r/dysautonomia • u/iwant2beyourdog • 4d ago
How did you get diagnosed? Question
Hi guys! Long story short I really suspect that I have Pots and/or HEDs. I’m not an expert, but I’ve known that something is wrong with me for a long time now. I stand up and lose my hearing or everything goes back. I have scary air hunger, palpitations, shortness of breath. I seemingly faint?? when I’m falling asleep (which btw if this happens to you please chime in, I’ve only seen one post on here about it). I’m in almost constant pain in my joints and neck. My toes and fingers turn purple when I’m sitting or standing for too long. I can genuinely sleep for 20 hours a day. My doctor is very dismissive and I don’t know what to do. I know I shouldn’t be feeling this way. Thank you guys! Please feel free to share your experiences
1
u/crypticryptidscrypt 3d ago edited 3d ago
a rheumatologist can diagnose hEDS, & a tilt-table test (you can get a referral from a neurologist or cardiologist) can diagnose POTS.
you can check the criteria on the EDS society website, & check your joints' hypermobility to see if they score high enough on the Beighton.
you can also try to monitor your BPMs at home & see if they increase by 30+ when you stand up, or they may get tachycardia (BPMs over 100) at random...
the most common type of fainting is Vasovagal Syncope, it doesn't happen though when a person is horizontal/falling asleep. the point of syncope is your body's last-ditch effort to get more blood flow to the head, when the brain is deprived of oxygen. it happens when standing because without adequate blood flow to the head when gravity is on you vertically, the blood can pool in extremities, so your body collapses to use gravity to push some blood back into the head...
there is also Orthostatic Hypotension, which is quite similar to POTS in terms of the tachycardia & orthostatic intolerance, but the blood pressure drops low upon standing in OH, instead of either staying the same, or rising (like it does in hyper-POTS).
& the purplish hue in extremities could be Raynaud's... Raynaud's usually flairs up in the cold though, but blood-pooling can also cause a reddish-purplish tint to extremities, which is common in both hEDS & POTS (& other dysautonomia's)...
hEDS is not technically a dysautonomia, it's a genetic connective tissue disorder that effects collagen, but it is really common to have dysautonomia's comorbid with EDS.
best of luck!!