andybonse Posted December 27, 2015 Report Share Posted December 27, 2015 Hey all,I'm pretty confused with what I actually have, I know its EDS and a type of dysautonomia and do get pots.But really, on Florinef, my heart rate is pretty good. standing is like 70-80 but I am more light headed, even laid down in a different type of way and feel slow? I dont really get the typical pots rise in heart rate when I stand now.My supine heart rate goes down to like 43 and I feel so weird and slow I hate it!Im trying to figure out, have my symptoms changed a lot or is it the florinef.Im thinking, go down slowly on the florinef and see what happens, I mean if I can get my resting hr faster, Ill feel a lot better.Just not sure how to explain my symptoms anymore apart from slow heart rate and light headed now and again with normal heart rates and blood pressures are always normal lol.Just scared to go to sleep sometimes as I can feel it beating hard and slow, im like ut oh what if it stops! lolI just wish I could see invite my body and see exactly what was going on, the treatment would be much easier then, Midodrine makes me worse too..... Quote Link to comment Share on other sites More sharing options...
andybonse Posted December 27, 2015 Author Report Share Posted December 27, 2015 I might just do a weeks HR and BP diary, and call my autonomic neuro and say these are my readings and my symptoms are always light headed and slow heart rate a lot.Alcohol makes me feel SO SO much better, I think it vasodilates the right areas and increases my heart rate so the right areas get the blood it needs so I feel normal, the only bad bit is it got a bit regular and ended up enjoying getting drunk so I have stopped completely, I dont want to ruin my liver for the sake of feeling normal a few hours, ill limit it to once every 2 weeks or somthing, just that nice release. Quote Link to comment Share on other sites More sharing options...
artsystacey Posted December 29, 2015 Report Share Posted December 29, 2015 I think sometimes people with dysautonomia go through periods of worsening and changing symptoms - I'm not sure what it could be for you, but I've had very high and low heart rate readings. Your blood pressure dropping in conjunction with your heart rate dropping is usually neurocardiogenic syncope (which I have) - but of course, I'm not a doctor! With NCS/POTS alcohol makes me much much worse since it lowers my blood pressure more and increases my heart rate. I wonder with EDS, perhaps you have some narrow vessels that's causing poor circulation.Just speculation on my part, but I hope you're feeling better soon! Quote Link to comment Share on other sites More sharing options...
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