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I've probably said this before, but when you get the referral to a cardiologist make sure 100% they specialise in this condition. You need to see someone who is aware of all the treament options for the condition and can read the TT properly - it really isn't worth it otherwise.
Are you in the UK or US? You might want to try registering and posting on ndrf.org and asking for dr who specialise near where you are, as far as I can tell most users are US based but there are some from UK. If you are in the UK try contacting stars (www.stars.org.uk) who have a lsit available of specialists who recognise and treat the condition with a degree of success.