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ADreamInside

Updated 1y ago

Newly Diagnosed with POTS: What's Next?

I've been diagnosed with POTS for about 2 weeks. I have no idea what I'm doing. I know a lot about the condition from textbooks and I've had to do research for medical school, but I dont know where to begin for my own health. What should I consider as my first step after a diagnosis?

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UnluckyUnicorn

2y

Drink a lot of water. More than the average person. Drink electrolytes or hydration multipliers. Try compression socks. Hot showers/baths are not recommended but if you like them do them before bed or long rest period since they make symptoms worse. Increasing salt intake is recommended, or salt stick supplements. Exercises like a row machine, stationary bike, or just seated exercise can help. Pacing yourself, listen to your body. It’s honestly a bit of a mess trying to figure it out but I hope you are able to figure it out quickly ❤️
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ADreamInside

2y

thank you so much! ❤️❤️❤️
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Persephone9

2y

Agreed with unluckyunicorn! More fluids (I was told to get about 100 oz if you can), more salt in your diet and/or salt supplements, compression garments (I use socks), light exercise (walking, stretching), regular sleep routine, and avoiding big meals. Personally, I’m basically always tachycardic so my cardiologist put me on metoprolol to slow my heart down. Everyone is different and it takes time to find what regiment works for you. You can do this!
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sam_023

2y

Hi there! Knowledge is power! Liquid IV got me through nursing school- there's a dysautonomia code. Keep an eye on your BP. Take orthostatics occasionally if you can. I have hypotension so my NP prescribed midodrine 3-4 times daily. That also has helped me so much. A ton of salt- as much as you can tolerate. A rule that helps me is water follows salt- so eat as much salt as you can tolerate then you'll be thirty so water will follow. Eat balanced meals and snacks. And try to maintain the level of activity you can. Recumbent exercise is good. I can't recommend PT enough. So if that is a possibility I recommend that. It's messy at first because it is vastly different for everyone. But you can do this!
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sam_023

2y

Oh, also dysautonomia international is a good source.
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Chrys

2y

Take time and pay special attention to your body and how it operates and reacts to your environment. Take note of your difficulties and figure ways to adapt and make your living spaces more accommodating. Compression stockings, increased salt intake, and electrolyte water is a great way to start helping your body. If necessary look into mobility aids if walking around is taxing on your energy. Avoid heavy cardio and high temperatures if possible. Take lukewarm showers and start off with yoga if you like staying active. I highly recommend a shower stool and compression stockings for aids!
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wendyburd1

2y

My heart felt so fast I thought I was dying. The doctor on call that weekend was no help and it enslaved my anxiety. Eventually I was put on Metotoporol xl and I melt I could breathe again. The drinking already existed due to my Diabetes.
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captainfantastic

2y

propel has been an absolute lifesaver for me personally! when water isn't enough, electrolytes can really help. try to keep yourself from getting too hot too. even in the winter, i always have at least two fans on me at all times. i was surprised by how many pots episodes were made worse by me overheating. depending on how bad you are feeling on a day to day basis, saline iv's have REALLY helped me. i would go once a week for an hour and it made such a difference. also just being patient with yourself. it takes a little while and some hard work at times, but eventually you will get better. good luck!
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Photobeans

2y

Also getting a shower chair for In showers. Helps with risks of falling or fainting in the shower

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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