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JustRachelle

454d

Well I have POTS. 😞🤦🏽‍♀️ I had an appointment with my cardiologist again today and we redid the echocardiogram and stress test. I failed both I’m assuming since my test results say “abnormal” but my doctor should me the papers and said “you definitely have POTS your heart rate jumped to 133 within 18 seconds” 😩 Tomorrow I start with a low dose of a beta blocker but if it mess with my Raynuads they will change the medication to something else.

    • EncyclopediaFae

      447d

      I just got my diagnosis as well and have an echo on the 21st. Cardio took one look at my EKG results and was like “yeah we don’t need to do a stress test”. Told me they could and he could refer me to my local POTs clinic but he was like “honestly it’s just more expenses”. Doing the echo just for due diligence sake and we went over the lifestyle changes. I’ve mostly been managing with salt, electrolytes and hydration as well as avoiding lifting or reach up high and being mindful of how my body is behaving at any given time. Taught my pet dog to do DPT at home, do things like TSA pre check when traveling, compression gear is a must, avoid going out when the temp is too high, I likely start using a mobility scooter or wheelchair next time I go to a theme park to avoid standing for long periods and I’m looking into getting an Embr Wave which is a device that looks like a smart watch kinda to help cool you down as my episodes are often accompanied by temperature spikes/low grade fevers or trigger by hot/humid days. I’ll also be getting a liquid barometer soon to help add to that whole mindfulness/awareness aspect. I already take fistfuls of medications and supplements and I’ll be avoiding anything other than my salt tablets unless it becomes essential. IVs and PICCs are out of the question for me as well because I have preverbal trauma/ptsd involving needles from my time in the NICU and I’m on a waiting list to see an EMDR specialist because I’ve literally tried everything else. I’d have to be on horse tranquilizers 24/7 if I had a line in and I’d be completely bedridden.

    • RyeRyeBread

      452d

      Yay!! Congrats on answers and diagnosis 👏 I'm currently on Nadolol and it normalized my heart rate 🤯 it did mess with my temperature regulation, and I may also have raynauds that is way more noticeable and crappy now 🥲 But, the trade off was so worth it for me. like another comment said, there are many many medications to try, so chances are there will be something thag works for you! Good luck!

      • JustRachelle

        452d

        @RyeRyeBread I’m about to start taking Zebeta and see how that does.. I have Raynuads as well however my cardiologist said if it messes with it too bad I can definitely try another medication. Hopefully I won’t need medication for long.

        • RyeRyeBread

          452d

          @JustRachelle Do you plan on managing it without medication eventually? Medication is basically for life, since POTS [and HR stuff] is 😕 (unless of course you wanted to try to manage your symptoms through alternative means, like with salt tablets, electrolytes, etc.) Medication should help settle ur heart a bit, and sometimes you don't even "feel" like you're on medication, if that makes sense? (I only notice feeling off when I forget my meds and my symptoms flare in full force until I take it 😅)

☝ 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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