FW: Re: [QUAD-L] Hey Friends/ problem

[William Willis]

You describe AD to a tee. It sounds like a problem in your lower abdomen -- 
bladder, kidneys, appendix, gall bladder, and it is being triggered by 
movement or re-positioning. Get checked immediately. Severe AD is nothing to 
mess with. As you know, the headaches are excruciating.

From: Danny Hearn <[EMAIL PROTECTED]>
To: Dylan <[EMAIL PROTECTED]>, Quad-List <quad-list@eskimo.com>
Subject: Re: [QUAD-L] Hey Friends/ problem
Date: Tue, 20 Jun 2006 12:37:27 -0700 (PDT)

       Dylan-- automomic dysreflexia usually means something is wrong-- I 
have only had it twice in my 9 years of being a quad--- On both of my 
occassions I had a severe type of UTI a bacteria called Psuedamonas that 
had got so bad my red blood cells were very depleted-- both times I needed 
IV anti-biotics. Many other things can cause it too... bladder or kidney 
stones, problems with bowels or bladder or sores and so on........I wish 
you luck finding the problem......Those severe pounding head pain is AWFUL 
, about the only relief for it is to sit up, as it can be a killer lying 
down when it comes on.
                                    Dan H.

Dylan <[EMAIL PROTECTED]> wrote:
  Hi, I haven't written in in years but I still receive and read the
quad-list. I have a warm spot in my heart for all of you people. And I have
found reading it to be both encouraging and helpful, at times wen I really
need information about this disability. I fell like a veteran of this quad
thing now :-) I was injured 8/10/86, a month after my sixteenth birthday.
So I've now been in this wheelchair thingy for 20 years! wow.

What keeps my going and positive are my daughter, who is now going on 14
years old and doing very well (and yes she was conceived naturally by a
c5/6 complete quad, so it is possible), and my friends both old and new.
Recently, well in the past year, I've gotten into playing this online
computer game called World of Warcraft. I'm having great fun with it. I get
to pretend I can walk, run, and jump again :)

Anyway, one reason I'm writing in is because lately, like in the last month
or two, I've started to have these super uncomfortable type of
disreflexia/spasm. I assume that others of you must have experienced it as
well. Its a different type than the normal disreflexia or spasm that might
happen if, say, you are having a pressure spot or are cold or whatever. It
seems to trigger in the morning after or during my stretching routine or
just after I get in bed(they're usually weaker then). And the only thing I
can do to stop them is to immediately sit up. If I don't, they (the spasm
with its accompanying very painful disreflexia) will come through my body
in a rhythmic pattern (like hiccups) but with each one getting
stronger/worse until within a few minutes my heart is pounding in my chest,
my whole body is clenched, and I get the worst headache imaginable. I can
feel the blood pumping into my brain and it gets to where it feels like my
brain could explode if I don't sit up. After I sit up it calms down pretty
quickly, and if I've let the headache escalate by taking awhile to sit up,
it takes about 45min for it to dissipate and go away. It also seems to
trigger when the right side of my torso/stomach area is touched. Other than
these occurrences my health is doing very well and I'm in the final stage
of clearing up this really bad pressure sore that I had.
I'm wondering if any of you quads know what I' talking about or have
experienced this. If so, do you know what might cause this? and is here a
way to address the cause of it?
Thank you. Yours, Dylan