tapktp

I spoke to a lady today (71) who has been diagnosed by a cardiologist as having "Dysautonomia". (Rather vague, but a decent start after her PCP dismissed her symptoms!) He's put her on Midodrine (good) and 20MG of Zoloft. (No Florinef; interesting!) Ive had PAF for 20 plus years and have never heard of treating OH with Zoloft. Anyone out there used it? If so, any success?

I have had PAF for over 20 years. While ortho BP drops by as much as 100 points (systolic), the last three years I've experienced supine hypertension - as high as 200/140. Tried Chlonodine at night. Made my blood pressure rise dramatically. I found an article indicating this could (rarely) occur if the patient has idiopathic orthostatic hypotension!

Obviously, few physicians practicing any discipline - even neurology and cardiology - know little to nothing about Pure Autonomic Failure. I've been lucky to find a PCP who will allow Dr. David Goldstein (Neurocardiologist and Chief Investigator NINDS/NIH Bethesda) to quarterback my care for almost 20 years. Finally found an Orthopedic surgeon who has agreed to perform full hip replacement (both, ultimately); but neither he, the hospital personnel nor the rehab center know anything about my disease. Several ortho surgeons refused to consider me due to my PAF and the expected complications. I've passed out 35 times now since May, 2016 when the pain started in both legs. (Adrenaline is released when one is in pain, and it further dialates the blood vessels - just what is not needed by someone who can drop over 100 points in less than 3 minutes when moving from supine to standing positions.) I'm a hip revision surgery (ies) waiting to happen, and I doubt I would survive such. Has anyone faced a similar dilemma and found a reasonable solution? I have a message into Cleveland Clinic. It would be ideal for a clinic like that to approach me on a team basis from surgery through rehab. I'm hoping for a positive response. Any suggestions will be appreciated.