An interesting article from the Journal of Clinical Sleep Medicine (Jan 24, 2023) doi.org/10.5664/jcsm.10440
I'm unable to access the full article but here's part of the abstract.
STUDY OBJECTIVES:Periodic limb movements during sleep (PLMS) are a frequent finding in restless legs syndrome (RLS), but their impact on sleep is still debated, as well the indication for treatment.
We systematically reviewed the available literature to describe which drug categories are effective in suppressing PLMS, assessing their efficacy through a meta-analysis, when this was possible.
RESULTS:Dopamine agonists like pramipexole and ropinirole resulted the most effective, followed by L-Dopa and other dopamine agonists. Alpha2delta ligands are moderately effective as well opioids, despite available data on these drugs are much more limited than those on dopaminergic agents. Valproate and carbamazepine did not show a significant effect on PLMS. Clonazepam showed contradictory results. Perampanel and dypiridamole showed promising but still insufficient data. The same applies to iron supplementation.
CONCLUSIONS:Dopaminergic agents are the most powerful suppressors of PLMS. However, most therapeutic trials in RLS do not report objective polysomnographic findings, there’s a lack of uniformity in presenting results on PLMS. Longitudinal polysomnographic interventional studies, using well-defined and unanimous scoring criteria and endpoints on PLMS are needed.
That's correct, both conditions are treated using the same medications. However, this study is looking specifically at which category of medication is superior in suppressing limb movements while asleep.
I read the article as well. I agree that Dopaminergic drugs are probably most effective but, again, they omit to mention the high rate of augmentation and that these drugs are no longer first line treatment. I tried to find the lead researcher's email, which often appears on the first page,to raise this point.
I agree. I find this paper really disappointing. Considering the huge inter-individual variability in response, this paper is rather useless for pwRLS who have to self-manage.
This explains why my RLS is reasonably well controlled in the daytime with gabepentin, but my sleep is still being disrupted by PLMS waking me, sometimes hourly. I am continually wearing out bed sheets, and I recently wore out my knee pillow.
I had partial success with ropinirole.While it worked at night I found RLS returning the next afternoon. My doctor prescribed a Neupro 2mg. patch which keeps me free of RLS all day.
Thanks for sharing that article. Without good longitudinal polysomnogram , or actigraph data I'm not sure how useful it is. Someone really needs to study this as I think it's underappreciated. Also, I would like to see some data on treating PLMA--that is, PLM while awake, which is what I have.
Lastly, has anyone found a relatively inexpensive actigraph or similar device for sale online so we can see what is actually happening while we sleep?
I too have PLMs while awake but they tend to only be present in the evening or occasionally in the daytime when I lay down. The medication i take at nighttime for PLMD tends to cover the evening PLMs of wakefulness. I use medication because my PLMD results in non restorative sleep, not because the limb movements on their own are bothersome.
My small dose of evening methadone (2.5 mg) completely eliminates the awake PLMs I would otherwise be having as I try to sleep. I wonder if that means my PLMs during sleep are also suppressed? My sleep does not feel very restorative, so I wonder?? That's why I would love to have a way of monitoring sleep PLMs at home... it is practically impossible for me to get a polysomnogram--my insurance company is putting up a wall.
I expect that the methadone is also suppressing your PLMS if it's suppressing your evening PLMA.
I took pramipexole some years ago and it controlled my PLMs well (prior to augmentation). To begin with, i had refreshing sleep. However, some time into taking pramipexole, i had a(nother) sleep study as i felt that my sleep was not restorative. Strangely, the sleep study showed that i had negligible limb movements. (I can't recall if the data showed any micro-arousals). I have never been able to adequately explain this.
I regularly have 300-400 plms/twitches during an average night (through video taping and watching at 5x speed) and approx. 100 arousals and 40-60 awakenings. I recently had a sleep study - which I taped - and they diagnosed me with mild PLMD (27 with no PLMD related arousals) but 44 awakenings and 84 “unspecified” arousals on top of 23 others. They watch their video at 2x speed. In reviewing my tape, I had 487 plms/twitches over 4.5 hrs and at least 100 arousals I.e. where I turn over, look like I’ve been disrupted in some way. I spent 65% of time in Stage 2 sleep, no deep sleep and a 51% sleep efficiency. Every measure was “off”. Still, sleep doctor says everything looked good, no concerns. This is almost exactly the same scenario as my previous sleep study.
Sleep medicine, in the US at least, is almost useless when it comes to diagnosing sleep disorders outside of anything obvious. They are biased towards Sleep Apnea for various reasons I.e. money. This doctor even said that the parameters for PLMD/S have changed regularly and are heavily dependent of the technician and physician e.g.) I insisted on actigraphy on my abdomen - where many of my movements can be seen - but they failed to provide it the night of the study. The tape speed is also a huge issue as many of my movements are slight and over 2-3 seconds. As they watched at only 2x speed, they completely missed hundreds of them.
But now, trying to convince them otherwise is almost impossible. My next appointment I’m taking in the my tape from that PSG at 5 and 10x and look forward to seeing her reaction as I look like I’m filled with popping corn. Aug.
It sounds like you have some very disordered sleep going on there Ircam. I agree that sleep studies only show so much, and that sleep specialists are only operating within rigidly defined parameters...which don't always reflect our experience. Awakenings/arousals seem to be key in understanding sleep quality as they aren't always positively associated with limb movements. I had a colleague who experienced severely non-restorative sleep. When he underwent a sleep study it revealed scores of micro-arousals throughout the night (That was the only thing that the sleep study uncovered. He didn't have a recognised sleep disorder as such. So much still to know in this field....
I used to have PLMW also. Mine began when I rapidly discontinued an antidepressant. I eventually followed the only recommended tx for antidepressant discontinuation disorder - going back on same antidepressant and discontinuing slowly. It seems to have helped a little but continue to have PLMD during sleep and hypersomnia.
I too want to find an actigraph to monitor it. I use a Wellue O2 Ring every night, but it only registers my PLMD when it appears in my hand (you can see it clearly in OSCAR). Unfortunately, my big toe is too big to wear it on my foot.... ;-/
Cutting out all coffee (caff or decaf) has helped probably cut it by 75% in my hands. There a phenols in coffee that are potential problems because they block the body's use of its natural opioids.
I contacted Wellue to see if the baby monitor could be repurposed for monitoring motion (it records movement every second) on an adult foot. I have their O2 Ring. If it is the same tech, then it would be very sensitive.
I’m interested if you found out anything re: baby monitor. The O2 Ring is surprisingly sensitive as far as picking up finger, hand, and arm movements (on the side it’s on) but as you say, 1 second interval measurements would be better than 4 seconds. The next challenge - once the movements are recorded accurately - is convincing the doctor that the data is worth anything in terms of treatment course/progress. My doctor was uninterested at the most though it shows that I have 2-5 movements/minute - many more than I realized.
I didn't pursue it... life got in the way. I still use the O2 ring as a backup for getting on my back in the night and having OAs that cause a drop of SpO2. It comes in handy while camping and not using my BiPAP.
Thanks for sharing that article. I hadn’t seen that one before. I have PLMD and have been using Clonazepam, opioids, sedatives and/or Gabapentinoids for years in various combinations. The best combo I found was Clonazepam + opioid + a DA (ropinorole). Now that the politics of the opioid epidemic are taking over physician’s brains like the fungus in “The Last of Us”, that combo is increasingly difficult, if not impossible, to replicate. I’m now on Neupro and a much lower dosa of Clonazepam and while the # of PLMS have decreased substantially with Neupro, the impact on my Hypersomnia has been moderate at best. It’s my belief that even though observable movements are reduced, there is still much going on to disrupt sleep internally. Movements are just a symptom and may not correlate well with the brain/sleep disruption that caused the plms.
I’m currently seeking a physician in the US who will prioritize my experience and not be swayed by the politics of the day when it comes to patient care.
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Medscape article on RLS
Medications and food to avoid, applies to most of us who has RLS. This is taken from the www.rlshelp.org website..
What are the keywords I need to use with my GP?
Is my diagnosis of Periodic Limb Movement Disorder Correct?
This is for those of us who have sleep problems.
