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About kayjay

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  1. You know you have pots when... Your children have ask you how to spell simple words but they can write "postural orthostatic tachycardia syndrome" without batting an eye lash.
  2. +1 It is unsettling because I certainly don't have the answers... Just lots of questions!
  3. When you go into the er, the staff asks "what kind of nurse are you?" Umm, I'm a teacher. The er physician "compliments" you by saying "you know more about your condition than most doctors."
  4. I have had low Bp after getting out of a pool. I feel really good in the water though. I haven't experienced what you are dealing with. Swimming has been good for me. I hope you are able to try again. I don't swim laps. I have taken swim exercise classes though. I have a few thoughts. Is is possible that the water is too warm? I swim in colder water. Even in the winter I swim in the "cold" indoor pool. What you described is similar to how I felt (before I was diagnosed) after getting into a hot tub. Cold water doesn't feel as comfortable but I know it's better for me. Also could you be over e
  5. Yup and yup! Lol. I will say that I went gluten free in 2009 and still have pots but my gi issues have resolved. If you have been diagnosed with "ibs" I would suggest looking into fructose, lactose, and gluten intolerance(s). In my opinion "ibs" is a "cr@p" diagnosis. My daughter was told she had ibs- a simple breath test for fructose uncovered her issue.
  6. Like Dani I have had this with high adrenalin. I am a very mild mannered person by nature but once kicked a trashcan in anger! Crazy! I had to hammer out the dent. Being on a beta blocker has helped with this. I know high blood pressure is considered "silent" but I personally can feel the swings. It was really helpful for me to know that this was a physical problem. Just wanted you to know that you are not alone. I knew that the anger I felt was disproportionate to the situation. It was helpful to explain to my children that I felt cranky, but it was the pots causing the feelings. PS
  7. When others ask you where you found that blue lipstick you are wearing. When you can see the stars every time you take a shower - anytime of day, inside. When you have all the "fun" of being drunk at every social event... even in Church. When you wear your Pjs so often your children think you should go on "What Not To Wear" When going to the market really does feel like climbing Mt. Everest. When you can get the "sea sick" experience from the comfort of your own bed.
  8. just want to tell you you are not alone... not much help. But I went to my son's conference and told my husband " she is going to thing I am a drunk". Hang in there! I have broken more than I want to think about.. but you adjust and even when it is your great gramas china ( yes happened) it is just stuff. ((hugs)). PS HILBILgrl... your chapstick is in my dryer haha. Don't forget that even "healthy people" do dumb stuff. Please give yourself a break! I fall a lot ( I passed out 2 times last month) and my knees are super ugly! POTS makes things worse I know. I could tell you some ugl
  9. I am another yes. I get it every year now. before I knew I had POTS when I got sick it would take me almost 2 months to recover. I am not big on vaccines but I now even make sure my children get it.
  10. Doc at mayo would not prescribe but I am hyper pots. he said these drugs raise blood pressure and might be hard on the liver... wish I could take it for my fatigue. Do any of you have high blood pressure from hyper POTS and take this?
  11. Kayjay, You are a 5 star supporter to everyone here. You have such a wonderful

    way with words. I feel so blessed to have you as a friend.


    love, BellaMia~*

  12. I was just told that I do by my doc on Monday- but I didn't have any tests done. I am always cold but only noticed the severe discoloration when i got into the bath. Could that still be what you are talking about?
  13. Summer- I'll have to look at my feet and legs next time it happens. I was so distracted by my hands... I got right out.. they were soo dark- and my skin is pretty pale. does it happen to you when you are cold and then you get in a hot tub? i got in trying to warm up.
  14. Hi. When I get into a hot bath my hands turn so purple they almost look black. My nails are blue and my fingers look like they are covered in ink. I was just wondering if this happened to anyone else and if you know why.
  15. Ram- I know I must have elevated NE levels. I was actually first misdiagnosed with pheochomocytoma 3 times based on 24 hr urine tests. I just get paraniod about the wine b/c I am on a beta blocker and Lexapro.
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