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MoonFairy

774d

How do you manage POTS with co-occurring illnesses? My POTS makes it so difficult for me to manage other illnesses bc I’m too tired. POTS also makes school work difficult and working at my job difficult bc my managers don’t understand my disabilities. Also, even when I go through a period where my Basic POTS symptoms are looking better, the fatigue stays, is that normal? I’m also constantly getting sick which makes my POTS much worse again. I’ve seen very little improvement over the several years I’ve had it.

Top reply
    • SJP

      766d

      @hazyeclipse I can't (I suck at even drinking water). I'd advise adding salt to drinks (Gatorade and water are the best so far), eating something you can oversalt (ex: low oil fries with salt), etc. There are salt tablets, but I don't like them or have the money for that.

    • WhiteRaven

      772d

      And do not add extra salt with Hyperpots unless blood pressure is low at that moment.

      • MoonFairy

        772d

        @WhiteRaven what is considered hyper pots? My blood pressure is normal like 85% of the time. But my heart rate goes up a lot and I still have other symptoms bad. And I get really dizzy still. But I’ve never taken salt tabs, but drink lots of gaderade and eat lots of Ramon and soup

        • MoonFairy

          772d

          @MoonFairy But two years ago I was in a wheel chair for a bit (only as needed or whenever I’d be in heat) but it was only after a concussion really really aggravated my symptoms

    • hazyeclipse

      772d

      I wish I knew. I'm worried I'll never find effective treatment. The whole water-salt-compression thing has absolutely no effect on me. Beta blockers take down my heart rate a little but don't help symptoms. Midodrine stops working when I take it long term. I'm dealing with symptoms in my entire body because of this damn illness and I can't work anymore and couldn't go back to school, and I also have to deal with endometriosis. I guess I don't have any advice, but you're not alone.

    • Jubilee87

      772d

      POTS and Sinus Tachycardia took over my life. I'm doing much better now that my doctor put me on Nitroglycerin capsules daily. It's not gone, but it's better. I Also try to stay on a low inflammation diet plan.

    • SJP

      773d

      I found a way for me to "work", but it's limiting. This sounds really bad, but POTS is one of my least restrictive illnesses, despite having moderate to severe symptoms from POTS. I have over 20 diagnoses, so I stopped keeping track of things the normal way. Instead, I look at things as cause and effect chains. So, if I eat something against my NCGS, then my neuropathy will flare, my inflammation will increase, and my POTS will be all wack because of the inflammation and blood flow. Whereas, if I walk too much, my joints will sublux more, my legs will give out, I'll cramp, my osteoporosis will cause bone pain, and my POTS will be extra sensitive to heat and movement. I have to lay down at that point, usually with a cool wash cloth. My biggest success with POTS was finding research about treatments. Research says 2-2.5L of water/fluid a day MINIMUM and 3,000-10,000mg of salt (sodium) per day. (Ask your doctor first please). This has helped me tremendously.

      • hazyeclipse

        772d

        @SJP how do you get that much salt in?

        • SJP

          766d

          @hazyeclipse I can't (I suck at even drinking water). I'd advise adding salt to drinks (Gatorade and water are the best so far), eating something you can oversalt (ex: low oil fries with salt), etc. There are salt tablets, but I don't like them or have the money for that.

        • Ursa

          766d

          @hazyeclipse I take salt pills! They are available at Walgreen's pharmacy as an OTC and Amazon. I take them with every meal and at bed. This intake of salt has affected me greatly and I would I highly recommend it!

      • SJP

        773d

        @SJP It's expensive, but I'd definitely recommend a standing rollator with a seat. It's a lifesaver! I also can do so so much more, and safely. Sometimes it's as "small" as safely walking to the kitchen myself, or as "big" as walking to the dumpster (0.25miles round trip, usually while taking out the trash). I can't usually do that with just my cane.

    • Nono5

      773d

      Il really sorry! I was doing better with my pots symptoms but getting sick really set me back.

    • WhiteRaven

      774d

      I don't know if some people can manage it. The Dr's consider it managed but mine is by far managed. Taking propranolol drinking liquid iv and 128 oz of water a day helps. Im on disability I worked in my own company for years but not anymore.

    • ChronicLV

      774d

      I don’t manage it. I currently don’t work but I’m a full time Masters student. I’ve been in bed mostly the past 8-9 days. I think I’m now reacting to a food that was one of 3 safe foods I had left. I hate it.

      • Jubilee87

        772d

        @ChronicLV 😥I'm so sorry. That started happening with me and foods to.

☝ 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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