As a 50 year veteran of RLS, I would like to offer some further observations (I posted once before) which I hope might be helpful to some people.
I suffer from the violent-limb-movement variant of RLS, so my experiences may or may not be helpful to those with the creepy-crawly variant.
1. One thing I have noticed is that for me there are two types of RLS: settling-down RLS and what I call partial-waking RLS.
For me, settling-down RLS has always been by far the worst. It happens as I think we all know, when the mind becomes quieter. In the early days it happens just as we are falling asleep, and later on as the condition progresses it happens anytime we are not engaged mentally. And we have all kinds of strategies to deal with it including drugs.
Partial-waking RLS seems to be something a bit different. It is very scary because you wake up at 2 am with symptoms and you think, “Oh my God, I’ve had only three hours sleep and here it comes again.“ However, what I discovered was that in my case this is usually because of some noise in my environment that has disturbed my sleep without actually waking me, and then the limbs start to thrash around. We were living in a downstairs apartment 20 years ago, and I realised I was getting symptoms every time the people above us made the floorboards creak when they went to the toilet in the night. I figured it out because once I had woken up with my limbs going wild, I would hear the sound of their toilet flushing. Then I discovered it was trucks going past in the street at night, and other kinds of night noises that wouldn’t normally wake me up completely. What I also discovered was that this kind of partial-waking RLS is easier to deal with, at least for me. I could roll out of bed and do a few yoga exercises and be back to sleep in a few minutes. So what I learned was not to panic about partial-waking RLS and go rushing off to the neurologist for a stronger prescription. It seems to be a more benign type, in my case at least. The main moral of the story for me, of course, is to try and find a quiet place to live.
In this respect, as my RLS has gotten progressively worse I have found Clonazepam very helpful. It seems to stop me entering this partial-waking state. It keeps me fully asleep when trucks go by. So while some people speak against Clonazepam, for me it has been great. I know it is supposed to be habit-forming, but I’ve been on the same dose for about 10 years and I’m not getting any urges to take more. Horses for courses, I guess.
2. What I’ve discovered also is that in my case the severity of RLS seems to have a periodicity. It’ll get worse for two or three weeks, and then get relatively better again for maybe six weeks. Again, in the old days I would panic, thinking that my RLS has gotten permanently worse, and rush off to the neurologist for a stronger prescription. Now, however, I try to live through the worst periods and enjoy the better periods. In this way, I don’t have to increase my drugs. If I have a real bad night I might take a full dose of gabapentin and maybe an extra half dose of Pramipexole, but I try to avoid it. So periodicity of symptoms was another helpful discovery.
3. The third little discovery which has been very helpful has been that my variant of RLS is a lot easier if I just relax into it. Irrespective of whatever is the actual neurophysiology of the condition, how I experience my RLS is as some kind of release of tension in the brain or muscles or somewhere. So if I’m able to get into a situation where I can’t hurt myself, like on a mattress on the floor, I find I can just “kind of“ “enjoy” the sense of release as my body throws itself around. I’m not saying it’s ever actually fun, it’s very tedious, but this way, I find that the episode may burn itself out faster than if I was fighting my body. Sometimes it will be over in as short as half an hour, sometimes an hour. It “feels like” there is excessive electricity in the nervous system which has to be allowed out. That’s just how it feels.
I hope these little discoveries of mine may be helpful to someone else. I appreciate that everyone’s situation is very different.
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Wairahi
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It's good that you've observed that people's experience of RLS/PLMD can be different.
The 2 are essentially the same. RLS being at one point on the spectrum, PLMD on another.
Many sufferers like myself tend to experience the involuntary movements more than the creep crawly feelings.
80 to 90% of RLS sufferers also suffer PLMD so this is not surprising.
Symptoms are most noticeable when lying still and when dopamine levels are low. Hence it is very common to experience symptoms when trying to fall asleep.
After falling asleep we quickly fall into 4 stages of deep sleep. Slow wave sleep being the deepest. It's very difficult to wake somebody in deep sleep. We then slowly rise slowly out of the four stages and usually then experience a short period of "paradoxical" sleep. We then fall into deep sleep again.
This cycle takes about 90 minutes.
If symptoms occur during paradoxical sleep, they can wake us up.
PLMD usually occurs during deep sleep, hence many sufferers aren't aware of it, as it doesn't wake them.
I believe some sufferers do experience periodicity in their symptoms.
I'm not entirely sure that taking a "full" dose of gabapentin and an "extra" dose of pramipexole is a very good idea.
Taking a "full" dose implies to me that sometimes you take less than this.
It appears that you are varying the dose and it is possible that this is contributing to the periodicity. It's just a thought.
Another thought is that if you are taking pramipexole even at a low dose, it may be this causing you problems.
It was only when I suffered augmentation due to pramipexole that I started involuntary movements when awake.
I'm really pleased you've observed that "accepting" our symptoms is in some respects better than not. It does not, as you say, necessarily make the symptoms less, but it can promote a more positive experience of them.
When i've written of this before people often scoff at the idea. They misinterpret this as suggestions that RLS is "all in the mind" or "not real". They write that you have to "fight" it. I'm sorry they can't see the value of acceptance.
Hi, thank you for that, very interesting to hear and I share most of your views, including not panicking, experiencing and observing rather than resisting. What you describe as two types of RLS are both familiar but for me seem to be the same thing but at different times. Personally I think I wake because of the excessive PLMD but that tends to subside after 4am and I normally get a few decent hours before 8. I do experience some periodicity but that ranges between 30 minutes and 60 which is probably related to the 90 minute "standard" sleep cycle, i.e. I get woken up as I come out of the very deep sleep. Thankfully I don't have to work which means the stress of having to be up and out by a certain time doesn't apply.
In response to your question - I take 300 mg of gabapentin at bedtime, along with 1 mg ropinerole normally. Occasionally, like last night, I can't go to sleep because the legs are not still, so I added 1/2 of another ropinerole pill. They probably shouldn't be split, but it lets the medicine get to work immediately, so I'll say that it works for me. It has been prescribed for me to take gabapentin 24 hrs. a day, but I have never been able or wanted to do that.
Sorry for the delayed response. It's great that the combination works for you.
It's OK to split an immediate release tablet of ropinirole, if you split it in half, you will get half the dose. If the tablets you get are scored across the centre of one side, that confirms it's OK to split it.
If you have the extended release tablets, it is not recommended to split these as it may destroy the release mechanism. In some cases this can lead to the drug being released too quickly.
It's also OK to take an extra half tablet if this is within your prescription. However, if you're only prescribed 1mg, then it's not advisable to exceed that. It is unlikely to cause any immediate problem but may, in the longer term, increase your risk of augmentation.
You're only taking 300mg of gabapentin, which is quite a low dose.
I'm not sure what you mean by taking it 24 hours a day, I think you may mean taking it 3 times a day, morning, midday and night. That is quite normal for nerve pain or epilepsy (the other uses of gabapentin). However, you're right, it only needs to be taken once a day, or at most twice for RLS.
If you are prescribed gabapentin 300mg 3 times a day, then you could take 900mg once a day, at night. This is something you might think about since your RLS is not fully under control. It might eliminate the need to take extra ropinirole.
Bear in mind that you may not need 900mg, 600mg may be enough.
You do need to discuss this with your doctor. These are potent drugs and it's advisable to stick to the prescribed doses.
Thank you SO much Wairahi. I got a lot out of what you shared with us here.
I too have been a victim of RLS for many years and come to the conclusion that the only way to beat it is to join it.Thus when, what you call the variant, raises his ugly head I say, “hello, give me what you’ve got, you will never beat me.”
Our stories are very much the same but I have never heard my condition called a variant of RLS. Is that your rendition of what you are experiencing or have you discovered this in some hidden missive somewhere? It is new to me and I would like to know where I can hear more.
Currently I am experiencing leg plus trunk vibrations that my doctor hasn’t connected with RLS but after reading your input I wonder if that is exactly what I am experiencing. He put me on Gabapentin and for three and a half months I was a new person, looking forward to summer, planning a road trip, sleeping 8 hours a night, RLS gone and mood elevated to the moon. Then over night it came crashing down. Gabapentin took all his marbles and walked out.
I am 85 years old and physically in excellent condition and still have things to do and places to see. Until I was prescribed the Gabapentin and realized I still had life in me I was on the downward spiral.
Thanks for your note. It's very interesting to me and I hope I can offer some useful suggestions.
1. It is just little old me who has started using the word "variant", although others here have tended to agree with me that there seem to be two main variants, Variant A, uncontrollable violent jerks and Variant B, creepy-crawly and/or electric and/or pins-and-needles sensations accompanied by an urge to move the limbs. And of course many people have combinations of both, although I have never had Variant B.
2. Manerva has written that Variant A might also be called PLMW, Periodic Limb Movements while Awake.
3. Trunk vibrations are very much a part of RLS Variant A, in my experience, as are head movements and arm movements. The trick as always is to give into them, let them go, "enjoy" them, and they'll be finished sooner, or that's my personal experience. Manerva believes that these non-leg movements are a result of augmentation but I had them before I started taking DA's (dopamine agonists) (I take Pramipexole) so it could be both, in my experience.
4. As I wrote before, people are very dismissive of Pramipexole (one of the DA's) but I have had 10 great years with it and I am still on a moderate dose (details below). So at your age, 85, if you haven't tried it I personally for what it's worth would be willing to give it a try. If you've been on it before and gone off it, I would tend to try it again. As I mentioned, the trick I learned is to limit my dosage, not to increase it even when I'm getting augmentation, and I find that after a couple of weeks the augmentation settles down. I'm on 250mcg.
(If I start to get persistent symptoms one day and I have something important happening the next morning which I have to be alert for, like a Zoom conference or whatever, then I take an extra 125mcg just as a special treat. But I try to avoid that.)
5. I had seven good years with Pramipexole from 2011 to 2018 but I increased the doseage too fast as augmentation set in and got up to about 1500mcg so I had to come off it. I went cold turkey (which Manerva says is very dangerous but it worked for me). It was a wild ride for a couple of weeks and I was in danger of breaking a limb or my head. After that I managed with Gabapentin and Clonazepam for about a year before I started to allow myself gradually increasing doses of Pramipexole, and so far I have been doing very well and holding steady at the dosages I just mentioned.
6. I had a very good neurologist when I was living in the States and he said not to worry, I still have a lot of options open to me in terms of increased dosages of Gabapentin-like and Clonazepam-like drugs and their time-release variants, and also opiate-type things. But so far I haven't needed to explore those options.
7. Manerva made a very interesting comment the other day, that some people experience that even if they have bad RLS they are still alert the next day. Back in the 1990's before my RLS got totally intolerable I had the same experience, particularly when I just gave into it as you mention. This suggests to me again what I have often suspected, which is that RLS is a kind of exaggerated (and pathological, let's be clear) manifestation of the overall release of tension and repair of accumulated chemical imbalances which is the function of sleep. Like a dog twitching in its sleep, some repair is going on. The fact that it tends to come on as we relax might support this (unschooled) conjecture. So yes, not fighting it, as we've experienced, seems to be a good strategy.
8. Just out of interest (and feel free to pillory me for indulging in esoteric speculation) the general understanding of Yoga is that there is an "energy channel" (whatever that means) which runs up the spine or near the spine. It's called the Kundalini. Supposedly when it starts to operate as the Yogi advances in his/her practice it feels like 240,000 volts running up your spine and bursts in your brain as unimaginable bliss. (I'm just reporting what I'm told here, not proselytising.) Evidently when Kundalini is getting started it can be like a loose fire hose, spraying "electricity" or "energy" (whatever that means) in all directions, and can produce symptoms just like RLS, or so they say. So IF all of that were true (and this is only idle and unschooled speculation) then it would not be surprising that along with the uncomfortable symptoms would go a certain amount of clear-headedness the next day. In any case it might help one's emotional well-being to look at it that way, as some kind of developmental process. It would also possibly explain why Yoga stretches seem so effective with RLS (they worked for me for the first 30 years of RLS) because they are designed (so they say) in part to allow the Kundalini to flow smoothly. Fortunately I live in New Zealand so you can't shoot me for sullying these pages with idle esoteric conjecture.
Cheers, Battleground, and best of luck with your experimentation.
Wairahi
P.S. Don't give up completely on Gabapentin, you might find it will work again for another few months when you come back to it, or you might try the time-release version. The important thing with RLS is to find a sympathetic and educated doctor, so keep changing doctors until you do. There are a lot of time-servers out there in doctor-land.
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