persephone Posted August 13, 2006 Report Share Posted August 13, 2006 This may be useful for all you UK POTS folks.I ended up in hospital in Dundee after a bad crash in St Andrews. The treatment I had was amazing. The EP there has worked with David Robertson and been to Vanderbilt! I had 2 consultants looking after me.We tried Midodrine again but that was no good. So they read up on things, and went to a haemtologist to ask about Erythropoietin. It is really helping me. I have to inject myself but it's ok!I am also on Ivabradine- an F channel blocker- essentially, a beta blocker that DOESN'T lower blood pressure.Aside from getting combination of drugs right, I also:Saw an occupational therapistSaw a neurologist about altered consciousness and sparkles in my visionSaw a psyciatrist about how to cope with the changes in my life as a result of POTSSaw a physiotherapistHad one to one pilates classesHad group cardiac rehab fitness classesHad a room to myself, ensuite with TV!Had my own personal chef who made food to orderAnd this was on the NHS!!!! They kept me for 7 weeks- it'ssupposed to cost the NHS ?500 a night to keep someone in hospital. My bed alone was ?24,000! They wee absolutely brilliant. My treatments are very expensive but they told me I was "precious".They were wonderful and I think that maybe, just mayb, they have given me a life back, instead of an existence.Anyone who wants to get decent treatment for POTS should try Dundee. It sounds unlikely, but it's the largest teaching and research hospital in Europe. The best hospital I've ever been to. Quote Link to comment Share on other sites More sharing options...
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