21 Things People Don't Realize You're Doing Because You Have POTS
Postural orthostatic tachycardia syndrome (POTS) is a form of dysautonomia, or a malfunction of the autonomic nervous system. POTS specifically is characterized by an excessively high heart rate upon standing, plus the other symptoms of dysautonomia.
In order to manage the various symptoms of POTS, some people have developed certain coping mechanisms or tricks to help them navigate their daily lives. However, if others aren’t entirely aware of your condition, they may be confused as to why you’re always putting salt on your food, or sitting down anywhere you can.
To help others better understand what life is like for those with the condition, we asked our Mighty community to share things other people don’t realize they’re doing because of POTS. Maybe some of these will sound familiar to you, too.
Here’s what our community shared with us:
- “Putting salt on everything. People think I love salt, I’m just trying not to pass out.” – Jenifer W.
- “Laying on the floor of a supermarket to stop the dizzy spells. I’ve gotten some looks, but I haven’t fainted yet!” – Eryn C.
- “Buy Gatorade… people think I’m just athletic and am replenishing my electrolytes from working out… little do they know the only thing I can do at the gym is walk on the treadmill.” – Bryenna R.
- “Always sitting with my legs up and crossed like a pretzel. It prevents blood pooling in my feet.” – Melanie C.
- “Spend a lot of time in the bathroom or go out to my car… I don’t have to go and I am not leaving, I just want privacy if I am symptomatic and to avoid the whole ‘you don’t look so good’ when I go sheet white and can’t walk straight. So I go sit down in the bathroom or lie down in my car. Whatever is closer just to avoid passing out in front of people.” – Caitlin M.
- “Sitting down whenever I can – I’m not lazy, either I just get really dizzy if I stand for too long or my heart rate is abnormally high.” – Michelle A.
- “Wearing earplugs or plugging my ears. I’m easily overstimulated and getting overstimulated triggers my symptoms.” – Kalah J.
- “Shake my leg while I sit so that when I go to stand up I won’t get dizzy or pass out. I don’t even sit still; I’m constantly changing my position. I also don’t stand still for long; I sway or shift my weight around.” – Ansley D.M.
- “Hugging my boyfriend. People just think I’m trying to be cute with him when in all honesty I normally do it so I don’t fall.” – Kierstin P.
- “Laying down for at least 20 to 30 minutes after a shower. People think it’s just because that’s what typical 19-20-year-olds do, but I’m doing it so I don’t pass out.” – Abby T.
- “Putting my feet up whenever possible in situations that it wouldn’t seem rude. It isn’t a matter of being so lazy that I want to recline, it is a matter of needing to bring my extremities closer to my heart level to minimize getting dizzy or lightheaded as much as possible.” – Charlene R.
- “Taking frequent rests during physical activity. Just because I’m young doesn’t mean I’m healthy.” – Kari R.
- “Wearing knee-high compression socks. People always ask if I’m trying to bring knee socks back in style but I just need them to help with blood flow.” – Jena D.
- “Sliding down the wall when I go to sit down. I’ve had times where I’ve almost passed out so I’ve learned to slide down the wall. Now it’s a habit.” – Sianna T.
- “Randomly sitting on the ground if pre-syncope occurs (early warning signs that I’m about to pass out or having a seizure-like state).” – Deanna G.
- “Keeping my feet moving to keep the blood to my brain and clenching my hands as well.” – Emma L.
- “I keep snacks in my handbag all the time and no matter where I go I take my own bottle of drink, because I have to drink more than an average person. When I’m a guest in somebody’s home, taking my own bottle of pop can come across as me being rude, but people tend to just get one bottle for everybody to share which isn’t enough for me.” – Sarah P.
- “Bend my knees one at a time, or squat on the ground. I sometimes hyperextend my legs while standing and I don’t realize it… and things begin feeling distant or my vision fades. Bending my knees helps alleviate this.” – Tab M.
- “Staring off into space because of the brain fog. People think I’m staring at them even though I’m not.” – Kayla C.
- “Avoiding the heat, including showers, because heat causes vasodilation resulting in lower BP and either fainting or a big jump in HR.” – Alexandra E.
- “Literally chugging an entire water bottle in one go.” – Bree S.