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    Old 01-03-2004, 04:51 PM   #1
    lib
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    subs! what now?

    hi,
    not sure if you saw my post back before i left. my tests did not show which ear. just refered to the positional nystagmus. i did call the nuerotoligist and asked him if it could be bppv, he said no. he had already told me he did not think i was sick enough for lab or v.n., i wonder it was a rough time, he also said he did not think meineres was likley, and when i talked to him this last time he said i could have it but there is nothing to support that. i am at a loss i dont know what is left. he told me to let nature take its course. i wonder if i need to see a neuroligist.my mri came back normal, but wonder if someone is missing something. what other vestibular disorders are there? do you think eustation tube dysfunction could cause nystagmus? or dizziness or motion sickness? thanks subs! hope you had a happy new year! lib

     
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    Old 01-03-2004, 08:16 PM   #2
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    Cool Re: subs! what now?

    Quote:
    Originally Posted by lib
    hi,
    not sure if you saw my post back before i left. my tests did not show which ear. just refered to the positional nystagmus. i did call the nuerotoligist and asked him if it could be bppv, he said no. he had already told me he did not think i was sick enough for lab or v.n., i wonder it was a rough time, he also said he did not think meineres was likley, and when i talked to him this last time he said i could have it but there is nothing to support that. i am at a loss i dont know what is left. he told me to let nature take its course. i wonder if i need to see a neuroligist.my mri came back normal, but wonder if someone is missing something. what other vestibular disorders are there? do you think eustation tube dysfunction could cause nystagmus? or dizziness or motion sickness? thanks subs! hope you had a happy new year! lib
    Hi

    ...not sure if you saw my post back before i left."...

    Do not recall it.

    ..."eustation tube dysfunction could cause nystagmus? "...

    Not likely---but can result in in dizziness/motion sickness in some people---but the "positional nystagmus"---is usually caused by a vestibular problem---not always---but in just about 70-80%---yep they are great on---saying just wait it out---if your MRI came back normal---and just about all of them do---it is more then likely not a central problem, i.e. brain---which is extremly remote to begin with--how long has this been going on???


     
    Old 01-04-2004, 07:31 AM   #3
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    Re: subs! what now?

    Quote:
    Originally Posted by Subs30
    Hi

    ...not sure if you saw my post back before i left."...

    Do not recall it.

    ..."eustation tube dysfunction could cause nystagmus? "...

    Not likely---but can result in in dizziness/motion sickness in some people---but the "positional nystagmus"---is usually caused by a vestibular problem---not always---but in just about 70-80%---yep they are great on---saying just wait it out---if your MRI came back normal---and just about all of them do---it is more then likely not a central problem, i.e. brain---which is extremly remote to begin with--how long has this been going on???

    hi,
    well i started sept1, i was motion sick all night, then i got a cold and 3 weeks later the dizzy spells ans motionsickness, all of oct and most of nov. i now just have the falling back or feeling weird when i lay down. i still have the popping and crackling in the ears and i can hear my heart beat in my right ear. i have been having twitches and spasms around my head also, i am not sure if this is all the stress and worry.
    i feel like i am close to a mental break down.
    the heart beat think really scares me.
    and when he said, let nature take its course i am concered he is waiting for it to get worse, i am scared he is waiting to see if it developes into mieneres. what are the chances? subs what would you do? thank you for all you have done! lib

     
    Old 01-04-2004, 09:30 AM   #4
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    Cool Re: subs! what now?

    Hi Lib

    ..."now just have the falling back or feeling"....

    Sounds like an inner ear prob---and that you partially compensated---as for the heart beat in the right ear---exactly what I had--- The most common types of tinnitus are ringing or hissing ringing, whistling (high pitched hissing) and roaring (low-pitched hissing). Some persons hear chirping, screeching, or even musical sounds. Note however that tinnitus always consists of fairly simple sounds -- for example, hearing someone talking that no one else can hear would not ordinarily be called tinnitus -- this would be called an auditory hallucination---and in our case its called:

    Pulsatile tinnitus: people hear something resembling their heartbeat in their ear. The cause usually involves vascular or muscular causes---and with a infection of the inner ear system---it becomes very sensitive---so you get it or things like it---not unusual---at all!!!!!!

    ..."having twitches and spasms around my head also"....

    Pretty standard---with the vestibular system on one side screwed up---it is the thing that allows the muscles in your neck/head to position the head correctly---in space

    ...."have the popping and crackling in the ears"....

    Yep had them---would vary in intensity--but not unusal

    ..."am close to a mental break down"...

    Yep it can wear you down---but most---of it---is not knowing---the truth is if it is a peripheral vestibular prob--which the Doc thinks it is--and you have had all the other tests---which I think you have---it is "benign"---unpleasant--but benign

    ..."he said, let nature take its course i am concerned he is waiting for it to get worse, i am scared he is waiting to see if it develops into mieneres"......

    I would not think that would be the case at all---if he thought that---he would be running all kinds of tests "BIG TIME"---there would be just to much medical liability--BIG TIME--for him take take that kind of a chance with his livelihood.

    ..."what are the chances? subs what would you do?".....

    Menieres affects roughly 0.2% of the population--about 200 cases/100,000 persons in the United States, or in other words, about 0.2 % of the population has Meniere's disease.

    I think if he thought you had that he would tell you.

    There is no way of knowing for sure(not unusual with this junk)--but I think he thinks you got a "viral infection" which has affected/sensitized your semi-circular canals--and he is not ready to label it yet---also not unusual.


     
    Old 01-04-2004, 10:03 AM   #5
    lib
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    Re: subs! what now?

    Quote:
    Originally Posted by Subs30
    Hi Lib

    ..."now just have the falling back or feeling"....

    Sounds like an inner ear prob---and that you partially compensated---as for the heart beat in the right ear---exactly what I had--- The most common types of tinnitus are ringing or hissing ringing, whistling (high pitched hissing) and roaring (low-pitched hissing). Some persons hear chirping, screeching, or even musical sounds. Note however that tinnitus always consists of fairly simple sounds -- for example, hearing someone talking that no one else can hear would not ordinarily be called tinnitus -- this would be called an auditory hallucination---and in our case its called:

    Pulsatile tinnitus: people hear something resembling their heartbeat in their ear. The cause usually involves vascular or muscular causes---and with a infection of the inner ear system---it becomes very sensitive---so you get it or things like it---not unusual---at all!!!!!!

    ..."having twitches and spasms around my head also"....

    Pretty standard---with the vestibular system on one side screwed up---it is the thing that allows the muscles in your neck/head to position the head correctly---in space

    ...."have the popping and crackling in the ears"....

    Yep had them---would vary in intensity--but not unusal

    ..."am close to a mental break down"...

    Yep it can wear you down---but most---of it---is not knowing---the truth is if it is a peripheral vestibular prob--which the Doc thinks it is--and you have had all the other tests---which I think you have---it is "benign"---unpleasant--but benign

    ..."he said, let nature take its course i am concerned he is waiting for it to get worse, i am scared he is waiting to see if it develops into mieneres"......

    I would not think that would be the case at all---if he thought that---he would be running all kinds of tests "BIG TIME"---there would be just to much medical liability--BIG TIME--for him take take that kind of a chance with his livelihood.

    ..."what are the chances? subs what would you do?".....

    Menieres affects roughly 0.2% of the population--about 200 cases/100,000 persons in the United States, or in other words, about 0.2 % of the population has Meniere's disease.

    I think if he thought you had that he would tell you.

    There is no way of knowing for sure(not unusual with this junk)--but I think he thinks you got a "viral infection" which has affected/sensitized your semi-circular canals--and he is not ready to label it yet---also not unusual.

    thanks subs, i feel better already. i guess that is why he also at this point said i could eat or drink what ever i want. what other tests do they do, i had the eng, ecog,abr. i saw one that was an ohe? did you have that test?or something, it tests the hairs in the ear. if i could get this sticky feeling out of my ears i think i could calm down a bit. going next mon to another ent the nuerotoligist recomended for a second opinion on the sinus surgery, will beg him to help me figure this out. i wonder why he wont tell me what he thinks it is.will i have these positional nystagmus for life?
    thanks subs your the best! lib
    i have the muscle spasms on both sides, should that worry me?

    Last edited by lib; 01-04-2004 at 10:05 AM.

     
    Old 01-04-2004, 10:22 AM   #6
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    Cool Re: subs! what now?

    Hi Lib

    ..."i have the muscle spasms on both sides, should that worry me?"...

    I would not think so---had them on both sides---top---whatever

    Those are the standard test---seems like each Doc/Balance Center has some additional ones they have fallen in love with---if you search on vestibular test---you should see quite a few.....don't recall them all.....I had the MRI, ENG & Audiogram...kind of tests---and the "look deep into my eyes" follow the finger kind of tests, etc.....

    ..."i wonder why he wont tell me what he thinks"....

    They are all so cautious---guess they---have been burned--quite a bit.

    ..."have these positional nystagmus for life? "....

    No would not thinks so since it is a by product of the vestibular injury and when that heals---as most do---it should be gone---as in bye bye

    ..." nuerotoligist recomended for a second opinion on the sinus surgery"....

    Sure I would ask him.


     
    Old 01-04-2004, 11:58 AM   #7
    lib
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    Re: subs! what now?

    Quote:
    Originally Posted by Subs30
    Hi Lib

    ..."i have the muscle spasms on both sides, should that worry me?"...

    I would not think so---had them on both sides---top---whatever

    Those are the standard test---seems like each Doc/Balance Center has some additional ones they have fallen in love with---if you search on vestibular test---you should see quite a few.....don't recall them all.....I had the MRI, ENG & Audiogram...kind of tests---and the "look deep into my eyes" follow the finger kind of tests, etc.....

    ..."i wonder why he wont tell me what he thinks"....

    They are all so cautious---guess they---have been burned--quite a bit.

    ..."have these positional nystagmus for life? "....

    No would not thinks so since it is a by product of the vestibular injury and when that heals---as most do---it should be gone---as in bye bye

    ..." nuerotoligist recomended for a second opinion on the sinus surgery"....

    Sure I would ask him.

    hi,
    you are the best medicine! you said you are going back in the first quarter, what do you go back for?
    cant remember if you said you had regular tinnitis, not just the heartbeat thing, did it or all of it go away? today i am fortunate, i get to hear myself breath in my right ear! guess i know i am still alive! thanks subs! LIB
    P.S. how long would you let the swimmy head, falling back while laying down go, before you called the dr. again?

    Last edited by lib; 01-04-2004 at 12:01 PM.

     
    Old 01-04-2004, 03:02 PM   #8
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    Cool Re: subs! what now?

    Hi Lib

    I had the same one as you--Pulsatile tinnitus--heard my heartbeat in my ear(right) same as you---over time--comes back once in a "blue moon" now---but--prob will not happen to you---since I had a pre-existing ear prob--from a submarine incident-accident.

    ..."you are going back in the first quarter, what do you go back for?"....

    They just would like me to come back---to see---how I have progressed--and if it is all gone.

    ..."how long would you let the swim-my head, falling back while laying down go, before you called the dr. again"....

    About seven to eight months---went back---to ENT(not Univ of Penn N-Oto)---only thing he said was---well it taking a little longer---then we would like---smiled--and said---you seem to be getting better---that is when I went to the N-Oto's and their team at the Univ of Penn Balance Center---and they said---hey---your compensation is being slowed down by your eye probs---and you need to get to a Nuero-Optometrist and make sure your glasses are correct---which they were not---fixed that--and then---compensation progress improved.

    The swim-my head feeling is just a by-product--of a very sensitive vestibular system---from the infection---if there is no other issues---like eyes---for me---it should go away when the vestibular system is healed and you complete your VRT stuff.

    :cooL:

     
    Old 01-04-2004, 03:17 PM   #9
    lib
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    Re: subs! what now?

    Quote:
    Originally Posted by Subs30
    Hi Lib

    I had the same one as you--Pulsatile tinnitus--heard my heartbeat in my ear(right) same as you---over time--comes back once in a "blue moon" now---but--prob will not happen to you---since I had a pre-existing ear prob--from a submarine incident-accident.

    ..."you are going back in the first quarter, what do you go back for?"....

    They just would like me to come back---to see---how I have progressed--and if it is all gone.

    ..."how long would you let the swim-my head, falling back while laying down go, before you called the dr. again"....

    About seven to eight months---went back---to ENT(not Univ of Penn N-Oto)---only thing he said was---well it taking a little longer---then we would like---smiled--and said---you seem to be getting better---that is when I went to the N-Oto's and their team at the Univ of Penn Balance Center---and they said---hey---your compensation is being slowed down by your eye probs---and you need to get to a Nuero-Optometrist and make sure your glasses are correct---which they were not---fixed that--and then---compensation progress improved.

    The swim-my head feeling is just a by-product--of a very sensitive vestibular system---from the infection---if there is no other issues---like eyes---for me---it should go away when the vestibular system is healed and you complete your VRT stuff.

    :cooL:
    hi,
    no eye problems as i got a new prescription in oct.
    no vrt at this point either, he never suggested that for me.
    he said he did not think i was sick enough for lab or v.n., could a different virus or infection be the reason?
    i am scared i have something else that no one is finding, i cant imagine just e.tubes doing all this. the fact that a specialist does not know keeps scareing me to death. and the fact they could not even tell which ear from the tests. at least you had a diagnosis, i dont even have that to go on. i hope and pray this ent i see next monday will step in and really help me! if the dr.s helped as much as you we would all be golden! thanks subs! lib

     
    Old 01-04-2004, 07:40 PM   #10
    Subs30
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    Cool Re: subs! what now?

    Hi Lib

    ...could a different virus or infection be the reason?".....

    I think he thinks that what ever caused the initial bout(prob a virus)--has left and that you are well along in the compensation process---compensation as defined here:

    (preapproved by Mod1)

    [url]http://www-personal.umich.***/~boismier/Compensa.htm[/url]

    And the medical research has not pinned down the exact virus yet---they think its the---herpes simplex virus

    ----i.e.,---The condition is thought to result from a selective inflammation of the vestibular system, presumably of viral origin. The facts that the disorder often has a viral prodrome, that it occurs in epidemics, that it may affect several members of the same family, and that it occurs more commonly in spring and early summer all support a viral cause----studies have found atrophy of the vestibular nerve and the vestibular sensory epithelium that is similar to the pathological findings with known viral disorders of the inner ear, such as measles and mumps

    ---but they do not know for sure---yet.

    ..."that a specialist does not know keeps scareing me to death. and the fact that they could not even tell which ear from the tests.".....

    Not at all unusual for this medical area---where there is no way to do direct testing....unless they catch it/test before compensation is in progress---the tests that they do run don't show a heck of a lot.

    ..."at least you had a diagnosis"...

    Yes---after 13 months--of this junk!

    ---they guessed with a 90% probability of being correct.


     
    Old 01-05-2004, 07:42 AM   #11
    lib
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    Re: subs! what now?

    Quote:
    Originally Posted by Subs30
    Hi Lib

    ...could a different virus or infection be the reason?".....

    I think he thinks that what ever caused the initial bout(prob a virus)--has left and that you are well along in the compensation process---compensation as defined here:

    (preapproved by Mod1)

    [url]http://www-personal.umich.***/~boismier/Compensa.htm[/url]

    And the medical research has not pinned down the exact virus yet---they think its the---herpes simplex virus

    ----i.e.,---The condition is thought to result from a selective inflammation of the vestibular system, presumably of viral origin. The facts that the disorder often has a viral prodrome, that it occurs in epidemics, that it may affect several members of the same family, and that it occurs more commonly in spring and early summer all support a viral cause----studies have found atrophy of the vestibular nerve and the vestibular sensory epithelium that is similar to the pathological findings with known viral disorders of the inner ear, such as measles and mumps

    ---but they do not know for sure---yet.

    ..."that a specialist does not know keeps scareing me to death. and the fact that they could not even tell which ear from the tests.".....

    Not at all unusual for this medical area---where there is no way to do direct testing....unless they catch it/test before compensation is in progress---the tests that they do run don't show a heck of a lot.

    ..."at least you had a diagnosis"...

    Yes---after 13 months--of this junk!

    ---they guessed with a 90% probability of being correct.

    thanks subs,
    i work in a salon and i am terrified i will get struck again. i have had problems with both ears, is it possible both ears were involved? were they able to tell you which ear it was for you? i think you said but cant remember.
    is there anyway i can tell on my own if the nystagmus is still there? do you work? were you able to work through this whole mess? thanks subs! lib

     
    Old 01-05-2004, 08:52 AM   #12
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    Re: subs! what now?

    Quote:
    Originally Posted by lib
    thanks subs,
    i work in a salon and i am terrified i will get struck again. i have had problems with both ears, is it possible both ears were involved? were they able to tell you which ear it was for you? i think you said but cant remember.
    is there anyway i can tell on my own if the nystagmus is still there? do you work? were you able to work through this whole mess? thanks subs! lib

    Hi lib,

    Sorry to but in on your thread. I feel for you and the uncertainty that comes with no diagnosis. I felt that for 8 months, and (you can verify with my husband!) I thought I was going to come unglued. You start to really fear something serious may be wrong, even though the MRI and other tests show everything is normal. Thank god my ENG finally showed something. I've since learned that this inner ear junk can really mess with everything, including making you feel the anxiety you're currently feeling. Keep talking to Subs -- it seems through this thread you're realizing, as we all do, what a genius he(?) is. And keep pursuing the docs and your diagnosis. Let me know how the appointment with the new one goes today.

    Just as a funny side note, my husband and I were watching a show on the Science channel last night about the wonders of the human body, and they had a segment about the "balance system," which was the inner ear. They talked about how sensitive it is, how inputs to the brain (especially visually) are so important to it, and how it affects astronauts who stay in weightlessness for long periods. I guess when they come back to earth they get to feel like we all do for a few weeks (dizzy, nauseated, disoriented). Oddly enough I took some comfort in that . . . I guess that's the key to these boards; when we hear something like that and say "welcome to my world," all the people here completely get the joke!

    Try to have a good day. You're working on zeroing in, so keep it up until you get your answers.

    Terri

     
    Old 01-05-2004, 10:17 AM   #13
    lib
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    Re: subs! what now?

    Quote:
    Originally Posted by Barnsley
    Hi lib,

    Sorry to but in on your thread. I feel for you and the uncertainty that comes with no diagnosis. I felt that for 8 months, and (you can verify with my husband!) I thought I was going to come unglued. You start to really fear something serious may be wrong, even though the MRI and other tests show everything is normal. Thank god my ENG finally showed something. I've since learned that this inner ear junk can really mess with everything, including making you feel the anxiety you're currently feeling. Keep talking to Subs -- it seems through this thread you're realizing, as we all do, what a genius he(?) is. And keep pursuing the docs and your diagnosis. Let me know how the appointment with the new one goes today.

    Just as a funny side note, my husband and I were watching a show on the Science channel last night about the wonders of the human body, and they had a segment about the "balance system," which was the inner ear. They talked about how sensitive it is, how inputs to the brain (especially visually) are so important to it, and how it affects astronauts who stay in weightlessness for long periods. I guess when they come back to earth they get to feel like we all do for a few weeks (dizzy, nauseated, disoriented). Oddly enough I took some comfort in that . . . I guess that's the key to these boards; when we hear something like that and say "welcome to my world," all the people here completely get the joke!

    Try to have a good day. You're working on zeroing in, so keep it up until you get your answers.

    Terri
    hi,
    unglued.... i am a basket case! the appointment is next mon, not sure if i will get alot out of this guy i am praying he can help. the nuerotoligist suggested him for a second opinion on the sinus surgery but i am going to try to get him to help me. subs has been a lifesaver, so have you and many others on this board. i also remember reading some time ago on an aol search about alcohol and it not decompensating, cant find it again but will keep looking. did you ever have the feeling of falling back when you were trying to sleep? thanks! have a good one! lib

     
    Old 01-05-2004, 10:43 AM   #14
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    Re: subs! what now?

    Hi Lib, know the feeling of becoming unglued! I get the fallling feelings yes in bed, as if am falling in mid air, through space, this the same as you? I can't work Lib apart from temporary short term things. My life is v much on hold. Keep smiling. This board is fantastic and makes us all realise we are not alone xxx

     
    Old 01-05-2004, 11:50 AM   #15
    lib
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    Re: subs! what now?

    Quote:
    Originally Posted by Emsybobs
    Hi Lib, know the feeling of becoming unglued! I get the fallling feelings yes in bed, as if am falling in mid air, through space, this the same as you? I can't work Lib apart from temporary short term things. My life is v much on hold. Keep smiling. This board is fantastic and makes us all realise we are not alone xxx
    hi,
    i get the feeling like my head is falling, sometimes i just get the feeling like my head is swimming cant describe that one.
    were you or did you get grommets? i am sorry you are unable to work, i dont know how i have managed to work. i hate going. i have only missed a few days. but have been miserable most of the time.
    you were diagnosed with lab correct? what were your first symptoms?
    hope today is the beginning of the best! lib

     
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