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Ironrain

695d

So I'm very confused about my diagnosis and I'm not sure if I'm overthinking it or what but back in 2021 I went to the doctor thinking I has an iron deficiency and they ran tests for everything from levels of everything in my blood to thyroid to iron to leukemia etc and ran over 36 tests. All my tests came back normal they told me it was POTS syndrome and to look into getting a service dog. I didn't think anything of it until recently I noticed that my heartrate has been getting lower than it was before. now it's happened since I was a child but I never thought anything of it until I noticed that my cat has woken me up a few times for my low heartrate and my skin was sorta translucent? and had a blueish tint to it and my knuckles were a redish purple. I can't go to the doctor at the moment and can't find anything about it online does anyone else know what I should look into getting diagnosed for when I can go to the doctor?

Top reply
    • KitKat1450

      695d

      POTS is linked to EDS (ehlers-danlos syndrome) which a sign is translucent skin and possible heart issues. There are many different types. I would recommend looking into EDS and see if that seems to fit and for a diagnosis you have to get genetic testing to confirm. I know a few people with both and it was really hard for them to get diagnosed with either and both but since they have they’ve been better able to manage now that they know what they’re dealing with.

    • KitKat1450

      695d

      POTS is linked to EDS (ehlers-danlos syndrome) which a sign is translucent skin and possible heart issues. There are many different types. I would recommend looking into EDS and see if that seems to fit and for a diagnosis you have to get genetic testing to confirm. I know a few people with both and it was really hard for them to get diagnosed with either and both but since they have they’ve been better able to manage now that they know what they’re dealing with.

    • laceyandme

      695d

      Whats POTS

    • Kami5

      695d

      You have a similar condition to me, I have vasovagal syncope, Google the symptoms of it. Best way to handle it is to find out what triggers that response in you. I've fainted over seven times in my life.

    • BJSTREEHOUSE

      695d

      POTS is a form of dysautonomia. You need to stimulate your vagus nerve. Sing! Deep breathing from your belly lifting and lowering that diaphragm. Massage your neck. Gargle often. Even cold showers. I know about this because I have my own issues with dysautonomia. Another sight that will give you lots of information is Mind Body & the Vagus Nerve Connection Summit.

    • A_Delicate_Flower

      695d

      And then when you sit up, do you get dizzy? Blood pools when you have pots so I think your symptoms still fit. Not sure about the extra low blood pressure. There's another thing that's similar to pots that's cause by a drop in blood pressure instead of increase. I can't remember what it's called. I don't have a diagnosis yet but my PT suspects I have one of these. What I've been doing to help manage symptoms (and it's really helped a lot even though it sounds so weird) is I've been putting a pinch of pink salt in my water every time I drink. Or use a low/no sugar sports drink. Apparently people with these issues have a hard time hydrating and so we need more electrolytes and sodium than most people. It seems to be helping me. I hope you find some relief soon!

☝ 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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