Guest CyberPixie Posted November 3, 2005 Report Share Posted November 3, 2005 Hi All,Have known I have autonomic dysfunction for 4yrs due to Ehlers-Danlos Syndrome type 3. Also have severe M.E as well as other things. Am mostly bedbound. This last 7mths have been ****. Have had breathlessness and trouble breathing, as if my chest is weak and I have to force myself to breathe as it feels like my breathing will stop. I get it at rest as well as on standing. Have very bad heart pounding/racing at rest as well as standing. Severe weakness, tiredness, lightheadedness. Numbness in whole body so I can't feel my body (this normal for POTS?) At times heart rate slows right down and breathing becomes very shallow and weak (mostly at night) Some nights I temporarily stop breathing and wake gasping.For 3mths I was unable to move and was so out of it I wasnt aware of who I was, time passing, couldnt concentrate on anything anyone said to me, I felt like I was going to go unconcious. (Is that POTS?)I am being investigated for Addison's Disease too. Recently saw an endocrinologist who also deals with POTS, he advised me to up my caffeine intake as he's just done a trial on it and says it helps with POTs. It seems to lift the tiredness but apart from that doesnt do much else. Am also on florinef which helps a little.Basically I'm having trouble coping with all this. On the worst days (today being one of them) I have no idea how I can live like this. I'm only 28. I can barely get to the toilet. I'm normally a very ambitious, driven person and I dont want to stay in bed the rest of my life, I have things to do!I'm worried about the connection with heart problems such as mitral valve prolapse as I have EDS as well, the endocrinologist didnt seem too worried.Also, can you stop breathing with POTS as my breathing side of it is bad?Just need some reassurance and to reach out to others with this horrendous condition. Quote Link to comment Share on other sites More sharing options...
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