futurehope Posted January 27, 2012 Report Share Posted January 27, 2012 I first found out about Dr. Levine's POTS exercise program last year. I had contacted Tiffany last January. It took until recently for me to get a cardiologist, to get tested and to get checked out so that I could enroll.Finally.......but, they have just let my doctor (and me) know that I am too old to be enrolled. The cutoff is 59 yo. But maybe, they said, if my doctor approved, they would share the protocol with him. He would then share it with me and monitor me. They would have nothing to do with any follow up or any acquisition of data from my participation in the exercise protocol.I replied that I wish I had known this last January when I was 59 years old and eligible. I would have moved faster in getting doctors to check me out.What a bummer. Just thought I'd let you know.And, BTW, I told them I have been exercising most of my life, even with POTS, so this was a double bummer. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted January 27, 2012 Report Share Posted January 27, 2012 My doctor takes patients only up to 55. I made it just in the nick of time, (I'll be 55 in two weeks), but surely you should be able to find a cardiologist who would do the same tests. Tilt table test, stress test, and echocardiogram. You don't even need any blood work, if you've had some recently by a general internist. I bet if you went to a Medical Center, they would take you. I'll pray that you will find the right doctor. I found an ENT, Dr. Pappas who did a thesis on Autonomic Vertigo, who knew what was wrong with me immediately, sent me to the Autonomic Disorders Center, and Mitral Valve Prolapse Center of Alabama in Birmingham; I found him on the internet!! I didn't even know about the thesis at the time, but God did!! Quote Link to comment Share on other sites More sharing options...
bellgirl Posted January 27, 2012 Report Share Posted January 27, 2012 Sorry, I misunderstood...thought you needed a doctor for diagnosis, but you were wanting to participate in an exercise program...I see! Quote Link to comment Share on other sites More sharing options...
chipper Posted January 27, 2012 Report Share Posted January 27, 2012 Too old, that is sad. We have a lot to give to the world. Bless Dr. Pappas, he was the doctor that actually got the appointment for me with Dr. Coghlan so many years ago. I have never met him, but feel so grateful. How do you like the center in Birmingham? I miss going to UAB. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 28, 2012 Report Share Posted January 28, 2012 I dont really think the exercise program is that complicated. I presume it starts with medium intensity supine cardio and then builds up to orthostatic cardio. Different docs have different opinions on the heart rate ranges.Exercise has many benefits. It may increase blood flow problems, perhaps correct abnormal nitric oxide levels and increase autonomic balange.But there is no compelling evidence that exercise 'cures' POTS. Quote Link to comment Share on other sites More sharing options...
maggie Posted January 28, 2012 Report Share Posted January 28, 2012 futurehope,I made it into the program and received the program, it's a joke. Don't feel left out it would not have helped, in my opinion. If you look back into the blogs here, one of them discribe his protocol. I remember reading about it. We signed wavers stating we would not discuss the protocol with others, but someone opened up here on the blog who made it into the program. My neruo took a look at the program and stated no way was I too go to this extreme in so short of a time, he himself did not believe the program would work and his advise was to keep doing what I was doing instead. I did start the program and started to have problems, they tell you just call and they'll work it out. Well when I called their answer to me was go to your doctor, that really frustrated my neuro, who didn't like the program in the first place, it was then that I dropped it.Maggie Quote Link to comment Share on other sites More sharing options...
futurehope Posted January 28, 2012 Author Report Share Posted January 28, 2012 Well, being as I trust in the "Lord with all my heart and lean not on my own understanding", I'm assuming the Lord made sure I wasn't enrolled in this protocol, possibly because it would not have been beneficial and potentially could have hurt me.Life goes on. The original premise of being out of shape was wrong in my case anyway. Thanks for making me feel better. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted January 28, 2012 Report Share Posted January 28, 2012 Too old, that is sad. We have a lot to give to the world. Bless Dr. Pappas, he was the doctor that actually got the appointment for me with Dr. Coghlan so many years ago. I have never met him, but feel so grateful. How do you like the center in Birmingham? I miss going to UAB.It was Dr. Pappas Jr., his son. He was wonderful...I love the doctor's in Birmingham. I heard so many good things about UAB Children's hospital, but Dr. Pappas is affiliated with St. Vincent's hospital, and Dr. Phillips, my dysautonomia doctor, is affilitated with Trinity. Dr. John Riser, my neurologist, who specializes in vertigo, is affilitated with Brookwood. My sleep disorders doctor, Dr. Adams is affiliated with UAB. Birmingham actually has 5 major hospitals! I've gotten the best of care there. I chose Birmingham because it is only an hour and a half away, and my son lived there at the time and was going to UAB's physical therapy school....Where do you go now? Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted January 28, 2012 Report Share Posted January 28, 2012 This is part of the problem with the studies that keep being published - they make sweping statements about the causes and cures for ALL POTS patients - but that includes people over 59!! Makes me so mad. Sorry you wasted your time, but hopefully it is a blessing in disguise! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 29, 2012 Report Share Posted January 29, 2012 Medical research has to make pretty impressive statements to appear relevant and to appeal for renewal of funding. And Im happy that at least there is some very impressive work going on in regards to POTS and that we may have some concrete answers sooner than you expect. Quote Link to comment Share on other sites More sharing options...
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