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Magnate
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Join Date: Jul 2007
Location: Yorkshire, UK
Posts: 2,463
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Magnate
Join Date: Jul 2007
Location: Yorkshire, UK
Posts: 2,463
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Hi there Im 19 and everything you describe is the same with me - my heart rate runs high all the time and my BP yo-yos from danerously high to dangerously high in minutes. My cardiologist is at a loss as he can't prescribe something to bring down the highs because I have the lows too so it would cause problems
Even before he suggested it I looked for someone who could link together the Ehlers Danlos, Postural Tachycardia and autonomic problems - that lead me to Professor Mathias in NHNN in London who specialises in the diagnosis and management of dysautonomia
I am going for three days of extensive testing later this month - my cardiologists were sympathetic of the other problems but realised that it needed someone to look at the bigger picture too then look at an overall strategy to manage it
I would start by mentioning it to the Cardio but do some research on consultants locally and regionally who have a special interest in dysautonomia. I found the understanding and support i got from the initial consultation to be invaluable
Its really hard to cope with everything life throws at you illness wise and try balancing it with living life as a normal teenager but Im hoping once I know what is affected and what I can do to manage things better I can manage and limit the bad days
Good Luck and don't ever be scared to mention something at your appointments however trivial you think it may sound
Alison xx
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