Pots Sleep Study - What?

[HopeSprings]

Help with interpretation please. For a minute it sounds like they're saying we have the perception that our sleep is poor, but it isn't, but then it sounds like they did find something off with our sleep. I can't tell!

http://www.ncbi.nlm.nih.gov/pubmed/23538032

[lejones1]

I don't have a medical background, so I may not be correct, but this is what I think the article says: POTS patients perceive their sleep quality to be worse and there are two things going on. Part of it is just perception: patients think it takes them much longer to fall asleep (subjective SOL), but the amount of time is actually comparable to controls. But also, POTS patients really do have worse sleep efficiency, and there's a correlation between objectively measured sleep efficiency and how tired patients report they feel. There's also a correlation between standing NE levels and how long it takes patients to fall asleep - so some patients really do take longer to fall asleep. And there's also a correlation between standing heart rate and waking up in the middle of the night. So basically...POTS patients do have poorer sleep quality, for a few reasons, but it's also exacerbated by a misperception of how long it takes them to fall asleep.

[weathermandj]

I had a sleep study done less than a year ago because my sleep quality is horrible. It takes me a few hours to fall asleep some nights. During the sleep study, I woke up every 7 minutes in the night. That was with sedatives for the study! My NE levels are normal. I just flat out can't sleep well. My sleep doctor won't even let me drive anymore because of my poor sleep and fatigue + brain fog issues. I haven't driven in over a year now. :/

[lejones1]

I had a sleep study done less than a year ago because my sleep quality is horrible. It takes me a few hours to fall asleep some nights. During the sleep study, I woke up every 7 minutes in the night. That was with sedatives for the study! My NE levels are normal. I just flat out can't sleep well. My sleep doctor won't even let me drive anymore because of my poor sleep and fatigue + brain fog issues. I haven't driven in over a year now. :/

weathermandj, have you ever taken your HR during the night?, I just got a HR monitor and have been wearing it to bed and noticed that HR is getting up to 140-150 while I'm sleeping (I set it right before I fall sleep and stop right when I wake up, so I know it's not from moving around). So the last few nights, if I woke up, I looked at my wrist and sure enough my HR was well above 100. I don't even feel like I sleep that badly - I usually only wake up once or twice a night, although I am tired in the morning. It would be interesting to know if you're getting similar surges at night and maybe that's what's waking you up so frequently.

I watched this the other day: http://www.csfinfo.org/node/299, found it linked somewhere on here. That doctor seems to think people with POTS (or I guess just autonomic dysfunction) have a bunch of adrenaline surges at night which either wake them up or cause micro-awakenings (so they don't even realize they're awake) and are never able to get into deep sleep, which then causes fatigue. Pretty interesting.

[ramakentesh]

They are basically saying that there is a correlation between sympathetic hyperactivity and poor sleep latency. We sleep bad because our sympathetic system is overactive.

I know of a few patients who take mestinon before bed. They claim it helps but I have no idea if this is accurate.

Another study on CFS found the same thing.

it is interesting that in NET deficiency there is blunted upright vasoconstriction but elecvtaed supine sympathetic activation - meaning you'd need an upper to feel better upright and a downer to sleep better LOL.

[HopeSprings]

Ahhh - makes sense now. Thanks for the explanations.

[looneymom]

Interesting study. My son just had a sleep study done. Don't have the results yet. Our cardioloist wants to see the results because he is thinking about starting my son on mestinon.

[weathermandj]

I had a sleep study done less than a year ago because my sleep quality is horrible. It takes me a few hours to fall asleep some nights. During the sleep study, I woke up every 7 minutes in the night. That was with sedatives for the study! My NE levels are normal. I just flat out can't sleep well. My sleep doctor won't even let me drive anymore because of my poor sleep and fatigue + brain fog issues. I haven't driven in over a year now. :/

weathermandj, have you ever taken your HR during the night?, I just got a HR monitor and have been wearing it to bed and noticed that HR is getting up to 140-150 while I'm sleeping (I set it right before I fall sleep and stop right when I wake up, so I know it's not from moving around). So the last few nights, if I woke up, I looked at my wrist and sure enough my HR was well above 100. I don't even feel like I sleep that badly - I usually only wake up once or twice a night, although I am tired in the morning. It would be interesting to know if you're getting similar surges at night and maybe that's what's waking you up so frequently.

I watched this the other day: http://www.csfinfo.org/node/299, found it linked somewhere on here. That doctor seems to think people with POTS (or I guess just autonomic dysfunction) have a bunch of adrenaline surges at night which either wake them up or cause micro-awakenings (so they don't even realize they're awake) and are never able to get into deep sleep, which then causes fatigue. Pretty interesting.

Good idea! I will invest in a monitor that can record. I have a pulseometer that I can use to get the current rate, but it doesn't record through the night. I could put it on my finger when I wake up and see what my HR is doing. I like your idea. Thanks.