Sleep Hygiene

For everything and anything else not covered in the other RLS/WED sections.
ViewsAskew
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Sleep Hygiene

Postby ViewsAskew » Sun May 07, 2017 5:24 pm

Based on a recent comment I made about sleep hygiene - something often used for insomnia - I did a bit of a search. Didn't find much in terms of research, but did find this. Would love to hear other people's thoughts and experiences.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2805158/
Ann - Take what you need, leave the rest

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legsbestill
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Re: Sleep Hygiene

Postby legsbestill » Sun May 07, 2017 7:08 pm

I find myself very resistant to the concept that my rls urge-to-move symptoms would respond to a better regime of exercise and/or cognitive behavioural therapy for insomniacs or behavioural sleep medicine interventions. However the (very small) randomised controlled tests that are cited seem to suggest quite strongly that they might have something to offer even for rls and plmd.

More generally, I note that the article does also state 'There has been some evidence that "idiopathic" RLS may actually be a harbinger of neurodegenerative conditions such as Parkinsons.'
This is the first time I have seen this stated. I am watching my uncle in the latter stages of Parkinsons making a slow painful demise and am not very bucked up to read this.

It also says that 'The relationship between glucose control and RLS is just beginning to be explored.' Does anyone know if this went any further (bearing in mind that the article dates back to 2009)?

In relation to my insomnia, which is definitely an element of my overall rls, I have been thinking that I should try getting up at a more consistent time and taking more exercise during the day. I would only consider doing this however if I am not unduly troubled with urge-to-move symptoms. At present I am just spending too much time in bed or exhausted in a chair solely because of insomnia.

Polar Bear
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Re: Sleep Hygiene

Postby Polar Bear » Sun May 07, 2017 7:17 pm

'There has been some evidence that "idiopathic" RLS may actually be a harbinger of neurodegenerative conditions such as Parkinsons.'

Yes, it's the first time that I have seen this comment.

There is absolutely no doubt in my mind that my insomnia is a part of my RLS. Before RLS I slept like a log.
As for sleep hygiene - I reckon the suggestion of getting up at the same time each day doesn't play a part in my routine. No alarm will be set on my behalf. I sleep if I can. I may awaken at 6am, it could be 8am - indeed it might be 10am. When I awaken there is a small window time limit before rls symptoms will kick in and I have to get up. No such luxury and having a nice lazy lie in bed and a little doze.

No way will I set an alarm to go off at a time when I've possibly only had 2 or 3 (fragmented) hours of sleep.
Betty
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badnights
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Re: Sleep Hygiene

Postby badnights » Mon May 08, 2017 8:11 am

There actually has been no such evidence that I'm aware of. The full quote is "There has been some evidence that idiopathic
RLS may actually be a harbinger of neurodegener-
ative conditions, such as Parkinson disease.13
Confirmatory evidence of a definitive relationship
between these conditions is lacking. "
The reference for this statement is a paper from a 2007 issue of Movement Disorders that was devoted to RLS/WED. I downloaded that paper, and it implies no such thing as the first quoted sentence. It is a review of all then-available studies on any possible relationship between PD and RLS, and no study was able to find any, other than the fact that they both respond to dopaminergic meds, which is attributed to degeneration of dopaminergic cells in PD and malfunction of those same cells in WED/RLS.

Some studies seemed to indicate a higher rate of WED/RLS in PD than in the general population, but there were too many confounding factors to be sure. They didn't even mention any studies looking at whether PD is more common in WED/RLS patients; the focus of the paper was on PD, for some reason, despite the issue being devoted to RLS.
Beth - Wishing you all restful sleep tonight
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legsbestill
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Re: Sleep Hygiene

Postby legsbestill » Mon May 08, 2017 9:23 am

Yes; I suppose I drew attention to it because it cast the first article in a certain light - a little cavalier in the manner in which it presented the findings it purported to rely on.

stjohnh
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Re: Sleep Hygiene

Postby stjohnh » Mon May 08, 2017 1:49 pm

I don't think consistent bed times and arising times have any benefit for RLS insomnia. All my life I have been a morning person. I always (95+ %) of time go to bed between 9 and 9:30 and awaken between 5 and 6 am. I have NEVER slept past 10 am my whole life (with a few exceptions when I was very ill). RLS hasn't changed that aspect of my life. There is a strong circadian rhythm aspect to RLS symptoms, research is ongoing into details of that.

For me, how much exercise I get during the day doesn't have any correlation with either the severity of evening leg jumping nor insomnia.
Blessings,
Holland

Polar Bear
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Re: Sleep Hygiene

Postby Polar Bear » Mon May 08, 2017 4:24 pm

Since I have retired from employment I have on many occasions slept until 10am.
This can happen when I haven't been able to sleep until perhaps 5am, or later.

I usually go to bed around 11pm - midnight and would read for an hour or so. (or 2 or 3 hours) Sometimes have to get up again when sleep doesn't come.
Sometimes get an hour's sleep and then get up for a while.

My main sleep spell is towards dawn.
Betty
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badnights
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Re: Sleep Hygiene

Postby badnights » Thu May 11, 2017 4:57 am

Wow. I am so severely offset. It's having a huge impact on my job. They can accommodate me when I'm in the office, but I'm supposed to do field work too, and that is getting brutally hard to manage.

Last fall I had progressed (regressed, depending on your outlook) to falling asleep at 3 or 4 AM. I went east for my dad's stroke and then funeral, I was gone 5.5 weeks, and since I came back from that, I have been going to bed at 5 or 6 aM. That's the only it jumped noticeably. Mostly it has been almost imperceptible. And it's ongoing. I'm shifting by - - about 40 minutes a year. I would love to know the cause . Or, scratch that - I would love to control the cause. Cuz it sucks. Really really. Someone here said "I'm sick of living like a vampire" and that's so true!

A number of times- probably 4 or 5 times over the years, but none recently - I have tried to re-set myself by going to bed later and later every day, until eventually I was going to bed at a normal time. It never worked, I would be later already by the next day.
Beth - Wishing you all restful sleep tonight
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ViewsAskew
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Re: Sleep Hygiene

Postby ViewsAskew » Thu May 11, 2017 5:46 am

Beth, same exactly for me. I also tried the reset thing multiple times.

Options - first, the alerting from the opioids does it. Second, we have DSPD - and always have - but something about the drugs makes it harder to deal with. Third, we have a longer sleep cycle - again, somehow exacerbated by this so we can not longer ignore it.
Ann - Take what you need, leave the rest



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badnights
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Re: Sleep Hygiene

Postby badnights » Thu May 11, 2017 6:17 am

I can't recall when the serious phase shifting started. I was such a mess when I was on gabapentin and codeine (my first opioid) that I wouldn't have been able to tell, since I hardly slept at all, ever. Definitely when I started hydromorphone I had a nighttime alerting problem; the hydromorphone was not really a satisfactory solution until I took zopiclone too.

But the alerting is different than the phase shift? Or is perhaps a cause of it? If it's a cause, then why doesn't everyone who gets alerted by opioids experience a delayed sleep phase?

So maybe you're right in that we've always had a bit of DSPS, but were able to conquer it, until ... WED hit us hard? until we took regular opioids? until something happened that made the sleep phase issue prominent.

I know I have a somewhat longer sleep cycle - but I think lots of us probably do, and I just gut-level don't think that would be enough to cause this. But who knows.

I couldn't come up with a single idea, and you came up with three! I have a headache and sore throat, perhaps that's my excuse :)
Beth - Wishing you all restful sleep tonight
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ViewsAskew
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Re: Sleep Hygiene

Postby ViewsAskew » Thu May 11, 2017 8:33 am

I have always had a longer cycle, too. Any time I had time off, I would immediately go to bed later, sleep later. Even as a child, I was reading under the covers when supposed to be sleeping and had to have a special alarm because I didn't wake up.

NO idea which of the issues kicked it into higher gear. My guess is that we just cannot do that things we used to in order to control it. I cannot make myself get up regardless. I cannot make myself stick to a 10 PM bedtime....because sleep at that hour isn't possible unless I am over medicated. And, so on. The only way to get enough sleep to sort of function is to sleep much later than the rest of the world.

And, really, what they tell us to do is crazy. Stick to a rigid schedule, they say. Yup - did that for years. But, I cannot any more. Sleep privilege is my new term, lol. People have NO idea what those of us with sleep issues go through and how darn lucky they are. The world is on a 24 hour clock with 8-5 or 9-5 work hours. Those of us not on that either find work in non-traditional work hour jobs (likely why I was a restaurant manager when I graduated college and a server/bartender in college) or we suffer greatly.

About two years ago, I stopped almost all my responsibilities and I slept whenever. Most people are up around 18 hours, then sleep. I was up, routinely for 20-22 hours. Occasionally, it was 25-30. I just went with it. I never knew how late I'd be up, though it tended to rotate forward somewhat regularly. Sometimes I would wake up at 6 PM just in time to cook dinner for hubby as he returned triumphantly from the consulting job of the day, lol. Sometimes I would go to bed when he awakened. Sometimes I slept through dinner time. I could usually tell what the next few days would sort of look like, but not in detail. I made NO plans with anyone; or I would say that I would make it if I could, but not to count on me.

i also ate differently - it was weird. Very similar to intermittent fasting. I would sometimes go a very long time without food and was fine with it. I lost 25 pounds and felt better than I have felt since all of this crap started. I think it is a HUGE toll on us to try to keep fitting in when we clearly do not and could be linked to why so many with sleep disorders gain weight. Not sure how what I did affected it, but it did. I have kept that weight off, but not without a fight. It is not easy now that I have tried to go back to a more conventional schedule.
Ann - Take what you need, leave the rest



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badnights
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Re: Sleep Hygiene

Postby badnights » Fri May 12, 2017 8:54 am

That really resonates with me. I suspect I could do without much of my medication if I could just free-wheel like that, instead of trying to force myself asleep exactly when I am most alert, and force myself awake when my brain wants to sleep. I suspect if I was free-wheeling, I would be doing your mini-fast thing, too, but I can't be sure; I tend to go for long periods without eating after I get up, but once I start eating, it's like a trigger and I don't stop until I lie down.
Beth - Wishing you all restful sleep tonight
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ViewsAskew
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Re: Sleep Hygiene

Postby ViewsAskew » Fri May 12, 2017 7:18 pm

badnights wrote:That really resonates with me. I suspect I could do without much of my medication if I could just free-wheel like that, instead of trying to force myself asleep exactly when I am most alert, and force myself awake when my brain wants to sleep. I suspect if I was free-wheeling, I would be doing your mini-fast thing, too, but I can't be sure; I tend to go for long periods without eating after I get up, but once I start eating, it's like a trigger and I don't stop until I lie down.


It was a complete success in terms of my body, my mood, my health, reducing medications, and so on. It was an abject failure in terms of having ANY social contact with the world or for work.

Wish I knew how to do it in a modified way. You know, I never kept track...but I wonder if I fell into some sort of cycle that I could count on?
Ann - Take what you need, leave the rest



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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Sleep Hygiene

Postby badnights » Sat May 13, 2017 11:39 am

I might have to go off meds without the possible benefit of iron infusion ahead of time. My doc wants to know how Earley and other, how Buchfuhrer, how any of those guys orders infusions and ensures that the recipient doesn't get hemachromatosis. I know they eliminate you in infusion studies if you have over this or under that iron measures - I'm zopicloned, cna't look them up - but that does not relate directly to what I want to know. I should write to Dr B., Ihaven't in years.
Beth - Wishing you all restful sleep tonight
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