Jamie,
I printed the beginning page of this site and brought it to my neurologist on my first visit.
Click this link or just hit "back to site" at top of this page and print that out and bring it.
pages.ivillage.com/lisa_mapes/stapedial_myoclonus/Then I also brought with me a description from the Tinnitus Support Message Board that described me to a tee. It was an old archived message. I have pieced most of it together below. If this is anything like you, you could print that too. That is what I brought to Neurologist with Lisa's info. and he believed me immediately. Actually I went to ENT with all that info and he agreed I should see neurologist.
Neurologist put me on Cloanzepam first and that didn't help much so he added Trileptal along with the Clonzepam and I have been almost fine since!
Here's the post i read at tinn supp mssg board that describes my problem:
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Hi. I am a new member with symptoms of Tinitus. The problem I have is intermittent.
*During quiet (e.g. sleep, etc.) periods I had no symptoms
*When subjected to sound above a certain threshold I heard clicking sounds only in my right ear.
*Certain types of sounds seemed to trigger the clicking. The worst sounds were running water, shower, rustling of paper, etc.
*The clicking stops just after the noise stops.
*The symptoms gradually got better (took a louder trigger sound to start the clicking) over the next month and stopped.
I did not see a doctor at the time and did not notice any problems until maybe 6 months ago. I was subjected to loud music (maybe 90 – 95 dB, not hearing damage loud but annoying) for about 1 hour. Above symptoms lasted for about 2 weeks then stopped.
It has some other weird behavior. Lets say I start the shower running and the clicking starts I can put my finger in my ear (making it quiet and applying a slight pressure in my ear) and the symptoms will stop. Then I can sometimes pull my finger out of my ear and the symptoms will not start back even though I am hearing the exact same input that started the symptoms, etc. I can always get the symptoms to stop by briefly putting my finger in my ear. The symptoms may or may not come back.
On good days only running water, shower, etc. and not talking people will set it off. On bad days any moderately loud sound will set it off clicking. It only happens in the right ear.
Sorry for the long post. Can anybody tell me what my condition is and what specialist I should see for diagnosis or treatment?
Thanks
Luzette
Registered User
Posts: 180
(7/26/01 11:46 am)
Reply Re: New member looking for some direction with problem
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2g,
I don't want to try and diagnose you because I am not a doctor. However, it sounds like your problems all started from loud noise exposure and are being worsened whenever you have further noise exposure. I would tell you to go see an ENT specialist for a complete check of your ears. You may have a problem that is not noise related and if you feel stress is a factor that needs to be addressed too. I've had hearing problems for 30 years, and I would start with an ENT for a full evaluation. If you are not satisfied that the ENT is understanding your problmes try to find another one. If after seeing an ENT you still don't have a satifactory answer then I would tell you to try an MD for further testing.
2G
Registered User
Posts: 2
(7/26/01 2:53 pm)
Reply Re: New member looking for some direction with problem
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Thanks for the info. I have started to see an ENT this last week. He is doing various hearing tests now and I guess he will give me his opinion soon. I was also trying to get some independent idea of what the diagnosis might be so I can better understand/communicate with the ENT or whatever other Doctor I should see. I had hoped that someone here might have heard of symptoms like mine, etc.
Does anyone else have problems like mine or have the heard of such.
Thanks
Gary
It seems to only be triggered by other noises. So when it is quiet then there is no problem. When I run water in the sink then it starts rapid clicking. As I tried to express earlier. Certain sounds are much more susceptible to set it off. For example loud toilet flushing will readily set it off (unless it is in remission).
The sound has something to do with triggering it, but what I find strange is the fact that I can stick my finger in my ear (blocking the sound or slightly changing the pressure) and I can get it to stop. Then I remove my finger and frequently it will not start back. Even though the ear is now experiencing the same sound (trigger) that it was.
pkaasa
Moderator
Posts: 773
(7/27/01 11:51 am)
Reply Re: New member looking for some direction with problem
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Have you been checked for stspedial spasms? I'm no doctor ,but you symptoms sound like what my ENT described as a stapedial spasm or a eustasion tube spasm.
pkaasa
2G
Registered User
Posts: 4
(7/30/01 8:59 am)
Reply Re: New member looking for some direction with problem
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I have not been checked for stspedial spasms. I have had various hearing tests including a test for nerve path damage (??). I hope to see or talk to my ENT this week and get his opinion on what to check next. He mentioned stapedial myoclonus as a possiblilty. I think he maybe trying to rule out other things, etc.
From what I have read doing web searches I am thinking it is one of the following:
palatal myoclonus
stapedial spasms (myoclonus)
or tympani spasms
I assume there are tests that will distinguish between them.
Thanks
Gary
Gary,
I think your ENT is on the right track.My old ENT said that a clicking sound on exposure to noise could be a symptom of Stapedial spasms or palatal myoclonus.Both conditions are treatable.Good luck with your visit.
pkaasa
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Sorry this is so long Jamie, you can print what you want and it may not even apply to you but this is what my problem was and it helped me explain it to the doctor.
K.
