What Living With POTS Is Like

I am completely tapped out. I'm so exhausted, I woke up with horrible chest pains last night, and I can barely stand up for any length of time. I've only ever gone to the ER when I've had the flu and couldn't stop vomiting or something. Would I be out of line to go to the ER now?#PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS

I'm curious how other people feel about driving. If my tach is out of control I wait and recline my chair until I'm under 100 bpm, and then get going. If I'm feeling lightheaded I usually ask someone else for a ride. If I'm driving and start feeling crummy I take my left foot and bring it up onto the seat so my leg is up and that seems to help a little. Or I start chugging water and eat a salt tab. The only time I've actually passed out was during my medical testing, but I'm still cautious, especially when I'm bordering on hypotension. Anyone else have tips or perspectives?

#PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #Dysautonomia

I believe these are not mental anxiety issues, but rather something triggering my POTS. I'm miserable. I can't sit still and my body feels like it's going to jump out of my skin. It's been going on for days. I can't take the attivan or Klonopin I have because I have to work and I'd be a drooling zombie on my computer.

Please, any tips to help this calm down? #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS

I’m in a flare up, and every single joint hurts. I only left the house once today to go grocery shopping, and I almost didn’t make it back. It is snowing/raining today, so I wanted to ask if anyone finds their chronic pain worsened on days like these? I haven’t looked into this before, so I thought I would ask.

I’m also very crestfallen. Chronic pain today for me is 8 out of 10, and it is very hard to move. Regardless of the weather’s alleged impact, what are your remedies for particularly painful days?

Thank you guys so much. I was diagnosed with HSD this week, and I have POTS. Although I personally believe I have hEDS, it doesn’t matter to me at this point. Thank you.

#LivingWithPOTS #EhlersDanlosSyndrome #ChronicPain

When you’re feeling dizzy, get a flavored salt tablet and place it under your tongue. If you are nauseous, you don’t have to taste it, but your body will still absorb it. Works great! #POTS #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #POTS #POTS

Sometimes I say I don’t need people to catch me, because I am friends with the floor. The floor catches me sometimes and laughs at/with me sometimes and sometimes lands a well-meaning punch too hard. I have to be patient with this friend who often shows up unannounced, thinking to surprise me and it will be great fun. When I’m writhing there, if someone is in the room, I know they cannot contain my pain. It hurts me to see them watch me there - someone they love’s body trying to turn itself inside out. They plead, beg and bribe the gods for a way that they can help. There’s not. I dance with the edge of knowing what I can control; where is my power and where isn’t it? But most often able people have not fought this war of attrition, and are not prepared for the blow to the gut knocking all the air from their hearts. Seeing them powerless and unaccustomed to this pain adds the hurt of another too and it weighs so much. But the floor, for all its flaws, is quiet after the initial impact. I scream and it listens.
#fall
#EDS
#AutonomicDysfunction
#Dysautonomia
#HEDS
#PosturalOrthostaticTachycardiaSyndrome
#LivingWithPOTS
#MastCellActivationDisorder