hey Quads,
Dylan here. I haven't written in in awhile. The last time I wrote in I was
asking about some disreflexia/spasm spikes I was having. I wanted to know
if other people had experienced them and/or knew what they were about and
what I could do about them. I was getting concerned. I got some helpful
responses. Here is the quote from that post -
>(06/20/06) 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.
The reason I'm writing in now is because they were serious and I am hoping
that my experience can help prevent some other quads from having to go
through what I did. Basically what ended up happening was that those
episodes kept happening until one day, what I feared most - an occurrence
happened where sitting up did not alleviate the symptoms. It became obvious
that I need to go to the hospital. On the way there I could feel that I was
not going to make it. My Dad was driving and I was telling him what my
symptoms where and that I was about to leave. He helped me by just telling
me to let go and to not be afraid. My eyes rolled back into my head as I
reclined the wheelchair. Everything turned white. I woke up about 4 days
later in the hospital. Apparently I had had a seizure. It actually, now
looking back on it (it happened on Feb 19th) it has been an interesting
experience. When I started becoming aware again I couldn't remember the
things that had happened right after I lost consciousness. I also lost
memory of many trivial things like the scenery around where I live, but
that soon came back to me. The experience has changed my perception of
things a bit. I can't say that being confined to this body in this
wheelchair makes 'sense' to me now, but in a way I'm more able to observe
everything more and see the layering behind what we see through our eyes.
So that there are explanations for things as they are. Anyway I won't get
too weird here :-)
What I really wanted to say, but got a bit side-tracked, was that the I
found out the reason why it happened. At least this is what the ER docs
told me, and what kind of upsets me is that I've been telling my docs about
this for quite awhile and they never clued into or told me what was going
on. Because I'm a quad and don't stand up, there is some chemical in my
body that doesn't get produced and that eventually this caught up to me and
caused me to have a seizure. Now the doctor has put me phenyton(phenytoin)
sodium (dilantin). And apparently I should have been taking it earlier. I'm
not sure whether using a standing wheelchair would've helped to prevent
this sort of thing or whether it is a medication that all quads need to
consider taking at some point. In any case, it can't hurt to share my
experience and read up on this drug. If anyone has any questions that I
might be able to answer about it I'll do my best to answer them.
Thanks, yours, Dylan
