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kat73

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Reply with quote  #1 

This is a big cry for help. I don´t know how too get a grip of myself and that my hearing and ear problems put me through...

 

My hole family are suffering now because of me, this Easter was totally ruined by me...or should i said my because of my ears...

 

My tinnitus is in a very bad period, its very loud and there are so many noises that i´m going crazy. And as that´s not enough my damned left ear has that extra "humming" sound. I don´t know if there is a new tinnitus-sound or if its because of my problems with TTS or Myoclonus.

 

The sound usually appear after driving car or vaccum but now its inside my head the hole time more or less. When lying down its raising.

Today there is bright and sunny spring day here in Sweden.

My neighbors are killing my sore ears...With motorcycles and other machines running...My right ear hurts so much and its feels like its going too explode any second. So u might understand that's really is painful. Its hurting in the ear, through my teeth and shoulder. Only on the right side for now.

I experience fullness, dizziness and some hearing loss....And my own and other voices seems to echo in my head...its really scary.

 

This weekend i have had many thought of just giving up...I cant see anything positive with the future any longer.

I had this bad tinnitus and hyperacusis for many years, the last 2 the left ear started to sound worse and now this that i think is muscular?!.

 

Why??!

 

I cant get any help from doctors in Sweden, they don't recognize my symptoms. My family does not deserve this. I don't want to die but like this i cant live either...I am so afraid of any sounds, more than ever before. Went to an hairdresser, she put on the hairdryer when i wasn´t ready...and i am afraid that the sound harmed my  ears more. Any noise my children makes i just freak...What shall i do?!.

 

Thanks for reading.

 

 


__________________
I´m 32 y old turning 33 this summer.Mother of twins, Nikki-Lee & Norton they´re 4,5 y old.
I suffer from severe tinnitus and hyperacusis since July 2002 after an rockconcert.
In october 2005 i got an otitis in both ears & more trouble came after this. I get no answers from the ENT doctors so i had too search the web for my own diagnose.
I believe that i also have the Tensor tympani Syndrome, myoclonus & Eustachian Tube Dysf.
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lib

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Reply with quote  #2 

kat, do what ever it takes....go where ever you can for help....even here. this is your life.

the noises wont damage your ears just bug you, i am a hairdresser and the noise bothered me horrible, but not now, and no damage.

hang in there,

lib

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Henk

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Reply with quote  #3 

Hej Kat,

 

I had and sometimes still have those thoughts (like: if this is going to last longer than ...), like many will have had in this terrible situation.

 

Living like a hermit. Last XMas and New Year's Eve I couldn't join the celebrities, I hardly saw my relatives & friends. They also don't know what do. Offered help, but what?

 

End of January I also had a few nights & days with really enormous pain, also towards the neck etc., almost exactly like you describe. (I had no echoes.) Luckily it got less, and later on I got antibiotics - though the medicine wasn't convinced it was an infection - but I don't understand the coincidence.

 

Maybe you have an infection. Or maybe you overexposed your ears by this hairdresser, because you are very sensitive now? When my pain was increasing so much in January I'm sure I didn't have an overexposure just before that because I was very careful - of course too careful, but let's call it very 'predictive'. So the reaction was very late or was it really an infection or was it part of the healing or what?

 

So it could very well be that your severe pain will not last very long. Must be.

 

I'm not doing well either.

The keyword is "hope". And people get "cured" from this, like Dan and Lynn.

It's "just" a matter of desensitisation, of getting used to sound again. And just time - I think.

It's easier said than done, though.

 

Regards,

Henk

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janepm

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Reply with quote  #4 
Kat: I agree, get some help now, don't put it off, I put it off for 9 years and tried to do it myself. I am now working, in my case, with Susan Gold from the University of Maryland, USA, and she is wonderful.

There should be a list of those who have trained in TRT, and most especially the P. Jastreboff model. Either the American Tinnitus Association in Oregon, USA can provide that to you online or through email or phone (they have links of folks you can write anytime and they can email you material, you don't have to be a member) or you can see if the Hyperacusis Board has an updated list, I am pretty sure they do.

Every Practitioner works differently and so it helps to kind of figure out what you need and then get a match.

In the meantime, be good to yourself. Remind yourself and your family that right now, in this point in time, you are different and this won't always be the case. And you are right, most people, sadly, do not know about this, and especially many medical practitioners.

You are among friends, we have been there, I have been there, I glide through many of my days not thinking of anything else but BUT now that I am working with someone who knows what she is doing with my particular case, the hope and joy that I feel knowing that I am getting help is alleviating a lot of it.

I hope that helps.

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Jane
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kat73

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Reply with quote  #5 

Hi again!

 

Thanks for answers. I am not sure what it is i suffer from...I have not been able to get any diagnoses from my ENT:s. Well they think all of this is only my stress and tension...But i dont buy that anymore.

 

I have my tinnitus and soundsensivity after the concert and my tinnitus has gradually got worse on the left side. Its like getting tinnitus again...i had to get through all the stages of a crisis again. Do you understand what im trying to say?!.

 

And as i struggling with that this new things starting too happen slowly..somewhere in the beginning of October-05.

It Starting with more soundsensivity, durring/vibrating eardrums and the pain. Got antibiotics for infections that i was walking around dont knowing of. After this my problems started to go away...not totally but almost.

 

Than it started to slowly come back.

And jihaa...a new horrible sound appears aswell. And thats whats eating me now...this new sound.

 

.Can anybody relate to this humming sound...?! Its like an insect or a cellphone with the vibratingmode on

 

At the beginning it only started after exposed too loud noise or vibrating and stopped after a while...Now its there all the time.

Sometimes loud and clear sometimes hidden behind my usual tinnitus.

 

I havent been near any loud noise but the terrible sound are still there, im afraid of going to bed because when i lay down its getting worse.

 

Can this new "extra.sound" come from the tensor t? or some other muscle thats in tension??.

 

And why do i feel this pain because of a car passes outside...its so weird...

 

Its not an infection, i have in the last couple of months spent my time and money consulting several doctors, (2 ENT:s) and my ears are fine and the eardrum is reacting as it should. They tested by blowing in air someway...

 

I am not sure i understand what you mean by TRT?. I got this TRT-things in my ears, they makes a white noise so it shall distract me from my tinnitus. I had them over a year and still no success...I have an appointment in a month with an tinnitus-phsycologist...we are going to discuss CBT. But i dont think CBT is the solution now. Theres definitely something wrong with my ears...I cant bear this anymore. This pain and the new sound that seems to come to stay...I sure didnt need it, i got tinnitus in my hole head already.

 

I dont i gonna make it this time...My ears (tinnitus) had been my biggest enemy for 3,5 y. now...and they have won. Sound quite funny when putting it like that but its what im feeling right now.

 

/Kat.

 

 


__________________
I´m 32 y old turning 33 this summer.Mother of twins, Nikki-Lee & Norton they´re 4,5 y old.
I suffer from severe tinnitus and hyperacusis since July 2002 after an rockconcert.
In october 2005 i got an otitis in both ears & more trouble came after this. I get no answers from the ENT doctors so i had too search the web for my own diagnose.
I believe that i also have the Tensor tympani Syndrome, myoclonus & Eustachian Tube Dysf.
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lib

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Reply with quote  #6 

its like a vibration drumroll....very irritating,....muscle spasm likely.

 

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bobm

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Reply with quote  #7 

i think the devices you are using with white noise generation,are called "MASKERS"

they typically are used "only" to drown out the ringing in the ears.

 

where as ,the trt devices are white noise  generators also ,but are brought  slowly up in increments. that way your ears are slowly building up tolerance to sound.this way they will not get use to one level of sound.

 

the maskers have been around for some time now and from what i have read, they really do not compare to the trt process.especially when it comes to hyperacusis.

 

i think many of us have had your feelings of desperation.not wanting to go on etc....actually there have been some highly intense conversations on this board about this same subject.you are not alone !!!!!

 

do continue to write about your feelings,it will help to get it out and get responses that may help.

 

stay well


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stay well bobm
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Matias

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Reply with quote  #8 

Have you used ear protection in any of the situations you mention?

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janepm

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Reply with quote  #9 
Nine years ago, when I came home from a trip to Long Island, New York, USA, a malfunctioning alarm outside our hotel room did it for me. I came home with a humming sound where it was at first hearing every single electrical thing going on outside or inside, this went on for months, then it settled into being sensitive to all sounds. It took me nine months to put a name to this, hang in there, I agree with my fellow friends on the Board, keep on digging but while you do this, be good to yourself, do what you have to do to function, engage your family in some research so it doesn't fall all on you. You will get through this, I promise!
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Jane
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Henk

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Reply with quote  #10 

Hi Kat,

 

Lynn posted the link http://www.tinnitus.org/home/frame/Tensor%20tympani%20syndrome_Klochoff.pdf concerning TTS in her thread "over sensitivity 7-8-9" (http://www.websitetoolbox.com/tool/post/danmalcore/vpost?id=578178).
TTS described by Ingmar Klochoff MD Uppsala Sweden, in 1979!
It's not likely he's still in function but there might be some specialism or leads in Uppsala.

 

Regards,
Henk

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kat73

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Reply with quote  #11 

Lib wrote:

 

its like a vibration drumroll....very irritating,....muscle spasm likely.

 

 


Hi!

Yes its often like a vibrating sound, like an cellphone with the vibrating mode. That is the nearest comparing i can find.

 

This is a sound that has come as an "extra-sound" over my severe tinnitus.

 

As it started it appeared only when i had drove my car or something like that.. It went away and after a month it came back...went away and now its back again only difference is that now the sound is in my head more or less all the time. Couldn't´t sleep last night thou its seems too get worse when i lay down.

 

Than is that insect buzz that i experience little then and now from touching my ear or head or from a outer noise...but that thing i can live with.

 

My biggest worries now is that my tinnitus is so bad, the new sound in the left ear the pain and of-course that it often feels like my hearing is gradually disappear. I sometimes lose my hole hearing for a few seconds, often a high tone appears and go away...Do u recognize all this??

 

I also get the feeling of hearing and feel my heartbeat in ears and head...And now after i come home after a car drive my hole head is "Shaking inside" and that is like i hearing everything in "mono"...

 

Oh...my goodness what is this...its so many symptoms...I understand that friends and family thinks I'm loosing it totally...

 

I´m very stressed and tensed, i know that certainly makes all worse but how to relax...?!. I'm at home with my children full time, i got no rest at all. And my tinnitus is keeping me "running" all the time...After so many years and i cant just accept it as a part of me. And after it started to get worse in the left ear that hardly bother me from the beginning...its even harder to accept and move forward.

 

Sorry to lay all this on you but i just have to write it  all off me...My family can´t take it all...They are vary sick of listening about all my tinnitus and hyperacusis...And this new things, its hard to explain it too them. I mean its hard enough to tell a ENT or even to you. Of-course its harder here because of the language but besides that aspect u seems too understand me and my problems.

I don´t think i myself could ever get a grip of a person if he or she should told me about this a year ago...even than i suffered from tinnitus and Sandinista for so long...

 

What i cant find out is why i get this?.

 

//Kat.

 

 


__________________
I´m 32 y old turning 33 this summer.Mother of twins, Nikki-Lee & Norton they´re 4,5 y old.
I suffer from severe tinnitus and hyperacusis since July 2002 after an rockconcert.
In october 2005 i got an otitis in both ears & more trouble came after this. I get no answers from the ENT doctors so i had too search the web for my own diagnose.
I believe that i also have the Tensor tympani Syndrome, myoclonus & Eustachian Tube Dysf.
0
lib

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Reply with quote  #12 

hi kat,

yes i do recognise it all, i pm you i think last week on the hearing dropping out. i have had this as well, dont panic. the tension in the middle ear will cause you to feel as if you cant hear as well.

check your private messages.

lib

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LynnMcLaren

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Reply with quote  #13 

Hi Kat, ((( Sad )))

 

I'm so sorry you are going thru this at this time.. I had the buzzing insect for months in my ear and the heartbeat as well. That finally went away and has never came back..

 

I can't remember ever haveing humming yet I had alot of different tinnitus sounds at one time..

 

Sometimes I've found over the years on this board we have own way of describeing what a sound sounds like to us..

 

But I also had the symptom of my ears cutting in and out or on and off and when you wrote about that happening with high tones.. That makes sense to me.

 

It's like the ear doesn't want to hear them .. so it cuts off. Like to static sounds ect ....

 

But I did overcome that feature and my hearing doesn't cut on and off anymore.. I had the vibrational rumbling of sounds real bad at one time and the car was the worst.

 

But that went away for me as well. Alot cleared up over time for me and I worked really hard at it too. I'm hopeing the same for you. Instead of the sound device you are useing now..

 

Why don't you try the network pink noise Cd.. Expecially if there are no TRT provider's around in your part of the world.. Or you can't afford it or whatever the reason may be..

 

It's there for us " the network pink noise Cd " and we are lucky for that..

 

I didn't go the TRT way. I'm not saying it's not a good way to go it is. I'm just saying that people have improved their lives thru other means and I'm one of them..

 

I'm here not to distract anyone from going the TRT way. I'm here to let others know. If for some reason they can't do that or go that way nor do they have a good TRT provider where they live..

 

Or there is a long wait to be seen by one.................

 

They are not just doomed as there is no help avaliable.

 

The Network Pink Noise Cd if done right being consistent in the long run. Can work in the long run.. Real well.

 

You should give it a chance.. Why not ????

 


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Take Care

Lynn
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olms

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Reply with quote  #14 
Kat:

Sorry to hear of your troubles. I've been through some of those, in the years when there was no hyperacusis network, only ear doctors who would charge me $50 to say, "You've got what!!!!!"

When you said you got dejected when your doctor didn't know what you had, you said you went to the Internet to try and find some help, which shows some initiative.

I had chest pains for 15 years and went to about 4 or 5 heart doctors and none of them knew what it was. I finally went to the Internet and looked under chest pain and one site said it's something like pulled chest muscles from over exertion. It said to take 4 Aleve every 5 hours, and I did that for two doses, and it went away and hasn't been back in 2 or more years. (The same works for my severe back pain.)

So I applaud you for going to the Internet instead of cursing the doctors like I used to do.

This is a tough problem, but a good attitude can help, which I learned late.

One thing that helps is certain health foods that my wife found in a book under ear problems, or something of that nature.

The four I take are:

1. zinc
2. manganese(chelated)
3. magnesium citrate
4. B-12 Dots (which you put under your tongue, not swallow,
so they don't go into the stomach)

I take 1 of those for breakfast, 1 for lunch and 1 for supper or late snack. Sometime I take a 4th one in the same day at some time.

Reason I take all four is in case any of them do any good, I'll be taking it.

But if you only want to try one, say twice a day, you might see if it is helping. If you ever get two of those items, you might want to try one of them for breakfast, and one for supper, which doubles your chances of one of them working, and if both work, you'll be getting double benefits.

I can tell it helps me because without them, if I try to walk on a road near me which has a car every 1 or 2 minutes, some going a little fast, I have to hold me ears and I really don't want to walk on that road.

But if I'm taking some of those pills, I feel more confident that I can walk that road. So, I know that it helps.

Those pills kind of tighten up my ears and help me tolerate sound better. I think one pill says it coats the nerve endings.

Another thing which helps me is moist heating pads. I put one on each ear by laying on my side, with a 2nd one on the top ear with a little bit of weight on it to push the heat down into my ear.

Heat opens the blood vessels which increases circulation which increases oxygen and nutrients to the injured area. That's why people put heat on their ankles and backs, etc., wherever they hurt.

Let us know how it's going.

Tom
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kadida1

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Reply with quote  #15 

Kat,

     I can't believe it!! I have been on several meassage boards for over a year now and you are the first person who has all the same sounds I have,except, I also have a patulous eustachion tube and hear myself talk and breath. Lets talk.

 

kadida1


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Teresea
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Reply with quote  #16 

kat73:  Unfortunately, the results with which you have met up, in search for professional help, have been repeatedly noted here on this board.  This happens for people living everywhere.  Hyperacusis is not well known – to say the least – and more often than not, it can be a rough road to finding help.

 

So with this statement, and as awkward as it may appear – the knowing you are not alone, may hopefully give you a little support, and the courage to keep searching about.   I do remember, that finally having someone diagnose me – their telling me ‘officially’ that I had H & T - was the most wonderful gift.

 

Hyperacusis is definitely recognized in Sweden – but as in North America, you have to find the right doctor/specialist who ‘will’ recognize it.  Whatever browser you use – type in “hyperakusis Sweden” …….. (make sure you do not copy the western “c” , and a tremendous lot will appear.    Follow up on the links.  It was two specialists in Europe, working together with another in NA, that got me on the right track.  Hang in there !

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lib

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Reply with quote  #17 

kadida,

 i have myoclonus, i am wondering what symptoms of patulous you have and if you have considered myoclonus of the e tube causing patulous like symptoms.

lib

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kadida1

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Reply with quote  #18 

Lib,

my sysmptoms of pet are, I hear myself breath and talk. I have seen a Dr. who looked into my ears and said he could see the eardrum move whenever I breath. I have a lot of other sounds going on also. I hear the sound of the ocean roaring, I used to hear a vibrating sound, but that has turned into the sound of thunder rolling throughout my head. Another way to decribe it is as if a bowling ball is being rolled down an bowling alley. Whenever I bend over I hear the rush of blood in my ear and my heart beating. I am not sure what all these sounds are from maybe myoclonus? But I am sure I have pet. I have read many of your post on all the other boards and you are very helpful to alot of people.(I also have posted many times on these boards) I would like to continue talking to you on a regular basis.

After reading alot of your posts I contacted Dr. Poe. I have an appt. to see him Aug 29. I live in Michigan and not looking forward to the 2 day drive. If you go to the ez baords under tinnitus support look for my post " I can't take it any more" that will better descibe whats been going on.

Please stay in contact.

kadida1


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Teresea
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Leah

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Reply with quote  #19 
I know I keep saying the same thing but seriously though if you pick up a white noise machine at Zellers or PharmaPlus for $38.00, you will feel so relieved.

Just google White Noise, those little machines that play a variety of soothing natural sounds!  Your ears and your central nervous system will thank-you!


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Every diagnosis is a misdiagnosis!
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kat73

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Reply with quote  #20 

Hi Leah!

 

I already got this white-noise devices in my ears for more than a year and i also have an soundgenerator called Sound oasis Ultra II.

The last one helping me fall asleep at night.

 

//kat.


__________________
I´m 32 y old turning 33 this summer.Mother of twins, Nikki-Lee & Norton they´re 4,5 y old.
I suffer from severe tinnitus and hyperacusis since July 2002 after an rockconcert.
In october 2005 i got an otitis in both ears & more trouble came after this. I get no answers from the ENT doctors so i had too search the web for my own diagnose.
I believe that i also have the Tensor tympani Syndrome, myoclonus & Eustachian Tube Dysf.
0
lib

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Posts: 272
Reply with quote  #21 

kadida,

 i could not find that post on the tsmb....can you post a link?

i and another myo patient thought we had p e t for sure too....but it turns out we did not....im very interested in your story as it sounds similar...

feel free to email me if you would like.

dr poe rocks!!!! he is the one who finally figured me out.

lib

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