Regular Sleep Schedule

For everything and anything else not covered in the other RLS sections.
ratfancy
Posts: 18
Joined: Sun Jul 19, 2009 5:43 pm
Location: Sarasota, FL

Regular Sleep Schedule

Post by ratfancy »

As a 30-year sufferer, I have to laugh about the advice one sees in literature from all sources. Most "helpful" articles on RLS say to "maintain a regular sleep schedule". Are they joking? None of these writers have actually experienced RLS. That is the oxymoron. One can't. You can't sleep at night, even if you go to bed the same time every night. That is the definition of RLS. Duh.

I sleep whenever I can in 90-minute increments to get a complete REM cycle.

Rustsmith
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Re: Regular Sleep Schedule

Post by Rustsmith »

Many of us have threatened to assualt the next doctor to tell us that we "only need to practice proper sleep hygiene". A person simply can have no idea of what it is like to have RLS unless they have it or live with someone who does.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.

debbluebird
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Re: Regular Sleep Schedule

Post by debbluebird »

ratfancy wrote:As a 30-year sufferer, I have to laugh about the advice one sees in literature from all sources. Most "helpful" articles on RLS say to "maintain a regular sleep schedule". Are they joking? None of these writers have actually experienced RLS. That is the oxymoron. One can't. You can't sleep at night, even if you go to bed the same time every night. That is the definition of RLS. Duh.

I sleep whenever I can in 90-minute increments to get a complete REM cycle.

So true !

ViewsAskew
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Re: Regular Sleep Schedule

Post by ViewsAskew »

I do the 90 minute increments as often as I can. If I have to have an alarm, I set it based on that.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

Polar Bear
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Re: Regular Sleep Schedule

Post by Polar Bear »

One time I read an article about in a local Sunday newspaper. It was written by a GP who did a regular weekly column. I was so incensed at the content which was similar to what *ratfancy* said. He also gave the usual about sleep hygiene i.e. Room dark, comfy bed etc. He wrote as if it was a minor inconvenience.

I sent off an email to the address given referring to his article and its lack of useful information. And included a suitable attachment providing quality RLS information/treatment.
I didn't even get an acknowledgement.
After a couple of weeks I wrote again with a copy of the original email, again without a response.

Nowadays I see this same guy on tv. He is a member of some senior medical advisory panel and I want to shout at him.....but you know nothing about rls ll
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Frunobulax
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Re: Regular Sleep Schedule

Post by Frunobulax »

ratfancy wrote:As a 30-year sufferer, I have to laugh about the advice one sees in literature from all sources. Most "helpful" articles on RLS say to "maintain a regular sleep schedule". Are they joking? None of these writers have actually experienced RLS. That is the oxymoron. One can't. You can't sleep at night, even if you go to bed the same time every night. That is the definition of RLS. Duh.
The recommendation is not without merit. It's one thing that can be effective for many people. Compare it to a fire extinguisher: It's very, very efficient against small fires. But if the house is on fire, it's absurd to grab a fire extinguisher. Severe RLS is the house on fire, unfortunately, and many doctors don't get that.

It took me 2-3 years to get to a point where my RLS symptoms were under control most of the time. Once I got there, getting up at exactly the same time every day (when my RLS didn't wake me earlier) was one of the things that helped me control my insomnia, especially the inability to fall asleep in the evening.

ratfancy
Posts: 18
Joined: Sun Jul 19, 2009 5:43 pm
Location: Sarasota, FL

Re: Regular Sleep Schedule

Post by ratfancy »

Another point that most RLS people understand that RLS is not insomnia. People with insomnia struggle to get asleep and/or stay asleep. With RLS, a person might drift off to sleep in minutes (because soooo tired!) Then....up again, up again. That's not to say that some people don't have both insomnia and RLS, or sleep apnea and RLS, or anxiety disorder and RLS. But don't put everyone in the same pot.

I never have trouble getting to sleep, even after waking up. I'm not angonizing over any mental thing when I can't sleep. I don't have "squirrel brain". I just need to be walking around to relieve symptoms. Once my Tramadol kicks in, I fall asleep right away until the blood level sinks, or for some reason the RLS flares again.

ratfancy
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Re: Regular Sleep Schedule

Post by ratfancy »

Yes - the 90 minutes whenever (with alarm) seems to work to compensate for the really bad periods. Luckily, I'm retired so I can sleep anytime I feel I can.

Polar Bear
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Re: Regular Sleep Schedule

Post by Polar Bear »

I have RLS and Insomnia. When I wake up after about 90 minutes/2hours it is rarely because of RLS although it may come to visit while I am up and awake.

I wake up and I am indeed wide awake. I am unable to stay lying in bed, not because of rls, I just cannot stay lying in bed. My body (or brain) just needs to get up out of bed. If I don't have any RLS then I can sit and read.... but I am not ready to go to bed. After a few hours I may drift off to sleep and if I don't make it to bed in time I will fall asleep on the sofa. But I don't really have any warning, I wake up on the sofa to find I have been asleep for possibly 2 hours.
My best sleep time is after 5am.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Yankiwi
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Re: Regular Sleep Schedule

Post by Yankiwi »

When I wake up after about 90 minutes/2hours I have painful symptoms every time, or nearly every time. That means I have to get up for at least an hour, often two hours until it is "safe" for me to get back into bed. Repeat, repeat, repeat. From going to bed to getting up I often dedicate 10 hours (sometimes more) in search of sleep and get five. It's a bummer but that's the way it is and I am always hopeful that it will be better when I go to bed.

Frunobulax
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Re: Regular Sleep Schedule

Post by Frunobulax »

ratfancy wrote:I never have trouble getting to sleep, even after waking up. I'm not angonizing over any mental thing when I can't sleep. I don't have "squirrel brain". I just need to be walking around to relieve symptoms. Once my Tramadol kicks in, I fall asleep right away until the blood level sinks, or for some reason the RLS flares again.
Funny, exactly the opposite for me. I had trouble falling asleep 20 years before I had my first RLS symptoms. (But when I slept, I could sleep forever.) Then of course I had phases where my RLS was so bad that I would fall asleep whenever I sat down for 30 seconds, because I got hardly any sleep. Now, with RLS symptoms back under control, I have trouble falling asleep and staying asleep, as I sometimes wake up after 3-4 hours and can't get back to sleep.

My neurologist says it's common with RLS.

badnights
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Re: Regular Sleep Schedule

Post by badnights »

There is a strange hyperalertness associated wtih WED/RLS, and not just me saying this. Considering the amount of sleep an unmedicated WED/RLS patient gets in a night, they should be falling over walking the next day, but we don't, we are inexplicably unlikely to fall asleep compared to average joe who lost that much sleep the night before. Although it wasn't discussed much, this phenomenon was known and noted in the literature prior to the glutamate connection being confirmed by the Johns Hopkins crew, who speculated that this hyper-alertness might be due to the excess glutamate in our brains.

This, I think, is the same hyper-alertness that Betty describes:
I wake up and I am indeed wide awake. I am unable to stay lying in bed, not because of rls, I just cannot stay lying in bed. My body (or brain) just needs to get up out of bed. If I don't have any RLS then I can sit and read.... but I am not ready to go to bed.
Even though you don't feel overt sensory or urge-to-move symptoms, you're experiencing the hyper-alertness symptom.

Then there is the other hyper-alertness - the one caused by opioid medications. Equally frustrating, because the medication that solves the sensory and urge-to-move issues that were preventing sleep actually itself prevents sleep.

I am so messed up from years on medications that it's hard to tell what's what anymore but I fully agree with ratfancy about falling asleep - I can fall asleep pretty much instantly - but I keep getting woken up, sometimes only seconds later, sometimes minutes. Sometimes it's the WED/RLS sensations that wake me up, but sometimes I just feel the wide-awakeness. (If I'm just wide awake but my body is insisting not to lie there anymore, I know the sensory symptoms are coming. )

I have to thank you ratfancy, for a good honest laugh,
Most "helpful" articles on RLS say to "maintain a regular sleep schedule". Are they joking? None of these writers have actually experienced RLS. That is the oxymoron. One can't. You can't sleep at night, even if you go to bed the same time every night. That is the definition of RLS. Duh.
I love that comment. That is EXACTLY how I feel. I don't laugh nearly enough these days, and I thank you for this one.

I also can relate to the experience of Frunobulax, because for short periods here and there I have felt that my WED/RLS was sort of controlled, and during those times, a regular wake-up time was helpful in keeping me sort of normal. But there is no way it is profitable to do that when the WED/RLS is in control. It would send you to an earlier grave, because at that point you're not getting enough nourishing/restorative sleep to keep your body in good repair, to move the by-products of metabolism out of the cell nuclei and whatever other stuff happens only during sleep. Depriving yourself of even more sleep at that point is, from my point of view, suicidal.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

legsbestill
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Location: Dublin Ireland

Re: Regular Sleep Schedule

Post by legsbestill »

Although I want to tear my hair out - or more precisely the hair of the person making the comment - when I read recommendations for 'sleep hygeine' as a management technique for rls, I have noticed that, when my symptoms are reasonably controlled, I have a window when I am most likely to get to sleep and get some sleep without symptoms disturbing me. If I miss the window the rls comes on more strongly (lack of sleep definitely exacerbates my symptoms) and I often don't get much sleep so I suppose to that extent there may be something in it for me.

badnights
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Re: Regular Sleep Schedule

Post by badnights »

when my symptoms are reasonably controlled, I have a window when I am most likely to get to sleep and get some sleep without symptoms disturbing me. If I miss the window the rls comes on more strongly (lack of sleep definitely exacerbates my symptoms) and I often don't get much sleep so I suppose to that extent there may be something in it for me.
I've noticed that too. That window. Miss it at your peril.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Yankiwi
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Location: West Coast, South Island, New Zealand

Re: Regular Sleep Schedule

Post by Yankiwi »

Technique for falling asleep quickly
My window for falling asleep was very small. I'd go to bed when my legs weren't hurting but if I didn't get to sleep quickly they would start up and I'd have to get up. Even now I get up at least twice a night and need to stay up for at least an hour until safe to go back to bed. I take codeine and ropinerole, kratom and medical marijuana are not available in New Zealand.

A few weeks ago in the middle of the night I came upon this method on line which, so far, has worked very well for me, even three or four times a night. The trick is reportedly used by the US army to help them fall asleep in situations that are less than peaceful, such as on battlefields.

Detailed in the book Relax and Win: Championship Performance, 1981, the technique is thought to have been developed by army chiefs to ensure soldiers didn’t make life-threatening mistakes due to exhaustion.
There are a lot of videos and websites showing this technique but they all have the same information except for the graphics.

Here’s how to do it:

Relax the muscles in your face, including tongue, jaw and the muscles around the eyes
Drop your shoulders as far down as they’ll go, followed by your upper and lower arm, one side at a time
Breathe out, relaxing your chest followed by your legs, starting from the thighs and working down
You should then spend 10 seconds trying to clear your mind before thinking about one of the three following images:

You’re lying in a canoe on a calm lake with nothing but a clear blue sky above you
You’re lying in a black velvet hammock in a pitch-black room
You say “don’t think, don’t think, don’t think” to yourself over and over for about 10 seconds.

At first I imagined myself lying in a canoe on a dark lake with a black starry sky above. Now I just need to go through the relaxation techniques and I'm asleep. I hope it works for others.

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