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Hi Lib:

The EB/CFS that I mentioned in my first posting is the autoimmune illness that I've been battling since 1996. I had a serious relapse with it and the PET symptoms started. That also took a long time to diagnose - almost a year. Like PET, most medical doctors don't know much about it. My situation does not improve when I put my head between my knees. Believe me, I tried it after some of you mentioned this helped you - nor does anything change when I lay down. At present, I am not so sensitive to sound nor am I experiencing autophony. This was more of a problem for me during the first few months and especially when my ENT tried the partial tube surgery. The tapping sound is not as pronounced either which was always at its worst when I was on the phone. The phone is still unpleasant. These symptoms were worse the first few months. My symptoms right now are the uncomfortable full feeling of air in both ears and the awful crackle I hear whenever I swallow. My other symptom is a motor or cat purr that I hear when my ear is cupped or placed against a pillow. It makes trying to sleep even more difficult because I am a side sleeper. I think it's always there, but that is when it is the most annoying. A Dr. Poe appointment is definitely something I'm seriously thinking about once I meet with my ENT again. I want his feedback on a few of these things I've learned from you and others on the board. I do live in Florida. Sarasota is across the state from me as I am on the east coast. I hope you have good luck with the ear place there. Thank you for your questions of interest, your help and knowledge and I wish you a safe trip. Let me know if you make it over to the east coast!
[QUOTE=Lea Gabel]Hi Lib:

The EB/CFS that I mentioned in my first posting is the autoimmune illness that I've been battling since 1996. I had a serious relapse with it and the PET symptoms started. That also took a long time to diagnose - almost a year. Like PET, most medical doctors don't know much about it. My situation does not improve when I put my head between my knees. Believe me, I tried it after some of you mentioned this helped you - nor does anything change when I lay down. At present, I am not so sensitive to sound nor am I experiencing autophony. This was more of a problem for me during the first few months and especially when my ENT tried the partial tube surgery. The tapping sound is not as pronounced either which was always at its worst when I was on the phone. The phone is still unpleasant. These symptoms were worse the first few months. My symptoms right now are the uncomfortable full feeling of air in both ears and the awful crackle I hear whenever I swallow. My other symptom is a motor or cat purr that I hear when my ear is cupped or placed against a pillow. It makes trying to sleep even more difficult because I am a side sleeper. I think it's always there, but that is when it is the most annoying. A Dr. Poe appointment is definitely something I'm seriously thinking about once I meet with my ENT again. I want his feedback on a few of these things I've learned from you and others on the board. I do live in Florida. Sarasota is across the state from me as I am on the east coast. I hope you have good luck with the ear place there. Thank you for your questions of interest, your help and knowledge and I wish you a safe trip. Let me know if you make it over to the east coast![/QUOTE]
hi lea,
the symptoms of tapping and motor car are definatley myoclonus symptoms as are the fullnes, i had these and severing the tendons helped get rid of it, no more tapping.
i am going to orlando and sarasota, tampa for vacation...no drs. in fact i think dr sismanis in richmond would be a good one for you to see, hes my doc, he did my surgery to sever the tendons and as well others. he could sort out the myoclonus symptoms.
where on the east coast are you?
cant wait i love fla and am considering moveing.
btw...they think a virus triggered my myoclonus, sounds like this should be investigated in you as well.....a clue!
lib





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