In 2005 I was diagnosed with Pure Autonomic Failure. In Holland there are, as far as I know only about 5 patients with PAF. And it looks like I am the only one who has more problems during stress periods. The doctor can not tell me where this PAF is coming from, while I have the feeling that it comes after a long period with trauma and to much stress. What I would like to know is, do you know more patients with PAF, what their treatment is (now I take Fludrocort as well as Gutron, but it still hard to get/feel stable) - can it be healed, is there a forum with people with PAF and how do I get the latest news on PAF (about research, medicin, treatment, etc.)?
PAF, also known as Bradbury-Eggleston Syndrome or idiopathic orthostatic hypotension is not well understood. In this condition there is a loss of catecholamine uptake in nerve cells in the sympathetic postganglionic neurons. It is usually treated with vasopressor drugs, and patients feel better if they do various exercises that compress the legs and lower body by squatting or the use of compression stockings. They need to keep well hydrated to maintain their blood pressure. I am not conducting research in this area, so I am not much help in finding you resources that can assist you. You need to start performing some internet searches to find groups of patients with similar problems and clinics that specialize in this disorder. ProfGN
There is a patient forum here on MedHelp for patients with dysautonomia, which includes PAF. Although PAF is one of the rarer forms of dysautonomia, I believe our forum has one other patient with PAF currently, and many other patients will be able to at least relate to some of your symptoms and are on similar treatment programs in terms of medications and lifestyle recommendations. We would love to have you join us! You can find us here:
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