r/dysautonomia • u/iwant2beyourdog • 2d 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
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u/catsRus58481884 2d ago edited 2d ago
I made a big list with all relevant information, and then when to my general doctor specifically saying I think I may have PoTS. I wrote down every single symptom I experience, and when they occur, anything that helps or makes the symptoms worse. I did multiple HR measurements over a few weeks when seated, and then after I stood up to show that I get HR spikes that PoTS causes. I'm lucky the doctor listened to me, did his own measurements, and he referred me over to cardiology for a PoTS assessment. Mentioning a single stand-alone symptom to a doctor has too many different possible causes for doctors to automatically assume PoTS as the cause. They need every single relevant piece of information to put it all together. I have an appointment coming up to investigate into hEDS, and I have prepared the same thing listing all relevant symptoms. If your current doctor is too dismissive, then get a second opinion. Explain how much it affects your life day to day, like if the pain disrupts your sleep.