Tuesday, November 3, 2009

Today's autonomic "event"...

So, as I've written previously, I've been having a lot of symptoms lately that really tell me the compression on my brainstem is increasing.

And I've just discussed dysautonomia and autonomic dysreflexia.

Today, while making our bed, I felt a very deep cold inside the core of my body, while at the same time, I was sweating on my head, above the C1 level of injury. I was not exerting at all at the time...no breath-holding...nothing out of the ordinary.

I've always been a good one to ignore pain and such, and to press on. So, I naturally went ahead with some light vacuuming. Very light, with a very light vac.

I have these episodes quite a bit. In fact, I've recorded some of them here on this blog. So, I immediately recognized that I was having an "autonomic episode." I walked calmly into my office, where I keep my BP "machine" and, slipping on the cuff, I pumped the bulb and waited while the reading came down to the point where it was ready to give me the reading. My normal BP is 120/70.

The reading came up 144/84. I knew this showed that I was indeed having fluctuations in my autonomic system. There was nothing I had been doing that would cause someone without problems or imbalances in the autonomic system to have a spike in BP. As I said, I have these episodes all the time. I can recognize when the symptoms are occurring. A few months ago, while just beginning to make the bed, I felt the old, familiar feeling of my head sweating, pain above the ears, a tight scalp, pilo-erection (hair follicles on end), flushed face, painful scalp "crawl"...so I took my BP and it read at that time 184/152! And that was a couple of minutes after the worst of the symptoms while I set up the BP machine.

So, this reading did not cause me concern, as I'm used to this. But it continues to "prove" that this stuff is going on.

After taking this first reading today, I went back and finished the little bit of vacuuming I was doing (I told you, I'm bullheaded) and then came back in to the office, sat in a resting position, and re-took my BP. This time, it was 137/87, with a pulse of 101, as before. This made sense. Things were evening out.

I turned around to my computer monitor then and for five minutes, I answered a non-emotional email. Out of nowhere, however, I felt that painful scalp crawl, the piloerection, the tightness and pain above each ear. I turned back around to my desk and slipped on the BP cuff that was right there after taking my last reading.

It read 149/91! With a pulse of 94. I have a feeling it had to have been higher before I got hooked up and ready to go with the BP monitor.

Five minutes before, it was 137/87. Five minutes of very calm resting (the reduced pulse showed that)...then the feeling I know oh-so-well...the symptoms that tell me things are wacky in my brainstem, quite frankly. I'm sort of shocked to see my BP has jumped up, just like that...for no obvious reason.

Next, I rested a good 10 minutes of typing emails. And, again, just for a baseline, I took my BP. No further symptoms were happening now. And my BP showed it. In 10 minutes, my BP had dropped to 128/84 and my pulse was 85.

And 30 minutes later, I took it again (just to record that baseline...to also prove to myself the monitor was working correctly) and my BP was pretty normal for me, 127/87, pulse 85 like before.

This all would be bad enough if this were a rare experience, but it happens to me every day, several times throughout the day. It can be brought on by leaning over to fill the dishwasher, or too-tight waistband on a pair of jeans, or allowing myself to experience too much humor or happiness...or witnessing something that might cause me to feel some anxiety, tension or stress (a car crossing lanes in front of us, for instance). Just every-day, common things, like making the bed, can trigger it.

I have no idea how dangerous this is. I mean, for it to be happening this often, every day. There is no cure, all I can do is try to avoid the things that trigger it. Perhaps, if it is caused by my cerebellar tonsils pressing against my brainstem, if THAT was decompressed, maybe these episodes would end? How wonderful that would be!

Until then, I have learned to live with it by God's Grace. It is what it is.

Let's get on with living.

1 comment:

Anonymous said...

Virginia - I left a comment under 10/26 and sent you an email that was meant to be one but was actually two (I inadvertently included an earlier email I had started a month or two ago when I was so fatigued I was sleeping 16 hrs or more/day. The 2nd part of the email reads a bit like I was out of it...Anyway, although I don't know you, I am concerned about the symptoms you're experiencing - pls. don't give up on the medical profession yet.I can see I'm getting pushy - quite inappropriate..

Diana (web pseudonym) Name in email I sent...