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Annakaego

705d

I went to see a cardiologist because my immunologist/allergist thinks I may have POTS and not MCAS. All he told me to do was “eat more salt” and prescribed me propranolol which I don’t know when to take or why. He didn’t explain his decision to prescribe this medication or even formally diagnose me with POTS (we do think I have it). Should I try taking this medication? Any suggestions on how to manage heart palpitations, dizziness and tremor?

Top reply
    • Margaret_Elizabeth

      704d

      For my pots, I like to drink electrolyte drinks every morning, my favorites are the nuun ones, I take salt pills every morning, the brand is salt stick, I usually take 4-6 a day, I wear compression socks, and I try to keep my day to day routine super similar by eating sleeping and exercising at the same time every day.

    • Margaret_Elizabeth

      704d

      For my pots, I like to drink electrolyte drinks every morning, my favorites are the nuun ones, I take salt pills every morning, the brand is salt stick, I usually take 4-6 a day, I wear compression socks, and I try to keep my day to day routine super similar by eating sleeping and exercising at the same time every day.

    • Annakaego

      704d

      Thank you both so much for responding!!

    • PinkCrow

      704d

      I had pretty much the same experience! Despite the dismissiveness, my doctor’s recommendations of propranolol and electrolyte supplements have helped me. I literally crave salt when I’m getting really low so that helps clue me in too… Unfortunately I was not “formally” diagnosed either— they described the tilt table test used for formal diagnosis to me and said it wasn’t necessary (and few insurance companies cover it apparently?) We did do a few sit/stand type tests where I would go from laying to sitting to standing and they would take my blood pressure at each step. This test seemed to be enough to put POTS on my chart, but I am guessing the tilt table test would be much more revealing. Like GuitarGal has said it’s not a one size fits all situation! My dizziness/heart palpitations get better with a routine of very light exercise— walking 10-15 minutes a day or as long as I can tolerate, maybe some body weight exercises. If I keep a “minimum” level of fitness routine going, it seems to help my symptoms a lot. I worked with a physical therapist to find light exercises to do that wouldn’t trigger my POTS or MCAS. But I do know & understand that exercise is not an option for everyone, so I agree that finding a Dr to talk to is key!

    • GuitarGal24

      704d

      Hi! I have both POTS and MCAS. I was kind of thrown a beta blocker early on by the same kind of dismissive provider. Eventually I found competent doctors (long wait list over a year and flying to another state) to officially get diagnosed. I would for now take the beta blocker, it helps tremendously with symptoms and get you on the path to a better quality of life. Typically the dosing directions will be on the prescription bottle once it’s filled. I take atenolol and it’s once a day but a lot of the other beta blockers are twice a day. It sounds like you need a better doctor to help evaluate you for POTS, a tilt table is usually the golden standard to see how your nervous system is behaving and a lot of regular cardiologists don’t have experience in diagnosing/ treating pots. If you have a Facebook account it can be helpful to joint Dysautonomia international support pages in your area and network among the members. I found mostly all my doctors this way! The truth is it’s not a one size fits all in terms of medication some people do well on beta blockers, some on a drug called corlanor, some also use fludrocortizone and clonidine to control adrenaline surges. But usually most everyone with POTS starts out with a beta blocker anyway, so even if your not thrilled with the care tour getting from your cardio at least starting to try meds is a good starting point. When and if you find a specialist who mostly only diagnoses and treats POTS patients you’ll have a list of what has worked and what hasn’t so far. Also if you also have MCAS and have hypermobile joints I would consider getting evaluated for ehlers danlos syndrome. A bunch of us have “the trifecta” which is these three conditions!

☝ 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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