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About seaboardbc

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    Advanced Member
  • Birthday 05/12/1961

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    Minnesota & Arizona
  • Interests
    Cooking, the arts, math and science, travel, love the outdoors

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  1. Welcome. This is a great forum. I've been. member for several years. The other members have been very helpful. Post your questions or concerns and I am sure someone will have some feedback for you.
  2. t was diagnosed with POTS 15 yrs ago. I noticed joint pain within a couple of years of my diagnosis. My rheumatologist told me that joint pain was common with POTS and other autoimmune conditions. I was taking so much Advil that he wrote a prescription for a narcotic pain mad. I didn't want to take it so I continued to search for a solution. Another doctor suggested IgG food testing. The results showed I have a delayed hypersensitivity to asparagus and shrimp, 2 foods I ate all the time. Within 2 weeks of cutting them out of my diet I noticed considerable improvement and within a month I was
  3. I'm 53 and it hasn't gotten any better but on the bright side it hasn't gotten any worse
  4. I had many awful experiences at Mayo. I don't know where you live, but I would recommend seeing Dr. Grubb in Toledo, Ohio. He has written several papers from his research on POTS. He is absolutely amazing! It may be quicker to get an appointment with his assistant Beverly Karabin, RN, PhD, CNP Nurse Practitioner. She is wonderful too! If you see Bev and she thinks that you need to see Dr. Grubb also, she will get you in sooner than just trying to get in with him yourself. Here is the link to their department http://utmc.utoledo.edu/clinics/hvc/Syncope_Center.html Dr. Grubb diagnosed me
  5. I just stumbled upon this post and I watched the video. I have to say that I am completely disgusted. I am curious as to what Dr. Grubb thinks of this program. I think it is a medical setback for all of us who have POTS. I feel like they are telling these kids to just "deal with it" which I think in turn sends a message to the general public that POTS is all "in our head". I am an adult with POTS. I was diagnosed 10 years ago at the age of 41. I will be the first one to say that more times then not, mind, not medicine has gotten me through my day. However, I was an adult when I was diag
  6. I am so happy I started this topic. It helps so much talking to someone who understands. I had to laugh when I read what you wrote about the current generation sharing so much more than we ever did. I know exactly what you mean. We haven't seen Dr. Randy before. I live in Minneapolis so I see Dr. Grubb in Ohio. My daughter moved down to Alabama about a month after her diagnosis ( she was diagnosed in Minneapolis). Although her doctor in Minneapolis was able to make the diagnosis (i think because he was aware of my diagnosis and he knew about the tilt table test) he really didn't know how to
  7. McBlonde Thanks for your feedback. It is good to hear from someone else in my shoes. I have insisted that she talk to a counselor and I have also shared with her that physically it is too much when she dumps on me. Her reasons for refusing to go include: she doesn't feel well enough to go, it's bad enough having POTS that she doesn't need to spend time talking about it (but she is talking about it to me), it won't do any good because she is sick and she isn't going to get better. When I distance myself from her ( because I just don't feel well enough to deal with it) she becomes more depres
  8. Hi I was diagnosed with pots about 10 years ago at the age of 40. I am (if there is one) a typical POTS patient. My symptoms include tachycardia, angina, fatgue, Raynaud's, dizziness, fainting, heat intolerance, joint pain, GI stuff, brain fog, visual disturbances and probably some things that i have forgotten to mention. I have good days and bad days, but I never have the kind of good days I had pre-POTS. I look very healthy, which on days when I am feeling particularily awful, I find to be a disadvantage. When I asked Dr. Grubb if I would ever have a normal life again, he said yes but I wou
  9. I exported a photo from iPhoto and to my desktop as a jpg file. When I exported it I chose "low" quality and "small" size. If you have a PC I am not sure how to do it.
  10. It was very validating to hear others talk about their experience with POTS. It really hit home when Dr. Thompson talked about his showering experiences. I look very healthy, but sometimes I find looking healthy to be a disadvantage. For example, people often make ignorant remarks or give me dirty looks when I park in a handicapped parking space (one women, after calling me every name in the book, told me that she was going to call the police on me for using a (my) handicap permit). The ironic thing is I only use handicap spaces on days that I feel "really bad" (I have to laugh, "really ba
  11. Thank you so much, McBlonde! Dr. Thompson is a little over an hour away from her. We will call him tomorrow. ChristyD, thanks for the tip about Dr. Lee. It is good to know that there is someone in Gulf Shores who knows about POTS. Thanks again!!!!
  12. My 24 year old daughter was recently diagnosed with POTS. Unfortunately, because her condition was only recently diagnosed, her doctors are still trying to find which combination of medicines work best for her. She is spending the summer in Gulf Shores, Alabama. She really isn't feeling well and would like to see someone close to where she is living now. I am hoping that someone out there might be able to suggest a few names of doctors in her area. Thanks!
  13. I was diagnosed with POTS 8 years ago. I don't faint often but the past year and a half I have the frequency of my fainting episodes has increased. Usually when I faint, I feel some kind of "warning" such as chest pains or feeling lightheaded. I fainted the other day without any warning and afterward I had no memory of what happened to me. Here's what happened. It was about 5 am. I remember laying in bed contemplating whether or not to get up for the day. That is the last memory I have before fainting. Apparently I got out of bed and then I fainted. When I fainted, I hit the back of
  14. Happens to me too (like dizzy blonde). Sometimes it's worse than others. It really freaks me out. I am careful about what I eat and I make sure I chew well and drink something when I swallow, but even that doesn't always help. I can handle it the way it is now, but my (secret) fear is that it could get worse.
  15. Hi I am wondering if anyone here has been diagnosed with Bartter's or Gitelman's Syndrome in addition to POTS. I was diagnosed with POTS about 9 years ago. My 23 year old daughter has many "POTS-like" symptoms. She was recently diagnosed with Bartter's Syndrome. I realize it is a difficult condition to treat, but she is not doing well at all and I'm wondering if she could also have POTS. Thanks Bren
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