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stardust_1999

Updated 1y ago

New PoTSie seeking advice

After years of not knowing what is wrong, I finally got a PoTS diagnosis today. any advice for a new potsie?

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curtain

2y

Hydrate! Carry some Liquid IV with you for bad episodes, and don't go anywhere without your water bottle. If you're heat sensitive, you can get fans to go up your shirt and around your neck, which will help keep cool.
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LeeannD

2y

I'm so glad you got an answer! I agree with hydrate. But also make sure you are keeping electrolytes as well as you can flush those out. Also journal. My doctor will ask my Bp or hr and I always draw a blank. It will help as you try new meds and different remedies. I also got a lot of relief from compression hose if your legs can stand it
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stardust_1999

2y

Thank you, guys!
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AllieMae

2y

-salt/electrolytes in your water! This helps with fatigue. I use nuun tablets. They have very little sugar, Liquid IV has 8 grams so I wouldn’t recommend. ReLyte is another good one. I usually even add some extra salt! All are tasty 😋 -epsom salt baths help with muscle pain and body fatigue. I literally do this almost every night, and also stretch really well and work on posture and correct breathing. It helps to relax me and not be so tight and in pain. My posture and breathing have gotten really had over the years to that is a step I can take towards correction and helping my body. I have a physical therapist too which I would 100/10 recommend Feel free to message me anytime! Glad you got a diagnosis that’s a great step in the right direction and can be so relieving I know 🫶🏼
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Foof

2y

Be kind to yourself, its easier said than done, but remember on hard days to take it minute by minute. Always have things like meds, food, water close by. I have a mini fridge by my bed on days its hard to get up, take it easy and slowly start the day. Find a hydration power you like, I love Magsoothe but I also struggle form chronic migraine so magnesium is my best friend!
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tallgirl22

2y

Mini pill boxes for your bag on the go, shower chair (if temperature/posture sensitive), high salt diet (I personally don’t tolerate electrolyte drinks so salt is important), vitassium, bp cuff, snacks & fluids always nearby, and compression if you have pooling (socks or abdominal)! Also there’s a book called The Dysautonomia Project if you or your support system want to learn more about it. Having people who know/understand your diagnosis can really make a difference for daily symptoms and advocacy.

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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