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lilbean34

339d

I was diagnosed with POTS this week, anyone have advice for me? Also how do I talk about it with my friends and family?

Top reply
    • Ash.G

      255d

      @Alfubet I am not diagnosed with pots but I find most of what you said relatable or helpful. I am curious about the liquid stuff you mentioned. I use a personal neck fan because I have heat intolerance.

    • 55isMe

      338d

      Someone on this platform explained POTS as "being allergic to gravity". I liked that verbiage. I've used it. It seems to work well. Everyone knows allergies fluctuate in intensity, symptoms, and everything is aggreviated by gravity

    • StressBear

      339d

      There are plenty of good resources. My favorite is dysautonomia international. They also have a podcast called POTScast. The general lifestyle items they tell you to try are hydrate(more than you think you need), increase salt intake(some resources say different amounts, I just eat more salt on bad symptoms days), also keeping yourself cool in the heat.

    • Alfubet

      339d

      Do your own research so you can effectively advocate for yourself. You are your best advocate. I got a smart watch to consistently monitor and log my heart rate (my doctor wanted me wearing a heart monitor all the time and this was the compromise). I will add a Liquid IV packet to my water bottle everyday, sometimes I’ll have two if I’m spending a lot of time in the sun or sweating. Your blood sugar levels will have the biggest effect on your symptoms, so make sure you are eating something with fiber or protein at least every three hours. Keep note of things (I.e. food, activities, temperatures) that make your symptoms better or worse. For example, I can’t sweep or mop the floor without passing out, hot showers or hot tubs make my vertigo immensely worse (especially the jets), and bending over makes my vision go dark. This one may seem unproductive, but daily cardio. My preferred is rowing, but I also take lots of walks and swim laps. It will help build up your tolerance and lessen symptoms., though it may feel very unproductive at first. Don’t be afraid to take it easy. You know your own limits better than anyone else.

      • Ash.G

        255d

        @Alfubet I am not diagnosed with pots but I find most of what you said relatable or helpful. I am curious about the liquid stuff you mentioned. I use a personal neck fan because I have heat intolerance.

      • 55isMe

        338d

        @Alfubet ditto

      • lilbean34

        339d

        @Alfubet thank you so much!

      • Alfubet

        339d

        @Alfubet And most importantly, remember you are not alone! Feel free to message me anytime!

    • Aiya_the_ill

      339d

      You don't have to tell anyone right away. My advice is to research as much as you can so you can advocate for your needs and tell your family how you want to be supported. It is totally scary to tell friends and family but it will help you form a powerful support system. Sending all the love ❤️

    • Mickey1210

      339d

      Find a good low sugar electrolyte drink

      • Aiya_the_ill

        339d

        @Mickey1210 I second that 😌

    • NewYork

      339d

      Are you currently doing anything to manage it right now? My doctor just gave me a paper at the beginning and walked out.

      • lilbean34

        339d

        @NewYork the doctor reccomended I majorly increase my salt intake and wear compression socks

        • NewYork

          338d

          @lilbean34 👍, also don’t stand up fast or for a long time, look up counter pressure maneuvers. Try do light exercise whenever you feel like it(or more intense exercise depending on how bad your symptoms are. Keeping some muscle in your legs can help with blood flow. Try to stay out of the heat. Stay hydrated!

☝ 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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Some advice for managing POTS includes staying hydrated, increasing sodium intake, wearing compression stockings, and finding a good drink with electrolytes. When talking to friends and family, be open about your diagnosis and explain how it affects you. Share your experiences and let them know what kind of support you need. Remember, many people with POTS are looking to support one another, so you're not alone in this journey.

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