20 Surprising Symptoms of Dysautonomia

There are some symptoms you expect to deal with when you’re diagnosed with dysautonomia. Lightheadedness, fainting and tachycardia are some of the best-known symptoms of postural orthostatic tachycardia syndrome (POTS) and neurocardiogenic syncope (the most common forms of dysautonomia). But since dysautonomia can affect your entire autonomic nervous system, and since the condition is still not as widely understood as it should be considering its prevalence, you may also experience a range of other symptoms you weren’t expecting at all.

It can be helpful to know the possible symptoms that can be attributed to dysautonomia, so if any happen to you, you’re not caught off guard — and you know you’re not alone in these challenges. So we asked our Mighty readers with dysautonomia to share the surprising, unexpected symptoms they’ve experienced. Perhaps some of these will ring true for you.

Here’s what our community told us:

1. “The feeling of the floor about to give out under me right before I black out.” — Rachel F.
2. “Temperature sensitivity — getting a slight chill then shivering for 10 minutes under piles of blankets until my body can regulate again.” — Kirah D.
3. “How fast I can overheat and feel sick, dizzy and just zone out and stumble. I work in a bar so I’m worried people will think I’m drunk.” — Bun Beanie A.
4. “My blushing. Half of my face will blush bright red, making my invisible illness visible. People often ask if I am OK. My other symptoms do not show. It was a weird new thing.” — Elisabeth W.
5. “I can’t shower normally. I have to sit down after showering for even five minutes. It’s exhausting to have such simple tasks take so much effort.” — Valerie K.
6. “Sudden blood sugar drops. I’ll be fine, then all of a sudden I’m cold, clammy, irritable and foggy. And it’s my blood sugar getting too low.” — Meg S.
7. “Seziure-like activity (such as convulsions and jerking movements) after waking up from a syncope episode. My cardiologist says it’s called ‘convulsive syncope.’” — Hannah W.
8. “The need to always have one leg up on something when I’m standing. For example, I can’t stand up without something to put one of my knees on. I often have my rollator with me, but if I don’t, I have to find a chair or something else because I can’t keep both feet on the ground long and stay upright. I noticed myself always feeling better when I did this even before I was diagnosed with dysautonomia.” — Carissa H.
9. “How much anxiety can increase all the dysautonomia symptoms.” — Rachel M.
10. “The chest pains have come in 22 years [after I first got sick]. I can hardly breathe most of the time, but it’s always worse when I’m laying down, propped up or not. I feel the elephant on my chest, and the slightest raise in my stress levels makes my chest hurt like someone just took a knife to it.” — Stella C.
11. “The not knowing if I’m hot or cold feeling. Not having any idea if I need to be under more blankets or if I need to take everything off.” — Carissa H.
12. “I’ll be freezing from the knees down, like ice, yet my head and neck are sweating!” — Sherri H.
13. “The spontaneous vomiting that happens when my heart rate gets too high, that was definitely a surprise.” — Sarah P.
14. “Little things increase my heart rate well above 120 even with taking a beta blocker. Loud concert music and especially fireworks make my heart beat so fast, pounding outside my chest where it actually hurts so I don’t enjoy those much anymore.” — SanDra E.
15. “Not all baths are relaxing. I laugh to myself when someone says to go home and take a relaxing hot bath. They don’t realize that without perfect planning and a good amount of luck, that ‘relaxing’ bath lands me on the bed afterwards with a heart rate over 120, bright red skin, a pounding head, sky-rocketed blood pressure, dizziness and nausea.” — Shay K.
16. “I didn’t expect to have such a difficult time doing things. Like trying to walk into a store without getting my heart rate up so much that I start seeing spots and almost pass out. I never expected sitting up to take so much effort, or putting on a brace to be a challenge. I dealt with so much with my hEDS before the POTS flared, I never imagined it getting harder. I never thought I would have to have people constantly checking on me to be sure I was still conscious. I never expected to have to use a shower chair or a wheelchair or not be able to drive anymore.” — Catherine M.
17. “Maybe more a side effect than a symptom, but the inability to see movies in theaters. Too much sensory input puts the sympathetic nervous system into overdrive, and with dysautonomia it just can’t stop — the result is a huge flare.” — Sam S.
18. “My legs turning mottled from the cold. Even if I wear sweatpants in the cold, my legs still get a mottled pattern on them, and it’s hard to get warm. Temperature intolerance is like a catch-22, it could be 50 degrees out and it’s too hot for me, or it could be 50 degrees out and it could be too cold for me, no matter what I wear that day.” —Michelle D.
19. “I tried to do squats to be stronger. Barely managed three times, then nearly passed out. My pulse was at 166 and I could barely breathe, my blood pressure dropped. I guess the blood had a hard time leaving my thighs during these exercises.” — Sabrina L.
20. “As I’ve gotten older it’s gotten worse. I think the most surprising was at an amusement park a couple years ago. I used to go all the time, and I loved it. This time I got so overheated I was like a rag doll. I spent the day inside a building slumped over on a bench because I didn’t have the energy to even walk.” — Ashley B.