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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: Did you see the video "Is it POTS or Dysautonomia"? Curious about your thoughts.

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › Did you see the video "Is it POTS or Dysautonomia"? Curious about your thoughts. › Reply To: Did you see the video "Is it POTS or Dysautonomia"? Curious about your thoughts.

July 3, 2012 at 3:49 pm #2527
Dr. Diana
Keymaster

Thank you! I was asking about that because I believe the definition of dysautonomia suits me to a ‘T’ but am not 100% certain that I meet the specific criteria of POTS every time I stand or that I achieve the specific relief every time I sit back down. I don’t have a doctor helping me with this as of yet and am not comfortable using my heart rate watch to figure out, myself, whether or not I am a perfect fit for POTS. As for dysautonomia, my heart is randomly all over the place without explanation, my body is seriously unable to regulate temperature, it also seems to randomly ‘shut down’ on me in various ways. All sorts of out of sync things have been occurring to me with regards to the basic functions of my body (basic functions that just about everyone takes for granted) for quite awhile now. Is the standard definition of POTS a guarantee with dysautonomia? Can you have one without the other?

My friend, I can relate personally to EVERYTHING you say. EVERYTHING. Everything is just plain out of wack, right? I could pass a “poor man’s tilt table test”, but I flunked the regular one big time. Looking at all of your co-morbid conditions, they align with my research, too. I believe that if you have dysautonomia (trust me, you do), you will likely have POTS, but your symptoms will vary all over the map. There are a multitude of reasons for this. Because POTS is something doctors can MEASURE, I think focus has gone that direction. I don’t think that helps us, as our heart rate and BP changes are only a small part of what our bodies are going through. Hence the focus on “dysautonomia”. I wouldn’t get too hung up on the technicalities of “POTS”, frankly. As a researcher, I strongly believe that “dysautonomia” is a better description of this syndrome and opens up the discussion for the TRUE, UNDERLYING CAUSE of our presentation. And as you already know (I’m so sorry), without proper treatment, our condition doesn’t stop at dysautonomia! Yikes. I’m on it, my friends. Hang in. 😉 Diana

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