16 of the Worst Symptoms of Dysautonomia (and How People Deal With Them)

Dysautonomia is an umbrella term for a number of different conditions in which the autonomic nervous system malfunctions. While your individual set of symptoms will largely depend on your specific diagnosis, none of them are exactly desirable.

Dysautonomia symptoms can be difficult to manage, but many of those living with the condition have found coping techniques that help them through the tough flare days. We asked our Mighty community which symptoms of dysautonomia they consider the worst and how they cope with them. If you’re struggling with these symptoms as well, check out the following coping strategies and remember that you’re not alone in your battle.

Here’s what the community shared with us:

1. “My worst symptom is a severe heat intolerance. It makes it nearly impossible to participate in any outdoor activities during the summer months. I use cooling neck wraps that help a little, but even with them, I have learned that I have to stay indoors with the air conditioning most of the time.” – Hannah W.

2. “Right now mine is definitely brain fog. Every time I try to explain it people just assume I’m lazy or forgetful. I’ve yet to find a way to cope with it so if I’m around others during a bad flare, I just sort of joke around the brain fog.” – Frankie P.

3. “Everything that goes into standing upright. Blood pooling, spiked heart rate, blackouts, fainting, instantaneous stabbing headaches, tremors, muscle weakness, et cetera. It makes everything in life so exhausting, and many simple things down right impossible.” – Jaydon Y.

4. “Feeling completely dehydrated all the time no matter how much I drink, how much salt I consume or what medications I’m on. This then is made worse by the heat intolerance and syncope. Electrolyte water, coconut water, lots of salt, Vitassium from Salt Stick (created for POTS patients) along with a couple prescriptions from my doctor are what make me able to handle my symptoms.” – Tabitha H.

 

5. “The fatigue that comes after having a syncope episode. It’s literally debilitating fatigue and there’s nothing I can compare it to. It’s hard to explain to my family. I have to lay down and I have to sleep right away, otherwise I’ll just fall asleep wherever I sit down.” – Elissa C.

6. “Feeling faint all the time and blacking out. It’s embarrassing when you can’t complete your shopping without having to sit in at least one of the aisles. It’s hard to cope with it because you never know when it may happen and you don’t know how people will react (I usually get a lot of weird looks and people staring at me). I usually just tell myself it’s OK, that it’s going to happen because it’s my body and not to let the looks and whispers get to me.” – Savannah E.

7. “Enjoying a hot bath is hard to pull off. I have get my core temperature down after one with cold water or I can’t regulate my body temperature. Seems to work on the days my body needs a good soak to ease a pain flare.” – Pixie Q.

8. “The worst symptom for me is feeling lightheaded all day long. Not being able to even shower without worrying I might not be able to make it. Whenever I feel like that I just lay down and put my feet up and then I faint. It could be hours before I wake up. Everyone thinks I’m just very lazy, when in fact I’m just out… unconscious.” – MariaElena V.

9. “For me it is the headaches that come after dizzy spells and hot flashes. They last hours and are tricky to get rid of, and I never know when they will come on, so it is hard to be prepared.” – Nicolette O.

10. “For me, it is the low blood pressure when storm fronts come through. I eat a lot of Snyder’s gluten-free pretzels and Lays potato chips, drink a lot of Powerade and coconut water and wear tight leggings to try to keep my blood pressure from bottoming out.” – Amber S.

11. “Personally, syncope (fainting) is the worst symptom for me. I deal with it in several ways. I use a wheelchair on bad days and a rollator walker on good days. I can sit down on the rollator walker if I get pre-syncope so I don’t actually faint. Sometimes, I just sit down on the floor, no matter where I am (mall, grocery store, parking lot, etc.).” – Hannah W.

12. “The inability to stand for more than a few minutes, if that. Anytime I’m upright I’m immediately looking for a place to sit down and catch my breath and stop the dizziness.” – Molly S. C.

13. “Severe heat intolerance and fatigue. It comes together when I get tired because of the heat, and I live in a place where we barely have winter and it’s always really hot. My way to cope with it is to carry a small bag that keeps my drink cold and to check where am I going and can I count on the A/C there. I try to do everything either really early when it’s cooler or after the sun starts to go down. I make my schedule, especially in the summer, and put in time to rest and take a nap.” – Debora T. B.

14. “My worst symptom is pre-syncope. I get horribly nauseous and my face starts tingling. Before I faint is the worst feeling ever.” – Lyssa A.

15. “Fatigue! I remain prone as much as I can. When I have to get up, I try to accomplish a few things and then lay back down. Also, I’m ahead of the game by remaining emotionally happy and not getting stressed out. My energy is too valuable and only I will decide what I will use my energy on.” – Angela G.

16. “Passing out, and when I do finally wake up (could have been a few minutes to 30 minutes), not realizing I have blacked out. I try to remain as calm as possible; freaking out is not an option when your body is already having problems responding to your commands, so I take deep breaths and try to keep going.” – Melissa O.