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  • Subs - decompensation??

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    Old 12-28-2003, 03:10 AM   #1
    studyin
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    Subs - decompensation??

    Hi Subs,

    I've read a few internet articles on decompensation (some that you posted) thinking it meant a relatively *slight* setback. However, I recovered from a cold last week (the first virus I've had since lab struck) and a day after the sniffles seemed to be pretty much dried up and the cold gone, I got hit with the most serious lab attack since this whole nightmare began for me in August. I was really messed up on Xmas eve day and Xmas day. I had some very bad panic attacks that left me feeling pretty empty and hollow. Really ugly stuff and I now feel like I'm right back where I was 2 months ago. Very disheartening.

    So I'm wondering: is this a decompensation event? I never thought one could be this bad (ie. sliding back 3 months) considering the progress I had made. Lastly, did you experience a decompensation event that you regarded as particularly bad and, if so, did you bounce back quickly?

    Many thanks in advance.......Scott

     
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    Old 12-28-2003, 05:15 AM   #2
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    Cool Re: Subs - decompensation??

    Scott

    ..."wondering: is this a decompensation event?"....

    How far along in percentages would you say you were---80%, 50%--at the end of 3 months("i.e., sliding back 3 months")??

    ..."experience a decompensation event"...

    Yes---and prior to getting to a fairly consistent 60/70%---it seemed like I had caught it(Lab) again---but---never turned out to be the case---once I achieved around 70%---decomensation occurred---due to colds, etc... but never set me back as far as when I was less then 60/70%---think it has to do with the brain's equilibrium center---locking in the fine tunning---of the normally stored "pre-planned movement templates"---but that is just a guess---only thing I know for sure(so far anyway)---that once I got into the 90% range(consistently)---even the flu shots, colds, other shots, etc... never caused decompensation.


     
    Old 12-28-2003, 04:37 PM   #3
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    Re: Subs - decompensation??

    please disregard

    Last edited by sd3; 12-28-2003 at 04:41 PM.

     
    Old 12-28-2003, 04:43 PM   #4
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    Re: Subs - decompensation??

    Hi Subs,

    Thanks for that info! I'd say that, prior to the cold, I was a consistent 60-70% on average (I'm at exactly 4 months now). Sometimes I'd get a day or at least part of the day where I'd hit 90% but that was rare. For the most part though I seem to be on a rollercoaster moving between 60 and 80%. This can happen a few times a day, the mornings being worse.

    I'm glad to hear you actually perceived yourself as having had lab a second time even though that wasn't the case. That's exactly how it feels to me now although it appears I will recover from this one a lot quicker (I feel about 45% today). I have that feeling again that I'm in "fairyland" which I had almost rid myself of before and that causes me to have all sorts of weird dreams/thoughts etc while trying to sleep - not nice. Can you recall how long it took you to get back to your previous compensation level after the decomp event from your early colds? I'm hoping it was no more than about 2 weeks - I'm heading overseas soon.

    One other quick question if I may: I know you mentioned that you'd had a stiff neck with this too. Did you notice it more at the computer trying to hold your head still and not noticing it if you were in constant motion?

    So glad you stay on the boards Sub - there are so many days when I cannot even imagine this thing coming to an end or getting better.....but you have shown that it's not the case and there is light at the end of the tunnel even though I can't see it yet.

    Many thanks again....Scott

     
    Old 12-28-2003, 05:56 PM   #5
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    Cool Re: Subs - decompensation??

    Scott

    ..."Can you recall how long it took you to get back to your previous compensation level after the decomp event from your early colds?"...

    First time was two to six weeks---to get---fully back---two to three--partially back.

    ..."had a stiff neck with this too. Did you notice it more at the computer trying to hold your head still and not noticing it if you were in constant motion?"...

    Yep--sure did have a stiff neck---it would pop, snap, crackle, groan etc....at the computer..if I was not careful---it would get stiff & send shooting pains down my spine---and the peripheral vision---was screwed up---so that---I had to turn on a lot of lights---other wise---it was weird---but---for me---I did not have the constant motion part---that I can remember---but to tell the truth---I had so many things going on---until the 13/14th month---that---it could have been masked by some other problem/symptom

    Yep it does go---if anyone had asked me--if it did---in the fourth month---I would have said---nope---but I would have been wrong---it goes---but boy is it slow---there were months were I would have bet---I had not made any progress---but---I had---it was just so slow and small---I was counting on some thing more---but---that was not the way it worked for me---it was small changes with slow progress---but it went ---and for most it does---if it is not going to do that---I don't think any compensation would ever take place---so anyone above 0% is having compensation taking place---which means the injury is healing and the brain is dealing with it---constructively.


     
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    Old 12-28-2003, 07:55 PM   #6
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    Re: Subs - decompensation??

    Subs, that is interesting what you said about if we are anything above 0% then compensation is taking place. The neuro-otolgist that I went to made the remark something similar to that. I said something about not compensating and he said I wouldn't even be sitting there is that was so or something like that. I have been meaning to ask you about the others that don't compensate. The ones that are not included in the most. What do you think happens when someone has this thing go on for years? And do you think that since I have had this at 46 it means I will probably go thru a really hard time when I am elderly or is it possible that it will not be a problem?
    Just some things I have been thinking about.
    I want to thank you, again, for staying with us, we need you, Subs! You are definitely the bright spot on these boards right now!
    Blessings!
    Vicki

     
    Old 12-29-2003, 02:50 AM   #7
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    Re: Subs - decompensation??

    Hi Scott,

    Just wanted to say I got flu 6 weeks ago. Like you I decompensated very badly for a short period of time - but, like Subs, got it back much, much quicker. I have just written a topic about being worse BUT I don't think this was down to the flu - it is, I believe, due to a new VRT exercise - I had got better from the flu induced decompensation prior to starting the exercise. So, in short, don't despair, I also pondered a second attack - but it seems that was not the case. Also, since getting this I have developed problems with both pain in my neck and jaw. Recently I've discovered that regular use of simple over the counter anti inflammatory pain killers can really help. We have tablets called paracetamol in England - don't know what the equivalent is in Australia, I only need to take one every four hours when bad and it is making a real difference. The great thing about this type of drug is that it doesn't mess with compensation. Also, do the obvious, heat applied to the neck, stretching. Miza wrote an excellent list of her neck stretching exercises, if you put her name in search you should come across it.

    Subs and Vicki - wow I LOVE the stuff about if you compensate a bit you will compensate completely - I've never heard that before. Very cheering stuff - think I might get it printed on a T shirt and wear it, LOL. Is there any literature anywhere that says that, or was it word of mouth from the neuro oto. Anyway, it's made me happy,

    best,

    hbep.
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    Last edited by hbep; 12-29-2003 at 02:55 AM.

     
    Old 12-29-2003, 04:40 AM   #8
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    Cool Re: Subs - decompensation??

    Vicki

    ..."ask you about the others that don't compensate."...

    If it is only on one side there are operations that can be done---to kill that's side vestibular system ---if it is both sides killing both is not an option--since that would put you in a "walker"--and then---depending on what type of vestibular prob you have---there are other operations available---and if it is only one side some people just try to live with it.

    ..."when I am elderly"...

    Werther you had it before or not---the statistics show it is a big prob---for the elderly---because as you age---the vestibular system, bones etc...age also--and since it is such a fine/delicate system to begin with---it has probs--for some.

    ..."do you think that since I have had this"....

    As you know---just about all of the medical experience in this area shows--it has a high probability of repeat---but with less severe consequences---lets hope they are "off" on that one!


     
    Old 12-29-2003, 04:59 AM   #9
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    Cool Re: Subs - decompensation??

    Hbep

    ..."any literature anywhere that says that"...

    Have not seen it succinctly written that way in any of the medical literature--but from some of the junk---you could imply that

    ---so I asked the first Neurologist(not N-Oto)---who was not bad by-the-way in this area---he said that was his conventional wisdom/experience

    ---so when I got to the N-Oto at the Univ of Penn---I wanted to ask about it(among other things)---his comments was---they(I guess N-Oto's in general or Univ of Penn in particular)--hold that to be true---in Lab, VN, BPPV---but he left open(did not mention) some of the other inner ear probs--I did not pursue it further with him--since I had limited time--and had bigger fish to fry---so to speak---like my screwed up "vision".....but

    ---think that its true---for just about everybody---kind of make sense---that something--is trying to "set it right" since---for most---we have good and bad days(patch's for Hbep)---so---something good is a work in there---trying, trying, trying--but boy does it take time---but in the end for most---it succeeds---amazing


     
    Old 12-29-2003, 01:26 PM   #10
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    Re: Subs - decompensation??

    Hi everybody,
    Haven't been here in a while because have been busy at work. Still stuck in the 90 - 95% mode but was pleased to see Subs comment about compensation.
    We are extremely busy right now at the ski center which entails me talking to aproximately 150 people per day and at a constant fast pace and have found out this can cause me to feel quite imbalanced. Never noticed this before because I was never put in this situation. If I am at home or talking in a casual relaxed manner this does not bother me at all. But at work after three to four hours of answering questions I feel quite loopy and so I believe I have thrown something new at my brain and it's really saying whoa... what the heck is this. Once I get home and relax for a while it eases off but it comes back the next day at work once the frenzy starts again.
    Since the last Neuro oto suggests a central problem, the compensation process can be quite a bit longer. Am still waiting to hear from the Neurologist and even called again last week to express my annoyance at not being contacted to even schedule an appointment with me. May be looking at Columbia Med if I don't hear from them soon. I know I am fortunate to get myself to this point but just can't figure out why I can't kick the last bit out the door. Hbep, glad to see your rough patch is getting better. Subs and everybody else, all the best.

    Kathy

    Just wondering Subs if you have done any research on Central vestibular problems. Central problems seem even more broad spectrum. So much more to ponder.

     
    Old 12-29-2003, 04:26 PM   #11
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    Cool Re: Subs - decompensation??

    Hi Kathy

    ..."if you have done any research on Central vestibular problems."....

    Have not done any on that---took up so much time just to get a handle on peripheral problems..

    ..."of answering questions I feel quite loopy"....

    Think that is---just your brain---using so much processing--to figure out--your correct balance---takes a lot of brain power---and if your moving about--while you try to answer questions---it really takes a lot of processing power---even when you are well---with no problems at all---of any kind---the brain is using over 50% of its processing power just to process your vision signals--and that's is with every thing operating with no problems---you can imagine--what is going on now---but that goes away---as you compensate---but it is one of the last things---to return to normal---at least it was for me...

    .."May be looking at Columbia Med"...

    Excellent rep in this area---known as one of the best. Kind of surprised that the Doc has not moved on your problem.....

    Takes awhile to get out of the 90-95% range---I stayed there for quite awhile---and I think the last stuff that needs to compensate and lock in---takes--longer then the movement patterns, i.e., the cognitive stuff---but it happens!


     
    Old 12-31-2003, 12:35 AM   #12
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    Re: Subs - decompensation??

    Hi Subs,

    Just another quick question for you if you don't mind. Did you at any time through your lab and BPPV suffer from any anxiety or depression? How did you deal with the feelings that "it may never end?" as we all tend to feel while in the thick of it? Even though I know and try really hard to believe that this must end, it's nearly impossible to stay positive, particularly for me now after having been smashed with a huge decompensation following the cold 2 weeks back. The condition has sent my body into a permanent fight or flight response since day 1 and believe me, it's really starting to take its toll. I can't control it....particularly when I lie down at night. Has a mind of its own.

    Thanks again Subs.......Scott

     
    Old 12-31-2003, 03:37 AM   #13
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    Re: Subs - decompensation??

    Hi Scotsman,

    Just to say that in the first 8 months of this I experienced pretty bad anxiety - partly symptom induced, partly through not having a diagnosis. I found a book that was recommened extremely helpful. It's called 'Hope and Help for your Nerves' by Clare Weekes. It helped massively in coping with the brainfog. Interestingly she talks about brainfog in the book, people with anxiety disorders, as you pointed out, do get some (and in my opinion only some) of the symptoms people with an inner ear disorder get. I think why anxiety is so awful with an inner ear disorder is because you get a double dose of brainfog, spaceyness - you are already suffering all these things due to the inner ear, then the anxiety throws another whole layer of horror on top of it. The book helps as if you follow the advice you can knock out one layer of the fog etc... Believe me, it really helped, my symptoms did reduce.

    As for the depression - hmmm - got to admit, that's a tougher one, this is pretty relentless stuff and quite frankly depression seems a bit of a natural response - most of us have been there. I think, when at my worst, trying to focus on recovery does help.

    Hope this helps,

    best,

    hbep.
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