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Does anyone else have POTS syndrome(postural Orthostatic tachycardia syndrome)?

gomindy21gomindy21
in Health & Beauty

Hello everyone. I have recently just been diagnosed with POTS syndrome. I was wondering if anyone else out there has this and what you are doing to cope with or treat this disorder. I have not found many alternative treatments online and am desparate for any information right now.

Comments

  • marthad2umarthad2u

    For resourses on POTS, check these websites

    http://dinet.org/ (they have an upcoming documentary

    http://www.12morepages.com

    http://www.potsinfo.com

    Go to YouTube and Search for postural Orthostatic tachycardia syndrome. There are lots of others putting their stories online and you can connect with them.

  • gomindy21gomindy21

    Thank you!

  • mamameganmamamegan

    Wow- How weird to have seen this syndrome on here. Although I have not been officially diagnosed I have EDS (Ehlers Danlos Syndrome) which is commonly linked with POTS and I have ALL the symptoms, with tachycardia that they tested by me laying down, sitting up, and standing up but not on a tilt table. I still don't know what to do about it though. I have a 1 year old daughter that doesn't really allow me to take the lay down and rest it out approach. What do you do?

  • gomindy21gomindy21

    I actually don't have a doctor appointment until later this month. So all that I've learned has been from the internet. www.dinet.org is a great resource. I joined the forum. I have not done anything for treatment until I find out if there is anything else wrong with me, or anything else causing the disorder. I wish I could help you more, but will keep you posted with what comes out of my doctor appointments.

  • marissadmarissad

    I was diagnosed with pots when I was 18..I am now 22 and have picked up some tips..lol..my most important is wearing support stockings..a pain in the ass I know!! I get the medical grade ones from a medical supply store..these help dramatically..I also perform leg maneuvers when I have to be standing for longer than five minutes..try flexing your calf muscles and bending your leg at the knee..alternate these movements..drink tons of water..I was on the florinef tablet which helped me to feel better when standing but I had swollen legs like a pregnant woman..so I stopped taking it! I hope this helps and good luck!

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