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MollyB

389d

Anyone diagnosed with POTS but know full well it isn't postural changes causing your symptoms? I have episodes of tachy/brady where I shoot up to around 170bpm, immediately drop to around 40bpm then resume a normal rate, but this can happen at any time and has been recorded on holter monitors as happening in the middle of the night so definitely no postural change

Top reply
    • tigershark98

      150d

      Inappropriate Sinus Tachycardia - IST you might want to look into that

    • tigershark98

      150d

      Inappropriate Sinus Tachycardia - IST you might want to look into that

    • 55isMe

      150d

      Dysautonomia. I've had mine diagnosed at simply inappropriate tachycardia. 30vyears later, this time is truly POTS. Other than the trigger (and thus the frequency), it really is the same result. Both times, heart meds helped and hurt. I think the wrong ones hurt and caused the first round. Calan, calcium channel blocker and Midrine were the saving meds back then. This timecaround, absolutely POTS, 170bpm with 5 minutes of upright, even significant hr increase with sitting upright (i need to maintain 130 degrees long term or 70 degrees for shorter times). Metoprolol + spironolactone have virtually stopped odd triggers. So now just the upright. Also had Ace inhibitor in that mix for a month, i liked it but unfortunately my kidneys didnt.

    • MollyB

      388d

      I started propranolol but there was no change so after about 6 months they added Bisoprolol but again no change at all so I stopped taking them both in the end. Mine started the day after a car accident but apparently that's just a coincidence šŸ™„

    • Rhoda

      389d

      I had a weird period of time around last year sometime when my heart rate would go up to the 170s usually in the morning and especially if I was driving. Everyone kept telling me it was anxiety, but I have been WAY more anxious with full blown panic attacks and this was not that. It was so consistent, too. The cardiologist ran a bunch of tests, didn't find anything, so he put me on beta blockers and within a few hours it was fixed. I've literally never had anything medical that was that easy to solve. I still take them so i assume that means if I wasn't then my heart rate would still be high. Or it would have started dropping too low. I thought it was like a weird vascular reaction to an angiogram that I had right before this all started. When I asked the doctor if it could be that especially considering the EDS, and he couldn't get over the fact that I had enough basic medical knowledge to ask that question, it was a bit condescending and also meant I didn't get a good answer. I love doctors /s

    • ak2003

      389d

      A big trigger for my episodes is a bunch of stress

    • Panda_Rose

      389d

      I had POTS symptoms that went away when I started low histamine diet. For me there was a strong association between histamine and flares

      • MollyB

        388d

        @Panda_Rose ooh that's interesting what type of foods have histamine?

    • katehall

      389d

      Yes! For me itā€™s triggered by a Mast Cell (Mast Cell Activstion Syndrome) response and really brought on by mold in my apartment. Can also be triggered by foods/coffee or if I havenā€™t done a B-12 shot

    • spookyspoonie

      389d

      This is a sign of being on the more severe end of the POTS spectrum. Raynauds and Ehlers Danlos also mean you have higher chances of being on that severe end of symptoms. I have severe pots, and have episodes of rapid tachy & Brady in the middle of the night when I have been laying down for hours.

      • MollyB

        389d

        @spookyspoonie thankyou, I just feel like I was thrown a diagnosis of pots and discarded without any thorough investigation. The cardiologist who diagnosed me said it didn't really fit POTS but he didn't know what else it might be so diagnosed POTS and discharged mešŸ™„ I'm seeing an arrhythmia specialist in a few weeks so hopefully they will delve a little deeper

        • spookyspoonie

          389d

          @MollyB I hope that they are better able to help you. Whether pots is the correct diagnosis or not, more investigation and explanations by a specialist are often helpful. Wishing you the best ā¤ļø

    • Alexiii

      389d

      Mines turned out to be palpitations and they found something abnormal in between my lungs they still havenā€™t found out if itā€™s a blood clot or tumor and they also found multiple polyps all through out my chest

ā˜ 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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One user mentioned that they usually suffer from tachycardia but have observed bouts of bradycardia and low blood pressure. Another user shared that their pulse can vary from 200 down to 43 bpm, with the 40s typically rebounding from the high. However, these experiences may not be directly related to POTS, as individual symptoms can vary. It is important to consult a medical professional for a proper diagnosis and understanding of your specific condition.

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