Presenting… Presyncope (POTS Symptom #1)

What color does my face change to?  Look answer for below.
What color does my face change to during presyncope? Read on for answer.

Presyncope is not my favorite POTS/NCS symptom. The word itself has such a musical sound (pree-SYN-cuh-pee) and the sensation of it may come rushing on you like an orchestra bursting into full song, but it is far from a pleasant experience.

What triggers your presyncope most likely differs from that of others. For me, walking or standing too long (for minutes) or for too many short bursts in a row; kneeling or sitting perfectly straight; massage or touch to the back of my neck; or even too much excitement, concentration, or conversation can trigger presyncope. Wikipedia has a more exhaustive list of potential triggers here (scroll down to Cause).

Presyncope is literally pre- (before) syncope (fainting), so it includes all the sensations that precede losing consciousness. For me, when it’s coming on, I start to feel more faint than usual. My head gets heavy, and I may need to support it with my hand. I get very nauseous. Sounds around me become muted, and lights seem to dim; sometimes I have grayed-out vision. I realize things are NOT going well but lose my ability to think clearly. When people around me ask what is happening and how they can help, I cannot make decisions, and I end up unable to form words. I turn extremely pale (pale enough that strangers give me horrified looks and ask what I need… maybe a bit like #4 in the photo lineup), and I tend to get red and blotchy on my neck and chest, sometimes with a rash of bumps. My eyes tear up and water. As soon as I lose speech, I know I better lie down, and FAST. Lying down prevents me from actually fainting (thus, PREsyncope). While lying down begins to relieve some symptoms, I turn very, very cold and possibly sweaty, and I often have full body tremors that may last 20 minutes to an hour. I often need a good bit of time before I can sit up again, because the lightheadedness takes over if I attempt to sit up too soon.

Well, that sounds like a lot of fun, doesn’t it?

So what’s happening during presyncope? For me, since I have dysautonomia, my malfunctioning autonomic nervous system is not directing enough blood to go to my brain. The mechanics differ depending on the cause.

What can I, with my dysautonomia, do to prevent presyncope? I need to make sure I sit down or lie down before things get too bad– for example, I know that I could go into presyncope if I attempt to set our entire dining room table in one go. I have to do little by little, or better yet, ask my husband or kids to help. I need to be sure I am taking in enough salt and fluids. Compression stockings might help, or countermaneuvers (tightening my leg muscles) may put it off. Medications may help too, and I take a beta blocker and midodrine to slow my heart rate and increase my blood pressure, respectively. Many dysautonomiacs have success with fludrocortisone (Florinef). For me, the above approaches don’t get rid of it, but they may help me experience it less often.

I would love to share a few stories of others who experience presyncope. If you would like to submit one for consideration, please send it to kristiwrite@hotmail.com.

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