Friday, June 19, 2015

Dreadful Dysautonomia

I'll skip the usual "sorry it's been so long since I've written" and just jump right in with what's been happening in my life. Twice in the past month I've had pretty bad, sudden attacks of autonomic nervous system dysfunction. My geneticist asked me if I knew what triggered them and at the time I didn't, but I think I have it figured out. TMI warning: there may be talk about GI functions and the many ways in which they can torment our bodies. You've been warned.

The first recent attack I had woke me up in the middle of the night. Talk about a rude awakening. I ended up spending an hour or so in the bathroom. First with the seemingly never-ending movement of my bowels. I guess I really was full of it! Then came the vomiting and other autonomic symptoms...sweating, tingling, shivering and, surprisingly, the inability to talk. I knew I was in trouble, but it was midnight and I couldn't yell to get my husband's attention in the next room. So, I called my daughter who was in her room at the opposite end of the house. I only managed to get out the words "come here". Luckily, she did. I was able to get on the floor, which probably kept me from passing out. We were just about ready to go to the hospital when the symptoms started to ease. I spent another half and hour on the floor of the bathroom with a wet washcloth, Powerade and my pillow. The second attack, which just happened this week was very similar, but not nearly as bad. It also happened in the middle of the night. So, I have a few ideas of what might have caused these attacks. I think it partly has to do with the loss of so much fluid so quickly. I'm not quite sure why it's happening in the middle of the night though. Maybe with my body being so relaxed my bowels decide it's time to move, setting off the whole chain of events? This has happened to me during the day in the past though. But, nearly every time I've had such severe autonomic symptoms they've occurred with GI issues being the cause. I've been trying to get more fluids during the day. My geneticist has also sent a recommendation to my primary doctor for weekly IV fluids. Studies have shown many patients have a lessening of their dysautonomia with this treatment. It's a good preventative, but also an excellent treatment for acute symptoms. I'm anxious to try it out.

My dysautonomia seems to be especially active these days. I'm guessing it's a combination of summer heat, hormones (Hello menopause!), and a progression of my EDS/possible mito. Plus, there's the whole not taking care of myself thing. The pushing myself and not listening to my body. The wedding was absolutely beautiful, but it really, really took a lot out of me. I slept off and on all day for two or three days after the wedding (something I just don't do). After the wedding, I jumped in on the organizing, cleaning of the bride's old bedroom. I've decided to use her massive closets to store pictures and other things that are currently in the garage. I'm sure hauling heavy boxes out of the hot garage just days after the wedding did nothing to help ease my symptoms. When I feel a bit better after a flare I always do too much. Then, I get sent back into another flare. It's an endless cycle.

Last night my husband and I went to an outdoor business function at the local baseball field (anyone see  A League of Their Own? It's that field.) It was hot and humid and very crowded. There were hardly any places to sit, so I did a lot of standing. I could feel the blood pooling in my feet and I knew I wasn't doing well. But, I ignored my symptoms, at least at first. Then, I started to faint and I had no choice but to get off of my feet. While we were there, I told Tim how I knew I ignored the fact that I have several chronic illnesses. Not all of the time, but much of the time, I just ignore them until they get my attention. That's not a good way to deal with being sick.

I'm not sure if I've shared this here or not, but even if I have, it's worth sharing again. Those of you who have EDS now have an amazing opportunity to hear conference-style presentation from EDS experts right from your own home! In the past, many EDS patients were frustrated because they were unable to attend the yearly EDNF conference because of finances and/or the inability to travel due to their health. Now, thanks to a group EDSAwareness, you can watch for free! Here's a link: EDSAwareness Educational Sessions

Until next time (which won't be nearly as long), have a pain free, happy weekend.

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