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    Old 09-18-2007, 06:50 PM   #16
    lib
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    Re: crackling in my ears

    Quote:
    Originally Posted by jennifer24 View Post
    Lib,

    As soon as I receive the info from Dr. Poe about the newer procedure for palatal myoclonus I will let you know. I have had this for about a year now although the autohpony started earlier, about 19 months ago. I really don't know what caused it-wish I did. The autophony prior to the injections is the same as it was 19 months ago. I just had a period where it went away prior to the injections. It definately cripples you in conversation! It sounds as if your voice and breath are amplified and you can't determine how loud or soft you are speaking or how clearly. Are you still having any symptoms?

    Jen
    Hi jen,
    I do have some symptoms but my worst symptoms came from the middle ear, i had the tendons cut and that helped a ton. my other symptoms are from the etube, it spasms and i get snapping, popping and crackling in the ear, with talking and swallowing when its acting up, so its not constant. i also have a snapping sound from my palate sometimes, do you get that? what other symptoms do you get other than autophony and cracking? are you able to see the palate move?
    lib

     
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    Old 09-19-2007, 10:00 AM   #17
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    Re: crackling in my ears

    Quote:
    Originally Posted by lib View Post
    Hi jen,
    I do have some symptoms but my worst symptoms came from the middle ear, i had the tendons cut and that helped a ton. my other symptoms are from the etube, it spasms and i get snapping, popping and crackling in the ear, with talking and swallowing when its acting up, so its not constant. i also have a snapping sound from my palate sometimes, do you get that? what other symptoms do you get other than autophony and cracking? are you able to see the palate move?
    lib
    Yes, I get a snapping sound from my palate. It feels like a quick pull in my ears (now only the left since botox) and sounds like a snap. It's only brought on when talking or blowing out air as if blowing out candles on a birthday cake. It is not constant, I have to talk to trigger it (thank God. I don't get the clicking noise (snap) when saying M's or N's though. I'ts definately the palate. I cannot see the palate move myself because I can't talk while looking in the mirror with my mouth open but I did see it on the monitor twice while being scoped. My other symptoms are ear pressure and headaches, stiffness in neck, shoulders and jaw, fatigue and lightheadedness. The ENT that diagnosed the pm said he also thought I have allergic rhinitis and gave me a nasal spray for it. I immediately declined because those steroid sprays can make the autophony worse but he said it wasn't steroid based so I gave it a shot and it actually helped the headaches and jaw stiffness. I looked it up on line though and some people have had some pretty scary side effects from it so that makes me nervous. They said it caused depression, mood swings, sleeplessness, dizziness and weight gain. The first 4 I can definately do without, been there and still there with the lightheadedness. My husband said I should continue the spray since its helping and stop it only if I get those symptoms. I'ts hard for him to understand all we've gone through though even though he tries.

    Talk to ya soon

    Jen

     
    Old 09-19-2007, 07:17 PM   #18
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    Re: crackling in my ears

    hi jen,
    so you can hear the snap come from the palate, can any one else ever hear it. mine is the same, i have to talk or swallow to trigger it, but its not constant. i have periods where i dont really have symptoms and dayd where it is more active. they can not see mine move, but hear it snap. my ear will pop really loud sometimes when i talk or swallow. they think a virus damaged some nerves causing this problem. will you have botox again? i had terrible ear pressure but its eased up over time, plus i cut the tendons in the middle ear.
    talk to you soon

     
    Old 09-19-2007, 07:20 PM   #19
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    Re: crackling in my ears

    jen,
    ps....i have shoulder and jaw issues, tmj they say, and neck issues.....could be a link??? never know....what nasal spray did he give you?
    lib

     
    Old 09-20-2007, 12:28 PM   #20
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    Re: crackling in my ears

    Quote:
    Originally Posted by lib View Post
    hi jen,
    so you can hear the snap come from the palate, can any one else ever hear it. mine is the same, i have to talk or swallow to trigger it, but its not constant. i have periods where i dont really have symptoms and dayd where it is more active. they can not see mine move, but hear it snap. my ear will pop really loud sometimes when i talk or swallow. they think a virus damaged some nerves causing this problem. will you have botox again? i had terrible ear pressure but its eased up over time, plus i cut the tendons in the middle ear.
    talk to you soon

    Hi Lib,

    we both have similar names and similar problems.
    I have been keeping tabs on all your posts and I have read your posts on other websites also. I never got in touch before because I did'nt want to bother you.

    I really need your advice, in 2 weeks time I am booked in to have my stapedial and tensor tympani tendons sectioned. I am really nervous because this is the first time, one of your posts reports negative feedback, you mention you still have some symptoms, so the big question is as asked by Nik, in what way has cutting those tendons helped a ton???
    what were your symptoms before the surgery?

    I think I get your symptoms now, but have to say I am a little confused.

    libby

    Last edited by libby79; 09-20-2007 at 12:29 PM.

     
    Old 09-21-2007, 07:07 AM   #21
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    Re: crackling in my ears

    Quote:
    Originally Posted by lib View Post
    jen,
    ps....i have shoulder and jaw issues, tmj they say, and neck issues.....could be a link??? never know....what nasal spray did he give you?
    lib
    Hi Lib,

    Well, to anwer your questions, yes, everyone can hear the snap even the doctors. Thats how he said he was confident that it was palatal and not middle ear myoclonus (other than seeing it on the monitor). If there is a lot of background noise the clicking doesn't bother me as much but when it's quiet, like when I'm reading a bedtime story to my 5 yr. old, it's very distracting. I'm not sure about having botox again, it has really altered my speech. The right side of my palate is completely paralyzed and the left pretty close. When I talk now it almost sounds as if I'm talking as a deaf person would. Don't know if you know what that sounds like but thats the best description I can think of. It's almost as socially isolating as the autophony. We'll have to wait and see what happens when the botox wears off. If the clicking is still gone I will probably consider it at a lower dose. I would also like to hear what dr. poe's newest permanent treatment is but I still have not received his info. I'm sure they're busy at the office. About TMJ-before I was diagnosed with pm, I was diagnosed with tmj. One of my symptoms was jaw pain and another headaches so I guess they assumed tmj. I was fitted with a mouthpiece and treated for 4 months with it. Honestly, I didn't really see a big change in any of my symptoms and it really messed up my bite. My teeth don't match up like they used to. But that doesn't mean it wouldn't help you. The nasal spray the ent prescribed is called astelin. 2 sprays in each nostril 1 time a day. I have noticed an improvement in my jaw tightness and my headaches. Again though, I'm nervous about the side effects. So far, just a little dizziness, fatigue(So I take it in the pm) and a strange eye twitch????

    I hope one day we are both symptom free.

    Jennifer

     
    Old 09-21-2007, 02:19 PM   #22
    lib
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    Re: crackling in my ears

    Quote:
    Originally Posted by libby79 View Post
    Hi Lib,

    we both have similar names and similar problems.
    I have been keeping tabs on all your posts and I have read your posts on other websites also. I never got in touch before because I did'nt want to bother you.

    I really need your advice, in 2 weeks time I am booked in to have my stapedial and tensor tympani tendons sectioned. I am really nervous because this is the first time, one of your posts reports negative feedback, you mention you still have some symptoms, so the big question is as asked by Nik, in what way has cutting those tendons helped a ton???
    what were your symptoms before the surgery?

    I think I get your symptoms now, but have to say I am a little confused.

    libby
    hi libby,
    i am a libby too!!! i did not see where nik asked this question. dont take my report as negative feedback, you see i have middle ear and e tube myoclonus.
    the surgery does not help with e tube or palatal......in my posts i was very clear about the constant torture the middle ear tendons cause, and cutting them relieved those symptoms, my ears reacting to outside sounds, my own voice, a simple cough or closing a door.......i could barley function. my symptoms are all over my posts....there are so many i have thankfully forgotten some....fel free to pull them up.....and you will also read how much and how grateful i was to have the surgery.
    good luck
    libby

     
    Old 09-21-2007, 02:32 PM   #23
    lib
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    Re: crackling in my ears

    Quote:
    Originally Posted by jennifer24 View Post
    Hi Lib,

    Well, to anwer your questions, yes, everyone can hear the snap even the doctors. Thats how he said he was confident that it was palatal and not middle ear myoclonus (other than seeing it on the monitor). If there is a lot of background noise the clicking doesn't bother me as much but when it's quiet, like when I'm reading a bedtime story to my 5 yr. old, it's very distracting. I'm not sure about having botox again, it has really altered my speech. The right side of my palate is completely paralyzed and the left pretty close. When I talk now it almost sounds as if I'm talking as a deaf person would. Don't know if you know what that sounds like but thats the best description I can think of. It's almost as socially isolating as the autophony. We'll have to wait and see what happens when the botox wears off. If the clicking is still gone I will probably consider it at a lower dose. I would also like to hear what dr. poe's newest permanent treatment is but I still have not received his info. I'm sure they're busy at the office. About TMJ-before I was diagnosed with pm, I was diagnosed with tmj. One of my symptoms was jaw pain and another headaches so I guess they assumed tmj. I was fitted with a mouthpiece and treated for 4 months with it. Honestly, I didn't really see a big change in any of my symptoms and it really messed up my bite. My teeth don't match up like they used to. But that doesn't mean it wouldn't help you. The nasal spray the ent prescribed is called astelin. 2 sprays in each nostril 1 time a day. I have noticed an improvement in my jaw tightness and my headaches. Again though, I'm nervous about the side effects. So far, just a little dizziness, fatigue(So I take it in the pm) and a strange eye twitch????

    I hope one day we are both symptom free.

    Jennifer
    hi jennifer,
    yes i was treated for tmj, noticed nothing and my bite is now off too. i get eyelid twitchmes and other strange spasms as well. the a\funny thing is, they can hear my palate snaip, i definately have it in there, but i also have it in the middle ear, i had to cut the tendons because my ears reacted to my voice and outside sounds. i was refering to the spasms for a while as autophoney because i did not know what else it could be. it was dr poe that figured that part out. i am very curious as to the ideas he has on this, in 04 when i had surgery with him for a possible patulous tube, the only option then was botox.....i am so grateful he is looking into other treatments.....hes an incredible dr and i believe he will find treatments and cures for several problems in his carrer.....i hope we are both fixed on day soon.
    libby

     
    Old 09-21-2007, 02:43 PM   #24
    lib
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    Re: crackling in my ears

    Quote:
    Originally Posted by NMP79 View Post
    Lib,

    You say you were operated on for PET, but it turns out you don't have PET, if you were originally diagnosed with PET, you must have autophony along with the clicking.
    The big question is, how exactly has cutting those tendons helped a ton?

    Has the autophony gone?
    The clicking is not so bad as before?

    You mention you still have some symptoms, but not as bad as before your op?

    I would be interested to know what you have to say.

    Nik
    nik,
    if you read my posts my whole story is there, i will try to give the short story......i had so many horrific symptoms....and one i described and called autophony, i would get a rough echo type of sound after i would talk, it at the time seemed like it was my voice, now my drs and i relize it was the muscle in the middle ear spasming, when it would do this my voice also seemed louder it had an echoing vibration to it, a reverb....so yes we though it was pet....i had the surgery, to my surprise.....and dr poes it did not help, the very next morning i was in his office and he could still see my eardrum move, with deep breathing and talking, turns out i was using muscles in my face and that was triggering the spasms as well.....he knew then mine was muscular.....from there i had the tendons cut....that took care of almost all of the symptoms, except for a few that were coming from other muscles that have myoclonus, the tensor veli palatini....that is a muscle in the etube that attaches to the palate, it would still snap and such when i talked or swallowed......
    sorry i did not see your post and libby pointed out you had addressed me.....
    again, my story is long and confusing but it is all here on the board.....
    i will also say to all interested.....i am not the only person who was thought to have p e t and turns out it was myoclonus.....i know a few others. these conditions are hard to diagnose, and even dr poe told me myoclonus can cause patulous like symptoms.
    i hope i have answered clear enough.

     
    Old 09-21-2007, 03:07 PM   #25
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    Re: crackling in my ears

    Quote:
    Originally Posted by lib View Post
    hi jennifer,
    yes i was treated for tmj, noticed nothing and my bite is now off too. i get eyelid twitchmes and other strange spasms as well. the a\funny thing is, they can hear my palate snaip, i definately have it in there, but i also have it in the middle ear, i had to cut the tendons because my ears reacted to my voice and outside sounds. i was refering to the spasms for a while as autophoney because i did not know what else it could be. it was dr poe that figured that part out. i am very curious as to the ideas he has on this, in 04 when i had surgery with him for a possible patulous tube, the only option then was botox.....i am so grateful he is looking into other treatments.....hes an incredible dr and i believe he will find treatments and cures for several problems in his carrer.....i hope we are both fixed on day soon.
    libby
    Hello Libby,

    O.K., so I received the info from Dr. Poe and I have to say I'm more confused now than ever! In my first email to him I told him I had pm and he said botox was a good starting point to identify the problem and get a correct diagnosis. In my second email to him I must have mentioned that the clicks were triggered by speech (although I thought I mentioned that they were brought on by talking before) and now he says botox was not the way to go. He expained the myoclonus causes spontaneous clicking not clicking just related to speaking. He says that the click is more likely related to palatal or et movemens with speech and that surgery or speech therapy would help. Maybe I should bite the bullet and just make an appt with him. I wonder if insurance will cover the traveling costs?

    Well, have a nice weekend!

    Jen

     
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    Old 09-21-2007, 07:19 PM   #26
    lib
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    Re: crackling in my ears

    Quote:
    Originally Posted by jennifer24 View Post
    Hello Libby,

    O.K., so I received the info from Dr. Poe and I have to say I'm more confused now than ever! In my first email to him I told him I had pm and he said botox was a good starting point to identify the problem and get a correct diagnosis. In my second email to him I must have mentioned that the clicks were triggered by speech (although I thought I mentioned that they were brought on by talking before) and now he says botox was not the way to go. He expained the myoclonus causes spontaneous clicking not clicking just related to speaking. He says that the click is more likely related to palatal or et movemens with speech and that surgery or speech therapy would help. Maybe I should bite the bullet and just make an appt with him. I wonder if insurance will cover the traveling costs?

    Well, have a nice weekend!

    Jen
    hi jen,
    yes i think you should see him, it will help with a lot of questions. my insurance covered my visit but not travel costs.....my myoclonus is related to movement....im not text book. see him!
    this like p e t and other issues is not easy to pinpoint and treat.
    let me know!
    lib

     
    Old 09-23-2007, 07:36 PM   #27
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    Re: crackling in my ears

    Quote:
    Originally Posted by lib View Post
    hi jen,
    yes i think you should see him, it will help with a lot of questions. my insurance covered my visit but not travel costs.....my myoclonus is related to movement....im not text book. see him!
    this like p e t and other issues is not easy to pinpoint and treat.
    let me know!
    lib
    Hi Lib,

    Hey, I was wondering if you ever tried sound therapy. Heard it might help some of our symptoms. By the way I really do think its time I made an appt with poe even if the airfare has to come out of my own pocket. Talk to ya later.

    Jen

     
    Old 09-24-2007, 09:23 AM   #28
    lib
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    Re: crackling in my ears

    Quote:
    Originally Posted by jennifer24 View Post
    Hi Lib,

    Hey, I was wondering if you ever tried sound therapy. Heard it might help some of our symptoms. By the way I really do think its time I made an appt with poe even if the airfare has to come out of my own pocket. Talk to ya later.

    Jen
    hi jen,
    i have not tried sound therapy. if you see poe i would be interested to hear what he thinks of sound therapy for myoclonus.
    it cant hurt thats for sure!
    ttyl,
    lib

     
    Old 09-24-2007, 10:17 AM   #29
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    Re: crackling in my ears

    Quote:
    Originally Posted by lib View Post
    hi libby,
    i am a libby too!!! i did not see where nik asked this question. dont take my report as negative feedback, you see i have middle ear and e tube myoclonus.
    the surgery does not help with e tube or palatal......in my posts i was very clear about the constant torture the middle ear tendons cause, and cutting them relieved those symptoms, my ears reacting to outside sounds, my own voice, a simple cough or closing a door.......i could barley function. my symptoms are all over my posts....there are so many i have thankfully forgotten some....fel free to pull them up.....and you will also read how much and how grateful i was to have the surgery.
    good luck
    libby


    Lib,

    Thanks for the note.
    Next week I am having my right ear tensor tympani muscle cut, and then 8 weeks later, my ENT will either cut the stapedial tendon in the right ear also, or if I have relief of symptoms, I will have the same op in my left ear.

    I just got a little worried when you said you still had symptoms.

    What is autophony? I was going to type it into a search engine but I always forget to.

    Anyways, my sypmtoms are - clicking when swallowing and when I lay down and when eating and I have something else but there is no name for it, when I eat, it is very loud. Odd thing what I have, but hopefully after my op I will have relief.

    I am glad to learn youor op, helped you.

    Libby

    Last edited by libby79; 09-24-2007 at 10:17 AM.

     
    Old 09-24-2007, 01:53 PM   #30
    lib
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    Re: crackling in my ears

    Quote:
    Originally Posted by libby79 View Post
    Lib,

    Thanks for the note.
    Next week I am having my right ear tensor tympani muscle cut, and then 8 weeks later, my ENT will either cut the stapedial tendon in the right ear also, or if I have relief of symptoms, I will have the same op in my left ear.

    I just got a little worried when you said you still had symptoms.

    What is autophony? I was going to type it into a search engine but I always forget to.

    Anyways, my sypmtoms are - clicking when swallowing and when I lay down and when eating and I have something else but there is no name for it, when I eat, it is very loud. Odd thing what I have, but hopefully after my op I will have relief.

    I am glad to learn youor op, helped you.

    Libby
    Hi libby,
    autophoney is hearing your voice and breathing in your ear loud like a megaphone. my voice was louder but not like a megaphone. do not be discouraged if the stapedial needs to be clipped to, i had both in my right ear and onlt the tt in the left just to see even though my doc was confident it was both, and the stapedial still spasms......but with 3 out of 4 eliminated i have just lived with it as its soooo much better, i can cut it any time so i guess that is also why i tolerate it, if it acts up.....i threaten to ax it.....kind of a mind over matter thing.
    good luck and let us know how you do

     
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