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JustRachelle

1y ago

Looking for POTS treatment advice

What’s everyone’s treatment plan for POTS? I’m on Zebata but clearly it isn’t working. So is there anything I should bring up to my doctor regarding treatment. I’m still tachycardia when I’m up. Plus other symptoms 🤦🏽‍♀️

Your answer

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rosemxry

1y ago

They just put me on Midodrine(?) and I've gotten orders to get some compression socks and do leg pumps before standing. The meds are definitely seeming to help my fatigue and lightheadedness when standing
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Crow123

1y ago

None. My cardiologist said it wasn't that bad so no need to do anything, maybe try exercise. I really don't feel like that's all that true being that I can not walk due to POTS multiple days a week, but whatever.
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55isMe

1y ago

I am far from sure, but i think i am nearing the END of my POTS. Dizziness seems the newest challenge, but nice to have more regulated heart rate & shortness of breath. Anyway, thanks to many sites like this, i have used a lot of ideas. My condition is odd in that the virus that has caused dysautonomia also caused breast cancer. This has happened TWICE. Even with it so different, my husband and i BOTH knew from the repeat ER visits at the start of this, that there was cancer somewhere. My body just shoots to kill EVERYTHING. We had hoped it would go away with the cancer removal, but it didnt. Last time, i had chemo and that probably is the real reason those symptoms ended. Anyway, i believe these following things were pivotable in reducing my POTS symptoms this time: -- metoprolol 150mg and spironolactone 25mg daily. 2019 from the 3rd ER visit in 2 months. No ER visits after that. (Many others reported improvement with beta blockers) -- high salt and fluid intake, especially in the morning (due to other conditions, im not allowed salt pills, but i do have low serum salt levels, so whatrver i can eat, my doc says ok) --exercise. Reclining mini under-desk exercise pedaler with resistance levels. I used on my couch. --standing or sitting up as much as reasonanle when you feel best. Me, between 2 and 4 pm. -- stretching as much as possible to get body, especially vertically. Make the body start to adaot again to gravity --
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CoffeeBeanC

1y ago

Propranolol brought my heart rate down amazingly. I used to rest at 80 and jump to 150, but now I rest at 65 and usually don't jump, but it sometimes goes up by about 10bpm. I'm also on fludrocortisone for sodium retention, and take salt pills occasionally
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LuceH

1y ago

I'm also on Ivabradine, I also take Midodrine and when I have an 'episode' I take hyoscine hydrobromide (I find it helps cut down the time it takes for my body to stabilise by almost half if I take it as soon as the episode hits) - I will also just disclose by POTS diagnosis has been questioned a lot and no one can seem to agree on an answer or give a suitable alternative to what it could be haha
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Connie_Rose

1y ago

I've just been put on Ivabradine and its been helping me tones so far! My cardiologist also recommended I drink electrolytes (i've started having a science in sport tablet a day!) And he also recommended I try tilt training, he said although theres not much evidence towards it he thinks its still worth a try. Hope any of this is helpful:)
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Ghost1211

1y ago

Also cutting salts for me personally helped too
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Ghost1211

1y ago

cutting out majority of soda intake replacing with water daily exercise even if it's just pacing the house
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teiovex

1y ago

I take ivabradine (corlanor) and it works great, I had tried propranolol and metoprolol as well and neither worked as much but do for many others.
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Ghost1211

1y ago

I'm on propranolol and healthier lifestyle choices
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JustRachelle

1y ago

what are your healthy lifestyle changes if you don’t mind me asking.
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BlondeGirl1216

1y ago

Ivabradine and Propranolol for my tachycardia but they don't seem to be very effective. Ketotifen, Famotidine and Fexofenadine for the Mast cell Activation syndrome. They are antihistamines. Melatonin for my insominia. Salt supplements like Vitassium capsules to help with blood pressure. These are really useful in summer. Alongside that I take a fewsupplements/vitamins too.
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Zemi

1y ago

Zebeta worked in the beginning but it didn't last long. I was still tachycardic. The only medication that truly works for me is Corlanor (Ivabradine). It lowers heart rate without lowering blood pressure so it's good for people that already have lower blood pressure, like me. As long as I keep my fluid intake up, Corlanor made my quality of life better. I can shower, cook, and even walk the dog without any issues. Didn't experience any side effects and it's commonly used for POTS patients now.
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JustRachelle

1y ago

that’s sooo good! are you able to work now that you’re on this medication?
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tallgirl22

1y ago

When I was more tachycardic I took propranolol which had minimal side effects for me but I also have low blood pressure so being on it wasnt a good fix for me long term
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JustRachelle

1y ago

what do you do for it now?

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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