RLS related

For everything and anything else not covered in the other RLS/WED sections.
mikereyes001
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Joined: Wed Aug 14, 2013 5:15 pm

RLS related

Postby mikereyes001 » Wed May 03, 2017 4:43 pm

Hello. I am a 48 year old man. My RLS symptoms have been well controlled by Medications (Mirapex, Horizant) and I experience no pain or jerking at night. What I do get however, is extreme sleepiness all day long if I do not sleep until at least 9:30 or so. I go to bed early at 10:30 or 11:00. I've taken the meds for awhile, and do not have any side effects that I am aware of.

I've had several sleep studies over the years (and a daytime one) that were negative for any issues (i.e. sleep apnea, narcolepsy etc). The only thing I could see was that N3 (Deep sleep) was lower, about 15 minutes over the 6 hours. A sleep doctor prescribed an anti-depressant which seemed to help for a few days, but then stopped. I'm wondering if anyone else has heard of this type of thing? Thanks!

Rustsmith
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Re: RLS related

Postby Rustsmith » Wed May 03, 2017 5:05 pm

If you are not getting the proper amount and depth of sleep that your body needs, the daytime sleepiness may simply be your body telling you that it isn't getting what it needs. From your sleep studies, that may simply mean that you are not getting enough N3 sleep.

It would appear to me that the sleep doctor who prescribed the anti-depressant is not familiar with treating RLS because virtually of of the anti-depressants are RLS triggers. They probably helped for a short time until you got enough into your system to where your RLS was once again disrupting your sleep.

Since I don't know where you live, I can only suggest that you might want to look into the possibility of medical marijuana. Many of us who live where it is legal have found that MMJ helps us get more of the deeper levels of sleep. I use a small amount of an edible product that contains THC at bedtime. The edibles kick in after an hour or so, which is when I would start toward the deeper levels of sleep. By using a small amount, most of the effects wear off by the time I get up in the morning, so I don't have the stoned feeling when I get up. Due to the legal issues, I have to stop the MMJ when I travel and I can tell that I am not getting as much deep sleep while I am away. I should also add that I also take gabepentin (similar to Horizant). The gabapentin helps me fall asleep, but didn't help much with achieving the amount of deep sleep that I apparently need.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

ViewsAskew
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Re: RLS related

Postby ViewsAskew » Wed May 03, 2017 8:55 pm

To Steve's point, I was sleeping up to 14 hours a day at one point and still exhausted. I didn't realize how little deep sleep I was getting. Years of this caused quite a deficit.

It might be worth another study if it isn't recent. Or a second opinion.
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.

stjohnh
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Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: RLS related

Postby stjohnh » Thu May 04, 2017 12:33 am

I went through an experimentation period of trying to measure the amount of deep sleep I got and correlating it to how I felt the next day. After several months of trying different devices that supposedly measure deep sleep (fitbit and other motion detectors, devices that measure deep sleep based on the amount of sound a person makes, heartrate monitors, heartrate variability monitors, etc.) I found that ALL of them indicated I was getting much less deep sleep than normal, and I could not correlate the amount of deep sleep I was getting with how I felt the next day.

Refreshing sleep continues to never occur anymore for me. I have found that nightly doses of gabapentin and marijuana help me fall asleep and improve how I feel in the day (improved from always terrible to mostly just poor). This is a challenging illness in many ways.
Blessings,
Holland

ViewsAskew
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Re: RLS related

Postby ViewsAskew » Thu May 04, 2017 4:19 am

stjohnh wrote:
Refreshing sleep continues to never occur anymore for me. I have found that nightly doses of gabapentin and marijuana help me fall asleep and improve how I feel in the day (improved from always terrible to mostly just poor). This is a challenging illness in many ways.


Indeed it is!
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.

badnights
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Re: RLS related

Postby badnights » Thu May 04, 2017 9:31 am

You don't want to hear of how lucky I think you are :) so I'll leave that for last.

Your sleepiness could be because you need it - either from insufficient deep sleep as you've been discussing, or simply because you're still catching up (how long have you been on this regimen?). Or it could be a side effect of the Mirapex. Or of the Horizant, come to think of it.

So - - add more drugs to try to get more deep sleep? As we get older, we get less and less deep sleep. I forget the numbers but 15 min/6hr might be par for the course for people of a certain age. Not that more deep sleep is not desirable, though; it could be a real health benefit. How do you get it, though? Adding more medication is prone to add more side effects. If the sleepiness is a side effect to begin with, you';re entering an unpleasant spiral.

I would much rather have to sleep 11 hours a night- even with the loss of time for socializing, family, work, hobbies, etc. - than to sleep as I do, way less than I need, generally fragmented, often requiring 11 or more hours in bed or under my desk at work over the course of the day, and leaving me perennially exhausted with all the negatives consequences of that (no promotions, no ideas, no energy for hobbies, friends or family, breaking easily). So - speaking from the sleepless dark side where I live these days - status quo might be a good option.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Polar Bear
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Re: RLS related

Postby Polar Bear » Thu May 04, 2017 1:42 pm

badnights - ""The Sleepless Darkside "" what a wonderfully expressive phrase.
I love it, but am very sorry that I understand only too well what you mean !!
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

legsbestill
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Location: Dublin Ireland

Re: RLS related

Postby legsbestill » Thu May 04, 2017 5:44 pm

It is truly a blessing to be able to sleep without the awful fragmentation badnights speaks so eloquently (indeed movingly) of. However, feeling exhausted all the time - even if it occurs in spite of prolonged periods in bed - does in fact rob you of a lot of what makes life worth living. I totally get your frustration and misery, Mike. Sadly, I do not have any positive suggestions. I use cannabis, taken as an edible, and find it helpful up to a point - sometimes I will not get to sleep at all without it. However, even with it I find that I am tired all the time with no energy for anything. I have spent the evening flicking through the net and notice GHB mentioned frequently as a promoter of deep sleep (albeit with significant reservations). Has anybody tried this?

ViewsAskew
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Re: RLS related

Postby ViewsAskew » Thu May 04, 2017 10:01 pm

I have experienced the sleepless (completely) darkside, the jolting fragmented darkside, as well as sleeping relatively soundly for up to 14 hours.

They all can result in the same thing: being tired, my brain foggy, my mood gray, and movement lethargic. I honestly don't differentiate anymore. I am as frustrated when I appear to sleep well but feel like crap as when I sleep like crap and feel like crap. Crap is still crap!
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.

mikereyes001
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Joined: Wed Aug 14, 2013 5:15 pm

Re: RLS related

Postby mikereyes001 » Thu May 04, 2017 10:35 pm

Thank you all for the very helpful responses. I've had RLS for 7 years. The night pain symptoms weren't always controlled as well as they are now, so I can relate to what is being said (and be thankful to have a treatment). I can also totally understand the 'under the desk' comment, as I am often am lying down on the floor of my office or in my car during work hours. (Even with 11 hours and sleeping late).

The sleepiness doesn't feel like grogginess due to the meds, its a severe sleep deprivation feeling that even causes an achy feeling in my chest. If I lie down for 30 minutes and close my eyes, I feel better for several hours.

I might be willing to try marijuana in food form at some point. I wish whatever is in it was regulated and in pill form My wife has Fibromyaliga (we like to call ourselves the sickly couple). We heard GHB mentioned as very effective for sleep at an FM conference this past weekend. I would like to try it, but it isn't approved by the FDA due to abuse concerns.

When I explained the sleepiness to my Neurologist, he thought it was a separate condition than the RLS. Based on the feedback, it sounds like people can sleep through the night with RLS and still feel really tired all day long.

Maybe I'll talk to another doctor for another opinion. Thanks all for the great feedback! (and hang in there!)

legsbestill
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Location: Dublin Ireland

Re: RLS related

Postby legsbestill » Thu May 04, 2017 10:36 pm

Ann, I think that you and Beth and Polar Bear and Steve act as candles in the darkside to light it a little for the rest of us with your generous knowledge and empathy.

Rustsmith
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Re: RLS related

Postby Rustsmith » Thu May 04, 2017 11:39 pm

MIke, at one point I was so sleep deprived from RLS that I could not drive for more than about 30 minutes without the very real possibility of falling asleep at the wheel. If I pulled over and got a 10 minute nap, then I was good for another 30 minutes. There is a very real reason why the medical code for RLS is in the sleep issues category and not in movement disorders. Yes, there are other things that can cause sleep deprivation, but RLS is also a major contributor that many doctors do not recognize, probably because they cannot directly test for it like they can most of the others.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

ViewsAskew
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Re: RLS related

Postby ViewsAskew » Fri May 05, 2017 1:38 am

legsbestill wrote:Ann, I think that you and Beth and Polar Bear and Steve act as candles in the darkside to light it a little for the rest of us with your generous knowledge and empathy.


Image
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.

badnights
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Re: RLS related

Postby badnights » Fri May 05, 2017 9:08 am

thanks legs :oops: :)

Mike - I didn't think to mention this before, I don't know why; probably because another solution would be better - but you could also ask your doctor about taking one of the newer alerting medications (modafinil - marketed as Alertec, Provigil; and amodafinil marketed as Nuvigil).

I use modafinil once a day in the morning. I started it because although my symptoms were finally controlled (by hydromorph contin), and my inability to sleep more than 10 minutes at a time (with zopiclone), I was still unable to keep from lying down numerous times in the day or staring slack-jawed and blank-minded at my screen, I was just so desperately tired and dragged out, even when I thought I'd had a good night's sleep.

It works very subtly. It doesn't seem to have any effect on my ability to fall asleep if my body is allowing it and I choose to nap. But it removes that desperate need to sleep that had been consuming my day no matter what kind of sleep I had had.

I don't like this solution. It is not addressing the cause (which, for all I know, is other meds - or maybe it's real tired, I Can't tell the difference). And it seems impossible that there won't be a heavy price to pay at some point in my life. But no noted side effects so far.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

stjohnh
Posts: 324
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: RLS related

Postby stjohnh » Fri May 05, 2017 2:01 pm

ViewsAskew wrote:I have experienced the sleepless (completely) darkside, the jolting fragmented darkside, as well as sleeping relatively soundly for up to 14 hours.

They all can result in the same thing: being tired, my brain foggy, my mood gray, and movement lethargic. I honestly don't differentiate anymore. I am as frustrated when I appear to sleep well but feel like crap as when I sleep like crap and feel like crap. Crap is still crap!


My experience exactly.
Blessings,
Holland


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