 
It did not cure me completely, but it did make it so it it rarely bothered me (basically only really loud music annoyed me).  unfortunately, I relapsed due to a loud bagpipe.
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dave2

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Posts: 96
Reply with quote  #13 
Aplomado,

I find the concept of setbacks extremely interesting, though I am very sorry you had one and I hope you are able to improve again.

What do you suppose is happening inside the ear (or brain?) such that TRT can make a great improvement and then a loud noise can erase much of the progress?

I am not a doctor or scientist, so I am thinking about this only from the point of view of an amateur, but I do find it fascinating. It seems to me that if it could be determined what is going on with a setback, that would provide useful information about what is wrong.

This is just a guess, but to me it seems one possibility is that if TRT is helping and then a setback can happen, it may be due to something with a muscle, such as TTTS. Maybe the TRT enables an unhappy TT muscle to be soothed but then maybe a loud noise can reinjure the tensor tympani in some way. Similar to if someone has a sprained ankle, physical therapy enables it to improve, but then a great stress such as a hard jump may re-injure it.

I suppose it could be something mysterious going on with the brain too. I have read a great deal of Dr. Jastreboff's information but have not found much discussion of the concept of setbacks.



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Mithrandir

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Posts: 24
Reply with quote  #14 
I agree with Dave. How to explain setback whereas TRT temporary "cure" you ? Is it like a breaking ankle which stays fragile...


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Aplomado

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Posts: 711
Reply with quote  #15 
I suspect what is going on with me is not a "re-injury" to my ear but rather a re-sensitization in the brain.  The sounds that made me have relapses were loud but not really loud enough to damage the ear.  A normal person would pretty much be annoyed and blow it off.

This is my theory of sound induced hyperacusis.

First, there is an injury to the hair cells or nerve cells in the ear involved in transmitting sensations of loudness.  In my case, it was a gunshot sound.  This makes sounds seem very loud.  See the following article:

https://www.ata.org/news/news/hyperacusis-related-damage-nerve-cells-inner-ear

Secondly, the since the brain senses everything getting really loud, it tries to "protect" the ear inappropriately by increasing sound-related pain via sensitization.  It is an automatic process.  This creates a nasty feedback loop where more pain means more sensitivity, which equals more pain.  See the following article:

https://en.wikipedia.org/wiki/Sensitization


Sound therapy can "unlearn" these unhelpful sensations, but unfortunately, they can be re-learned pretty quickly if I'm not careful.  Sound therapy does work for me, but the process has been agonizing.  
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Rob

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Posts: 4,049
Reply with quote  #16 
Dave -

My take on setbacks is something hasn't been addressed in therapy that needs to be. 

Rob

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Laurac1960

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Posts: 16
Reply with quote  #17 
Please remember Hyperacusis can be caused by problems to the jaw and not always linked to your ears/hearing.

My Doctor prescribed tablets for schizophrenia and bi-polar at one point as the ENT consultant said my hearing was fine. I didn't take them as I cannot imagine they would have helped other than make me sleepy. Once he became aware of TMJ, he realised he was on the wrong path treating me with these drugs and we have now found a balance of Valium and sleeping tablets helps me find some relief at night.

I use music as a distraction during the day, manage a little TV in the evenings and then use a good Bose speaker to play waterfall music overnight.

I also scuba dive and the 3 hours a day under the water on a recent holiday were wonderful, unfortunately at night, the AC units and generators made up for it !

I wish you well xx


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Margy

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Posts: 194
Reply with quote  #18 
I would like to get speaker recommendations. I don't want to spend more than necessary, but I want speaker(s) on which to play nature sounds as realistically as possible. I have found a source of some good recordings of real nature sound (not artificial), but I'm nervous because my ears are bothered by even quiet sounds if they are repetitive and electronic. For example, even the fan blower in my car has an irritating sound in it, as do heating and cooling systems and refrigerators, even very quiet ones.

I realize I need to play some sound in my house, and I prefer nature sound to white noise or music. But I don't want to irritate my ears with a bad speaker. The ones on my phone or iPad are subtly irritating. I think they don't have enough bass.

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