Restless Legs Syndrome (RLS) Discussion Board

stjohnh wrote: ↑

Fri Apr 02, 2021 8:42 pm

Sleep is more complex than most people think. There are several stages, and only the deeper stages give refreshing sleep. So a person can sleep 8 hours and still not be refreshed. It is not easy to determine how long each stage of sleep lasts for a particular individual. I spent a year monitoring my sleep with several different sleep monitoring setups. The best that I used was a chest strap that sends a signal for each heart beat to a phone app. The most useful parameter for evaluating sleep stage from heart data is the heart rate variation. The normal heart does not beat with absolute regularity. There are a few milliseconds difference between each normal heart beat. This is the heart rate variation, and apps can measure this. The Polar tracker is currently $53 on amazon https://www.amazon.com/gp/product/B007S ... UTF8&psc=1

Wrist monitors (Fitbit, etc.) measure heart rate by pulse pressure, and that is not accurate enough to measure heart rate variation. You need a measure of the heart's electrical activity (chest strap).

I have a medical research sleep device (Zmax) and software that captures and scores raw eeg data. I’m taking courses to learn how to read the sleep data, it’s hard but I’m getting the hang of it.

I wouldn’t recommend this for everyone, but I’m a certain type of person and felt I needed to go down this path to really understand what is working and what is not. So far, it’s been insightful - particularly in assessing total sleep time. Even with mirapex, which materially reduces slow wave sleep, I am refreshed if I can get 7 hours. I just have to time it perfectly.

Further expanding on my rationale, long-term sleep research is nonexistant. And, for good reason, it’s just too expensive and invasive to hook people up to a PSG for 12 weeks. I’m not even sure I’ve seen a study where they do more than 5 days of PSG in a row. And, that’s just the start of the inherent limitations of studying sleep ina lab. In my eyes, this is just a space where our current methods of research have their limits.

I’m jinxing myself here, but I have gotten 4 nights of fully rested sleep in the last 7 days. I think it’s partly due to the meds and partly due to the understanding I have with my sleep. I felt what it feels like to feel normal again - something I never thought I’d feel again. I was so productive and charismatic - the world was so light. The past several months have been very difficult for me and that feeling really showed me that the person I was, before sh** hit the fan, is still there. But I digress.

Rustsmith wrote: ↑

Fri Apr 02, 2021 8:07 pm

What is it that wakes you up? The RLS or just random awakenings?

That is what I am hoping that the latest sleep study will reveal. It isn't simple RLS and I didn't have any PLMS during the study that showed 45% sleep efficiency. I had some mild RLS urges once during the night during this recent study, so it could be that I am being awakened by such "mild" RLS that I am not totally aware of it. But my guess is that it is related to an issue with the glutamate (insomnia) side of RLS rather than the dopamine (urges) one. I also know that I rarely get into the deep stages of sleep because about once or twice a week I do something physical as I awaken from a dream, such as roll out of bed as I am dodging an attacker in my dream. So even during REM sleep, I am not far from waking up.

Yes, completely relate to the wake ups and the glutamate issue. Those wake ups will reduce the amount of time you spend in deep sleep, it’s been very important to minimize that. Unless you have a lot of “deep sleep debt” you won’t jump right back into deep sleep. At least, that’s not what my eeg data tells me. I’m also incredibly easy to excite (glutamate issue) at night; I don’t even look at my phone past 10. Even talking about certain topics with my girlfriend will get my brain too excited: and, once I’m up, I’m up.

I also notice that I have to act on my urge to sleep almost immediately. I can’t get tired, then brush my teeth and get ready for bed; it’ll be too late. Even 15 minutes will cause me to miss the “wave”. I pretty much know I’ll fall asleep between 11:30 and 12:30. At the slightest inkling, I’ll jump into bed. I usually give myself 30 minutes before getting back out. It may take 2 times of this, but it’s been working much better.

About 4 hours. I have recently been taking Miripex and have increased my sleep to 6 hours.

I also notice that I have to act on my urge to sleep almost immediately. I can’t get tired, then brush my teeth and get ready for bed; it’ll be too late. Even 15 minutes will cause me to miss the “wave”

This is important. Along with modifying your screens to eliminate green and blue light, and swapping out your household lights for red or amber ones (unless you are OK with just putting on amber goggles).

I get 5 or 6 hours a night generally. Sometimes 7. I start my gabapentin at 4:30 unless I forget. I space out 3000 mg until about 1:00. Occasionally I'll wake up at 5 with symptoms getting out of bed. Then I just get on the computer for an hour and go back to sleep. My problem is when I'm late on my meds. Then it's uncomfortable til I catch up.