HopeSprings Posted January 20, 2012 Report Share Posted January 20, 2012 Let's see how dysautonomia impacts our sleep. Quote Link to comment Share on other sites More sharing options...
rubytuesday Posted January 20, 2012 Report Share Posted January 20, 2012 I had 2 sleep studies well before POTS symptoms/dysautonomia became so pronounced. They were ordered by rheume and by neurologist--2 different businesses. Both show I do not get into stage IV sleep. I spend what little times I sleep in stage 2 (very light sleep). I have hypersomnia during the day. I was prescribed a sleeping pill. I have fibromyalgia and it is in the deep phase of sleep that the tissue heals. The first sleep study doctor told me the pattern was consistent in those with fibromyalgia (but I had not shared that diagnosis with him). My studies included the night and daytime. I had around 200 times when I was asleep that 'alpha' waves (ones that wake you up in morning) intruded on my sleep. With these new sleep aids, in me, they put me out fast but about 3 hours later it is like somebody turned a light on in the room telling me it's daytime/time to get up (not a good place to be a 2 a.m.) and some caused sleep walking/talking and eating. The old time (gentler) Rx I take takes a long time to get me to sleep. I have to keep it on schedule as if I do not, it seems there is this window of opportunity that passes and I may not get to sleep until 5 in the morning or not even at all. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted January 20, 2012 Report Share Posted January 20, 2012 I have a circadian rhythm disorder that makes it hard to fall asleep at "normal" times, so my deepest sleep is unfortunately at the time when I should be sleeping the deepest. Quote Link to comment Share on other sites More sharing options...
Serbo Posted January 20, 2012 Report Share Posted January 20, 2012 voted but not sure i quite fit in to the categories. Some days If i have more than 6 hours I feel terrible, any more than 7 and I am wiped out. Between 5 and 6.5 hours is perfect for me Quote Link to comment Share on other sites More sharing options...
McKenzie Posted January 20, 2012 Report Share Posted January 20, 2012 If you look at the times people post on this forum, it's clear to see dysautonomiacs are also insomniacs LOL! Quote Link to comment Share on other sites More sharing options...
kayjay Posted January 20, 2012 Report Share Posted January 20, 2012 I often wake up in a sweat anytime i roll over. I was wondering if this happens to other H- POTS people. I get get some sleep now due to medication but sleeping has been a problem for me for the last 13 years. My doctor wants me to do a sleep study but I am not sure what the benefit would be for me. i don't snore and I don't have apnea. I would be very interested to know if others deal with night sweats. ( not hormone related ). Quote Link to comment Share on other sites More sharing options...
RunningWild Posted January 20, 2012 Report Share Posted January 20, 2012 I am always tired, but if i don't take something to help me fall asleep, I have a hard time with that. Lately, the Xanax has been knocking me out every night, but I used to take 2-3 Excedrin PMs, and a few years ago I was drinking Nyquil everynight. The problem with this is that I can fall asleep better, but I often wake up multiple times in the night, and then have an even harder time falling back asleep. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted January 20, 2012 Report Share Posted January 20, 2012 My sleep rhythms are crazy right now. I fall asleep between 6-7:30 pm, and am getting up around 3:30-4:30 am. Ugh! I'm not quite sure how to move this pattern to a point where I can stay up until 9 or 10 pm, while waking up about 9-10 hours later. I usually am in bed by 5:30 pm because I just can't stay 'up' any longer, so I prop myself up in bed and read until I get tired. Quote Link to comment Share on other sites More sharing options...
goodnuff77 Posted January 20, 2012 Report Share Posted January 20, 2012 Kayjay I have a very big problem with sweating during the night. I dont take anything to help me sleep so when I do fall asleep I'm usually waking up all night very cold but drenched in sweat. My Doctor tells me this is due to drop in blood pressure. I have grown to accept this as another symptom that I cant get any help with. Also on average my blood pressure runs low usally around 90 over 60 with a heart rate of 110. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 20, 2012 Author Report Share Posted January 20, 2012 I get night sweats also. Not every night, but frequently.POTSgirl - that's awful! There's got to be a way to get yourself back on track? Can you force yourself for a night or two to stay up - do some activity, drink coffee or something to re-set things? Quote Link to comment Share on other sites More sharing options...
kayjay Posted January 20, 2012 Report Share Posted January 20, 2012 Thanks for sharing about the cold sweats. I actually have a call into my doctor about this because I am doing better overall but the sleeping thing is horrible. My bp and heart rate gets really high and really low... it would make sense that it bottoms out when sleeping. Funny thing is I am not sure if I sweat when i have passed out during the day.I did have a 24 blood pressure cuff and is showed that my bp got really low once during the night. i don't have the numbers. I don't know what the solution could be. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 21, 2012 Report Share Posted January 21, 2012 kayjay - I have night sweats too. Like my other symptoms, the severity waxes and wanes...sometimes its no big deal, other nights I have to change my clothes to be comfortable again. The docs have attributed it to Lyme Disease (which we are now back to based on my immunologist's most recent research...chronic Lyme.) potsgirl - I had a doc tell me to reset myself 15 minutes at a time. So, for a few nights, force yourself to stay awake 15 mins. more than it feels like your body wants. When your body then wants to fall asleep a little later, force yourself to stay awake another 15 mins. longer. I had to do this at the beginning of my Lyme because I was collapsing when I got home from work and then waking at 2 or 3 am. It took me about 4 weeks to get back to a normal bedtime but it worked and the 15 mins wasn't nearly as hard as doing it "cold turkey". Quote Link to comment Share on other sites More sharing options...
Allene Posted January 21, 2012 Report Share Posted January 21, 2012 I often have night sweats. About a year ago it was so bad that every night I'd have to change clothes around 3am, and sometimes change the sheets. Now it isn't so bad, and I just roll over and find a dry spot!For several months last year, I'd wake up every night anywhere from 1am to 4am in a panic. I'd wake up in the middle of a random dream, sure that there was someone in my room trying to get me. (One of) my (many) doctor(s) thinks it's because of the dysautonomia, and that is where my anxiety stems from as well.Lately I've been sleeping pretty well. about 9 hours a night, without waking up for a potty trip or anything! I feel more rested during the day now, but I still tend to get sleepy anywhere from 3-6 pm. For a while it was pretty intense and I'd end up sleeping 12 or more hours a night. I'm able to stave off going to bed until a normal time now, and I hope I can keep it that way. Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted January 22, 2012 Report Share Posted January 22, 2012 Hi. I'm new to this forum and so glad to hear I'm not alone in sweating all night. I usually awaken 1-5x throughout and almost every time the sheets are damp. Couple of funny things- wonder if anyone else has experienced: I'm sweating but very cold. (temp runs between 96-97) Also, it seems I sweat more on the left side of my body than the right.As a side note, I've had a couple of sleep studies done and I have mild sleep apnea- both central and obstructive. Quote Link to comment Share on other sites More sharing options...
bunny Posted January 22, 2012 Report Share Posted January 22, 2012 Part of my POTS is my fault -- I know I don't get enough sleep during the week, which aggrevates my symptoms. Getting only 3-4 hours of sleep a night on the weekdays due to work and family, but will sleep up to 12 hours a night on the weekends when no one bothers me other than attempting to ring me (don't bother, I shut my phone off now on the weekends when sleeping). Irregardless of how many hours I sleep, I generally have a very difficult time waking up. I won't even hear the alarm clock and depend upon light to wake me. Sometimes when I do wake up, my bp is so low that trying to sit up or get out of the bed is out of the question. It feels like I'm drugged. Often I'll sit up only to pass right out there in bed. This can go on a couple of times before I'm finally up. I'm still unstable and in a fog for awhile before I'm awake. I haven't seen anyone mention this yet, but sometimes I'll wake up in the middle of the night with terrible chills. Nothing I do can fix it other than an external heat source and it's not always because its cold in the room, although I do get cold easily. Not sure what causes this but I'd love to never feel it again. If I'm lucky I'll only be awake for 5-10 minutes and pass out. If its bad I'll feel like this for an hour or so and by that time my body will stabilize. I do get night sweats on occasion but never traced out their cause. I do know that my bp drops waaaay low at night when I'm sleeping. This is actually the POTS issue ive been trying to figure out as of late. Off the top of my head, I remember that I dropped down to 78/35, MAP 49 pulse 46 last week. I know that its normal for bp and pulse to drop when sleeping, but if wondering how low is too low and shay are the long term effects of this. The last thing I need is more brain damage at this point. General medical wisdom appears to be focused on high bp and very little is mentioned about the low end. Some doctors I've seen don't seem to think there is anything such as "too low", but I don't believe it. As an aside, my messed up body has its benefits. If I need to get some sleep I just lay down on my back (lowers pulse), fire up the electric blanket (lowers bp) and I pass out into slumber quite quickly. Almost always fall asleep in under 10 minutes. Under 5 minutes if I'm feeling exhausted/having one of my energy lows. Under 30 seconds if I'm having one of my bp/dizzy spells. Quote Link to comment Share on other sites More sharing options...
pulp Posted January 22, 2012 Report Share Posted January 22, 2012 I sleep very poorly, fragmented. Dream weird lively dreams which I remember every morning, I can remember waking up many many times every night. I fall asleep again quickly but wake up again quite fast. Worse when I'm being active, then I get jolted awake constantly throughout the night. Not very fond of sleeping anymore, it has become something unpleasant. Usually my body aches, especially my hands, in the morning. The ache can wake me up sometimes. Quote Link to comment Share on other sites More sharing options...
kayjay Posted January 23, 2012 Report Share Posted January 23, 2012 Pulp, funny to me that you mentioned your hands hurting. I have the vivid dreams but I usually enjoy them. I often dream that I am playing field hockey, running, or playing fun sports like I did as a child. My hands hurting has always been weird to me. My whole body will hurt but sometimes I will dream that I have been banging on a piano so hard that I injured myself.The lack of sleep thing is really hard and the sweating is gross and scary. I have ( only twice I think) completely lost my vision when I was laying in bed reading.... I'm guessing my pressure was low . Quote Link to comment Share on other sites More sharing options...
pulp Posted January 23, 2012 Report Share Posted January 23, 2012 It's weird isn't it! When it all began it started with the dreams + fatigue + aching hands. My body feels stiff too in the morning, but no wonder considering I probably do not sleep very well. I never enjoyed the dreams, they are usually quite unpleasant and the feeling from them lingers the whole day. I sweat too some nights, if I put the comforter on I'm instantly sweaty and if I remove it I'm so cold it hurts. Odd to be honest! I think my pressure can drop quite low when sleeping - have had measured like 70/40 or something in the night. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 23, 2012 Report Share Posted January 23, 2012 I also wake a few times in the middle of the night with "dampness", as I that is about as much sweating as I'll ever have! I do not even get damp from heat, but I get it in the night. I also break out in heat when I roll over, mostly on my left side. I know when I get these flashes, I am usually awake and tossing for the next 1-2 hours. I guess the adrenaline or cortisol, or whatever it is, has to get out of my system. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 23, 2012 Report Share Posted January 23, 2012 When my POTS was more significant I had very lively and disturbing dreams typically. Like pulp describes, I did not enjoy sleep during that time. It was for me like my body was on constant alert and could not relax. I would feel most poorly in the AM on waking and have a very hard time adjusting from sleep to being awake.I still am unable to "jump" out of bed in the AM, but transition is much better than it was.I do have trouble falling asleep at times (eg lying in bed for over an hour awake) and I feel there are some nights I wake up a lot. But my husband does snore at times and typically is unable to sleep past 4 AM so gets up around then, and we have a dog that can be restless and moving around the room.I think a lot of people have sleep problems--even people who are otherwise well... Quote Link to comment Share on other sites More sharing options...
cindeebee Posted January 26, 2012 Report Share Posted January 26, 2012 I often wake up in a sweat anytime i roll over. I was wondering if this happens to other H- POTS people. I get get some sleep now due to medication but sleeping has been a problem for me for the last 13 years. My doctor wants me to do a sleep study but I am not sure what the benefit would be for me. i don't snore and I don't have apnea. I would be very interested to know if others deal with night sweats. ( not hormone related ).I wake up several times a night. I immediately get a RUSH of Heat and start sweating too. But it doesn't seem like I've woken because I'm hot, it's like as soon as I wake up, adrenaline kicks in and I get that burst of heat. Very odd sensation.I take ibuprofen almost nightly to help me w pains so I can sleep, but about once a week I take Lyrica, when I want to get a really deep sleep. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted January 26, 2012 Report Share Posted January 26, 2012 My nights and days are mixed up just like a baby's... If somebody wakes me instead of just waking up naturally, then I feel very nauseated. Am I the only one with the mixed clock and morning nausea? Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 26, 2012 Report Share Posted January 26, 2012 McBlonde, I have to wake up naturally in the morning also. If I get woken up at 5 or 6 a.m., I feel so out of it, and dizzy when I get up. It's like my body is not giving me the morning cortisol or whatever I need until around 7a.m. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 26, 2012 Author Report Share Posted January 26, 2012 I have to wake up naturally in the morning also. If I get woken up at 5 or 6 a.m., I feel so out of it, and dizzy when I get up. YES! Me too, exactly. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted January 27, 2012 Report Share Posted January 27, 2012 Isn't that weird! Mine is nausea instead of dizziness. I was up until 7:00 am and woke up at 3:00pm ..... I hate this! Quote Link to comment Share on other sites More sharing options...
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