Hi, I have finally been diagnosed with sick sinus syndrome but only by my local dr and we live on a remote island off the coast of Arnhem Land in Australia. My heart rate drops to 38bpm and averages 60bpm during normal daily activity. I also have long series of trigeminy (periods of every 3rd beat being ectopic). I have a couple of episodes of severe trouble every month, usually associated with my period as I carry more fluid. These episodes occur if I use my arms above my head or carry something a bit too heavy. If I jog or ride a bike nothing happens, only if I use my arms. When I get an episode my heart feels like jelly and there is no discernable beat, more a faint flutter. I have to fight to stay conscious and cant move at all for about 20 minutes. I can't even speak as I get so breathless. It then takes another 8 hours to recover enough to return to normal life as I am so weakened. I live in a very remote place and medical help is a long way away so I am worried that my heart will give out one day. I had complete heart failure 2 years ago after an operation as the doctors didn't notice my heart rate at 20bpm until a patient pointed out I was turning blue. I have had terrible trouble with my heart since but because I am youngish (early 30's) and appear healthy enough the doctors disregard me, pat me on the head and tell me I must have dizzy spells because I have seen something that has given me a fright. (what a load of bull). My local dr here has ecg's of my heart behaving in an odd manor and he says he has never seen a case like mine. He wants me on medication but I have read that it could cause me to go into heart failure again. I won't be taking any medication. I am wondering if anyone has any idea why I go into these terrible episodes and what they may be. My dr thinks it is my heart only doing ectopic beats but I have read that it is deadly. I have 3 young children and in the past 2 years of seeing about 35 doctors and 15 specialists, I have only found this current doctor who believes my symptoms and has documented the bizarre beats on a number of ECGs. I would love some advice and I have certainly learnt not to rely on the medical profession. (I have had a REALLY bad time with this in the past 2 years, stories to make your toes curl.) Thanks, GReply Follow This Thread Stop Following This Thread Flag this Discussion
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