Dysautonomia. Fancy word that means my autonomic nervous system (‘automatic’ functions; nothing that is controlled by me) is whacked. I was formally diagnosed in 1996 when I flunked a tilt table test. My blood pressure tanked to 44/16, and I was still not totally unconscious. The doc told me that when I completely passed out (which had led me to the testing) my heart may have just taken a break for a second or two, and the thud on the floor jumpstarted me again…scary thought).
My blood pressure, heart rate, respiratory rate, and temperature regulation are all messed up. Pain and being overheated are the biggest triggers, although having anything get the ‘fight or flight’ response going makes it go weird. I’m not much fun when that happens. Tipping over got me put on disability, which was (and is) the pits. I miss being a working nurse (I keep my license active; I earned it, and it’s mine!). I do not like being a patient (and I’m not that good at it, in spite of a fair amount of experience). I tend to take care of any nursing ‘jobs’ I can when I’m a patient, and the nurses aren’t always that thrilled. I’ve gotten better about that…sorta.
Nobody is for sure what has caused this. Some types of this disorder go along with other diseases, like Parkinsons or multiple sclerosis. Sometimes head injured patients have ‘brain stem storms’ which are similar, but those are generally confined to those with serious, life altering brain injuries. Autonomic dysreflexia is similar. Diabetics can get autonomic neuropathy and have similar symptoms. Sometimes nobody knows. Sometimes it progresses until the person dies (Johnny Cash), and sometimes it just sort of coasts along. It looks weird regardless.
I was living with a co-worker in a house with no central air conditioning (in Texas) and hardwood floors when I started having symptoms that were enough to be noticably abnormal (i.e. passing out and hitting said floors about 10 times in two weeks). I had a bedroom window AC unit, but during the day, it was box fans or bust. In July. I initially blew them off as ‘stress’. My co-worker (another RN) told me there was nothing ‘stress’ about what was going on- I had something physically wrong, and needed to get it diagnosed and treated before I ended up getting really hurt. Up until then, I bounced fairly well, and aside from some bruises and a concussion, I would just wake up on the floor, usually with my co-worker sitting on the floor next to me after being awakened in her room down the hall from my body whacking the floor. She said I looked like someone was beating me, and since she was the only person around me on a consistent basis, it didn’t look good for her !!
So, off to the neurologist, who did some tests, and then to an electrophysiologist in San Antonio (60 miles from home, where I’d drive myself back and forth for the consults with a cardiologist, another neurologist, and the electrophysiologist…. basically they were looking for heart rhythm and brain abnormalities). The electrophysiologist figured out the problem with passing out, and my neurologist back where I lived figured out some medications to help me keep working. Things had been pretty dicey with that, and my boss was ready to cut me loose. I was horrified. I was tested for all sorts of things, but dysautonomia was the official word. There are various types, and I seemed to have a mixed bag with neurocardiogenic syncope (I keel over if my blood vessels in my legs dilate and suck the blood from my brain (more or less) , causing me to pass out), and some orthostatic tachycardia issues (POTS for the informed) where my heart rate goes up abnormally when I stand upright for too long. Then there’s the strange stuff with heat that makes my blood vessels swell, and there’s no compensation with my heart rate, and I eventually keel over, after a very patriotic display of bright red cheeks, white around my mouth, and bluish lips. If I don’t get it controlled at that point, I’m out for the day. It’s all quite exhausting.
It’s weird. It’s misunderstood, and it’s taken my main sense of purpose – working as a registered nurse. I have been an RN for 27 years, and miss it terribly. In some ways, it’s been good I’ve got that license to make sense of my own stuff. But since 2004, I haven’t been able to work, and I do well to get the basic things dealt with at home. Laundry and cooking are quite painful, so it all gets done in ‘batches’. But, it could be worse. I’m not in some retirement home.
At my last job, I was shipped to the ER between 10-12 times in the last 6 weeks or so that I worked there. Finally enough was enough (and the ER they sent me to was really snarky; if they didn’t understand it, it must not exist, so I was treated like the dreaded frequent flyer – even though I hadn’t sent myself there, my boss had. They were very cruel at times). My primary doc agreed that work wasn’t working. There was no way to know when I’d be more prone to having the episodes happen, and since I was (and am) in constant pain, there was always that trigger waiting to blow up. If the thermostat was comfortable for everyone else, chances are I’d be burning up. I now have an ice vest that I wear to leave home on the days I have MD appointments, or the one day a month I do major grocery shopping, which finishes me off for the rest of the day because of the pain that causes.
But I’m still relatively independent. That’s important to me. Even when I was getting chemo for leukemia, I’d drive myself to the chemo appointments and Neupogen/Neulasta shots. I wanted to do it on my own. I’ve had to call my dad for enough stuff, that if I can take care of something, I prefer to do so (he would help in a second if I asked him). I rarely drive (have killed two batteries for lack of use), and know if it’s not a good day to go. I shop in the middle of the night, so it’s cooler. I’ve had to make some adjustments, but that’s OK.
Anyway, if you see someone who has weird symptoms, encourage them to get help. I got another 8 years of work from the right medications. That is priceless. Don’t assume that just because you don’t understand it, it must not exist. Too many people do that. That can be dangerous.