lbb
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Shelby_725, I'm so sorry that I'm only now replying to your post - I just read it a moment ago. Thanks so much for sharing your experience with me. My son, who just recently turned 18, was diagnosed with POTS at Mayo in Florida this past November. He has been sick for 5 years and had to withdraw from school at that time to be homeschooled. Since March 2014, he's been much worse, having daily symptoms. He's basically homebound and has lost contact with all friends,etc. He's taken it in stride for the most part but is starting to feel as though he has no future.
It sounds like you've been through years of suffering - I'm happy that you are feeling so much better! Your story gives me hope for David's future. I'm on the fence about the clinic. I called Dr. K and spoke to her at length,but I still have a couple of questions if you don't mind. How much of the program was spent in "therapy" and how much was spent on relaxation/meditation exercises? Did she prescribe you lots of supplements and vitamins - if so, do you think they were very expensive? Was nutrition a part of the program (my son is about 50 lbs underweight)? In your opinion, do you think biofeedback can be learned at home, provided you have the equipment? I've read that you can buy the Heartmath equipment on Amazon that they send you home with.
I realize this is a lot to ask and can't thank you enough for your insight!
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Thanks a bunch Katy!
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Has anyone been to the POTS center in Dallas recently? If so do you think it has been helpful? Thanks
Recommendation On A Florida Doctor
in Dysautonomia Discussion
Posted
Hi Angel,
My son was diagnosed in November. Although it was such a relief to finally get a diagnosis, there was no attempt to determine the cause. He simply said not to look up POTS on the internet. In fact, I emailed the neurologist about a side-effect of the meds they prescribed, and he suggested we follow-up with our family doctor. I suspect my son has EDS, and his internist told me yesterday to see a rheumatologist, but to go through our family doctor for a referral. We like the neurologist; however, we feel left out in the cold. I hope this helps somewhat.