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DepiFarkatsi

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Reply with quote  #1 
Ive been suffering from loudness and pain H and T after acoustic trauma caused by earbubs last June.I went up to 10 ENTs and 2 hospitals and in the end i was sent to mri.With just plugs.My torture is so much bigger since that.Both CT and MRI are clear as well my blood tests and autoimmune tests.Im trying pink noise daily from speakers but my ears are in fire.I sleep and walk in house with earmuffs.Ents just sent me to shrinks saying they cant do anything else.Im on benzos and antidressants now.I just turned 25 and im soscare
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EDogg

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Reply with quote  #2 
Hi Depi,

My heart goes out to you. It is so difficult and scary to experience these symptoms. Please take comfort knowing that you are not alone and there are many here who have, or had, hyperacusis with pain who have found ways to improve. Take time to read through the messages to newcomers. Read through the great information on hyperacusis and treatments on the hyperacusis network main web site. Also please read the success stories, both on the web site, as well as the many others within the archived messages in the message board. This place is a goldmine of hyperacusis experiences. When my H started, I had pain daily for months. Now it is only episodic, much better than before, and I’m very much a work in progress. And I haven’t even completed a formal sound therapy plan! There are many others who have and have improved significantly. Hopefully some might chime in.

It sounds like you have had a very thorough medical work up and it is good news that it was clear. Have you been evaluated by a neuro-otologist or audiologist specialized in hyperacusis? It seems that is the next logical step for you.

Please hang in there through this. There is much hope for improvement ahead. We are here to support you.

Best,
EDogg
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Steve2017

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Reply with quote  #3 
You have to try and get control of the stress and fear - take control and relax and breathe, read nice magazines and do a jigsaw puzzle, read a paper not online, ease back on that 'nothing' negative, skip past any negative stories and TV news - also look through look photo albums, anything that can help you to smile which will increase your energy vibration 'quality' for improved strength to help your body deal with health issues... and by all means keep busy with small jobs, but don't overdo it, rest when rest is needed. Do this for a couple of days and get back to us for more support.

Any people looking on, come and join us, you'll feel better being around people who care and know what you're going through.

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Margy

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Reply with quote  #4 
Steve,

These are all good ideas. But it kind of begs the question of why this hyperacusis is such a problem in the first place. Sounds that we have always accepted and naturally filtered out are now intrusive, painful, overly loud, and always unpredictable. This all makes it so difficult and often impossible to focus on the “nice things” that you are telling people to do.

It is as if you are saying, “it isn’t real. Just go back to normal and “presto chango!” You Will be normal again!”

As I said, they are nice ideas. But they are strangely distanced from the reality of the condition, so it seems a bit alienating to read these things.
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HST

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Reply with quote  #5 
steve,are ate hyperacusis person or not?
it seemed that u dont andersrand this illness.its harder then been a total deaf one.dont forget it in most cases b side iilness and tinnitus issues.u anderstand how to deal with other illness problem like:Maybe if I lent it to you on a wheelchair or walking stick, without auxiliary equipment such as a stick or a wheelchair ... more so whoever you help him walk can walk.u can't help a h person, if someone make noize or raiseit. supporting us psicologicly won't help Only if you come up with a true auditory solution to the horrible disease.The phonophobia sounds and others reactions that appear in addition like panic,rage ,anger or terrorist anger will also appear due to the intensity of the pain and duration of pain, recurrence of sub-second or middle-level pain or grather . The only thing to deal with for max 50 % in not the harder states is the ability of useing headphones to protect the headwith music or sound masking . Now that you understand how horrible the disease is,i hope. The symptoms of the reactions are perfectly normal in this difficult conditions. There is no interest in psychological treatment at all in this horrific auditory state. If a person is burned, he screams and goes wild, we,also like this,just in our ears,we are not a psychological injury at all. If you read research on the matter - you will realize that it is an injury which The auditoryis at the level of nerve cells or brain centers that dont work normaly . .Tnnitus coyld be is usually a brain injuryin most if the cases.

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Steve2017

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Reply with quote  #6 
Hi Margy, just seen the email and a note that you'd replied. that was 24 days ago I posted that previous message, it was about the time other posts displayed my website. I don't charge for this service/information, just glad to get my life back after such a dark place that T and H puts us all in. - it displays relaxation techniques which can possibly help.

I can only tell you about me - I had H bad for 2 years, and it came on gradually over a decade before that, I was just telling family and friends I have over sensitive hearing, just took it as normal for my age until the ear plugs and ear muffs days. I didn't even know it had a name H until just before I joined on here. I think stress and fear of it increases the problem, plays a big part in it, just my thoughts on it.

http://www.strengthinminds.co.uk

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HST

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Reply with quote  #7 
look steve,h pain isnt amine body spirit isuies,it a fake dilling with a hardly pain desease!
the fear will come after the state of pain,not in all the pain states,sorly not before,to be in stress wont help any one,margy knew it. if she done the reflex acostic test antcthe tempibonetey test and the was good. fear can be dealed only if they werent good!- They can indicate a sensitivity condition called ttm hyperacusis, of the muscle adjacent to the eardrum, which goes into overactive activity because it is impaired and will result in anxiety from tones on the muscle, the solution offered in the market is surgery with Botox transplant for this muscle! Because it will not calm an abnormal condition of thוs muscle!.
the real subjectis how to deal is only with the pain!l.the fear-Phonophobia and or anxiety will come in the harder states of pain or the recurring moderate state of pains!, is not true to say that the fear make the pain!!!.sorry to tell this,steve,but if u had a mid hard pain h states,u cant say what u say here!.
we are, the noxacusis persons fills like hell!
.releif trying could not help before the pain come,only if u will reduce the amount af the highly pain then the fear wont come..sorry steeve,again,but this is the true....h pain is harder then back pain ,disks pains,,face or Joint pain, moderate or persistent headaches, or even fracture or dislocation, there is no pain approaching these pain levels! With music! You have to admit it. Shock states do not come against every frequency and any volume, it's all a matter of defense against frequency and intensity of it ... Everything else is a fool's nonsense,it could be a brain dammage! dont forget it,please.
You can deal and wait for month with state Toothache requiring root canal treatment without getting to dental doctor!, but Here you can't,its harder and stronger pain.u need to be with sony xm3 anc,or bose qc35ii anc headphones...sorry,but it will not eliminated all the states of pains but reduce all the pain states.they could deal with some noise till 60 db for good and reduce till 77db for some noises,even ib 82db for some ,and even reduce 27 till 30 dbwith some music!u can add even earpkuges for some min ,
it realy beter for the cronic t state of 24/7 t..i hope i helped u and others.. ye, it will eliminate some high f in 50db if u are with music,but not high f if in 60db witout music masking.
..for sure,its depoend what are the frequnceis that Injured or destroyed .
if u have a hearing loss its beter to the h,but not for the communication with the other persons.i am with those anc headphone..with out it,i could be in long way or deaf ,or maiby dead men..it the true,i am aint a week or An anxious or black-eyed or pessimistic person, I am aware of the potentials and dangers of the surrounding environment, I do not shut myself up all day, I am both independent in some functions and limited in others.ass mist of the
ht persons at all,i am happy man when there isnt any pain noises.
Auditory restriction, extremely intense communication difficulties in society, movement difficulties due to this h , grief over the situation, total and social harm with forced isolation states and distancing from noises, when it is unexpected and meets you without wanting it is much harder to deal with even before the corona begins to struggle. Extremely painful, definitely creating an impression that there is sometimes no need to continue, no purpose. But no psychiatric medication will help you. Even if you feel like you have broken tool, don't agree. All that wikl be tell the "therapists" is fiction and lies. Because they are nott Study or have studied this, it is proven from studies of global organizationsof tinnitus and hearing loss and H.what is your higher reduced tolerance ranges?in the higher f or the mid or the low f ?

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Aplomado

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Reply with quote  #8 
DepiFarkatsi- for God's sake, please go to an audiologist that can help you with sound therapy.  Your story is not unusual to those of us with hyperacusis.  Sound therapy is helpful for most of us.
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HST

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Reply with quote  #9 
i was diiling with the best enties,they do knew noting .!! one of them profhesor- not doctor !dont knew noting on hyperacusis machnizem,noting.some of them try to ejnure frim what i was saying on my deaseis, or try to send me to mental help,i enties and nirologies from hell in israel,it all to make me to take benzidoed drug!!.
they will take it! i hope soon !!!.. i have shock states with hardly long time of pain after it if wont go with my qc35 ii ,for sure.pluges dont help,ican beer them in my ears,all the hearing test timpononetry and acoustic reflex was good!
this is my name h s t -it mean hyperacusis shock tinnitus, i tryed 2 time pink n trt,from the first time from my injury,its bulls for pain h.
in my state ,israel,they do know nothing to find were is the structre/is that injuried in the hearing system,did 2 mri,there were good,i need fmri or meg scan that suit to h t- that had done to ht pepoles in researches...can anybody help me with it?please...trt even not desaperd my t,it was 1kht when i injures
d,aftee it became it 6k and also higher f on the 1k t iniitus ear.the problem is that i have low hl in my 2 ears for 4 y ago...almost 2 y after my acoustic trauma..
i dont knew what can be done..i afraid that it couldc be in the future stronger hl .there is no cure to my problem.i have insomnia couse of the cronic h and jow disorder with cknaks and pain from the t. lord help me please!!!!!!!!!!!!!!
Very careful on the street, in buildings, as well garage as possible, but a lot of state pains is still moderate and strong , with panic too .. Fear of the strong explosions of ears pains, some with loss of balance .. 40 db viukeme make me shock of a certain 1 high or ultra high frequency! The strongest hell section that is. Zen will aggravate the slight tear drop, I know. No such hearing disease is difficult to deal with. someone here is like me? i need aworld ent ir nerve ent..can some body cobtact me with such expert?

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Aplomado

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Reply with quote  #10 
HST- sound therapy has helped my pain hyperacusis.  I do not know your situation.
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HST

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Reply with quote  #11 
h,
explain ,please whar sound t did help u how iys thus and for how long each day and on what types of noise envirment,also for how mqny month?do y mean to pink noise trt?coyse i wrote here,2 time i did,no even little healing from it..its fake treatment...
Have you completely healed by this treatment?
did u do tests before : like temponometry and reflex acustic and oae?what was the result of them?
if u can answer those qestions ,we could anderstand toghetor if u have/had the same type of mechanisem like my pain p .
do u have tinnitus also?

what is your state of hyperacusis today?what u can hear that u couldent tolerate before?
did u go with hearing aid?plugs?airmuff?i ment befor this treatment and after?

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Aplomado

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Reply with quote  #12 
HST- sound therapy is not fake treatment.  I does not work perfectly and may not work for everybody but it really may work.

When I got hyperacusis my loudness discomfort levels dropped to 60 decibels.

The sound therapy I have done consisted of wearable sound generators worn all day long.  They toughened up my ears.  I also have listened to pink noise, starting very low and very slowly increasing the volume (one decible at a time) for 30 minutes daily as tolerance improves.  This has helped me tolerate louder sounds.

There are other methods of doing sound therapy, I don't think there is one method that that everyone must do.  I suggest you try different things and don't give up prematurely.

Fear and panic at sounds can also increase ear pain and hyperacusis.  This is something I have learned recently, and knowing this has helped a lot (using relaxation techniques to deal with fear of loud noises is helpful).  This has greatly reduced relapses in me after loud noise exposure.

I still have hyperacusis.  I may never get rid of it.  However, it is much better than it was.  My ears don't hurt all day long any more.  I can bear to do my job without excruciating pain and headaches.  I don't feel like everyone is yelling at me all day long.


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cozo

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Reply with quote  #13 
Well said
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dean cosnett
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HST

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Reply with quote  #14 
a. fear come after pain and again and again,not before,when u cant tolerate the noise/ies situation. it can be happened when there is a nerve damage! if u have hiden hearing loss or ultra high hl there is a reaserches on it that can be areal moderate pain that will couse fear anexity and stess and panik and teror or stress from those noise,but not all noises mske all of this,there noisrs thst couse onlt pain,agony also there is,u can ! on human
fear wont higher your ucl in all cases and states of pain!
trt with grow of 1db is your ear?..its bs,u can up it in 3-5dbspl ,not less!.if u have pink mask ,u can do it from 45db,why to try it from 30db spl?why? tell us what is the real deal in it?
dont u tolarate the noise in 35 db in in some high f,or in 25 db some ultra high? it a real hard pain,not mild or moderate pain..
do u dont have a pain in the h frequncies,and in the ultra high? were u have 60dbspl ucl,on what frequncies?i wana know to anderstand u.
e.if u stay 18 h aday with trt u can make a real bad state to one of the hearing centers,did u know it? its not for every pain h human ,ofcourse.
f. maby i had to ask it before,what was the couse of your hyperacysis?noise expose?
g.do u have tinnitus also?all day?
h.my trt was done only in qwite states! in homes!..if y think u can do it outside,or in a noisy places so u fake us! the treatment is only need to be made in quite places.u cant do it 18 h aday only if u are live along with someone that is realy qwite not near uand handle akk the home ussuises for u,in the 10-40 meterfrim u! u can be heat by noises in your home!from your home!.other u fake us.
i coso dont know alnost nothing in pain h
As for him,will he tell us about the his states hearing after the surgery he did?, and how much it help his hearing and his h can he tarate all state and kinds of noises?all volumes near 100dbspl in a all f? i didnt ask on 115dbspl..
Most of the surgeons are older persons. They were injured at an early ages, both for today most of them with Presbycusis (Presbyacusis or Presbycusis; from Greek presbys-old, akousis-hearing) is the culturally occurring phenomenon of neural sensory hearing loss as the age increases. hearing loss of age 65 and more at high frequencies!. this is the couse this surgry dosenot heal the h of a manier deasse human.
!couse in manier the problem of hyperacusis is in the low f ranges!
This surgry is a gradual decline and danger to tinnitus or increase the t. Have you felt it? I'd love for him to respond, and not curse me.
And there is no argument about it in the state of hyperacusis pain.If you have no pain but only anexity or fear ..so fine..pain-type hyperacusis, there is almost everything! Because it is the most difficult..and it will contain all states except missopenia. u argue with someone who got over 1000000 hit pains in his ears!. i dont count my headphones att all in those pains.I am not afraid from the most painful states, i knew it can make me with stroke or harder my deafness! you must understand! I dont have any need to estimate what will happend, i know what will happend!.
have no fear and I am aware of the dangers. that could happend.it real unreversible states which i think that i dont want to think on .Every day I live I run the risk.like in the night ,No hearing protection, no headphones at all or earplugs when sleep,only lite l maskingto sleep for the t. A strong blow or noise induced pain from the outside will affect the
can harder my hearing loss that already exists in this situation. To work ir have conversation its cant be for the most of us!..and it is impossible to communicate much due to the need for protection from environmental sounds that mask 60db talks with those generators.we have hl with hyperacusis!no only pain hyperacusis!!!!!! and it is difficult to move or stay or leave! through many situations of surprising and or painful noises, day by day on it exhausts the soul .. but must not despair,couse no one is realy here to help us!
ask sindy the girl from the utube that was hurt by A siren in her ear, and a sting in her ear.ask her if she was treat by trt?if its help her?i know the answer,it wil be zero help!
so if u can tell me if u have belatural hyper?
and what type of hyper do y have hl? tinintus do u have also? i am asking it again. couse u didnt answer me yet!
one more thing-your pain cant be all day long!in thus type of pain u will be suiceded in 5 min!..u can have evrey day pains,its bs to say that you had pain all day evrey sec! u couldent bear this situation even in mild pain for the all day ,no humanbing could tolarate this!20 sec of mid pain u nead to rest for 5
till 20 min! and its even not the nearst to the highest hurmful pain thatvis before shock+ pain state! shock state is the most hardly painfail state in pain h! i think i am the only one here that wrote about it.it can come from 40db
from one of the side of the ears and it will make pain in 2 ears at the same time, but not the same Intensity of pain in the ears, the pain lasts at the same time in both ears!,like in other state of pain h.
no one chat with me on it here.
It is unfortunate that I am very special in my pain situation.

it the same kind of hyper pain but harder and more painful. not stubbing pain in shock state,but till now it came from pure high f or ultra high f,when there is no so noisy envirment!,also it could be in state of .its the finel fruntre of the pazel of pain!!!!!!!!!!!!!!!!!!!!!!.

did u Ever attacked people from the time you becone an hypercusis, the ones who screamed close to you? Did you attack children or girls who never stop screaming closeto u, again and again? You screamed at all of that, you cursed them ? A little girl who screamed from a 1/10 of 1 second age of a year or oldor more, ummmm? Is that a dreadful situation, had u stack Punches to your walls ? or your closet door under not the hurdless pains? Did you want to throw a rock at a
car hornes in the street? All this because of unbearable levels of pain. I understand you understand that our situation is very different. It's the psycho-neurological responses of this horrible physical injury, I've never been in such a functional and existential and socially difficult situation.
most My relatives threw me into moans! And this does not come close to the terrible physical sufferingfrom the injury, this suffering is bothersome and debilitating. Some of those respones made with headphones in the ear canal or nfc headphones with music mask! or pretty good ear seals.now u must understant trt dose not sute to acute or chronuc pain hyperacusis!!!! ,A strong and fast change in environmental volume from nearly 40 to 115 db or 120db it beyond 30-50 db or more than my uc in those f. This has been proven at low frequency! My ucl there is about 80db from my tol test! No shielding by masking or ears proff was made for
those short 1/4sec ...

so now it like to say that cat is Just exactly a lion!..i didnt even talk yet on the high pitches of my t in my 2 side t couse of my a trauma!...it can make me nutch some nights...


..

good day for u.

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HST

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Reply with quote  #15 
Hello, I'm glad you're not cursing me.
A. I did not ask you about what lsellers do here and the stuff tbe sell, because as I explained it is not helpful. I have tried 2 trt periods in the past without any benefit. So why are you trying to publish all this Pink Noise? its looks like fake! sorry..
B. And why would this dan decide whether u to speak here or not? How is ihe related to your case and the surgry that u made ?

Something very strange about any matter that is going on here about this mysterious oval Window medical operation that you have been passionate about publishing in the past ... And suddenly you avoid it, why?
 Investing over $ 12,000 into surgery to replace the earplugs, it won't be useful. Includes flights outside of America Investing over $ 12,000 into surgery to replace the them?do u still fell pain in yiur ears?
did u had tinnitus before?and now?

please answer us,else its seem to be fake
operation to the ears...or to the hearing systym.
good day..

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cozo

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Reply with quote  #16 
Hi . Please join the Facebook group called

Hypercussis surgery success talk.
There are members of the group who have had the surgery same as me . Have a read and make you’re own mind up . Good luck .

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dean cosnett
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cozo

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Reply with quote  #17 
https://neconnected.co.uk/uk-first-procedure-for-debilitating-hearing-condition-carried-out-in-teesside/
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dean cosnett
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Aplomado

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Reply with quote  #18 


Hello,
What I think is going on in myself is that I acquired hyperacusis (from the noise of a gunshot)- everything sounded loud, and so, my ears, naturally would start to hurt with the "loud sound" they thought I was being exposed to.  My loudness discofort levels dropped to about 60 decibles  However, over a long period of time I did experience huge improvement in my sound tolerance due to sound therapy (wearable sound generators I got from an audiologist plus pink noise.  I listened to pink noise for 30 min a day at a comfortable volume, and increased it one decible at a time as I could tolerate it).... however, unfortunately my brain learned to associated certain noises (car horns, etc) with pain.  So when I would hear one of these noises (even if I did not think it was loud) I would get a spike of pain and hyperacusis.  I would have regular relapses, followed by improvement (due to more sound therapy), followed by yet another relapse.  Sort of like a chronic pain issue- a person gets a serious injury to a foot, and even after the injury is healed their brain thinks the foot still should be hurting every time it is used.

I do not know if his is happening with you, this is my experience.

So, it is my experience that fear of sound can amplify pain and spike hyperacusis, at least in my case.  I do not believe all hyperacusis pain is do to fear and a learned reaction, though it can turn into that, like what I think happened to me.  I have been struggling with hyperacusis for a long time, and discovering this has made it a lot easier to cope well.  When I hear a car horn or whatever aggrevates my ears, I know that I am not "doomed" to suffer yet another relapse.  I calm myself down (deep breathing), and have an alcoholic drink or two, and my ear typically stops hurting and I quit worrying about it... and no relapse occurs.  It is quite astounding how well it has been working for me.

I do not understand some of what you are saying to be able to respond to it.  I do have mild tinnitus.  If you have not seen an audiologist that specializes in sound therapy I recommend you do so.
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Aplomado

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Reply with quote  #19 
cozo- I do hope Dan does not ban you from the site.  We need to try whatever works, and that may mean different things for different people.
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cozo

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Reply with quote  #20 
My thoughts exactly. Thanks
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DepiFarkatsi

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Reply with quote  #21 
Thank you all for your kind replies!My LDLs are mid 30s-mid 40s. My pain got better since the last post and im planning visiting an audiologist this month
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AnthonyO

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Reply with quote  #22 
Quote:
Originally Posted by Margy
Steve,

These are all good ideas. But it kind of begs the question of why this hyperacusis is such a problem in the first place. Sounds that we have always accepted and naturally filtered out are now intrusive, painful, overly loud, and always unpredictable. This all makes it so difficult and often impossible to focus on the “nice things” that you are telling people to do.

It is as if you are saying, “it isn’t real. Just go back to normal and “presto chango!” You Will be normal again!”

As I said, they are nice ideas. But they are strangely distanced from the reality of the condition, so it seems a bit alienating to read these things.


-------------------------------------

Dearest Margy:  You said this so, so, so...very, very well.  I am STILL so very proud of you.

AnthonyO.
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Steve2017

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Reply with quote  #23 
Quote:
Originally Posted by Steve2017
Hi Margy, just seen the email and a note that you'd replied. that was 24 days ago I posted that previous message, it was about the time other posts displayed my website. I don't charge for this service/information, just glad to get my life back after such a dark place that T and H puts us all in. - it displays relaxation techniques which can possibly help.

I can only tell you about me - I had H bad for 2 years, and it came on gradually over a decade before that, I was just telling family and friends I have over sensitive hearing, just took it as normal for my age until the ear plugs and ear muffs days. I didn't even know it had a name H until just before I joined on here. I think stress and fear of it increases the problem, plays a big part in it, just my thoughts on it.

http://www.strengthinminds.co.uk


Hope you're doing a little better Margy - as I said before 'stress' plays a big part in these conditions - you must make your own minds up if that's part of it in your own particular case everyone here... Once I started to get control and lose the 'fear' after many years of H coming on bit by bit, I was able to improve day by day - this is not bragging its offering some hope to others who may just be starting out with this problem. I still have T but its under control since my recent several years of research into self healing energy and the power of the mind...

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HST

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Reply with quote  #24 
bs!the noises and the souned that make all the situation,fear and anexity came after!not before.not all of as can put earplugs for 10 years!,i think u where not an h person at all if you say u didnt knew for 10 years that u had h,its seemed to be fake,for me and for a lot of us.i seemed u dont anderstand at all in pain hyperacusis,it tizzing us its shocks us,its ruwing all our life,we are insulated for years,cant be nesr people,teenagers,little ones,anybody!,it make us cant even goes from the painful sounds immiditly like normsals hearing humen beings in some states of the pain..i think u fake us,dear.u do t seemed like us at all.
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Aplomado

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Reply with quote  #25 
Quote:
Originally Posted by HST
bs!the noises and the souned that make all the situation,fear and anexity came after!not before.


HST- I have found that fear and anxiety do badly aggravate pre-existing hyperacusis for me.  I used to think the idea was crazy, but I learned it is not.  After a long period of time with hyperacusis, I started to find that certain sounds would spike my pain and hyperacusis even if I, with my sensitive ears, did not even think they were loud!  I would hear a faint car horn in the distance- quieter than the things around me-and my stupid ears would start hurting!

I tried to figure out why this was happening...

This is the way I figure it went- I got hyperacusis, which made everything seem too loud.  Then, my brain decided that since everything was "too loud" it made my ears start hurting.  Horribly!  I did sound therapy which greatly reduced the "loudness sensations" and pain but I still remained very vulnerable to setbacks- even from things that weren't especially loud.... because my brain learned to associate certain sounds with pain... even in the absence of reprieved loudness.  Car horns and machinery noise triggered hyperacusis and pain relapses frequently.  It was a nightmare.

Since realizing this the effect of pain and fear on my hyperacusis, I have been able to deal with these sorts of noises much much better.  When I start to freak out about some stupid noise like a siren, and my ears would start hurting, I would calm, and have an alcoholic drink (reduces fear and pain).  My ears would stop hurting and there would be no setback in hyperacusis.  I no longer panic over loud noise incidents (well, not much!) because I know I can deal with them.

I do not know if your symptoms will respond the same way as mine.  Like I said, I doubt the fear causes the hyperacusis in the first place, but I do know it can make it a lot worse in me.  It is really weird.

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AnthonyO

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Reply with quote  #26 
But, as 'Aplomado' always says, "Your Results May Vary"®!
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Aplomado

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Reply with quote  #27 

Quote:
Originally Posted by AnthonyO
But, as 'Aplomado' always says, "Yours Results May Vary"®!


Yeah, I forgot that!  [wink]

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Lola808

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Reply with quote  #28 
Anyone look at ttts and the surgery for it? It has cured some people's hyperacusis. Thoughts
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jordanchis

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Reply with quote  #29 
Quote:
Originally Posted by Lola808
Anyone look at ttts and the surgery for it? It has cured some people's hyperacusis. Thoughts



who has been cured from H by doing the tts surgery?
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Lola808

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Reply with quote  #30 
These three women I'm talking to in Ttts network.
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jordanchis

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Reply with quote  #31 
Quote:
Originally Posted by Lola808
These three women I'm talking to in Ttts network.



Was their H brought on from noise trauma? If so I'd highly consider this. Id like to know their symptoms
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Lola808

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Reply with quote  #32 
Australian, now living in Abu Dhabi. I first had what I now know to be MEM in 2011. I was working in Afghanistan for the Army as a lawyer. The long days and stress and risk to my life took it's toll and after 5 months, I started having neurological pain, tingling, burning, all over my body, including face and what I now know to be trigeminal nerve area, and I also had a tremor in my head. No neurologist ever figured out what was wrong with me, they put it down to stress. I moved on with my life.

In 2017, really big construction started next to me. It was all day and night, I could always hear the sounds through our apartment walls, and I could feel vibrations. I began to obsess over whether the sounds and vibrations were healthy, downloaded a vibration meter app, wore earplugs at all times. I really didn't like the sounds next door. One night at midnight I confronted the workmen, it was a loud jackhammer and I screamed with rage I'd never felt for them to stop breaking the law by working at night. I came inside, and I felt the tremor in my head, and I knew it was exactly like what I felt the first time in Afghanistan. That was the start of my MEM.

It took me 1 whole year to even find out about MEM or TTTS. At first I thought I had anxiety nerve buzzing. I saw countless neurologists and had mediation, all who told me to work harder at relaxing. Nothing I did worked. One night on holiday in Ireland, I was for once sleeping without Aircon. In the quiet of night, I heard a flutter in my ear, like there was a butterfly in there. I had been to many ENT but they had all dismissed me, not even mentioning tinnitus, simply referring me to psychs or neurologists. Even though, like all of you, if I put my fingers in my ears, I knew I could stop the buzzing/vibration/tremor randomly in my head. That's what made me believe, this really isn't a neurological problem. This is my ears.

Over 2 years I saw so many ENT and neurologists. My buzzing was super super bad, I even felt it reverberate into my upper back and chest, but over months calmed down, but never went away. After I heard the flutter in Ireland I immediately googled and found TTTS and MEM, and knew that's exactly what I had. I believe my chronic stress level and fear of the construction sounds caused this. I then developed further symptoms - ear flinching to sound, bit of hyperacusis, intoleration to low rumbling sounds, clicks when I closed cupboards or finished a sentence, ear flinch and pulling when I spoke or listened to a mobile. The car made my head vibrate, pan frying, alarm bells, loud voices, pressure hoses, all made my vibration worse. I learnt it was noise induced. It was always worse first thing when I woke in the morning. Nothing helped but alcohol or sleep.

By Nov 17 I had tried Amytriptyline, Cymbalta, Pregabalin, physio, chiro, psych CBT, acupuncture, magnesiu, calciu, potassium, no diet-coke/coffee/alcohol/ hypnotherapy, MRI. CT scans, and finally CBD oil in Spain. Sometimes it vibrated so bad I felt my face was tingling. I couldn't sleep without alcohol, for a whole year. I couldn't have a conversation with friends. I began to question a noise or feeling was in my head, or the external world. Once, in madness, I smashed my head against the bathroom wall. When the CBD oil didn't work, I broke down, unsure if I wanted to live anymore. I decided the surgery was now the only option. Through this group, I found surgeons in the UK.

I live in the Middle East, but after writing to 3 top ENTs in Australia and them all saying they wouldn't do the surgery, I turned to the UK. I felt very afraid and lonely that I'd be stuck like this forever. My health insurance covered me 80% UK and not US. The first UK ENT, thought I had some other bizarre ENT problem. I spent a week of my life, and so much money, in Norwich, getting more MRI, CT, only to be told I didn't have an acoustic neuroma, and he was very dismissive of MEM, the surgery, and concluded my 'vibrations' were tinnitus. He was abrupt and basically kicked me out the ddoor when I questioned him about MEM. I was devastated. He knew from out first phone consult, I strongly believed I had MEM. The difficulty for me, had been my buzzing sometimes felt in ears, sometimes in the middle of my head.

A few months later, I found the courage. I went to a second more experienced Neurotologist in Cambridge UK, even though my long time tympanometry test came back negative (as it often will for stapedial myoclonus as the plug itself calms the stapedius), he put a stethoscope in my ear and could hear some of my clicking (a new symptom that had developed). He offered me surgery, and I was so so happy to have convinced someone to believe me. Within 2 weeks, I had surgery.

That was 7 weeks ago. 20 min before the surgery, I stuck my fingers in my ears, buzzing stops and I heard fluttering. When I take out my fingers - buzzing returns. I believe it's the same thing. 20 min after surgery - no more, and I've not had fluttering return. He lasered my stapedius away. He couldn't get to my tensor tympani easily, so he cut into my ear a bit and snipped it. The surgery was not much pain at all. Next to nothing. I believe it has worked. I only feel buzzing on the other ear, which has got a bit worse since the surgery, but is now calming. The surgery took a long time to heal. These last 7 weeks have been rough. Fluid in ear, blocked feeling, other ear vibrating, lots of clicks. pops, eardrum shaking, dizzy, bit of loud noise for one week only, all sorts of strange sensations. But, given time, they've all healed. My ear has finally opened and I feel like it's my normal ear. But no more fluttering. I can't say 100% it's a success because I still have centralised flutters, but I really believe they are coming from the non-surgery ear, because - when I put an earplug in the non-surgery ear, everything is calm, for hours. When I wake up in the mornings, my strong flutter is in my right (non-surgery) ear only. Since the surgery, all of my flinching, hyperacusis, clicking/blocking sensations at end of a sentence, listening to a phone cooking a fry pan - all has gone. All gone!!! There is no fluttering in that ear, even when I put my tongue up toward that ear (was always a way I could provoke the fluttering). I want to reiterate - I have absolutely no hyperacusis from the surgery. Infact, the surgery has completely healed any problems I had with noise sensitivity in that ear. Now the ear is unblocked, I know that to be true.

My surgery wasn't easy. I was a rare unlucky person that had some mild facial paralysis,less than 0.02% risk, but it healed within 3 weeks. I also had a minor eardrum perforation, and that healed within 2 weeks. I want to stress, the facial paralysis is so rare my surgeon had only seen it in 2 other cases in 23 years of surgery. It's often due to a latent facial nerve virus, and I believe due to my previoius neurological problem in Afghan, it could have well been this.

Am I glad I got the surgery? Yes I am. I don't know why the surgery is working for some and not others. I feel terrible sadness for those it doesn't. I'm not advocating people get surgery. I just made a personal choice to try because I couldn't take my horrific 24/7 buzzing anymore. I believe it was the stapedius muscle, but also TT flared up after a year, and now it's all gone.

0
jordanchis

Registered:
Posts: 11
Reply with quote  #33 
Quote:
Originally Posted by Lola808
Australian, now living in Abu Dhabi. I first had what I now know to be MEM in 2011. I was working in Afghanistan for the Army as a lawyer. The long days and stress and risk to my life took it's toll and after 5 months, I started having neurological pain, tingling, burning, all over my body, including face and what I now know to be trigeminal nerve area, and I also had a tremor in my head. No neurologist ever figured out what was wrong with me, they put it down to stress. I moved on with my life.

In 2017, really big construction started next to me. It was all day and night, I could always hear the sounds through our apartment walls, and I could feel vibrations. I began to obsess over whether the sounds and vibrations were healthy, downloaded a vibration meter app, wore earplugs at all times. I really didn't like the sounds next door. One night at midnight I confronted the workmen, it was a loud jackhammer and I screamed with rage I'd never felt for them to stop breaking the law by working at night. I came inside, and I felt the tremor in my head, and I knew it was exactly like what I felt the first time in Afghanistan. That was the start of my MEM.

It took me 1 whole year to even find out about MEM or TTTS. At first I thought I had anxiety nerve buzzing. I saw countless neurologists and had mediation, all who told me to work harder at relaxing. Nothing I did worked. One night on holiday in Ireland, I was for once sleeping without Aircon. In the quiet of night, I heard a flutter in my ear, like there was a butterfly in there. I had been to many ENT but they had all dismissed me, not even mentioning tinnitus, simply referring me to psychs or neurologists. Even though, like all of you, if I put my fingers in my ears, I knew I could stop the buzzing/vibration/tremor randomly in my head. That's what made me believe, this really isn't a neurological problem. This is my ears.

Over 2 years I saw so many ENT and neurologists. My buzzing was super super bad, I even felt it reverberate into my upper back and chest, but over months calmed down, but never went away. After I heard the flutter in Ireland I immediately googled and found TTTS and MEM, and knew that's exactly what I had. I believe my chronic stress level and fear of the construction sounds caused this. I then developed further symptoms - ear flinching to sound, bit of hyperacusis, intoleration to low rumbling sounds, clicks when I closed cupboards or finished a sentence, ear flinch and pulling when I spoke or listened to a mobile. The car made my head vibrate, pan frying, alarm bells, loud voices, pressure hoses, all made my vibration worse. I learnt it was noise induced. It was always worse first thing when I woke in the morning. Nothing helped but alcohol or sleep.

By Nov 17 I had tried Amytriptyline, Cymbalta, Pregabalin, physio, chiro, psych CBT, acupuncture, magnesiu, calciu, potassium, no diet-coke/coffee/alcohol/ hypnotherapy, MRI. CT scans, and finally CBD oil in Spain. Sometimes it vibrated so bad I felt my face was tingling. I couldn't sleep without alcohol, for a whole year. I couldn't have a conversation with friends. I began to question a noise or feeling was in my head, or the external world. Once, in madness, I smashed my head against the bathroom wall. When the CBD oil didn't work, I broke down, unsure if I wanted to live anymore. I decided the surgery was now the only option. Through this group, I found surgeons in the UK.

I live in the Middle East, but after writing to 3 top ENTs in Australia and them all saying they wouldn't do the surgery, I turned to the UK. I felt very afraid and lonely that I'd be stuck like this forever. My health insurance covered me 80% UK and not US. The first UK ENT, thought I had some other bizarre ENT problem. I spent a week of my life, and so much money, in Norwich, getting more MRI, CT, only to be told I didn't have an acoustic neuroma, and he was very dismissive of MEM, the surgery, and concluded my 'vibrations' were tinnitus. He was abrupt and basically kicked me out the ddoor when I questioned him about MEM. I was devastated. He knew from out first phone consult, I strongly believed I had MEM. The difficulty for me, had been my buzzing sometimes felt in ears, sometimes in the middle of my head.

A few months later, I found the courage. I went to a second more experienced Neurotologist in Cambridge UK, even though my long time tympanometry test came back negative (as it often will for stapedial myoclonus as the plug itself calms the stapedius), he put a stethoscope in my ear and could hear some of my clicking (a new symptom that had developed). He offered me surgery, and I was so so happy to have convinced someone to believe me. Within 2 weeks, I had surgery.

That was 7 weeks ago. 20 min before the surgery, I stuck my fingers in my ears, buzzing stops and I heard fluttering. When I take out my fingers - buzzing returns. I believe it's the same thing. 20 min after surgery - no more, and I've not had fluttering return. He lasered my stapedius away. He couldn't get to my tensor tympani easily, so he cut into my ear a bit and snipped it. The surgery was not much pain at all. Next to nothing. I believe it has worked. I only feel buzzing on the other ear, which has got a bit worse since the surgery, but is now calming. The surgery took a long time to heal. These last 7 weeks have been rough. Fluid in ear, blocked feeling, other ear vibrating, lots of clicks. pops, eardrum shaking, dizzy, bit of loud noise for one week only, all sorts of strange sensations. But, given time, they've all healed. My ear has finally opened and I feel like it's my normal ear. But no more fluttering. I can't say 100% it's a success because I still have centralised flutters, but I really believe they are coming from the non-surgery ear, because - when I put an earplug in the non-surgery ear, everything is calm, for hours. When I wake up in the mornings, my strong flutter is in my right (non-surgery) ear only. Since the surgery, all of my flinching, hyperacusis, clicking/blocking sensations at end of a sentence, listening to a phone cooking a fry pan - all has gone. All gone!!! There is no fluttering in that ear, even when I put my tongue up toward that ear (was always a way I could provoke the fluttering). I want to reiterate - I have absolutely no hyperacusis from the surgery. Infact, the surgery has completely healed any problems I had with noise sensitivity in that ear. Now the ear is unblocked, I know that to be true.

My surgery wasn't easy. I was a rare unlucky person that had some mild facial paralysis,less than 0.02% risk, but it healed within 3 weeks. I also had a minor eardrum perforation, and that healed within 2 weeks. I want to stress, the facial paralysis is so rare my surgeon had only seen it in 2 other cases in 23 years of surgery. It's often due to a latent facial nerve virus, and I believe due to my previoius neurological problem in Afghan, it could have well been this.

Am I glad I got the surgery? Yes I am. I don't know why the surgery is working for some and not others. I feel terrible sadness for those it doesn't. I'm not advocating people get surgery. I just made a personal choice to try because I couldn't take my horrific 24/7 buzzing anymore. I believe it was the stapedius muscle, but also TT flared up after a year, and now it's all gone.

0
jordanchis

Registered:
Posts: 11
Reply with quote  #34 
Quote:
Originally Posted by Lola808
Australian, now living in Abu Dhabi. I first had what I now know to be MEM in 2011. I was working in Afghanistan for the Army as a lawyer. The long days and stress and risk to my life took it's toll and after 5 months, I started having neurological pain, tingling, burning, all over my body, including face and what I now know to be trigeminal nerve area, and I also had a tremor in my head. No neurologist ever figured out what was wrong with me, they put it down to stress. I moved on with my life.

In 2017, really big construction started next to me. It was all day and night, I could always hear the sounds through our apartment walls, and I could feel vibrations. I began to obsess over whether the sounds and vibrations were healthy, downloaded a vibration meter app, wore earplugs at all times. I really didn't like the sounds next door. One night at midnight I confronted the workmen, it was a loud jackhammer and I screamed with rage I'd never felt for them to stop breaking the law by working at night. I came inside, and I felt the tremor in my head, and I knew it was exactly like what I felt the first time in Afghanistan. That was the start of my MEM.

It took me 1 whole year to even find out about MEM or TTTS. At first I thought I had anxiety nerve buzzing. I saw countless neurologists and had mediation, all who told me to work harder at relaxing. Nothing I did worked. One night on holiday in Ireland, I was for once sleeping without Aircon. In the quiet of night, I heard a flutter in my ear, like there was a butterfly in there. I had been to many ENT but they had all dismissed me, not even mentioning tinnitus, simply referring me to psychs or neurologists. Even though, like all of you, if I put my fingers in my ears, I knew I could stop the buzzing/vibration/tremor randomly in my head. That's what made me believe, this really isn't a neurological problem. This is my ears.

Over 2 years I saw so many ENT and neurologists. My buzzing was super super bad, I even felt it reverberate into my upper back and chest, but over months calmed down, but never went away. After I heard the flutter in Ireland I immediately googled and found TTTS and MEM, and knew that's exactly what I had. I believe my chronic stress level and fear of the construction sounds caused this. I then developed further symptoms - ear flinching to sound, bit of hyperacusis, intoleration to low rumbling sounds, clicks when I closed cupboards or finished a sentence, ear flinch and pulling when I spoke or listened to a mobile. The car made my head vibrate, pan frying, alarm bells, loud voices, pressure hoses, all made my vibration worse. I learnt it was noise induced. It was always worse first thing when I woke in the morning. Nothing helped but alcohol or sleep.

By Nov 17 I had tried Amytriptyline, Cymbalta, Pregabalin, physio, chiro, psych CBT, acupuncture, magnesiu, calciu, potassium, no diet-coke/coffee/alcohol/ hypnotherapy, MRI. CT scans, and finally CBD oil in Spain. Sometimes it vibrated so bad I felt my face was tingling. I couldn't sleep without alcohol, for a whole year. I couldn't have a conversation with friends. I began to question a noise or feeling was in my head, or the external world. Once, in madness, I smashed my head against the bathroom wall. When the CBD oil didn't work, I broke down, unsure if I wanted to live anymore. I decided the surgery was now the only option. Through this group, I found surgeons in the UK.

I live in the Middle East, but after writing to 3 top ENTs in Australia and them all saying they wouldn't do the surgery, I turned to the UK. I felt very afraid and lonely that I'd be stuck like this forever. My health insurance covered me 80% UK and not US. The first UK ENT, thought I had some other bizarre ENT problem. I spent a week of my life, and so much money, in Norwich, getting more MRI, CT, only to be told I didn't have an acoustic neuroma, and he was very dismissive of MEM, the surgery, and concluded my 'vibrations' were tinnitus. He was abrupt and basically kicked me out the ddoor when I questioned him about MEM. I was devastated. He knew from out first phone consult, I strongly believed I had MEM. The difficulty for me, had been my buzzing sometimes felt in ears, sometimes in the middle of my head.

A few months later, I found the courage. I went to a second more experienced Neurotologist in Cambridge UK, even though my long time tympanometry test came back negative (as it often will for stapedial myoclonus as the plug itself calms the stapedius), he put a stethoscope in my ear and could hear some of my clicking (a new symptom that had developed). He offered me surgery, and I was so so happy to have convinced someone to believe me. Within 2 weeks, I had surgery.

That was 7 weeks ago. 20 min before the surgery, I stuck my fingers in my ears, buzzing stops and I heard fluttering. When I take out my fingers - buzzing returns. I believe it's the same thing. 20 min after surgery - no more, and I've not had fluttering return. He lasered my stapedius away. He couldn't get to my tensor tympani easily, so he cut into my ear a bit and snipped it. The surgery was not much pain at all. Next to nothing. I believe it has worked. I only feel buzzing on the other ear, which has got a bit worse since the surgery, but is now calming. The surgery took a long time to heal. These last 7 weeks have been rough. Fluid in ear, blocked feeling, other ear vibrating, lots of clicks. pops, eardrum shaking, dizzy, bit of loud noise for one week only, all sorts of strange sensations. But, given time, they've all healed. My ear has finally opened and I feel like it's my normal ear. But no more fluttering. I can't say 100% it's a success because I still have centralised flutters, but I really believe they are coming from the non-surgery ear, because - when I put an earplug in the non-surgery ear, everything is calm, for hours. When I wake up in the mornings, my strong flutter is in my right (non-surgery) ear only. Since the surgery, all of my flinching, hyperacusis, clicking/blocking sensations at end of a sentence, listening to a phone cooking a fry pan - all has gone. All gone!!! There is no fluttering in that ear, even when I put my tongue up toward that ear (was always a way I could provoke the fluttering). I want to reiterate - I have absolutely no hyperacusis from the surgery. Infact, the surgery has completely healed any problems I had with noise sensitivity in that ear. Now the ear is unblocked, I know that to be true.

My surgery wasn't easy. I was a rare unlucky person that had some mild facial paralysis,less than 0.02% risk, but it healed within 3 weeks. I also had a minor eardrum perforation, and that healed within 2 weeks. I want to stress, the facial paralysis is so rare my surgeon had only seen it in 2 other cases in 23 years of surgery. It's often due to a latent facial nerve virus, and I believe due to my previoius neurological problem in Afghan, it could have well been this.

Am I glad I got the surgery? Yes I am. I don't know why the surgery is working for some and not others. I feel terrible sadness for those it doesn't. I'm not advocating people get surgery. I just made a personal choice to try because I couldn't take my horrific 24/7 buzzing anymore. I believe it was the stapedius muscle, but also TT flared up after a year, and now it's all gone.




Hmm I'm sure mine is from noise trauma so I don't know if this surgery would help
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Lola808

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Reply with quote  #35 
Do you have the hum of ttts in your ears?
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