Newly diagnosed: looking for support on symptom management
This has been a wild ride! Just got diagnosed on 5/8. It’s been one hell of a time.
My symptoms are somewhat atypical, as I don’t often feel the tachycardia immediately after standing up or getting up every time. I have more of a delayed response and often have symptoms a few minutes after sitting back down and settling or, after standing up for some time.
This diagnosis has put me through the wringer… I’ve been battling severe symptoms since November 2025, and it hit a head in February 2026 when I was hospitalized. Truly a whole mess. They went through the gambit— thought hypoglycemia due to pre-diabetes, a thyroid problem/ grave’s, lupus symptoms. A. Freaking. Mess.
I’m both relieved but frustrated by the diagnosis. They believe I may have a mild autoimmune condition in addition to the POTS.
No one in my family has this, so I’m looking for any support on symptom management. My symptoms are: tachycardia (of course; 9% tachycardic per Holter and CAM Monitor), nausea, headaches, GI issues (IBS-like 😭), heat sensitivity, dizziness, heart rate fluctuations (from 40s-130+ bpm), anxiety, shakiness in my hands specifically, sweating, chronic fatigue, pain in what feels like my bones early in the morning, hands and feet “falling asleep” feeling, insomnia and a total lack of appetite.
Any support/ suggestions are appreciated because this is so overwhelming! TIA!