janiedelite Posted January 7, 2011 Report Share Posted January 7, 2011 I've noticed that during times when life dictates that I only 6 hours of sleep or so a night that my upright heart rate and BP are much more normal. However, I can only go for so long before the exhaustion is too stressful and I have severe symptoms of nausea, pain, etc. As soon as I start sleeping my normal 9 hours a night, I wake up feeling extremely dry and my heart rate and BP are very symptomatic. For me, it seems like my peripheral vasculature really dilates the longer that I'm resting. I've tried to combat this by wearing compression hose to bed, elevating the head of my bed, and taking in extra fluids before sleeping (that actually caused headaches and high BP/low pulse once I laid down). It seems that I'm either exhausted from lack of sleep, but not so symptomatically while upright, or I'm more rested but have more orthostatic symptoms. I've been trying to increase my activity for 2 years now and feel like I'm as good as I'm going to get. Has anyone else tried to improve their POTS through exercise only to experience only a little improvement along with lots of setbacks? Quote Link to comment Share on other sites More sharing options...
lieze Posted January 7, 2011 Report Share Posted January 7, 2011 I've noticed being able to perform at times better on less sleep.It's like I sneak awake ane functioning before the dysautonomia has a chance to wake up and be aware.I was able to get up and drive on the interstate for a short spurt to take my son to an event he needed to attend.Normally that would overstimulate me and send me into panic like symptoms but I was too groggy to panic.In fact later in the day I had a lot of trouble picking him up eve though I went through town.I was overly aware and had all sensory systems going nuts on overdrive.I felt totally unglued untilwe made it home. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 7, 2011 Report Share Posted January 7, 2011 Goodness yes. If I have been able to exercise more regularly I also have to increase rest/naps. I get so wiped out from the extra physical exertion.Sometimes people don't understand because we are "suppose" to build up strength with regular exercise. I tried so hard and wound up tearing my pelvic muscles from exertion so I don't do that anymore! With people who go on and on about how dysautonomia can be healed with regular exercise, I try to explain that in our type bodies, we have just so much energy and that when it is gone we must stop and replenish. Like a battery. That usually help them visualize the problem better.As for sleep issues. I have non restorative sleep troubles. It may be the sensitive ANS issues and it may be what makes me then get up three times at least to use the bathroom. At any rate, naps are my way of keeping up as good a level of function and balance as possible. It is not the hours of sleep that matter to me but the quality of the sleep I get. Fortunately, naps and going horizontal for rest does restore better energy in me. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 7, 2011 Report Share Posted January 7, 2011 I have noticed this too, although not as severe as what you describe. My dr did advise me when I was initially diagnosed, to fluid load before bed (can make for a difficult night...) and fluid load as soon as wake up--and not go longer than 8 hrs w/o drinking anything. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted January 7, 2011 Author Report Share Posted January 7, 2011 With people who go on and on about how dysautonomia can be healed with regular exercise, I try to explain that in our type bodies, we have just so much energy and that when it is gone we must stop and replenish. Like a battery. Very good illustration! I wish I could feel better after a nap. For some reason, my burning skin pain gets worse when I lie down. I think it has to do with the distribution of blood volume. But mostly I just feel hungover after napping most of the time, and it takes a lot of time being upright and fluid loading before I regain my level of function. Still, I am able to take care of the house and be a foster mom, so I think I function pretty well! I think if I didn't have the distraction of these wonderful children, I'd be thinking much more about how lousy I feel... Lieze, I can relate to what you describe. Sometimes by getting up much earlier than normal, I can avoid the morning hangover feeling. But then I find, like you, that I really feel lousy later in the day. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted January 7, 2011 Author Report Share Posted January 7, 2011 As for sleep issues. I have non restorative sleep troubles.Yikes! I think I remember you had a sleep study that confirmed this. Even though staying recumbent causes certain problems for me, I'm so thankful that I'm able to sleep fairly well. When my dysautonomia wasn't as well-managed, I would have cold sweats and frequent panicked wakings at night. Wearing compression and staying hydrated has been helpful in eliminating this problem for me. Tearose, I know you are very diligent about managing your illness so I'm not making suggestions for you, just for anyone else with similar sleep issues! Thank you all for sharing!!! Quote Link to comment Share on other sites More sharing options...
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