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Hey there sttebr, the med we chose has been around a longtime but is more recently been used for RLS, generally its used for peripheral neuropathy- gabapentin. For me it seems to be reducing all three and has minimal side effects for me. After a couple of weeks of tweaking the dosage and administration schedule its like night and day. I still see some possible signs of PLMD in my sleep data, though greatly reduced. My wave pattern is smoooooothing out nicely. Personally I don't have any experience with Mirapex.
The dosage and administration schedule for gabapentin in my case is based on a NIH study treating neuropathic pain. I'm currently doing 600mg a day on a schedule of 6am 100mg, 12pm 100mg, 6pm 200mg, 10pm 200mg = 600mg. Might be worth running it by your Doc to see what he thinks.
(06-05-2023, 08:19 AM)sttebr Wrote: Thanks for the info on Torena. I have a pretty simple Android phone which may not have all the required features, but if it will work I'm going to give Torena a try. If not, I'll look around eBay some. Night Shift and Night Balance devices get good reviews, but $400 -$500+ is pretty crazy for what it does I think.
Thanks again.
Google:
CONTEC sleeping position trainer SLP10 Snore Stop Snoring Auxiliary Sleeping Aid
$14.95 !
“Men fight for liberty and win it with hard knocks. Their children, brought up easy, let it slip away again, poor fools. And their grandchildren are once more slaves.” - DH Lawrence
CONTEC sleeping position trainer SLP10 Snore Stop Snoring Auxiliary Sleeping Aid
$14.95 !
Thanks again for the information.
I found an older post by the developer of the Torena app. you might find interesting if you haven't already read it. I wasn't sure how to link it here, but his username is TorenaAndroid if you want to search for it on the forum. I downloaded the app and plan to start using it as soon as I get a belt to hold my phone. I think it will be exactly what I want, but if not I'll look into the CONTEC device.
I have just started on a low dose of Gabapentin to hopefully help with my PLMD which I believe is the reason for much of my daily fatigue, since my AHI is usually in the 1-3 range.
I'll probably titrate up some from where I am now, but I was curious if you are still getting relief from your PLMD at the 600mg daily.
I've read on an RLS site that it helps, but that in several cases they had to get up to 1200-1800mg's and still had symptoms, although reduced. Have you had to increase your dosage?
I ended up getting a Sleepon Go2sleep SE sleep monitor that tracks movements via an accelerometer, (along with, heart rate, o2 etc) and discovered the gabapentin wasn't really doing much for the PLM other than consolidating it into distinct clusters. I got as high as 1000mg before backing off to 100mg 4 x a day to manage my peripheral neuropathy and soften the RLS a bit. It helped the PLMD a little but not enough to justify continuing such a high dose. Just coming off trialing another med I'd rather not list because it hasn't helped much either other than reducing intensity and amplitude, still getting highly fragmented sleep. About to titrate off and ask the Neurologist where we go from here.
Lets stay in touch as we try different things and let each other know what works.
P.S. There is another thread that has the output of the Go2Sleep SE attached here - https://www.apneaboard.com/forums/Thread-CPAP-indicators-of-PLMD-O2-Ring There is also another one or two but cant find them at the moment. The nice thing about the device is it takes the guess work out of whether the meds are working or not.
Thanks for your reply and sorry to hear the gabapentin didn't help. Be careful if you plan on trying any of the dopamine agonist drugs. I've heard they do help initially, but eventually most people develop augmentation and have to go thru a difficult withdrawal process.
I'm trying gabapentin based on the updated Mayo Clinic RLS algorithm and my GP's recommendation, but I don't have much hope it will help. I've tried some of the supplements like magnesium and zinc, stopped caffeine, sugars, and alcohol, get regular aerobic exercise and have my sleep apnea generally under control with CPAP, but nothing so far has made any difference in my PLMD or daytime fatigue. I'm really not sure where to go from here except the DA drugs, but I'm not going to go down that road. Since there hasn't been a defined cause found for RLS / PLMD so far, it seems all any of the prescribed drugs do is possibly control the symptoms for a while, but at the risk of making them worse.
I have been wearing a Wellue pulse/ox on my finger which also captures motion and have synched it to my Oscar files. I also use a cheap night vision camera which I can easily synch to my Oscar report by the time stamp on the camera footage. Even though the Wellue is on my finger, it does a pretty good job of capturing movements in the rest of my body, maybe because they often are pretty exaggerated. From all of this, I can see that I'm dancing around most of the night which also is clearly evident in my attached Oscar flow rate and pulse charts.
I still have the occasional bad AHI report, but with all the PLMD disturbances, I'm not sure what is truly a breathing related issue and what is due to waking up and tossing and turning. Too many moving parts to the puzzle makes it frustrating to know what to focus on as I'm sure you know too well.
Good luck with your search and I will keep in touch if I find anything that really helps.
Hey there. I too am avoiding the DA drugs due to possible augmentation and the pretty reliable eventual cessation of efficacy, have tried pretty much every conceivable combination of herbals and vitamins to no avail, though some of the herbals that coupled with melatonin did seem to consolidate some deep sleep. Get the regular exercise, cut out refined sugars too, no caffeine after 10 am, no alcohol too. The one thing I did notice is the one night I had a good bit to drink this year my AHI was nil and PLM was non existent, unfortunately as a medicine it does far more damage than good.
CPAP has my OSA under control like you, unfortunately for us its probably only about 45% of the problem. On nights the PLM goes crazy and the intensity and amplitude get pretty high my CA events spike, directly correlating to the clusters of PLM, most all of them are sleep disturbance related rather than Centrals, it's pretty clear in the graphs. Do get my fair share of centrals though, that's another challenge, to be dealt with separately.
I've been going down the NIH route using Google Scholar to dig up old studies of off label trials treating PLM using drugs that aren't the typical DA route, focusing on small group studies that included PSGs.
The Gabapentin is definitely worth giving a good go with. For me it helped consolidate my PLM events into distinct clusters rather than just going all night long. I could even reliably move the clusters around by altering my schedule for taking the doses, so confirmed it was the Gp having the effect, unfortunately no matter how high the dose went the intensity, quantity and amplitude didn't really change consistently enough to deem it helpful beyond what was observed. Still take 100mg four times a day for neuropathy, works amazingly well for that, also dampens the RLS a bit.
Good luck to you too! Will certainly look you up here if anything ends up actually helping.
