This message board is available to anyone whose life has been adversely affected by sound (i.e. hyperacusis, tinnitus, recruitment, sound sensitivity, etc.)
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lib

Registered: 04/27/05
Posts: 272
Reply with quote  #51 

syd,

not sure, it could be, but can you describe the popping in and out eardrum a little better......i know these symptoms are hard to describe....

lib

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sydny

Registered: 02/24/06
Posts: 4
Reply with quote  #52 

Thanks Lib for replying.

 

This is what I experience after exposure to sound.music (own or iPod) for prolonged period. Prolonged period = ~1-2 hrs.

 

Feeling that something is stuffed. The feeling grows with the duration I am exposed to. Theres no peak/worse moment as such but I generally stop playing or listening. The feeling is more like a numb pain and fullness in ear immediately after landing.

 

Popping in and out: Since I feel that ear is closed, I start opening/closing my mouth/jaw to relieve that fullness. This results in clicking sounds.

 

Pain: A very light pain which dissipates slowly.

 

Aggravated Hyperacusis: This normally subsides the following day.

 

Stiffness around neck and back of the head. (left side)

--

 

I have had MRI and ear exam and the ENT specialist who is quite popular around greenwich area has told me that theres no problem and evrything seems normal. He believes I had some viral infection which damaged my nerve and that is the reason behind my hearing loss. For Hyperacusis , he hasnt' yet told anything - guess its just a symptom!

 

 

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Carol

Registered: 03/21/06
Posts: 1
Reply with quote  #53 

 Hi, my name is Carol and I'm new to the board. I too have been suffering from what I think is Stapedial myoclonus.  A neurologist in Kansas City diagnosed me with palatal myoclonus, sent me to an ENT for Botox injections, but the ent said he could not see any signs of Palatal myoclonus.  Therefore, no injection.

As I explained to the neurologist, I felt this was more originating from my ear.  I have the crackle noises, the hearing my own voice, eustachian tube dysfunction, the crackling with certain noise stimuli (water, clanging pots or dishes,loud noises) and the machine gun fire in my ear on occasion.  Mostly, I can just feel my ear thumping or spasming.

 

I have been reading others posts on the board and what I have not read is if anyone suffers with pain in the ear with this, or any kind of pain in the facial area.  I have significant pain with mine, so much that it has affected my facial nerves and the masseter muscles.  Almost like a continuous bruxing(clenching).  They have ruled out TMD, saying it is muscle related.  Does any one else have this?

 

I see Paul's doctor is in Arkansas which is probably closest to me; I'm in Kansas. Anyone know of any good doctors near me who would be willing to take on a complex case? 

 

I have tried various meds for this ( seizure meds, all of which I have bad reactions to) naproxen for the pain, and xanax to help calm the spasms. These work for a while, or minimal at best.  I do have another medical issue which is possible Sjogren's disease(autoimmune) but they again just suspect and are treating me with plaquenil.

 

I just wish I could get to a knowledgeable doctor.  I suffered from West Nile virus two years ago and they think maybe this may have set it off.  Some type of nerve damage from the virus.  But all I really get is alot of I don't know, I'm not sure, or just plain what do you want me to do about it.  No real help.

 

Anyway, thanks for letting me vent.

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lib

Registered: 04/27/05
Posts: 272
Reply with quote  #54 

hi syd,

i have been out of town, sorry its been so long. i can not say for sure but it could be muscular.  the fact the hyperacusis goes away is a clue, the stapedial could be over active when you are more sensitive.

lib

 

carol,

i wrote to you, were you on the myoclonus board at one time as well?

lib

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jambo

Registered: 01/11/06
Posts: 31
Reply with quote  #55 
Carol, I've been experiencing some pain with this condition as well. The pain happens if sudden and loud (but probably not so loud for a normal ear) sounds are heard, and probably because the muscles in the ear are contracting so hard. The pain lasts less than a second, and feels like someone is sticking a needle through your ear. I've heard that when people go to for example rock concerts, and they get pain in their ears because the sound is so loud, it is the contraction of their ear muscles they are actually feeling. Obviously the pain is not meant to be felt at such low sound levels as in my case.
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jesusfreak

Registered: 03/24/06
Posts: 5
Reply with quote  #56 

Hi,

 

Glad to have found this thread.  I think I finally found what is causing all this fullness and fluttering in my ear.  Does anybody else here have TMJ?  Could it contribute to this myoclonus problem?

 

I know my ear fullness started with a really bad ear infection and a pretty bad case of hyperacusis caused by the ssri celexa (freak reaction).  Since, my hyperacusis has pretty much resolved but still have the fullness and ear fluttering.

 

I notice the ear fullness is worse about an hour after I eat.  That's why I was wondering if it's in any way connected to TMJ?  My ear fluttering is worse after loud noises.  People talking loud, running water, even the keyboard sometimes.

 

To complicate matters, I'm also bipolar so I take zoloft, trileptal and klonopin for sleep.

 

Bipolar is a under control but still have ear sensitivity, fullness and fluttering.  So how exactly do I get the doctors to believe I have this condition( and that I'm not just a nut) and get the surgery for it?

 

Any help is greatly appreciated!

 

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lib

Registered: 04/27/05
Posts: 272
Reply with quote  #57 

find a good neurotoligist to start with.

where are you located?

lib

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jesusfreak

Registered: 03/24/06
Posts: 5
Reply with quote  #58 

Already got one. He seems like a good one too!

 

Just had an MRI today!

Damn them things are LOUD!  I had ear plugs and headphones on and my ears still hurt tonight!

 

Hopefully I'll find out what's going on inside my head

 

Thanks for the reply!

 

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jesusfreak

Registered: 03/24/06
Posts: 5
Reply with quote  #59 

Opps.  Forgot.

I'm in Kansas City, KS.

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lib

Registered: 04/27/05
Posts: 272
Reply with quote  #60 

good! who is your dr out there?

see what the mri says and then bring a list of options with you to your next appt.

lib

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Gibson

Registered: 05/16/06
Posts: 2
Reply with quote  #61 

Hi Everyone,

 

I'm glad I stumbled onto this discussion. My left ear is the "blown speaker" as some of you have referred to it. My problem began back in high school when I was playing trumpet in a 30 piece jazz band. I wasn't quite sure if it was permanent but I could get rid of the "static ear" ,as I call it, by holding my nose shut and creating pressure on my eardrum. This is also called a valsalva. Anyway, I only encountered the problem when the volume of noise was loud enough for an extended period of time. Ie. a large group of people talking in a room for say 30 minutes. The valsalva used to temporarily get rid of the static which made me believe that maybe my eardrum had a tear or something of that nature. My second theory was that the ear would just get overstressed by the volume and shutoff by converting the loud sounds to scratchy static. I am still a musician by hobby, but I am an Air force Pilot by profession which makes this topic a little difficult. I have never had static ear while flying or in any of my job related duties. However, I do get it in the movies or large crowd settings. I am skeptical about talking to the flight doc about my issue because this is my career and I can't afford to be grounded. On the other hand, I have had this for over 12 years and the volume level where the ear turns to static is gradually getting lower....see the problem. I get an annual physical and hearing test (required) and my hearing is excellent with a perfect baseline. It's a good thing they test to see how soft you can hear not how loud! Anyway, I don't have any other problems just the scratchy hearing in the left ear when exposed to certain volume levels for an extended period of time. It sounds like cutting the TT and the S are the best option I just have to find out what career penalties it may bring.

 

Thank you to all who have shared your knowledge and at least shed some light on what I may be dealing with.

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jambo

Registered: 01/11/06
Posts: 31
Reply with quote  #62 

Hi Gibson,

this sounds like exactly what I have. I too only had the "static" crackling when exposed to very loud sound levels at prolonged periods of time. But at some point, it got worse and it would suddenly take less and less exposure before the crackling appeared. The sound level at which it occures seems to be the same though, although it is kind of hard to tell. But anyway, as it progressed I got other symptoms as well, as I've written in the posts earlier in this thread. I do believe it is the stapedial, the tensor tympani, or both, which are causing this. By the way, I also used to play the tuba in a brass band, which was the first place I noticed I had this. But after I quit playing I didn't notice the symptoms for several years (even though I was exposed to very loud music, movies and whatnot), untill they reappeared again. Surgery seems to be the only permanent solution.

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lib

Registered: 04/27/05
Posts: 272
Reply with quote  #63 

gibson and jambo,

yes to all.....i used to use the blown speaker description a lot.

i hope you both find relief, sometimes when i read these descriptions it brings back clear memories of the noise....it is hard to deal with, it also shows how far i have come.

gibson.....this disorder can be helped by surgery, i think you would be on the ground only to heal. its a muscle spasm so it is not dangerous and it should not effect your flying ability....kinda like getting a bad tonsil out i guess.

good luck!

lib

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Gibson

Registered: 05/16/06
Posts: 2
Reply with quote  #64 

Lib,

 

Thank you for the reply. I may need to look into this a little further...especially if it is known to get worse. Currently, it is only an inconvenience but when it starts to affect my work or daily conversations the gloves will have to come off. Previous postings called it an "out patient surgery". I think that I need to take a look at places in the South East US that perform this surgery on a routine basis. It sure would be nice to enjoy a little live music again!

 

Once again, thanks everyone for your postings. It's nice to finally understand that my aggravation can be fixed!

 

 

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aton

Registered: 07/07/06
Posts: 1
Reply with quote  #65 

I have suffered for over 6 years with "Ear fluttering" ... muscle twitches inside both of my ears.  I won't repeat everything that has been said in these boards.  It has been sheer hell at times.  The worst is the insomnia caused by the twitching inside my head.  It can be maddening. 

 

I tried acupuncture, specialists, were examined by top ear experts, went to alternative therapists, etc etc ... nothing worked.  B-complex 100, time-released, and magnesium, and plenty of water were the only things to even make a dent, but its not a cure.

 

Two years ago I decided to get my two tendons surgically severed:  my tensor tympanis, and my stapedius tendon.  I just couldn't take it anymore.  Now this may stir up a lot of confusion, anxiety, and dispute -- but it must be said:  DO NOT UNDERGO THIS SURGERY!  IT IS NOT A SIMPLE PROCEDURE WITH NO SIDE EFFECTS!!  AND ... IT DID NOT WORK!!

 

I am 100% serious.  The twitching returned, and though I feel its effects less, they are still very noticeable.  In all my extensive research, I have found only two people who claim it worked "great" and with virtually no side effects. 

 

Take it from me ... CUTTING YOUR TENDONS IS WAY TOO RISKY, THERE ARE SIMPLY TOO MANY CAUSES AND THE SIDE EFFECTS ARE SERIOUS!

 

First of all, loud music -- whether from a concert, a movie theater, or even people yelling at stadiums -- HURTS!  It sounds just like a blown speaker.  And it will never sound any better ... normal sounds do not cause a problem.  But you would be amazed at how many sounds are not what you would consider normal.  The wind blowing in your ear from an open car window, or on a boat, the water from a shower hitting your ear, its incredibly annoying, paniful, and I used to love semi-loud music.  That is completely gone now. 

 

Plus my ear has a slight tinnitus now, which comes and goes, which I've never had before in my life.

 

I get twitches in my right ear too, now.  They are usually triggered by yawns, and I've done a ton of research and cannot find a definite cause and effect link.  I try to stifle my yawns, but at night, asleep, I find that I do it unconsciously.    This has been a nightmare for me ... so I sympathize with anyone of my comrades that suffer from this insane malady.  However bad it gets ... DO NOT GET YOUR TENDONS SEVERED!  Try try try to experiment with herbs, vitamins, water intake, whatever ... but do not get surgery!  Feel free to email me to continue this discussion.

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Reply with quote  #66 

hi aton,

 

i know the surgeries dont work as i had them myself. i have been suffering with hyperacusis, tinnitus and the dubious myoclonus issue since three years ago. last winter i underwent the very controversial tenotomies of the stapedius muscle and the tensor tympani muscle and i underwrite what youre saying, namely this type of surgery is full of risk. i ended up with many more symptoms and i wish i had never had it done.

 

here's my story :

 

http://www.websitetoolbox.com/tool/post/danmalcore/vpost?id=1076268

 

i think your case and mine show that hyperacusis is linked to those muscles as they are supposed to dampen sound. whether they are spasming or paralyzed, it all leads to soundsensitivity. only a perfect muscle tonus guarantees you are hyperacusisfree.

 

take care and thank you for sharing this,

 

 

astrid

 

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lib

Registered: 04/27/05
Posts: 272
Reply with quote  #67 

aton,

i am very sorry to hear your surgery did not help. could you have palatal myoclonus? i ask only because those muscles can not be cut and your symptoms returned. might be worth checking into.

i have had both tendons cut in my right ear and the tt in the left. yes loud sounds can be irritating, but in normal life i am fine. i went to a concert friday night, a little cotton in my right ear and i was fine....had a blast actually.

this surgery gave me back my life for the most part. and others i know. i have to wonder why it works for some and not for others....we all should, and the drs too.

have you been checked for palatal?

i can only say again i am sorry yours did not give relief, but others should consider it if thier drs are confident and of course competent....that the surgery could help.

take care, lib

 

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Awake

Registered: 09/19/06
Posts: 1
Reply with quote  #68 

 

Wow -just found this site while searching for possibly causes for a sudden twitching in the lower part of my left ear - almost the V area right above the ear lobe -

 

It began almost a week ago. Over the last year there have been some times were different noises around the offic - especially the phone to my ear caused a sudden crackling or eardrum pulse -but it was not chronic.

 

Now i have this spasm. It does not happen constant - but it comes and goes  - sometimes very light.

 

This has made me look into my tinitus.

I have had tinitus in my head since I was 9- or 10 - im 31 now.

I remember the night - I had a sinus infection and I was blowing my nose (very hard) and the eardrums went out of wack for a second and i instantly had a high pitch ringing in my ear. It freaked me out.

I was told by the specialist it could last forever or go away at anyu time but was damage to the hair like nerve endings most likely caused by a virus.

 

I also have TMJ and it was treated but never went away.

 

I just don't know what to think anymore - I have always managed to deal with the noise. It is only loud when I think about it (like right now), when i'm tired.

 

could this new spasm be related to the inflamation in my jaw from the tmj? could it be infection? I just want to have some peace of mind before taking this to the doctor.

I also have some fear this could be some great horrible tumor.

 

I just need to see the doctor.

 

 

 

 

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annegaelle

Registered: 11/24/06
Posts: 2
Reply with quote  #69 

 I don't think it could be a tumor. I have had this problem(twitching and thumping in my ears)for over 3 years. I've had a Ct and MRI scan and they didn't find anything wrong with me. It's just a muscle spasm...only very annoying. The main problem is : which muscle? I had both tendons cut in my right ear with no side effect or loss of hearing but now I have the spasms in my left ear! I don't know whether I suffer from palatal or middle ear myoclonus. Is there any way you can tell the difference?

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lib

Registered: 04/27/05
Posts: 272
Reply with quote  #70 

hi anne,

i will reply to your email soon. the fact that the surgery helped in one ear sounds like its in the ears. my dr said most of the time both ears are involved. so i would think its time to cut the other side. if it were palatal i dont think the first surgery would have helped. i have it in the middle ear and e tube.

lib

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Mike_T

Registered: 04/13/06
Posts: 8
Reply with quote  #71 
Hey there board members --

I have been following this thread with great interest for a while, and have to finally pipe in with my own questions, as I feel that I might have some elements of the conditions you are describing.....hoping that some of the board "veterans" might be able to shed some light on this for me.....(thank you thank you, by the way)

but here goes:
I have the loud popping in my ears. From what I've read, it sounds like you are supposed to hear some degree of popping in your ears when you swallow, that's part of the pressure equalizing through your eustachian tube. But I get popping all the time, when I speak, when I move my head certain ways.....and these are pretty loud pops and crackles that are constant. Still, I am thinking that this could be normal head noises that I'm just hyper-sensitive to (hyperacusis just picking up on these sounds?)

moving further, however:
I'm not sure I've got hyperacusis. But I do know that some sounds, and many ranges of my own voice, are unbearably loud. The fact that my own voice sounds overpowering to me is the worst part of my whole situation, it cripples me in conversation....I speak in extraordinarily muted tones, as to speak at full conversation volume just resonates painfully in my head. Essentially, I get "steam rollered" in conversation with people, as I can't raise my voice to their level or get similarly passionate about a topic without great pain in my head and ears.

Here's where it all gets weird: (!)

I can hear my own breathing in my ears really loudly oftentimes. As mentioned before, I also hear my own voice in my ears really loudly most of the time. But - and here's the bizarre part - if I put on my head a pretty substantial set of audio headphones (you know the ones, they look like earmuffs with big padded speakers...) - once I put these on my head, and I speak, my voice sounds GREAT. I can control my voice well, speak well with people in conversation and match their volume, it sounds pleasant, and doesn't sound too loud. But I wouldn't think this would be the case, right? Even with headphones to block most outside noise, isn't the majority of the volume we hear of our own voice come from INSIDE our heads? I am quite puzzled by this phenomenon. But I find I am wearing these headphones quite often to combat the paralyzing effects of my voice's sound in my head. They do look funny on my head, however.

Can anyone, for the life of me, explain why this might be????

I realize few, if any, of the message board members are likely doctors....but I am hoping that this set of bizarre symptoms and conditions might stir a thought or memory in one of you, and bring some new understanding of what my hearing condition might be. PLEASE do share.....

So much thanks to you all! I wish you ALL the best success and patience and understanding in your individual quests to find hearing health again.

looking forward to hearing from some of you - thanks.

Mike T.
motorcity_69@yahoo.com

__________________
Mike T.
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bev

Registered: 09/11/06
Posts: 294
Reply with quote  #72 

hi,i have my head in my hands shaking my head.

I have H/T I think. i was questioning what the difference between them & meiners disease, now I'm reading this post about TTS/SM.

now I'm crying I'm sorry.

 

I've had my ear problem for over 3 yrs & found out others had same problem by coming on line to this board. My ears were so bad I couldn't use the computer so I was away for awhile. ears got better enough & came back mayb 4 mths ago then I had set back for last 2 mths this is first time back & I'm not sure what I have now.

 

what test did u have to find out u have TTS/SM?

 

I need to stay on this board & learn more from all of u

I've had to stay away because ears couldn't deal with computer but b4 this last setback when I'd have good days & was able to come back I just didn't . It gets depressing & i guess I knew enough but i know nothing.

 

I have an apt for a H dr. coming up dec 28th, was scared to death to try the TRT not wanting it to make me worse, but I'm at the point were I'm willing to try now & now I'm reading this post about TTS/SM which I've never heard of. 

do u have H with TTS?

 

I need to know what i have b4 going to this dr. she's $200 for first hour , out of pocket,over $2000 for TRT , I'm on SSI, I do not have money.

 

If anyone can please tell me what is the difference between

meiners= can have vertigo, ringing?

TTS=

Sm=

H= sound sensitivity?

T= ringing?

 

I have T, sounds hurt my ears, I have fullness, I have pain, dizziness at times, I have crackling, major tightness above ears, my neck is tight, had blood clot cause of tight muscles in chest pushing into vien in right arm they call it TOS , I can't talk on phone, no music, good & bad days mostly bad, both ears, left side was worse now they r close to same, left side feeling like gona have stroke when real bad, veins above ears feel swollen,vice on head feeling, i used to have setbacks that lasted mths then setbacks got better to where they would last only a wk , then just a few days,  now back to over 2 mths with this setback.

 

what is TTS?

SM?

does it sound like I could have either of them?

I'd appreciate any response.

thanks, bev

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bev

Registered: 09/11/06
Posts: 294
Reply with quote  #73 

i just read alittle on TTS , it seems to be same symptoms as H, why different name?

 

I feel very strongly that my muscles r extremly tight, like I siad even to cause me to have BClot. I have TMJ, neck is super tight also, I feel like something is imflammed pushing into something in ear to make sensitive could it be that this tensor T muscle is also very tight & in cutting it, it no longer is pushing into whatever to make ears sensitive.

does this make sense? I am super tired , sorry if not making sense.

 

 

i guess my question is when having TTS ,what does cutting the muscle do to help one feel better?

gotta go to sleep.

good night

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lib

Registered: 04/27/05
Posts: 272
Reply with quote  #74 

 hi bev,

look up tensor tympami syndrome, stapedial myoclonus and middle ear myoclonus.

i was very sensitive to noise, but did not have true h.

can you describe what happens when you talk on the phone?

and describe your symptoms a little more detailed, like....

the crackling, what causes it or triggers it......like outside sound, or swallowing. thats where the clues are.

lib

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bev

Registered: 09/11/06
Posts: 294
Reply with quote  #75 

Hi Lib,

 Ok let see...

well first it seems to me that i have different levels so to speak with this. like when my ears r at a good level I still can't listen to the TV cause the sound will hurt my ear, actual pain, give me fullness, same with radio & phone, but when i'm at a good level I can drive in car without sound of road hurting ears & If i drink alcohol I can even venture out once in awhile to a bar that's not killer loud , play some pool & yes even listen to juke box but that is only when at good level & only with help of some alcohol. i'm don't drink all the time, last time i was out was over 2 mths ago b4 this setback. at that time i  thought i was getting better & had started to go out a few fridays, so u know I'm not an alcoholist but i will tell u I thought about it. it seemed to be the only thing that helped me have some sort of life/social life.

 

I know we can't shelter ourselves from sounds because it can make us worse but when i have a setback like i'm having I have 2 stay away from sounds until ears will relax. the sound of my own voice hurts sometimes, water,frig buzzing, anything from the slightest sound a dog might only hear to "THE KILLER LEAF BLOWER" . It seems electonical type of sounds really kill me. computer.

sometimes i find myself talking very loud even though loud sounds hurt ears, like I'm in a tunnel, sometimes i hear to good other times i can't hear good at all,i hear a crackling at times. it's just so much I can't even explain it all. different things happeing with ears at different times. like i siad it kind of depends on what level I'm at also.

 

I really feel strongly that my stomach acid r making the ringing in ears louder (T). it's seems to be half my problem. i feel my T is related to my stomach which i am on prevacid for.

I feel sometimes on the left side of my head like I'm gona have a stroke, had heart tested resently & all is good there.

I feel like i have a tight band around my head above ears.

when this first started for me. i was extremly dizzy, my toes were blue, my hands were blue with yellow, the blood was not circulating though my head problally at least that's what it felt like. i started getting massages, massaging self on daily basis & my blue feet went away along with discolored hands & dizziness got better, I feel that my jaw  is related to ears. my jaw was super, super tight, as my neck & muscles under chest that caused Bclot. so every night i stated to stretch open my mouth as wide as i could & little by little it felt like the stretching was helping my ears. I know its sounds crazy.

I feel like my muscles r so tight they r pulling down like a type of connection from my chest pulling down neck muscles, pulling down on jaw muscles, pulling down on muscle, tendons around ears effecting ear to mayb even imflamming the area casue ears to be sensitive. does this make sense?

 

the only thing that ever helped my ears besides alcohol which relaxes us was relafen which i used to take for my back 9anti-inflam). but with my stomach being as bad  as it is i can no longer take it. I have been taking bromelein which is a natural inflammatory which seems to help ears.

 

I joke that i'm a tight ass & thats why i have the issues I have.

I don't know if I have H because of my brain being messed up & sending the wrong signals when it comes to hearing or if muscles, tendons, inflammation pushing into nerves is my problem, thats what it feel like & to tell u the truth it might be easier then fixing the brain but I have to figure out what to work on. so far I'm working on stomach for the T.

I try to go to gym but with this setback Its been hard just leaving house. b4 this setback I had gotten back to gym was stretching & strenthening & was just starting to listen to tv like 2 minutes on 5 min off, 2 min on , 10 min off. i only had started to do this for mayb 3 days when I had a major setback but i felt i was on the right track. the mistake i made that gave me setback was I talked for 2 minutes on a cell phone, the cell phone & even the regular phone r my major enemy. i willnever talk on cell phone again...

Lib, I have to go , my daughter is here. I'll check back later

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lib

Registered: 04/27/05
Posts: 272
Reply with quote  #76 

it does sound like it is muscular to me. did you read up on the conditions? also read my posts and see if anything jumps out at you.

lib

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bev

Registered: 09/11/06
Posts: 294
Reply with quote  #77 

thanks lib. I have to sign off now, my back is killin me after writing my last post, but yes I will read ur post again & i am doing my own little investigating of all old post to learn all i can.

I believe my ear thing is muscle related big time. i just never heard TTS or Sm b4. have to learn about every avenue with this ear thing & figure this whole thing out. I have part of it but I need all info to get fixs completly. thanks again for steering me in what I think might be the right direction.

smile

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jambo

Registered: 01/11/06
Posts: 31
Reply with quote  #78 

BIG BREAKTHROUGH (for me anyways)

My symptoms are described multiple places in this thread so I won't be bothering you with that. But I will however describe how I've been able to be at a really loud karaoke bar tonight.

 

What my biggest breakthrough has been, is that I now fully understand, and not the least comprehend, that these muscles are not capable of hurting or damaging my hearing. On the contrary, with these muscles operating long before damaging sound levels are reached, my hearing (on the bad ear) is less probable to receive hearing loss than a normal ear (however unpleasant it feels). Once I fully accepted that the unpleasant movements of the muscles are not damaging/hurting me in any way, and are not dangerous, I set out to defeat TTS.

 

First off, I noticed that alcohol somewhat dampens not only the effect of the muscles and increases the sound level at which unpleasant flexing and crackling starts to appear, alcohol ALSO dampens how unpleasant you feel they are. This was a hard acknowledgement for me since I used to be anti-alcohol and didn't drink. But the crackling and distortion of sounds at high sound levels still appeared.

 

My big breakthrough tonight was that I decided to completely ignore that the muscles dampened my ability to hear properly on one ear and the unpleasant flexing and twitching of the muscles as well as sound distorition. I stayed at a party for nearly six hours, we then went to a karaoke bar with very loud sound levels (we could not talk together without shouting an inch away from our faces). At first the crackling started. But after a while it didn't bother me that much, and the TTS started to decline in effect. And what do you know... the last hour I stayed at the bar, I had almost no ill effects whatsoever. I was almost perfectly well. How fun! That's actually the first time I've really had fun in a very long time. Now I'm writing this just as I came home, so there's no telling if it will still be good tomorrow without alcohol in my system and after the TTS may have got a chance to "recover".

 

I thought this could be of some help... although I must say I stayed at that karaoke bar darn (hmm, just noticed there is a "no profanity"-policy here so I replaced a letter with an R in this word) long before the TTS stopped bothering me, but I had gotten to the point where I decided I would ignore it altogether, which is an important point to make. Take care!

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jambo

Registered: 01/11/06
Posts: 31
Reply with quote  #79 

Oh yes, and I'd like to add one more thing: I always think "what's the worst thing that could happen?" This has helped me tremendously. That's how I realize that this cannot possibly do me any harm, it's just unpleasant. You may realize this, but it can take some time to convince your subconsciousness about that fact. It's like people with arachnophobia, they know spiders aren't dangerous (well, most of them anyway) but they still cannot stop being afraid of them.

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jambo

Registered: 01/11/06
Posts: 31
Reply with quote  #80 

Well, surprise surprise, my ears are feeling very well today. Even without alcohol in my system. I still feel the TTS is there, but it's much weaker than it used to be. However in my experience this condition goes up and down as it pleases, so I can't really expect it to remain well based on a few days of "good ears". If it will at least last through Christmas and New Year I will be very happy. But at least from yesterday's experience I know the battle can be won without necessarily having to resort to surgery. That idea still scares me as much as it sounds tempting, but some users here don't recommend it and neither do my doctors, so that is still the very last option. OK, this was just to update on my previous recent posts... I do not usually re-check on this forum that often.

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bev

Registered: 09/11/06
Posts: 294
Reply with quote  #81 

jambo, hi i'm glad u have a great time/ just be careful. i've gone out with alcohol also dulling ears but without it ,ears r wide open at least for me.

careful but have fun

happy holidays

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annegaelle

Registered: 11/24/06
Posts: 2
Reply with quote  #82 

hi bev I read about your symptoms and your problem seems a very complex one. tts and sm or stapedial spasm are a little bit different from hyperacusis because in my case I heard a repetitive clicking sound which could go on for hours due to the muscle contracting. That's why I had the stapedius and tensor tympani cut im my right ear. I'm not sure cutting them would help in your case. You need to find a good specialist who understands your condition... I know it's difficult as it's not a common problem. 

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Krumbak

Registered: 01/11/07
Posts: 6
Reply with quote  #83 
Hi.

I’m so glad I found this board!
For one year I have had the Tensor tympani myoclonus symptoms in my left ear, without knowing what is was. I suffer a small amount of tinnitus on both ears as well, for 15 years. I am today 33 years of age.

I’m located in Denmark in the EU and have been consulting an ear-doctor here. He has not been able to do anything for me, as all hearing tests, pressure in the inner-ear etc. is fine. He says that the vibrating feeling of the eardrum is my imagination and can not be triggered by specific sounds. He has no clue about – and seems not to believe me – when I tell him I can make the vibrating stop by putting a finger in my ear or holding my nose and trying to equalize the pressure in the ear. Sometimes though, the vibrating does not stop.

I can not describe my symptoms very well in English language, but reading other peoples symptoms in this thread is spot on with my symptoms – the rapid clicking (vibrating eardrum, broken speaker) triggered by specific sounds (knife on plates, cup placed on coffee table, talking in mobile phone, doing dishes etc, and the sounds don’t have to be loud at all) and is also triggered by just touching my ear or the left side of my face. The feeling that the pressure is wrong in the ear and it is like the ear or eardrum tightens. The feeling like there is water in my ear or behind the eardrum (no water there as the ear-doctor pierced my eardrum 4 days ago – all dry). Sounds like walking on snow, crackling when swallowing etc.

What I am looking for is some kind of documentation of this Tensor tympani myoclonus, for my ear-doctor to read and to document that there is an operation for this in the US, to get him to acknowledge something is wrong and I need to get it checked out by some specialist, he can refer me to.
I am quite sure the ordinary ear-doctors in Denmark are not aware of this (I have been following a Danish forum on the Internet with lots of other people with same symptoms, not one of their doctors have mentioned the possibility of Tensor tympani myoclonus).

I just need to get some “proof” of this, to get the doctors in Denmark to focus on it, so that I and others in Denmark can get rid of this thing. Maybe the specialists already know of this, but I can not see a specialist without getting referred from my ear-doctor and he has not got a clue and thinks it is my imagination, even though I can clearly tell it is physical.

So please, if you know of some medical website I can refer him to, or you know of other countries in the EU that’s aware of Tensor tympani myoclonus, and do an operation for, then please let me know. Maybe I can get him to call some other doctor nearby, who knows about this.

Best regards,
Thomas.
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lib

Registered: 04/27/05
Posts: 272
Reply with quote  #84 

yes, if you do a search on middle ear myoclonus, tensor tympani syndrome, and stapedial myoclonus you should find a lot of info. and websites.

you definately have myoclonus symptoms that match mine.

also, remember that both tendons can be involved, so both may need to be cut.

finding a dr is hard, but as you visit these sites and find info look to see who wrote it and where they are located, that is how i found my dr sismanis.

also look up these conditions on pub med.

lib

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Krumbak

Registered: 01/11/07
Posts: 6
Reply with quote  #85 

Hi Lib.

Thanks for helping out. I will look into what you wrote, and I will keep this board up to date with any progress, as to encourage others to get something done about this.

I am aware, that both tendons might have to be cut. When I find a doctor who is capable of dealing with this and understands it, I will discuss it further with him. But it is good to have as much information as possible.

Thanks again Lib, and others who have posted so much on this board. So much good information here and it certainly help me, to know that I am not the only one dealing with this.

Best regards,

Thomas.

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jambo

Registered: 01/11/06
Posts: 31
Reply with quote  #86 

Hei Krumbak,

 

Som nordmann forstår jeg meget godt dansk men jeg tar dette på engelsk for de andre på forumet.

 

I've been having the same thing you're describing for quite some time now, and it's been getting better over the last half year. If you read my previous posts above in this thread you'll see I don't have the same problems I used to have. Actually a lot of the improvement is not that the reaction in my ear has become so much better, but that my brain is able to ignore it. I used to get really annoyed and irritated each time something made my ear react, but now that I understand that it's not dangerous and have been able to ignore it for some time, it just isn't all that bothering anymore.

 

However nice it would be to get completely rid of the symptoms, it really isn't that necessary for me now. Also, with the odd chance of it not working (read Astrid's thread "failed surgeries" for more info on that) I just don't see the point. My doctors here in Norway don't recommend surgery, although they acknowledge that some doctors in other countries think highly of that type of surgery. They mentioned as an example that some of their patients, who had strokes that paralyzed the muscles of one side of their body (this probably includes ear-muscles and would compare to cutting tendons/muscles in the ear), would complain about sound sensitivity.

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Krumbak

Registered: 01/11/07
Posts: 6
Reply with quote  #87 
Hi Jambo.

I have read you "story" and I am glad to hear you are feeling better. It is always nice to hear people getting better.

I have an appointment with my ear-doctor for know, and I am going to present him with the documentation I have found regarding tensor tympani syndrome and stapedial myoclonus. Hopefully he will send me to a specialist. I'll be sure to ask the specialist about the side affects of surgery, so thanks for making me aware of what your specialists told you - I will ask about that specifically.

I have already seen my normal doctor, and he seemed quite sure that the symptoms I have described could be from tensor tympani and stapedial myoclonus, even though he have never heard of this before. So I am keeping my hopes up, in seeing a specialist and finally talk to someone who can provide me with answers and hopefully help me with this thing.

Best regards,
Thomas.

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