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    Old 11-06-2003, 07:27 AM   #1
    realbelle
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    Someone Help

    Hi, I need to hear from anyone that knows what this could of been. After a horrid day of bad bouncing, I finally got to bed. A few minutes after laying down, it felt like something exploded in the back of my head and then like I was spinning real fast. I opened my eyes and nothing was spinning but it scared me so bad that I could not go to sleep. I managed to get about 2 hrs sleep and now feel so very shakey and bouncing still. Subs, jtiegs--anyone have an idea? I am on month 7 of this monster. For the past week have been getting out and actually driving. Before bed, I did clean up the kitchen and vacumn--which I have not been able to do due to the looking down all the time. I don't know if that had anything to do with it or not. Am still scared so PLEASE help. Thanks, Belle

     
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    Old 11-06-2003, 08:41 AM   #2
    jtiegs
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    HI Belle,
    I am not sure to what degree the "explosion" was. Can you descibe it a bit more?

    What I think you may be talking about is something I deal with too. I wouldn't say mine feels like an explosion, but I get some really odd spells that come out of nowhere, they give the back of my head a really strong buzzing sensation. It doesn't set me into a major dizzy thing, but it's sort of jarring and disturbing. I have no idea what it is, but it feels like some kind of really bad brain misfire to me. When I had severe vertigo, I also had this sensation when the spins came on. However at that time, eyes opened or closed, the room was spinning. Now I have that sensation, and with my eyes closed, like you, I have a movement thing going on. But if I open my eyes, I seem to be able to gain focus. I wonder if we are talking about the same thing. I wonder if our bodies are having similar trouble as in the beginning, but that our brains are dealing with it better??? Just a guess. I hope you feel better, I know this is frustrating and scary at times. I'm with you. Bad week for me too, as you may have read, I like to talk about it!

    Julianne

     
    Old 11-06-2003, 09:00 AM   #3
    realbelle
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    julianne

    Quote:
    Originally Posted by jtiegs
    HI Belle,
    I am not sure to what degree the "explosion" was. Can you descibe it a bit more?

    What I think you may be talking about is something I deal with too. I wouldn't say mine feels like an explosion, but I get some really odd spells that come out of nowhere, they give the back of my head a really strong buzzing sensation. It doesn't set me into a major dizzy thing, but it's sort of jarring and disturbing. I have no idea what it is, but it feels like some kind of really bad brain misfire to me. When I had severe vertigo, I also had this sensation when the spins came on. However at that time, eyes opened or closed, the room was spinning. Now I have that sensation, and with my eyes closed, like you, I have a movement thing going on. But if I open my eyes, I seem to be able to gain focus. I wonder if we are talking about the same thing. I wonder if our bodies are having similar trouble as in the beginning, but that our brains are dealing with it better??? Just a guess. I hope you feel better, I know this is frustrating and scary at times. I'm with you. Bad week for me too, as you may have read, I like to talk about it!

    Julianne
    Hi Julianne, Thanks for answering. The best I can describe it, it felt like my brain went to the back of my head---I guess, like a heavy pressure was in the back---your answer sounds good to me--if my brain is dealing better then I can make it....Also when I opened my eyes--it was hard to focus at first--then I could see, felt like my eyes were jiggly....Thanks for calming me down. Belle

     
    Old 11-06-2003, 10:22 AM   #4
    jtiegs
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    Quote:
    Originally Posted by realbelle
    Hi Julianne, Thanks for answering. The best I can describe it, it felt like my brain went to the back of my head---I guess, like a heavy pressure was in the back---your answer sounds good to me--if my brain is dealing better then I can make it....Also when I opened my eyes--it was hard to focus at first--then I could see, felt like my eyes were jiggly....Thanks for calming me down. Belle
    Hmm, interesting, I don't know what to make of it. What is your diagnosis? The jiggly eyes may be nystagmus. Maybe we should see if anyone else has something similar going on and a better sense of what it is. I hope you feel better.
    Take care,
    Julianne

     
    Old 11-06-2003, 12:28 PM   #5
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    Hi Realbelle

    My guess:

    ..."I opened my eyes and nothing was spinning"....

    The brain(normally) gets signal input to it's balance center(equilibrium center) as follows:

    40% Vision

    30% Vestibular & Auditory (inner ear)

    30% Proprioceptive(tactile sensations)

    ..."I opened my eyes and nothing was spinning"....

    Since your eyes were closed---the vertigo--was not associated with something you were looking at or the way you were looking at it---i.e.,


    ..."which I have not been able to do due to the looking down all the time."...


    Don't think since you were in bed--and prob not moving around much--that it would be a bum Proprioceptive signal---that would have caused it.

    ..."Before bed, I did clean up the kitchen and vacumn"....

    My guess is---with only minimal Vision & Proprioceptive activity(your in bed)--the movements(cleaning, etc...)you made before going to bed---which you had not done in a while---caused it---prob BPPV related---and---if that is true---then the pressure/explosion feeling---was caused by the brain---trying reconcile--the movement---without the other two(vision/proprioceptive) inputs, i.e.,

    ....The brain is responsible for balance---specifically the equilibrium center(yours/mine)is located at the brain-stem, this position within the skull is in the back--near the neck area. ....(....."it felt like something exploded in the back of my head"....)

    When you opened your eyes(vision input)---the brain started to figure out what was going on---things sort of got a little better.

    Not all that unusual at 7 Months---unfortunately


     
    Old 11-06-2003, 03:36 PM   #6
    realbelle
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    Thanks Subs

    Hi Subs, Thank you so much for answering me. What you said makes total sense. ALL the things that were going through my mind were not good..You said it was not unusal for 7 mth mark--does it sound like I am on the right path???Do you have any answers as to what causes all this blasted rocking,swaying,bouncing???? Read on one site that it was damage to the hair cells in the inner ear and on another site it was mild vertigo,( not the actual spinning)...I do it 24/7. I do not actaully move, I feel as if I am. As they say, like a boat at sea. I was dx with bppv and was told this is residual or after effects of bppv. Have been doing vestibular rehab for 8 weeks now. Before my epleys the Dix-hallpike test were postive and after second epley was neg.I am just soooooo tired from fighting all this. Again, thanks subs for all your help. Belle

     
    Old 11-06-2003, 04:30 PM   #7
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    ....."does it sound like I am on the right path???".......

    Well each person is different---but you sure are on the same path that I was/am on(VN With BPPV Jul 02).

    ......"was told this is residual or after effects of bppv."....

    Yes---think that is true---every thing that I have read(and its been a lot)says that---the rocks(oto's) come loose---because the inner ear gets injured---virus/head bang....whatever---they start to move around---inside the canals---injuring them further---maneuvers put them back in place(so to speak)--but the canal injury needs to heal---takes time---the inner ear is less then the size of a dime---with a lot of stuff packed into it---it is all very sensitive.


    ..."any answers as to what causes all this blasted rocking,swaying,bouncing???? "....

    Lot of controversy and theories on that---but I came to the conclusion---that since the brain commits to long term memory--all the moves you have learned throughout your life---as movement templates---and calls them out of long term memory when you are planning/making a move---with the last few fractions of a second requiring fine tuning/adjustment by your balance center
    ---that the injured inner ear---can not react to provide a good and accurate signal(s) fast enough--and therefore---everything is a little off---with a lot of correction/over corrections going on---as you compensate---that all dampens out---and thing return to normal(hopefully)---just what I came to concluded as I read, learned and experienced the junk!!

    Think you are making good progress---about where I was---so you are getting closer---but it is slow---but---it does go(for most).


     
    Old 11-16-2003, 03:58 PM   #8
    mary111
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    [QUOTE=Subs30]....."does it sound like I am on the right path???".......

    Well each person is different---but you sure are on the same path that I was/am on(VN With BPPV Jul 02).

    ......"was told this is residual or after effects of bppv."....

    Yes---think that is true---every thing that I have read(and its been a lot)says that---the rocks(oto's) come loose---because the inner ear gets injured---virus/head bang....whatever---they start to move around---inside the canals---injuring them further---maneuvers put them back in place(so to speak)--but the canal injury needs to heal---takes time---the inner ear is less then the size of a dime---with a lot of stuff packed into it---it is all very sensitive.


    Hmmm - sounds like the word "benign" in BPPV is a misnomer. I've wondered about that.

    Mary

     
    Old 11-16-2003, 05:03 PM   #9
    realbelle
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    Hi Mary, I think postional is one tooooooo...Its true the spinning was postional BUT this rocking,swaying does NOT care about postion. It stays with me 24/7---sitting,standing. walking,laying down--it doesn't care!!! Benign just means not dangerous to our health overall. Belle

     
    Old 11-23-2003, 10:35 PM   #10
    mary111
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    Re: Someone Help

    Quote:
    Originally Posted by realbelle
    Hi Mary, I think postional is one tooooooo...Its true the spinning was postional BUT this rocking,swaying does NOT care about postion. It stays with me 24/7---sitting,standing. walking,laying down--it doesn't care!!! Benign just means not dangerous to our health overall. Belle


    The symptoms you describe sound like mal de debarquement syndrome. Did it start in relation to a trip you took?

    Mary

     
    Old 11-24-2003, 06:31 AM   #11
    realbelle
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    Re: Someone Help

    Hi Mary, I can relate big time to mdds but I have never been on a cruise and haven't been on a plane trip for over 25 yrs. Had not doing anything different, just woke up to room spinning. Do you have mdds? Have they came up with any treatment for it, or is it the same--the vrt? Belle

     
    Old 11-25-2003, 04:14 PM   #12
    mary111
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    Re: Someone Help

    Quote:
    Originally Posted by realbelle
    Hi Mary, I can relate big time to mdds but I have never been on a cruise and haven't been on a plane trip for over 25 yrs. Had not doing anything different, just woke up to room spinning. Do you have mdds? Have they came up with any treatment for it, or is it the same--the vrt? Belle

    I don't have mdds - don't have those particular symptoms. Unfortunately, noone has been able to figure out what is going on with me - and it's been 12 months. One day I had vertigo that lasted for a very short time (like 10-15 seconds - until I sat up) and since then I haven't been the same. I was afraid it was some kind of stroke but the neurologist didn't think so and the MRI didn't show anything. I had BPPV also - so everyone seemed to think it was ear related.

    Mary

     
    Old 11-25-2003, 04:47 PM   #13
    realbelle
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    Re: Someone Help

    Hi Mary, you only had the vertigo that one time? What has been hapeening the past 12 mths? Did you go to an ENT? Just trying to get a handle on whats happening with you!! Maybe between all of us, someone can help...Belle

     
    Old 11-26-2003, 05:28 PM   #14
    mary111
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    Re: Someone Help

    Quote:
    Originally Posted by realbelle
    Hi Mary, you only had the vertigo that one time? What has been hapeening the past 12 mths? Did you go to an ENT? Just trying to get a handle on whats happening with you!! Maybe between all of us, someone can help...Belle
    Belle -

    I had positional vertigo off and on for years (mostly off). Then one day I laid on my back and got vertigo but it felt a little different. It was really quick. I then had positional vertigo happening every day for about 6 weeks afterwards, along with some blurry vision and feeling off. The vertigo was on and off for months but now I hardly get it. I still feel "off" 24/7 and my vision has a blurriness it didn't have before. I've been to a neurologist, neuro-otologist and a few others. I've had a number of tests. So far it's a mystery. It was preceded by 7 months of TMJ. Strangely enough, the TMJ got less after this incident. I also had other symptoms, including ear symptoms.

    So for a year I've had this strange head thing going on. I've read some of the descriptions others have given and I can relate -- disconnected feeling, the world looking sort of surreal, feeling like someone turned a dimmer switch down on my vision/brain. I try to not get real upset about it anymore because it just doesn't help. Amazingly enough I'm still able to do everyday tasks although it's somewhat of a struggle.

    The neurologist tended to think it was an inner ear problem but the neuro-otologist seemed stumped. Oh well, I haven't given up hope ... Thank you for asking.

    Mary

    I've heard the descriptions of others and they

     
    Old 11-27-2003, 09:22 AM   #15
    realbelle
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    Re: Someone Help

    Hi Mary, it does sound like bppv, as the vertigo was postional. Anyone ever do the epley on you? I am so glad its not as bad for you now. Maybe try the vestibular exercises to see if you can kick it for good!!!! I have days I know its going to end and then back to days of crying--wondering what on earth it is and if its ever going to quit. If it would just stick to the same symptoms and not add new ones, it would be so much easier to deal with.I do believe, the key is just what you said--do NOT give up hope.( hard to do )..Wishing you a Happy and dizzy free Thanksgiving. Belle

     
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