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Pat

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About Pat

  • Rank
    Member
  • Birthday 09/28/1966

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  • Gender
    Female
  • Interests
    Love to read, also do knitting, stain glass, crafts and rocking on the front porch.

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1,065 profile views
  1. I wonder if what I have is Coat hanger pain, mine doesnt go up into my neck it goes around my chest like where your bra would go. It comes and goes I cannot find any triggers, but when it is hurting it almost brings me to tears. Do you experience anything like this? Pat
  2. Thanks, Julie for your input I had my gall bladder removed in 92 so I know it is not that. You know it would be great if there was a POTS handbook with all the symptoms in it that you could look up and get answers out of, but unfortunately this crazy disease/disorder is different for each person. You all have given me good new information that I can research on. At least I have a starting place. Thanks so much.
  3. I am going to research into this "coat hanger" pain, I have never heard of it before thanks!
  4. Hi, I have progressive lenses and they don't bother me, but I had them before I was diagnosed with POTS. Maybe you just need to get use to them sorry, I wasn't much help. Good luck
  5. I have POTS and I get this pain that is upper back/chest basically where your bra would go. Does any one else get this? It doesn't hurt all the time but I do get it several times a day and it is a severe pain. Heat seems to soothe it some. I appreciate any and all comments. Thanks
  6. Does anyone else get pain? I mean I have had a deep pain located kind of like where your bra would go. It isn't constant but when it hurts it is severe and hurts to lay or lean back to sit. I would appreciate any comments. Thanks Pat
  7. I went to Mayo myself this past November the week before Thanksgiving, Mayo is a well oiled machine. They know there stuff. I was diagnosed with POTS and I went there for a confirmation of my diagnosis. I will be honest it will not be a fun time, make sure someone goes with you. You will need an extra pair of eyes and ears, plus to help you. Some of the tests really take it out of you. But believe me it is worth it, they will put you through your paces but you will know by the time you leave what is wrong with you. And believe me it is easier to live with feeling crappy when you know what is wrong. I hope this helps you, but I definitely encourage you to go. God Bless you, Pat
  8. I hated the TTT, it is a weird feeling being immobilized. I didn't make it to 15 minutes before I passed out and the next thing I know I am laying flat and they had cool wet cloths on my face trying to get me to wake up. You are being closely observed and monitored, don't be afraid they will not let anything happen to you.
  9. Hello everyone, I am glad to have a place to talk to and read with people who understand what I am talking about. I have been recently diagnosed with POTS and Vasavagal neurocardiogenic Syncope and I know people mean well, but no one gets it! They really just don't understand what you are going through. And if you aren't passing out or weaving around... they tell you "but you look okay" I have got to the point now when people ask me how I feel, I tell them crappy and how about you. My husband and boys mean well, but they have turned into Gatorade Nazi's. Mom are you drinking, mom why are you not drinking, mom let me get you a drink. Honey are you okay? How are you feeling? Do you need to sit down, lay down... sometimes I feel like running off and screaming. But I would not get very far and I would ruin my exit by passing out.
  10. This is a great idea! I will bring an air conditoner and a heater, it is a very fine line for comfort. My boys will bring the humor, they think it is really funny to tell people their mom has went to POT!
  11. It is hard when you have a condition that doesn't really show. People always think I am better because I look ok that day. Just remember they ususally mean well.
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