I will keep this short, so if any one wants to ask me more about this they can do so. I posted some time ago about approaching RLS from the viewpoint of fixing my sleep problems first, not the RLS. And that is what I have been doing. After more than 6 years of having great difficulty sleeping, with RLS becoming often very bad, I seem to have gotten a really good hold on my sleeping disorder by concentrating on that, AND at the same time my RLS has just settled itself down to being almost non-existent. (Just a tiny flutter here and there.) I am now sleeping so well - deeply and with dream cycles, and if I do wake to use the bathroom, I can go back to sleep easily. I can get 8 hours of good, refreshing sleep.
In fact, on a recent trip 6 hours out of my time zone, I thought jetlag would really mess with my sleep, as it always had in the past. But I had very little jetlag and fell into the new time zone easily. Same with my return (except for one small glitch when I ran out of one very important supplement.)
So, I will reiterate that yes, RLS can cause problems with sleep, but attempting to fix the RLS may not be enough. One probably needs to fix the glands that are involved with the sleep disorder, as well. That is what I have been working on. With great success!
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And, I do not mean to say that RLS does not exist or should not be taken seriously. I have had it since I was a child and I have a son who also has it. It was never quite so bad throughout my life as it has been in the last few years; it was much easier to deal with and at times hardly a bother. BUT, it seems as my sleep disorder became worse and worse (due to, as I have mentioned, trauma from a family tragedy) my RLS got worse and worse.
I tried fixing my RLS, with some or short lived or unpredictable success that sometimes worked, sometimes not. But that is when I decided to approach things from the other way around. And I am glad I did, because it is consistently working and I am enjoying greatly being able to sleep again.
Hi lauraflora..Can you please share with us your secret? I for one, currently get maybe 2-3 hours of non-quality sleep a night and those few hours are broken down into 30-45 minute intervals. I am barely holding on as this disorder gets progressively worse
Lbf, that is awful. Are you still taking dopamine agonists (ropinerole) for your RLS? It sounds like you might need to change your regime. I really feel for you and hope you can find a more successful treatment.
Hi involuntarydancer, how are you? Yes, you are correct. I am still currently taking 4 mg a day of ropinirole and I do need to change my regime. I contacted The RLS Foundation (rls.org) with whom I have been a long-standing member and spoke with Hillary Hurst who recommended I see Dr. Christopher Earley at John Hopkins in Baltimore, MD. He is located at the John Hopkins RLS Quality Care Center, 5501 Hopkins Bayview Circle, Baltimore, MD 21224 (410-550-0571/0574.) His contact person is Robin Fishel at rfishel@jhmi.edu. The good Dr. just recently changed his policy however according to the RLS Foundation, he now "only sees MD residents." Great for me...unfortunate for everybody else who doesn't live in the state of MD. Once I get back from an appointment with Dr. Earley I will share everything he had to say. Wishing the very best to all of us!!!
That would be fantastic lbf. When things were really bad for me last year, I considered seeing if I could get an appointment with Dr. Early although it would be a particularly long trip from Ireland! Fortunately, with some advice from the indefatigable and saintly Dr. Buchfuhrer and with the help of this forum and the forum attached to the RLS foundation (of which I too am a member), I managed to sort myself out, probably as well as could be expected.
It would be a compensation to hear what he advises you though I fear his first action will be to take you off ropinerole which is likely to be an ordeal. Hopefully it will ultimately lead to a beneficial regime and much better sleep for you.
I came across some of the info in various other books or websites, but the one that spelled it out the absolute best is Julia Ross's book, the Mood Cure. Chapter 12 is the one on sleep.
In a nutshell, I followed what she recommended on p. 236, in taking 5-HTP, Tryptophan, and GABA in the late afternoon and middle of the evening (she recommends starting with 50 to 100 of 5-HTP to start out; and or 500 to 1000 of Tryptophan, and working up as needed, if needed. Gaba, she recommends starting with 100 and working up as needed.) The reason for taking it in the afternoon/evening is to start building up the serotonin supply before bedtime. Then take again at bed time. This is to stop the sleep-destroying "second-wind" that many people get around 10 pm - myself absolutely! Or being a 'night-owl'. The other thing I have been using is glycine - which makes one gently sleepy. She recommends this - 500 -2000 mg - as one of the things for people with RLS. (p.249 in her book.)
Another product I found, at Walmart and on Amazon is 'Sleep' a powder that you stir into water made by youtheory. It contains several of the various above supplements, which are, by the way, amino acids. I found it works in about 20 minutes.
This all works very well, but when I first started out, I found that some nights I still woke up suddenly wide awake about 2 am (which I had been having happen for several years before.) For this, Dr. Ross recommends (and I have read this on other websites as well) Seriphos for over-active adrenal glands that are inappropriately turning on in the night when they should be at their lowest, so you can sleep. Seriphos is phosphorylated serine (another amino acid) that helps the pituitary not send messages to the adrenals to produce cortisol during the night. (This is part of the HPA dysfunction - hypothalamus pituitary adrenal glands - read about that elsewhere.)
So, I have been taking 3 just before bed (she recommends a different schedule based on when you wake up in the night. ) I read this on a different website, and for me it worked better.
All of these things may sound like a lot to take, but I read that after some time - a month, maybe more, one can cut down as the sleep cycle gets more and more back to normal. I found that after I returned from my 2 week holiday in Britain, I was very short on Seriphos, so I rationed what I had left. Two nights, I had (not as bad as before) wakefulness and RLS starting again. But the other things still made it easy to get to sleep, just couldn't quite stop the waking up in the middle of the night. Since I got the new bottle of Seriphos, everything is back to great sleep and only a little flutter of RLS. I just need to turn over and it seems to go away. (You can get Seriphos on Amazon.)
I recommend getting her book even if only for chapter 12. It goes into detail and describes various scenarios of sleep problems, so you can understand and find your own problems and what to do about them. It is on - where else? - Amazon. As I mentioned, I have read of these amino acids (even took 5-HTP a long time ago tho not the way she mentions) in other books or websites, but Julia Ross's book explains it the best and has what (for me anyway) is the best way to use them.
But don't just take what I take - find yourself in the book and go from there.
It sounds like you might be spending a fortune--not that sleep isn't worth it. Also, I thought Tryptophan was taken off the market years ago, and was no longer available or was that just L- tryptophan? Great and interesting advice though. Thank you.
Do you or have you ever taken a dopamine agonist when you were treating the RLS before you got all this valuable and apparently workable info? How long have you been on this nightly regimen?
Hi Laura I wanted to mention that in another post on here someone said that melatonin and 5htp are dopamine antagonists and can antagonize RLS, especially when taken at night. I have been taking iron before bed and it has enabled me to stop using codeine and stop the RLS.
We are all different, which is why I have urged people to not just use what I have been using, but read about it and do their own research and decide for themselves. I have read that your body uses serotonin to make melatonin, tho manufactured melatonin may have a bit of a different affect than what your body produces. I never found melatonin to help me with sleep - I would feel sleepy for about 15 minutes and that was it. It did not make my RLS act up, and the 5-HTP certainly does not as I have been taking it every night now for some time. The 5-HTP helps me sleep.
I have been using the iron as well, every other night. Tho while on holiday, I was rather sporadic with it. It seems that since many doctors do not have a real grasp on helping people with RLS, we have to do our own research and experimentation. While I have insurance, I do not have insurance that covers alternative doctors, alas, so I have to figure most of this out for myself. But then, many people do the same.
Recently read Michael Mosley's 'Clever Guts Diet'. He recommends a teaspoonful of potato starch (available from health food shops or online) in a small glass of milk last thing. Since trying it, my sleep has gone from an average (according to my trusty Fitbit) of 1hr 50 mins a night to 7hrs -ish. More or less instantaneously. Have had a couple of relatively bad nights, but maybe once a week or less.
What No Taurine or L-Theanine? Lots of amino acid supplement "cures" out there. Here's a "food cure" for insomnia. Just remember nothing is a "one and done" - Oh, that doesn't work - after a day or two. wholelifestylenutrition.com...
...and an interesting supplement. I haven't tried it yet but it looks promising. I have no affiliation with either websites or products, just passing it along.
As an insulin dependent diabetic, fibro and RLS sufferer I am a bit concerned about the wholelifestyle nutrition article. Saying that intake of sugar will not cause sugar levels to spike is dangerous and misleading all sugars refined, unrefined, fructose and carbs that convert to sugar will cause glucose blood levels to spike. I know because I use a blood glucose monitoring machine and adjust insulin intake according to food intake and amount of physical activity. Chinese food being the worst to manage but unfortunately I love it!
Also the liver naturally produces sugar and starts releasing it into the bloodstream between four and five am. This is the body prepping itself for dawn and physical activity. Hence blood glucose levels can be slightly elevated in the morning without having eaten.
I have used taurine and theanine, but they did not do enough for me to actually get and stay asleep. And I do know that not everything works always, so I appreciate knowing about some other things/methods/supplements. Perhaps rotating them would be a good idea. It happens with medications, so it can happen with supplements as well. And it just goes to show how many people have had sleep disturbances and have come up with things to help. Thanks!
I just found and joined this group. Are you still free of restless leg syndrome? I ordered the book you recommended because I am desperate for a good night's sleep, free from RLS. Thanks
Perhaps you are meaning the book by Julia Ross, The Mood Cure. It has been very helpful to me, altho at times I still have had RLS and sleep issues. I tend to feel that since people who do NOT have RLS can have problems sleeping, people who DO have RLS can also have separate sleep problems, that are not brought on by RLS, in addition to RLS one ones. Meaning 2 different sleep problems. I had times when I was experiencing no RLS, and still had problems sleeping. I hope this makes sense to you. However, I have found Ms. Ross's recommendations and her explanations on the chemistry of sleep problems, esp . GABA, and 5 HTP, with a bit of melatonin thrown in, to be mostly helpful. The GABA seems to be the most important, for me, as without it the 5HTP and melatonin do not help at all. I even had this combination to be helpful when traveling to the UK from Chicago, for jet lag, which I used to get so very badly before.(We traveled there often as my husband is Scottish and has family there.) I take more GABA than she mentioned, esp. when I wake about 4 am. (1000mg.)
You should read the article on drprevent.com/restless-legs/, as it also explains the 2 neurotransmitter systems in the brain that, when not working properly, cause RLS and sleep issues. It talks about GABAminergic, and DOPAminergic systems, and how to use some natural things to help. I added in to my GABA, 5 HTP and melatonin, the DOPA mucuna prurienz by Source Naturals, and it too has been helpful. (Altho he recommends taurine instead of GABA, but that does not work for me.)
But, also look up HPA axis dysfunction - hypothalamus, pituitary, adrenal - which I am sure is my problem (yes, I know I am self-diagnosing, or at least suspecting, but it fits. Besides it is my body and I do not want to go the drug route.) This system responds to GABA, which is what works the best for me, turning off RLS and bringing on sleep. I have to take it before bed and then when I wake up, which I usually do. It is not a once before bed and then sleep thru the night thing. There is an article on Lifestyle Matrix.com/a-scientific-turn-of-mind Christopher Mote is the Dr/author.
There is other info out there on these subjects, by other authors and researchers. I hope this is not too complicated for you, but it is a complicated subject. I came across info linking HPA to RLS, which makes sense to me, as they are both problems that throw off the circadian rhythm.
I hope this is helpful and not overwhelming. Let me know if you have any other questions.
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Family not understanding! 
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