What's yours like?

[Ricochet]

Lisa, What are some of the symptoms you suffer from? I feel like I haven't really heard your whole story.

I am ok in quiet. Running water always triggers the popping/crackling/snapping (hard to describe) sound.
When I am driving the road noise will trigger the popping and sometimes my own voice does. If the sound stops the popping stops.

Is yours similar? I don't suffer constantly (thank god) but it is so annoying and sometimes I feel like I am always anticipating and waiting for it to start. I know that's not good.

Just curious.
K.

[Lisa]

Karen, Unfortunately for me, it seems that any exposure to noise sets off the stapedial spasms, if that is what it really is... I don't know I am begining to have my doubts and am going to demand an eeg, to make sure it isn't a different type of seisure disorder.

I still wonder if the Auditory Brainstem Evoked Potentials Was Preformed Properly, But thats a whole other ball of wax for another day, maybe tomorrow.

take quiet care of you Karen

Lisa

[Ricochet]

Is it in one ear or both? Which one, and what does yours sound like?

I will be trying new drug tomorrow so we'll see how sleepy I am.

Take care,
K.

[Lisa]

Well, lets do my little examle for you that i do for everyone
Go into a silent room, or do it when you are in silence....

Take either ear and fold it forward, like as if you were to fold it over itself,and flick or at the back of the ear closer to where its connected to the head, now imagine sort of a sensation of a movement with that sound, and the sound being deeper, and for obvious reasons more hollow, and as the day progresses, the sound or shall i say the sensation or feelinf of movement creates pain in my ear; which is primarily the right, but is happening more and more frequently on the left. I don't know where to stand with this any more, because they seem to be trying to convince me more and more to cut the stapedius tendon.

And isn't that possibly a life altering decision?

What new drug are you starting on Karen?

Forgive me as my new drug (Topamax) makes me forget everything!

Take quiet gentle care


Lisa

[Ricochet]

Lisa, Yours does sound a little different than mine and I'm so sorry it's started in the other ear. As I described mine, is a popping, crackling, snapping sound like a small speaker is in my ear playing this noise deep inside. I can get one or two pops or if the water is running it is a fast, rapid fire crackling.

Went to a party last night with 10 people there. It was fine most of the night but at times when coversation got loud it started popping. Other times it did not. I do not understand this whole thing.

Can you stop your noise if you use earplugs? I can but find it so annoying that it causes more anxiety sometimes than the noise itself. I don't like to talk with plugs in as it amplifies my voice and makes me talk even softer than I normally do and I absolutely hate eating with them in. Talk about noisy!

My new drug is called Trileptal. He started me on 150mg twice a day for two weeks and then 300mg twice a day then on. I will continue with the Clonazepam but back at the .5mg three times a day. We'll see how the drowsiness goes because the Trileptal causes it too.

I just took my first one this a.m. so I don't know yet how I will react.

My neurologist considers cutting the muscle a last resort. I would want absolute confirmation that it is the stapedial muscle and not possibly something else (like the tensor tympani or the palate).

I would definately try the Botox injections. I think after the holidays (if there's no improvement with the meds) I will go back to ENT to see if he does the Botox treatment. But again, I would want confirmation that it is the stapedial muscle. They cannot confirm that without looking inside beyond the eardrum.

Hope this helps you and I hope your sleepiness gets better with time which is what all the literature says.

K.

P.S. Remember that link I sent you from EZBoard from that guy Gary (2g). I finally got his email, but he has not responded and that was over a week ago so I don't have too much hope. Wish he would respond to see what he did and if he ever got better. Did you ever read that thread I sent you in archives 2 last reply 7/30/01. Is that anything like yours, it's exactly like mine

[Lisa]

If i am without noise i am without the popping or clicking or fluttering or whatever they want to call it

Earlier in the morning it isn't terribly bad, but with exposure to noise it always happens, it just happens to depend on the intensity or volume or fluctuation of the sound.

I am definaately going to see another neuroligist for a second opinion.

I am just so frustrated at this point.
I just do not know what to do.

I think the Topamax is starting to help, i can't really tell any more, it makes me feel more like a human being. and that is atleast important,

Please keep me updated throughout the holidays

take gentle care

and let me know how your holidays go

Lisa

[Ricochet]

Thanks Lisa, and I'm glad the Topamax is starting to help.

You have a good holiday too and we will keep in touch.

I was online last night and did alot of research on PubMed for Medline. There were several articles on stap. myoclon. but I can't access them. I am going to try and order them from my local library. If I get them I can mail you copies.

Several talked about great success with cutting the muscle but that still sounds too scary. One talked about the Botox injections--sounds better.

I'll let you know when (and if) I get them. It probably takes a couple weeks.

Take care and stay positive.
K.

[Twiztid]

Do you guys experience Hyperacusis as well, or "sensitivity to noise"

See "My Story" I posted awhile ago for an explanation on my problems, and lemme know what you think.

My doctor won't send me anywhere else, as I have seen 4 ear doctors and I have already tried TMJD treatment with no luck... My doctor put me on Celexa (SSRI) but I stopped because I don't feel it is the problem.. and I didn't like how I felt on them, and it made NO DIFFERENCE with my ear issues.

[Lisa]

Twiz, sorry it took so long to reply. I have sensitivity to noise, and if i am rembering correctly Karen also does.

I am however concerned that your Doctor won't send you somewhere else. As it is probably within your best benefit to concider seeing a neuroligist.

If your family Doctor isn't doing the job you hope, then I seriously reccomend the possibility of seeing another doctor, or seeing if one of the ent's will refer you to a neuroligist.

I have been trying several different medications to see where i find releif, and so far, I haven't had much success. I was taking clonazapam, and have just quit, and am noticing more sensitivity to noise, but that can also be concidered a symptom of withdrawl.

Can you explain to me a little more about your sensitivity to noise? What sort of things set it off for you?

Please keep in touch

Lisa

[Ricochet]

I am also very sensitive to noise. One ENT says I have hyperacusis and the other one says I don't. I think I have it somewhat in my left ear but I have the popping/crackling in my right ear. STRANGE!

I have been seeing a Neurologist and he believes it is the Stapedial Myoclonus. He started me on Clonazepam and that helped a little but not much. Next visit he added another anti seizure med call Trileptal and cut the clonazepam dosage in half.

Since I have been on this combination I have noticed great improvement in the popping. In the past 2 weeks I have had almost no popping!

Good luck and definately find a doctor that will listen to you and work with you in solving this rare disorder..