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414d

How did you start to think you had POTS? / How did you bring POTS up to your doctor? I've experienced symptoms for a couple of years now, but after getting sick, my symptoms got severely worse. Every blood test, x-ray, and head CT has come back normal. The doctor told me it's normal and to drink more water. Passing out or getting dizzy every time I stand up is not normal. My heart rate gets extremely high, and my blood pressure gets low. Blood pooling in my legs is not normal. I want to at least get tested for POTS, so if it isn't that, we can look for something else.

Top reply
    • Letter

      238d

      I was tested for it when I was sent to a now retired CFS/ME specialist. I was five out of ten. I had to learn to sit down. I find walking easier than standing. In looking back it confirmed I was the only one becoming upset in long cues and why I was. I need massages regularly and different medicines work. I need to watch how much coffee I drink, and the worst thing for me during lock down was experiencing heart attack like symptoms. I intend to buy more coconut water for electrolytes and I enjoy adding salt liberally to my food

    • Letter

      238d

      I was tested for it when I was sent to a now retired CFS/ME specialist. I was five out of ten. I had to learn to sit down. I find walking easier than standing. In looking back it confirmed I was the only one becoming upset in long cues and why I was. I need massages regularly and different medicines work. I need to watch how much coffee I drink, and the worst thing for me during lock down was experiencing heart attack like symptoms. I intend to buy more coconut water for electrolytes and I enjoy adding salt liberally to my food

    • Student_girl

      363d

      You can also ask them to do a “poor man’s tilt table”, which involves you laying down, checking bp and hr, and doing the same standing. While this is not as definitive as the autonomic testing I mentioned, it can give them an idea of if you have pots. If this test is positive, they are more likely to order the autonomic tests

    • Student_girl

      363d

      There’s a series of tests that they can do to definitively diagnose or rule out pots/Dysautonomia. A tilt table, sweat test, and breath test. I had mine done by a neurologist, some cardiologists also perform these tests.

    • thrillsnchills

      411d

      ❤️❤️❤️❤️❤️❤️

    • howell

      411d

      Definitely check and record your hr whenever possible. I have a Fitbit that keeps track of it and documents throughout day and night. Keep a record. Another thing, check and see whether you have family history of dizziness, fainting, etc. Having something you can refer back to will give them incentive to not brush it off. Hell, my doctor said over and over that my hr was just anxiety even with family history until she actually saw it for herself. Advocating is hard, and dealing with a chronic illness at the same time is the worst. Make your doctors tell you and document the exact reason why you don't "need" more tests. Make them think, even if it bruises their fragile ego to admit they were wrong. You can do this

    • just_Jay

      412d

      This!!! I'm going through the same thing. 'Oh your just overweight', 'just drink more water', 'well your blood pressure is perfect right now'. My iron, great, water intake, on the poor side but I get enough. You just gotta be straight up. Don't ask. Asking leaves the answer to be no. Asking language like could you refer me to, do you think you, what do you think about- none of that. "I would like a tilt table test." If they ask why "I believe I have pots" If they say something like they don't believe you do just pull out that "I'd rather be safe then sorry, please refer me to cardiologist" Advocating for yourself and not letting that person wave their degree above your head is a big step. Sometimes you gotta be a little sturn. It's YOUR health. Not theirs, and if you think you need testing, go advocate for it and get it! I wish you the best of luck

    • thrillsnchills

      413d

      Tell your doctor you want to be tested for pots and if he won't do it ask to see a cardiologist

      • x.starman.x

        412d

        @thrillsnchills thank you!

☝ 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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Some people started suspecting they had POTS after experiencing symptoms like dizziness, rapid heart rate, fainting, and blood pooling in their legs. They brought up these symptoms to their doctors, who then conducted tests to determine the cause. It's important to discuss your symptoms with a medical professional and ask about the possibility of POTS or other related conditions.

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