MEET AND GREET

[Lisa]

I thought we could all join with those with the same condition for that extra support.......

so feel free to introduce yourself and let others know how long you have been suffering.

[Lisa]

HI, I am Lisa,

I have been suffering from stapedial myoclonus for somewhere between 1 to 2 years, it started off slowly, only being triggered by certain sounds, and now it unfortunatly effects every aspect of my life. I am currently taking clonazepam to help to minimize the symptoms but my body hasn't yet acclimated itself to the medication so unfortunately I sleep alot during the day.

Lisa

[arthur]

I have been experiencing T for more than 4 years now. I thought I share my symptoms/experiences with you.

I am a scientist so I have done a lot of research on the topic and found, after excluding many other possibilities, that my case closely resembles the symptoms of “Stapedius Muscle Spasms” as described by Dr Gordon Shield’s article from Jan 22, 2003 (you can find his presentation on the web) as well as text in Dr Levin’s research papers. I have noticed that the description on this website is similarly a good match.

My T goes through different phases and there are months when it disappears almost entirely. However, when it appears it tends to stay with me for 1-3 months at a time.

I cannot confidently correlate its appearance with certain events. Perhaps, most likely, it appears days after I am flying to a conference where I am listening very intensively to “understand” science talks or where I am giving a presentation myself (hard to say as I am usually giving presentations). It could be that very focused “listening” is what causes the middle ear muscles to start contracting/relaxing in a more random manner. The question is why they don’t recover after rest... I compare these ear muscle spasm to those under one’s eye that one might occasionally experience (e.g., after too much reading in low light conditions combined with general fatigue). Another analogy is a small speaker that occasionally oscillates for short periods when its dynamic properties are not good enough and cannot follow the rapid frequency changes in a piece of music.

When my T is mild it is only triggered by external sounds, e.g., newspaper crackling, shopping bags, faucet water, etc. When it is severe, it goes on and off periodically without requiring external stimuli or the exacerbating external noises. But, it is always affected by the noises/sounds I mentioned. When it is really bad, it can be triggered by many other noises/sounds, e.g., even music or voices.

I hear it only in my left ear (I can almost feel it or localize it when it is very loud). It resembles best crackling, fluttering sounds and has a relatively high sharp pitch.

Each T episode starts of as isolated clicks at intervals of a second and for a few times, then accelerating gradually into a sequence of fast crackling. This accelerated part can last from 5 seconds to 40 seconds. It never alternates irregularly, rather the period changes (T vs. silence) slowly during the days, almost unnoticeable.

After each episode of T (5-40sec) the crackling suddenly stops and I can enjoy quiet that lasts typically from 20 seconds to as much as a minute. Then, the T attack again starts with the isolated cracks, accelerates, and so on. This pattern repeats for days and weeks. I can almost predict them when they occur or when they end, just by watching my clock.

So, this is the pattern:
< C C C C C C CCCCCCCC ............... >
< - initial individual cracks, accelerated cracking, pause/silence >
< a few seconds, 5-40 secs, 20-60 secs >

The loudness is pretty constant but I have noticed that it softens gradually before a T phase ends. There is no significant variation in the noise I hear.

Stress appears to aggravate it. Coffee appears to reduce it. Often I have T in the morning and a cup of coffee makes it less noticeable. A warm shower makes it better for a few minutes. Alcohol intake in the evening appears to increase its loudness. Fatigue (e.g., after skipping a meal) does the same. Physical exercise seems to help. I have started to take vitamins, minerals, etc, and stopped as it seemed to increase the loudness.

I have no symptoms of hearing loss, dizziness, etc.

I would be curious to hear if your situation resembles my description and to what extent. I am waiting to meet Dr Levin who is an expert on this. Unfortunately, the first time they could schedule was in early March.

[Lisa]

First of all I would like to welcome you to the board Arthur.
I hope first and foremost that you find the support you need here.

I wanted to talk the time to explain to you a little bit about how I feel my situation both resembles and differs from that of yours.

I myself have experienced the ringing of tinnitus in my ears for as far back as i can remember, I always assumed as a child that that faint ringing that i heard was the sound of electricity, because it strongly resembled the sound that a television set with the volume off makes. The noise is constant, but very quiet, it does not bother me, probably because to me that is what is normal. Also since childhood I had experienced a feeling of fullness in my ears, that couldn't be relieved by popping my ears.After several childhood visits to the doctor nothing conclusive was found. However aside from this I do infrequently experience a different type of Tinnitus that I find is very intrusive.

When these Stapedius Spasms first began to occur, I could not myself coralate them with any external stimulus, they would just happen, a rapid session of lower toned "pops" in only my right ear. It happened fairly infrequently maybe once every six weeks, that I wasn't intirely bothered by it.
I had brought it up to a doctor, and they suggested that it could be Pulsitile Eustachian Tubes caused by an allergy and to take an antihistimine and it should help to clear up the issues.

I allowed several months to pass by after trying this suggestion and had no relief. By now my spasms were occuring while talking on the telephone, and I relate when you say

It could be that very focused “listening” is what causes the middle ear muscles to start contracting/relaxing

. The volume of these spasms increased, as did their intensity, although at this point the spasms mostly happened when i was trying to focus on listening to something.

Once again I went back to the dr, and he explained to me that sometimes you just get spasms in your ears like you would under your eye. So i just decided to try to wait it out. It only happened while talking on the phone for the most part, it wasn't consuming my life, so i wouldn't let it bother me.

Another couple months passed by, and the computer cpu fan started to bother my ears, I was getting spasms more and more frequently. The radio was bothering me, and I noticed that these spasms seemed to occur in relation to the change of volume/pitch of external sounds, with the influx or change the spasm would occur. I would get dizzy and nausiated, and have mild aching in my ear after about an hour of exposure to sound. I found myself pulling away from listening to anything.

I went back to the doctor, and was scheduled to have tubes put in my ears. They really beleived that it was eustachien tube dysfunction that was causing all of my problems.

After the tubes were put in, and I had healed from surgery, the volume and intensity of my spasms increased 10 fold, but the pressure feeling in my ear had completely subsided.
Its like i had lost my "buffer zone" by having the tubes inserted, though i never have regretted it.

When exposed to noise over a term, I get a different type of ringing tinnitus in only my right ear. The volume is high, to the point where often times i wll ask other around me "What is that noise?" and then realize that it is my ear. This tinnitus often sounds like crickets, or just severly HIGH PITCHED ringing.

Both stress and coffee seem to agrivate this in me. I have only had alcohol on 2 occasions since I had the tubes inserted so i can not viably state whether or not it makes my situation worse or better. Fatigue and poor diet/missing meals also seems to intensify both the T and the S.M.

Currently I am to the point where this condition has completely debilitated me. Exposure to noise makes me feel so dizzy nausiated and weak that I couldn't hold a job. I live in silence at home in hopes to have solice from these spasms.


I do hope to hear from you in regard to your visit with Dr. Levin. Aswell as to discuss what your theorys could be with what may have caused you to experience these symptoms.

Take Gentle Care Arthur,
and once again Welcome to Stapedial & Palatal Myoclonus Support

Lisa

[arthur]

Sorry to hear about all these things that you went through.
I am usually a very strong person trying to see the positive before the negative aspects in life.
I am not sure the strategy of isolating yourself is a good one. I myself feel better by being crazy busy constantly.

Is the sound you hear intermittent, i.e., is that for a short time and then you have a break or is it constant ringing?

BDW Why do you think you have stap. muscle spasms?
Arthur

[Lisa]

Arthur, Both my Physician and I beleive it is stapedius muscle spasms because i can sense a definate movement in the ear, as the spasms continue on during the period of the day when i am exposed to noise, so does the pain I experience. When exposed to noise the spasm is constant, i receive absolutely no solace, and I find that once i get to a point that I need to wear earplugs due to the spasm becoming unbarable the Ringing from tinnitus becomes such that it is almost as unbearable if not more so then the spasms itself.

I unfortunatley have found that the times I feel best in life are those spent in silence at home. I do have a few friends that come over and we participate in "quiet" activities, such as playing board games or cards.

I do get out of the house but make sure to do so during quieter times, such as early in the morning. I'll go out for breakfast, or for coffee with my friends, or to the library.

My physician does not want me to work, as it tends to really agrivate the condition, and the medications I am on to control the severity really don't leave me in a correct mind space to preform alot of improtant tasks.

It was very difficult in the begining, I did feel very isolated, but I learned that I have to be my own advocate, and do what I have to to get through the day.

Its really given me some time to reflect and realize what is important in my life. Its also given me time to focus on my art, which is something I have always wanted to have more time to devote to.


Thanks For Posting,


Take Gentle Care,

Lisa

[kemper]

Hi, my name is Kemper

I have had the symptoms of stapedial/ tensor tympani myoclonus for about half of my life. Only my right ear is affected, and it is always triggered by certain sounds in my environment. The first instance that I remember was in my ninth grade english class, where I found myself puzzled about how my ear would do this thumping thing everytime my teacher was speaking. I eventually correlated the thumping with the sound of her voice. At this point in life, it was not bad, and for years it was just certain female voices or high pitched male voices that would set my ear off.

In the past two or three years of my life this condition has progressed to a point that I consider unacceptable. Almost everyone's voice (including my own) is capable of generating the spasms. Other sounds include running water, page turning and/or paper rustling, and my own breathing. Probably the most alarming trigger, though, is the musical pitch A at 440 hertz. This is extremely frustrating to me, because music is my passion and is a big part of my life. Now I sometimes can't even listen to or perform my music because I don't want to experience that pounding in my head everytime there is an "A" in the music.

That is the short intro, and I'm glad I happened to come upon this conference,

best wishes,

Kemper

[arthur]

Kemper,

Your symptoms are almost exactly like mine.
If you are in the Boston area you should see
Dr Levin from Mass Gen Ear and Eye Hospital.
He is very interested in this type of T.
He has given tegretol (seisure medicine)
to patients and it helped.
Right now I don't have the symptoms but I will
try next time I have the T.
In my case it comes and goes. When I have
it stays with me for months.

Arthur

[Lisa]

Kemper, my appoligies for taking so long to reply.

Your symptoms too sound alot like mine.

I have to ask, what are you doing currently to alleviate your symptoms? Are you taking any medications?

Let us know.
Take Gentle Care

Lisa

[kemper]

Hello all,

To elaborate and answer some of your questions: As far as remedies that I have tried to alleviate my symptoms, I have been prescribed three different drugs- tegrotol, neurontin, and lorazepam. Neither of these seemed to have any effect, other than to make me sluggish and drowsy. I then tried acupuncture treatments, along with herbal supplements. It seemed like this did provide some relief initially, in the way that I actually could go for days without experiencing a spasm. This didn't last, and perhaps what I thought was relief was simply a cyclical pattern coming back. Like some of you, the conditions would come and go, sometimes dissapearing for days at a time. Lately, a spasm-free day is not something I experience very often anymore. (frown) At this point, I am not on any medications. I have been trying to eat healthy and go to the gym, which in my past seemed to coincide with a reduction in the symptoms. Other things that I do is to simply avoid exposure to the kinds of noises that set my ear off, or to wear an earplug. These are not ideal remedies, though. It is uncomfortable to have an earplug in for long periods of time, and I can't even comprehend how socially awkward it must be for me to tell someone that I can't be in the presence of their voice, because the sound drives my ear crazy. And to not be able to listen to music, which is my passion, is extremely disturbing. Thank you all, for your concern.

best wishes,

Kemper

[Peter]

Arthur, you could be my twin brother:
(a) I am a scientist too,
(b) My left ear is deaf,
(c) I have the same observation on the periodicity and structureof the T,
(3) My observations of the stimuli of T is the same as yours.

An additional thing: I can get T-vs.-silence periodic activity when I am in bed and seemingly there is no external stimuli. (Maybe the stimumlus is the constant ringing I have due to the deaf left ear....). Also the T stops if I cover my ear when it started due to a stimulus. For instance, when I step into the shower the T. kicks in. I cover my ear, it stop, and stays off (for a while) whenI uncover my ear.

I am going to see a ENT doc in abot 2 weeks. Intereseting what he going to say.


Peter

[jarkko]

Hello to all! I just found this forum. 6 months ago my ear started to beep highly pitched from almost every silent sound (turning page, whispering etc, walking on a carpet) resulting a morse code like beeping, but when there was no outer trigger sounds it went away. This has been better and worse during this 6 months. When its really bad it doesn't need outer trigger sounds and "morse codes" also at nights. I've noticed that when it goes really bad and makes that constant beeping, I'm usually in horisontal position - sleeping - and sometimes it has stopped after I've risen up (after 15 min - 2 hours). Strange! And when it has been good, it has almost disappeared (being _very_ silent and beeping only now and then, I mean couple times in day). I have a "normal" tinnitus too, but that doesn't bother me anymore.

I'm so glad that I found out after hard looking what is this problem of mine, and that I found all you others too!

Jarkko / Finland

[EarXPlode]

Jarkko,

So have you been officially diagnosed with Stapedial Myoclonus or Tensor Tympani Syndrome.

Most people don't post on this board anymore. It kinda flopped. I wish it had a better setup, but if you want to chat via email about it, I can give you some good information and possibly names of people who can help.

j*o*e*t*e*c*h*e*@*y*a*h*o*o*.*c*o*m (no stars...so email stealing "bots" don't get my email and send me spam)

Joe