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Re: What is IT?
Jan 26, 2005
hi lib, i have found you again! i don't get the 'smacking' or 'clicking' sound when i blink or touch my face, like you do. It sounds like your facial muscles goes into spasm (the myoclonus) and is triggered or stimulated from your facial movements. Sounds like all of your facial muscles have become extremely sensitive. I wonder what originally started this for you? Seem to remember from your earlier posts that you originally had a viral illness- is that right?
I have two types of 'clicking' or 'smacking' noises in my ear, palate area. One type is the one i can initiate. When i press under my L earlobe or jawline the area clicks or snaps. This area feels uncomfortable and the souce of the trouble. It feels like the muscles that hold the ET tube together on this side have collapsed and will not hold the ET tube closed. The feeling is very uncomfortable, full, pressure and voice resonating up the back of the palate when i talk. Also a feeling of swelling at the back of the palate and tingly, tickilish feeling. The R side is OK most of the time.

The other type of noise is coming from the L back of palate and only happens now a couple of times a week. This seems to be a 'palatal myoclonus'. All of a sudden the area at the base of the ET tube or palate starts fluttering or lightly clicking at about 200 times a minute and can feel quite strange. Howver, it stops and then i may not get it again for a few more days.

My symptoms have been a bit more tolerable since christmas, although i don't know how long this 'break' will last. The severity of the symptoms is very unpredictable and my life enjoyment runs according to the symptoms. However, a few of the others are noticing a connection with drinking extra fluids and i have been automatically doing this due to the extreme hot weather and humidity over here in Oz. Maybe the extra fliud increases the volume of blood flowing to the area causing the ET tube to swell more and thereby improving the symptoms. The autophony is the MOst 'hellish' symptom for me. When I get a break from this i feel a whole lot better!

Lib, as you seem to have mainly myoclonus, maybe the extra fluid won't help you, i'm not sure. Also if anyone has high blood pressure and tries to increase their fliud volume dramatically, they need to take care. looking forward to your relplies. cc.
Re: What is IT?
Jan 26, 2005
[QUOTE=ccc123]hi lib, i have found you again! i don't get the 'smacking' or 'clicking' sound when i blink or touch my face, like you do. It sounds like your facial muscles goes into spasm (the myoclonus) and is triggered or stimulated from your facial movements. Sounds like all of your facial muscles have become extremely sensitive. I wonder what originally started this for you? Seem to remember from your earlier posts that you originally had a viral illness- is that right?
I have two types of 'clicking' or 'smacking' noises in my ear, palate area. One type is the one i can initiate. When i press under my L earlobe or jawline the area clicks or snaps. This area feels uncomfortable and the souce of the trouble. It feels like the muscles that hold the ET tube together on this side have collapsed and will not hold the ET tube closed. The feeling is very uncomfortable, full, pressure and voice resonating up the back of the palate when i talk. Also a feeling of swelling at the back of the palate and tingly, tickilish feeling. The R side is OK most of the time.

The other type of noise is coming from the L back of palate and only happens now a couple of times a week. This seems to be a 'palatal myoclonus'. All of a sudden the area at the base of the ET tube or palate starts fluttering or lightly clicking at about 200 times a minute and can feel quite strange. Howver, it stops and then i may not get it again for a few more days.

My symptoms have been a bit more tolerable since christmas, although i don't know how long this 'break' will last. The severity of the symptoms is very unpredictable and my life enjoyment runs according to the symptoms. However, a few of the others are noticing a connection with drinking extra fluids and i have been automatically doing this due to the extreme hot weather and humidity over here in Oz. Maybe the extra fliud increases the volume of blood flowing to the area causing the ET tube to swell more and thereby improving the symptoms. The autophony is the MOst 'hellish' symptom for me. When I get a break from this i feel a whole lot better!

Lib, as you seem to have mainly myoclonus, maybe the extra fluid won't help you, i'm not sure. Also if anyone has high blood pressure and tries to increase their fliud volume dramatically, they need to take care. looking forward to your relplies. cc.[/QUOTE]

hi cc,
yes a viral infection started this they think. but we will never know.
like you i have been doing better scince christmas and i had my second visit o nih today. i have a dx of palatal/ear myoclonus. i am going to have the left ear cut on the 15th. the tests i had today were ear, diff pressure tests and they cold determine it was myoclonus, also they watched fot p e t but it did not show, so they think myo is my prob. also, these tests could confuse for p e t and have to be done by someone who is very expeirenced.
the myo can create pet like symptoms.
hope you have an appt with your nt prof, ask about all of this too.
hoping the next surgey will make it almost livable!
take care,
lib





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