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sativa

652d

hello! (im undiagnosed & going to doctor soon w a mass list of my symptoms. im just autistic and very anxious bc it’s my first drs alone and im preparing) i experience constant head pressure/pain, dizziness/head pain worsening after standing more than a few seconds depending on how i feel, more symptoms that happen when i continue to stand, and just a lot of even more separate symptoms that is becoming obvious to new people i live with, which led me to be aware im struggling more than i thought. symptoms r getting worse and it’s affecting my life way too much and im tired. i had an ecg/heart ultrasound whatever it was a few months ago and it came out healthy. how would i bring it up to my doctor again? :( i don’t want to come across as attention seeking but im desperate bc i just hurt so bad every day and want answers lol

Top reply
    • _Aja_

      652d

      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.

    • _Aja_

      652d

      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.

    • ARiverG

      652d

      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.

    • beautifulnightmare

      652d

      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.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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