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I was diagnosed with pots last year. I was having severe anxiety and put in the hospital when my blood pressure was very erratic and i had the orthostatic hypotension, and they discovered pots. I was put on florinef, propanolol, and citalopram which is an antidepressabt and I was almost back at 100%. Well less than a year later the pots has come back worse than ever! I’ve currently had to stop working and can’t drive much because I’ll panic thinking something terrible will happen and the erratic blood pressure. I was put back on citalopram but this time it didn’t work and my blood pressure and heart rate went really high and I was in the ER with a hypertensive crisis. Now my brain and body are totally out of sync! I am looking for any hints to get them back In sync. I am back on florinef and I take propanolol but it does nothing to slow my heart rate down anymore. The main times my heart speeds up is of course excercise, after eating, and when im anxious (which is a lot lately and is not helping my body get back in sync). I take klonopin sometimes which is anti anxuety medicine but I’ve read it can make pots worse so I have no clue what to do. Thankfully I have an appt with my cardiologist monday! I am so open to any suggestions or comments anyone may Have when it comes to getting the body & brain together!! Is rest the answer or is it better to stay active? I need to be working and living life as im only 32. Thank you!!
Leah
Hi Leah, You likely know that I had the hyperadrenergic form of POTS, so I can certainly relate! My resting heart rate on a tilt table was 164 when I was last tested! Mercy… It took peeling back the layers to get my resting heart rate back to normal (under 70), but it DID happen. One way to tell what is going on is with a close examination of your other symptoms and your triggers (what caused POTS to begin with). For me, I had symptoms of high intracranial pressure and Diamox was a huge help, as was an abdominal binder. When POTS was at its worst, Xanax was a huge help, as was Zyrtec. Do you respond to antihistamines? My kids did not have the adrenergic form of POTS, but their heart rates have returned to normal and they no longer have POTS, thank Heavens. I think it is critical to look at all possibilities before thinking about an ablation. In most cases (but not all), an ablation is contraindicated. A cardiologist can advise you about exercise. I exercised hard (but it had no effect on my POTS). I felt better when I was strong, but some of us have such incredibly high heart rates, I do wonder about the safety of exercise if heart rates spike. Yikes… Hang in, Leah! 😉
Thani you for your response Dr Diana! What exactly does the abdominal binder do? Did you ever feel sick after eating meals and did it help with that? I’m just searching for clues on feeling better and trying to hang in there!
Leah, I think the book will answer many of your questions (I hope!). I think of the abdominal binder as helping to push oxygenated blood into the brain — immediately helpful. I believe that is why beta-blockers made me feel worse — they slow the heart rate with no consideration for oxygen perfusion of the brain. Most doctors are used to heart problems being the cause of tachycardia, and beta-blockers slow the heart rate (great). If we have tachycardia as the body’s attempt to improve blood circulation, slowing the heart rate artificially is bad. That is why I say that beta-blockers make the doctors feel better, but can make us feel worse. 🙂 Yes, when I had POTS, eating a large meal made me feel worse, and increased tachycardia. Ugh…
Dr Diana,
Which type of abdominal binder helped you? Because I know the doctor instructed me to get compression stockings that had a compression of 20-30. So my question is, are all abdominal binders made similarly or should I look for a anything specific?
Thank you!!!Leah, I think the book will answer many of your questions (I hope!). I think of the abdominal binder as helping to push oxygenated blood into the brain — immediately helpful. I believe that is why beta-blockers made me feel worse — they slow the heart rate with no consideration for oxygen perfusion of the brain. Most doctors are used to heart problems being the cause of tachycardia, and beta-blockers slow the heart rate (great). If we have tachycardia as the body’s attempt to improve blood circulation, slowing the heart rate artificially is bad. That is why I say that beta-blockers make the doctors feel better, but can make us feel worse. 🙂 Yes, when I had POTS, eating a large meal made me feel worse, and increased tachycardia. Ugh…
Hi Leah,
Beta blockers didn’t help me at all, made my arms hurt worse. I didn’t find the abdominal binder helpful either, it worsened slow gut motility but some people find them helpful. Here in the uk, we can get them on the NHS.
Regards
Barbara
(UK)
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