1 Responses to Cataplexy??

1. drew50 on 2008-11-20 02:32:51.166264

   Sue wrote,
   <I am having a slight disagreement with my Dr.'s. I have a past
   history of strokes so I know what they feel like. For the past year or
   so I have
   been experiencing a strange sort of numbness in my extremities. Even
   severe pain in my fingers and toes.
   Numbness occuring anywhere is NOT cataplexy nor does cataplexy cause
   severe pain in fingers and toes. Pain might occur if limbs are
   injured--joints pulled out of place or bones broken--by a fall. Those
   kinds of injuries do happen, but they aren't common. In the great
   majority of cataplectic attacks, no physical injury occurs unless some
   sort of contact with an object is made during a rapid postural collapse.
   <My most worrisome experience was a few weeks ago, my 8 year old
   daughter was involved in a significant accident with a young neighbor.
   A 6 year old boy. His mom and I were giving a block party and we had
   rented a Big water slide for the kids. Our kids were "testing" it
   before the guests were due to arrive and they hit into each other. I
   was at my house when this happened and they called my husband and I to
   get right over there. When we arrived I figured a fat lip maybe and a
   bump on his head. Well when I saw my daughters 2 front teeth imbedded in
   his skull I simply froze. I looked in my daughters mouth and saw her
   perfect adult teeth
   were cracked in 1./2 and I had to sit. I was frozen there. My Mom came
   and I
   really could not talk. She said I was gray.
   Your description sounds like a shock reaction, not cataplexy.
   <I was embarrassed by my reaction. I know the party guests must have
   thought was a horrible Mom. I have a background in medicine and
   normally
   will respond with the correct action for the given situation. Even if
   it
   involve a family member, I nursed my Dad during his Parkinson's until he
   passed. I was extremely responsible when my (Same) daughter was stung
   by a bee
   and almost died due to an allergic reaction we did not know she had.
   She
   was swelled up beyond believe and gasping for air when we got her to the
   hospital, but I didn't break down until she was release later than
   night. I never "froze'. Was it shock, stroke or cataplexy?
   Again, based on your description, you didn't experience cataplexy even
   though the emotional element was present. In relationship to cataplexy,
   we often say we freeze in place to regain control. By "freeze," a PWN
   experiencing cataplexy conciously and deliberately ceases all movement
   to regain control. Some PWN learn to lock their legs; others focus on
   recovery. Had you been experiencing cataplexy, you would have
   experienced loss of muscle tone which would have been exhibited by
   shaking, trembling, jerkiness before and after sitting.
   For goodness sakes, don't blame yourself. I'm sure a lot of parents
   have also experienced the same kind of reaction when seeing their
   children injured. Just because you are "old reliable" doesn't mean that
   you can't experience shock.
   <I get this when the darn doorbell rings, my leg will give out.
   This description is more typical of cataplexy. A ringing door bell is
   an unexpected noise.
   <Or when my daughter has a bad day at school and I get a note I lose
   feeling in an
   arm or something like that. Not totally dead like when I had the
   strokes but dead feeling? If that makes any sense?
   Although cataplexy is said to be bilateral, there are occurences which
   affect only one side of the body. I've experienced cataplexy--without
   an apparent trigger--when I've been holding a cup of hot coffee.
   Cataplexy occurs causing my arm to jerk and coffee is spilled all over.
   That is when I say "Damn it!" or "Oh, shit!" (My voice during those
   occasions is not affected nor are any other limbs.) The event you've
   described could also be cataplexy, but usually cataplexy is obvious when
   the limb is moving. You could very well have lost muscle tone
   momentarily in that arm due to cataplexy, but I wouldn't describe it as
   feeling dead. Recovery from cataplexy is spontaneous. How long did
   your arm feel dead? If you arm jerked or your arm was limp without
   any sort of sensation, that would to be cataplexy. If it lasted more
   than seconds or so, then you should consider another cause.
   Anyway my question is, is freezing like that cataplexy?
   No, what you describe as "freezing" is not cataplexy. Yes, cataplexy
   can be very subtle.
   <If some of you would not mind sharing some of your cataplexy
   experiences I would
   certainly appreciate it. I see my Sleep Dr. in the AM and I will be
   bring my
   newest MRI/MRA results proving I am not having strokes. But I would
   like to
   be more informed on cataplexy.
   Thanks so much!
   Sue :)
   Sue, I would suggest that your doctor contact people at Stanford. A
   device does exist which can determine the presence of cataplexy. It is
   still in hasn't been perfected, yet, but it might help determine if you
   are experiencing cataplexy. Yours is a perplexing case.
   Nancy

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