Mark

Introduction Hi I'm Mark, and I am a long time lurker on this forum, I had severe POTS for about 8 years during which I was bedridden 90% of the time. I had very bad angina even when being in bed, confusion and all the symptoms that you know all too well. I was diagnosed with ME/CFS at Stanford. I would read, from time to time, a story about people with POTS getting better with exercise but I always thought that wouldn't be the case for me. The experts said that exercise wasn't right for ME/CFS, that it would be damaging in the long term. And they were actually right because someone in my condition would have been severely damaged by exercise(but more on that later). The POTS Diagnosis It is bizarre to think of it, but I had my POTS diagnosis after about 7 years of being bedridden. Or to be more clear, I had my first real treatment for POTS after being diagnosed with Lyme disease. It turns out that the Stanford experts were aware of the POTS but wouldn't treat it, no midodrine nor beta-blockers. They never even mentioned that there were treatments for POTS, they would, however, treat me with very experimental protocols for viral infections. First Steps in the right direction When I had my diagnosis of Lyme disease, I went to an LLMD, a Lyme literate doctor. He mentioned for the first time that many of his patients had POTS and that there were treatments for it. I began to take midodrine, this was a real turning point for me. I started at 2.5 mg which was barely having any effect on me. But at 10 mg x 3/day, I could really feel an enormous difference. It was the first time that any treatment had any positive effect on me. I also began to take metoprolol which also helped a lot my tachycardia. However I was still very limited, my stamina was still very low. The video that changed it all Before being bedridden, in my teen years, I was an agonist cyclist. I did win a 2nd and a 3rd place in the nationals. So I was very keen to try an exercise program, I knew that I could withstand the pain. When I was bedridden, I tried multiple times to begin a very gentle exercise program. Every time I tried, I would be sick for days. Sometimes I would be sick for 6-7 months because of a single day trying to start exercise. I would have bad angina and would feel awful even in my bed (my cardiologist said my heart was perfect though). But the midodrine and metoprolol changed this, it was a little step, but it gave me the confidence to try again. At the time I found this video: https://www.youtube.com/watch?v=Heel8SBZSuc I begin to try, and it was hard. Very hard. It would take an hour and a half to do half of the exercises. I would wait from 10 to 15 minutes between every exercise to recover. I would only do the easiest exercises and without weights. The first month was painful, but I could see I was getting a little better. The second month was better, but it still did take a lot of time to complete. Instead of feeling worse after the exercise, after about a half an hour of recovery I would feel strangely better. It was like oxygen was finally reaching the body and the heart, sometime I would begin feeling the angina and finishing with the angina gone. I've always asked myself why I had the angina and it seemed that the ischemia hypothesis was the right one. Finally, I knew why my heart was in pain! It was a great day when I realized it. The exercise protocol After 6 months of doing the video exercise protocol, I was better, but I had still a long way to go. That's when I thought that I was ready for doing THE exercise protocol, https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=2ahUKEwiF7dfLm8ndAhXLzoUKHYFFDNYQFjAAegQIBxAC&url=https%3A%2F%2Fwww.dysautonomiainternational.org%2Fpdf%2FCHOP_Modified_Dallas_POTS_Exercise_Program.pdf&usg=AOvVaw2nB1DmdtlYVgZXY_-iFu0p I read this protocol when I was bedridden, and I always thought that it wasn't possible for me, that only people who hadn't severe POTS could do it, that only people who hadn't ME/CFS could do it. But I was wrong. And the Stanford experts were wrong. I religiously followed the Dallas protocol, and it has helped immensely. I have a lot more stamina, I am back at work. Am I healthy and symptom-free? Nope. But I am not living in an eternal h*** anymore, and I am back riding my bike. I hope that my story will give you hope and the courage to try that unreachable exercise protocol again. (But first, get the right treatment). I am not sure I will have time to hang out here on the forum, but if you want to contact me you can reach me at my email: ethicalagency@pm.me