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Hearing Disorders Message Board


Hearing Disorders Board Index


Lib,

I have been following this thread and your story as well as others for some time now. I was hoping you might be able to give some advise if your still out there. I, like many others have been suffering with many ear symptoms for a long time with very little help from any doctors. I have been misdiagnosed and treated for many things that I don't have. It's been extremely frustrating and I need some concrete answers. I know you and others have received a lot of help from sismanis and poe. I have contacted them but have not made an appointment due to their location (I am in IL). So far I have been diagnosed with a sinus infection, occipital neuritis, tmj, depression and allerfies. I've had a brain MRI and a CT scan of the sinuses which all came back normal. Each of these treatments were months long. I did see a specialist (ENT) in Iowa who diagnosed me with palatal myoclonus and I received botox injections into the palate. This relieved the clicking in my left ear only. The other symptoms still remain. Here goes: ear pain and pressure, headaches (right side mainly, temple worse), ears popping/crackling on their own and when yawning and swallowing, autohpony that comes and goes and can usually be corrected when leaning forward, stiffness in neck, shoulders and jaw, fatigue, lightheadedness, throbbing nostrils scalp sensitivity, clicking noises when speaking , and ears crackle with loud sounds. I know, it seems ridiculous to have so many symptoms. You seem like your very well versed in this area. Do you think either of the doctors could help me. I'm desperate. Your input would be greatly appreciated. Thank you for sharing your experience with all of us, it helps tremendously.

Jen:)
[QUOTE=jennifer24;3195987]Lib,

I have been following this thread and your story as well as others for some time now. I was hoping you might be able to give some advise if your still out there. I, like many others have been suffering with many ear symptoms for a long time with very little help from any doctors. I have been misdiagnosed and treated for many things that I don't have. It's been extremely frustrating and I need some concrete answers. I know you and others have received a lot of help from sismanis and poe. I have contacted them but have not made an appointment due to their location (I am in IL). So far I have been diagnosed with a sinus infection, occipital neuritis, tmj, depression and allerfies. I've had a brain MRI and a CT scan of the sinuses which all came back normal. Each of these treatments were months long. I did see a specialist (ENT) in Iowa who diagnosed me with palatal myoclonus and I received botox injections into the palate. This relieved the clicking in my left ear only. The other symptoms still remain. Here goes: ear pain and pressure, headaches (right side mainly, temple worse), ears popping/crackling on their own and when yawning and swallowing, autohpony that comes and goes and can usually be corrected when leaning forward, stiffness in neck, shoulders and jaw, fatigue, lightheadedness, throbbing nostrils scalp sensitivity, clicking noises when speaking , and ears crackle with loud sounds. I know, it seems ridiculous to have so many symptoms. You seem like your very well versed in this area. Do you think either of the doctors could help me. I'm desperate. Your input would be greatly appreciated. Thank you for sharing your experience with all of us, it helps tremendously.

Jen:)[/QUOTE]

hi jen,
i can relate to a ton if not almost all symptoms. one thing you need to figure out is do you have true autophony? do you hear your voice loud like a megaphone? i do think dr poe and sismanis can get to the bottom, a huge clue here is that the botox helped, it would not help in a case of p e t and botox can actually cause pet if the muscle is frozen too much. the fact that you react to outside sounds is another clue, i did too, dr poe said that is not a p e t symptom. i would put money on myoclonus. tell me jen how did this all start for you? i would like to compare notes.
Thanks!
libby
[QUOTE=lib;3453466]absolutley! yes the middle ear muscles can spasm causing all these symptoms.[/QUOTE]

Lib - I've got crackling in both ears, its caused by swallowing, opening and closing my mouth wide, yawning and sometimes head movements. My doctor says its ETD, but its been 3 months and I still have the problem. The clicks are short and sharp sounding. Does this sound like ETD or a myoclonus to you? What tests do the doctors do to differentiate? Things that make me think its ETD are it started when i had an ear infection and cold 3 months ago and apparently ETD can take a long time to resolve. Things that make me think its myoclonus, the sound feels / sounds to me like its originating at the ear drum, its a sharp snappish crackle type sound like crinckling newspaper. There are no other ETD symptoms like pressure problems and i can do valsalva easily. However I'm not sure its myoclonus as its not affected by sounds, and only occurs when i actively swallow, or tense muscles in the ear area. Let me know what you think and what I should tell teh ENT to check next time i see him.

Thanks





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