Undiagnosed and Anxious: Seeking Answers for My Symptoms

Don’t worry that “the test are healthy” I’m diagnosed with POTS after a tilt table test (TTT) and my ecg (had several) and echocardiogram (heart ultrasound) both were astoundingly “normal”. For the echo, that’s not really where the problem is, and for the ecg, I didn’t move at all, so it couldn’t see the problem. Absolutely keep advocating for yourself! This condition *is* exhausting. It’s effecting your life! You’re not seeking attention, you’re seeking answers.

My path to diagnosis took years. I was seeing this one PCP who blamed everything on the fact that “I just got out of a relationship” and that “I’m seeking attention since I’m lonely”. Omg. It was horrible. I ended up switching to a new PCP who sent me to a horrible neurologist who dismissed me and then to a GI who said I was too complex for him and to a cardiologist who I had to beg to order a tilt table. I ended up getting diagnosed after few years or so of being thrown around. What I suggest is looking into providers in your area who specializes in the condition you think you may have and they can do a good work up on you. Like out where I live we have a new POTS clinic and an EDS & Complex Neurology specialist (I’ve seen both). We know our bodies more then providers do so even if you are gaslit, keep looking and advocating for yourself. Maybe even join a support group on Facebook for people in your state with your condition who can give insight on doctors in your state they see or suggest! I did that too and it’s been so helpful.

I got my diagnosis sooner than I hear most people do. It only took 6 months but oh my goodness were those months hell. I was treated like I was crazy, thrown on all kinds of mental health meds and dismissed by professionals. What helped me was finding a heart dr who has pots himself. Thats all it took but I know I'm fortunate to have found him because most drs I saw were not familiar with pots or just saw it as a mental illness. My advice is to advocate for yourself, keep a journal of your vitals if you can like blood pressure and heart rate. Take it while laying down, sitting and standing. Document everything and if that dr doesn't listen change drs until someone does.