Presyncope in action, according to Kristi

I recently posted an explanation of presyncope as a person with POTS/NCS. Here’s an example of when it recently happened for me and how I felt.

My family and I were at our church’s summer block party one evening not long ago. I was a good girl and used the wheelchair, because I knew going between a parking lot, gym, and fields would be too much walking.

After catching up with friends and watching our kids play outdoor games, we went into the gym for dinner. I was sitting in line talking to a friend when I felt presyncope coming on. She asked me if I was okay (my face started to go pale), and I assured her I was (trying to live in denial and hope it would blow over). A couple minutes later, she asked if she could get me anything (paler face, less responsive chatting on my part). She brought me a glass of ice water, which I immediately held to my temples, hoping it would help me feel better. In the next couple minutes, I went from pale to paler to zombie-white, stopped being able to respond to her, couldn’t tell anyone what I should do (I need to memorize the words, “I NEED TO LIE DOWN!”), and generally went from bad to worse (for more description, see my explanation of presyncope). My eyes were watering, my chest and neck were a blotchy bright red, and friends pushed me and my wheelchair out of the gym, as shocked-looking friends and strangers looked on, and my husband went to get the car so I could lie down with the A/C on full blast.

Okay, I don’t like presyncope, but I REALLY don’t like public presyncope. I feel like I seem like a dramatic diva who can’t just keep it together. I feel very embarrassed and even a little ashamed. My three elementary-school-aged kids get very worried (zombie + Mommy is not a good combo), and in the moment, I lack the conversational skills to reassure them. I managed to eke out, “Go ask Daddy” to anything they said. When my 11-year-old asked how I was, I gave him a thumbs-up to reassure him, which he later told me was very upsetting, since he could tell I was not doing well and thought I was tricking him.

On top of that, if anyone offers me sympathy, I lose it. One friend said, “I hate that you have to go through this,” which caused me to burst into tears. Being the recipient of pity has never been easy for me.

But even as I was going downhill, I was not alone. Friends gathered my little guys to have dinner with them. Friends brought me a hot dog and chips so I could load up on salt. My husband’s cell phone buzzed like crazy as friends texted him to see what they could do. Friends pretended not to notice when I rejoined the party, much later, with a red nose and puffy eyes. Friends prayed for me in the midst of it all. My Best Friend assured me, “I am your refuge and strength, a very present help in trouble.”

How do you feel when presyncope hits? Have you had embarrassing public moments due to something your body did?

4 thoughts on “Presyncope in action, according to Kristi”

  1. Oh, what a story! I feel for you, girl! I’ve had my “passing out in public” moments too!
    The worst time was when I passed out in the middle of Central Park. Our town was having a race, so the whole pavilion was filled with 100+ people (most of who I didn’t know–not sure if that was a good thing or not!! 😉 ) I was walking, and started feeling myself go…Everything got blurry, and as if I couldn’t control myself. I fell on my Dad. (He appreciated that lol) There were paramedics already there (because of the race), so they came over and took my vitals. The embarrassing part was I wasn’t even running in the race—I was just there to take pictures! It took me a while to come around (in fact I didn’t until I was in the cool car). It was hard to get the paramedics to understand that I didn’t need to get on the ambulance to get checked out–they kept on asking “so what is POTS?”
    Ohhhh, my…chronic illness, what are we going to do with you?

  2. Presyncope, dysautonomia……these two words are ones that I have just recently been introduced to. I have dealt with near fainting spells for over 20 years with doctors telling me a range of reasons why: mitral valve prolapse with superventricular tachycardia, don’t know why, or it’s all in my head. In the last six months I’ve been diagnosed with dysautonomia (which type? I don’t know yet).
    How do I feel when these moments of near fainting hit? Well for me my legs get heavy and it becomes painful and difficult to walk; I get short of breath; my ears feel a warm sensation; most of the time I get a headache and sometimes I’m also nauseous; I get grey tunnel vision or my eyesight gets browned out while I can still hear everything around me; it is difficult to think “brain fog”; depending on the situation at times I experience tachycardia and chest pain. I don’t recall if I’ve really tried to talk to someone during these moments, I’m good at hiding the little episodes most of the time. It usually takes me at least a day to recover, at most it took me four days. It depends on how intense the experience was.
    Have I had embarrassing public moments due to these things? YES! I think most of my times have been out away from home. That is where my body tends to get stressed, and without doctors guiding me how to avoid “trigger moments” in the past I’ve been left with numerous episodes of drama!
    Let’s see there has been: in class during high school; during a youth camp concert where I was carried out by several friends and picked up by an ambulance then later told that people all around me were crying; during college when in the ER with the friend that took me to the hospital the nurse asked if I would like to have my “husband” stay with me; during college in class – ambulance again; during college behind the dorm on the walkway one night; during college with my roommate driving way to fast to the ER with her hazard lights on; at work – wheeled out on a stretcher by all my co-workers who were looking on; in the single’s Sunday school class at church – carried away; at church/work almost every time I walk up a flight of stairs and people look at me and ask “are you OK?” – I just nod yes and smile.
    Again how do I feel? Well, it’s a combination of feelings that arise. There is a part of me that thinks of all the times I’ve been told “it’s just in your head” so I try to deny that anything is happening. There is anger – inside I’m silently yelling “can’t you see that something is wrong with me? Doctors please figure it out!” Part of me wants to go ahead and completely pass out just so that I can get it over with – seems like I would just feel better then. Pity on myself wondering why can’t I just get it together. Embarrassment from letting people see I’m having a problem or wondering what they are thinking about me. Sadness because I can’t do the things I used to be able to do. There is all of this while at the same time I have peace and acceptance of health difficulties because I know that I am in God’s hands. And ultimately I have hope from knowing that if I do not see healing while I’m here on earth, that I will be healed in heaven!

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