Glad you're still with us and got the necessary meds, Dylan. Bill age 56 C6 Incomplete since 7/20/68 Leesburg, FL Out of my mind. Back in five minutes. ----- Original Message ----- From: Dylan To: Quad-List Sent: Thursday, March 22, 2007 6:41 PM Subject: [QUAD-L] Disreflexia
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
