Sleep study says Apnea and PLMD

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RDPRDP
Posts: 2
Joined: Wed Apr 22, 2015 2:01 am

Sleep study says Apnea and PLMD

Post by RDPRDP »

Hello all, I am a new member, but have been a lurker for a while. I am in the newbie forum, but maybe I should be in the prescription meds forum? Maybe a kind moderator can move me over if that's the best place for this....

So, my issue:

I knew I had Apnea, snoring, and leg movements during sleep, I had these for years and did nothing about it. Recently in order to get my snoring fixed and to hopefully have a better sleep, and to feel less like a zombie during the day, I had a sleep study.

1st results: AHI of 38, PLMD some high amount (forget right now the exact figure)
Was prescribed CPAP and and given the OPTION of Sifrol or Clonazepam (Rivotril).
2nd results with CPAP: AHI down to 6, PLMD way up.

In the month that follwed the issuance of my CPAP I ONLY used the CPAP as I wanted to know for sure that my leg movements were not Apnea related. While my compliance with the CPAP is not terrible (I do seem to take it off at night and not put it on again....) it's good enough to demonstrate the the PLMD is not being helped by the CPAP.

So I have decided to take the Sifrol for a month along with the CPAP to see what happens. I have done it a few nights now and I don't wake up as often, which is nice, but I also don't feel that amazing feeling I am supposed to have from having a good sleep. I had hoped CPAP and SIfrol would do that.

Dosage: I take a small amount (will update this later once I see my prescription) about 1 hour before bed. Nothing more.

Concerns: I HATE PILLS. I take NOTHING under regular conditions for anything in my life. I hate hate hate having to do this, but I want the good sleep in such a bad way I am willing to do this. Should I be keeping up with Sifrol for a month before trying Rivotril, or should I be asking the doc for something entirely different? Long term affects also concern me greatly, however I am probably on much lower doses than many people here. I fell terrible you all have to go through this, but at least I am joining you as of now on the adventure!!!

thanks,
RDP

sleepdancer2
Posts: 222
Joined: Sun Jun 29, 2014 7:46 am

Re: Sleep study says Apnea and PLMD

Post by sleepdancer2 »

After dealing with both Sleep Apnea and PLMD for many years, here's my perspective. Having your movements worsen when on CPAP is not unusual. Happened to me too. When CPAP resolves your apnea you and have the opportunity to sleep with fewer respiratory wakings, it gives the PLMD more opportunity to manifest. So many think because they still aren't getting good sleep or feeling rested that CPAP isn't working. It can be working perfectly for what it is designed to do. Successfully treating my sleep apnea gave me one less health issue draining me and gave me the strength to address the remaining issue of limb movements. About taking your mask off, if it is in your sleep, try putting a bandaid or piece of tape across the strap and onto your cheek. Removing it should cause enough discomfort to wake you and make you aware and stop the behavior. If you are taking it off during the night intentionally - stop it.

Have you already made the commonly recommended efforts you've probably already read about, such as getting your ferritin level up near 100, making sure your magnesium and Vitamin D levels are adequate, avoiding caffeine? Some self help tips to mitigate the symptoms are warm foot soaks before sleep and a pillow between the feet and knees to buffer the movements and hopefully result in fewer arousals.

I understand your concerns about meds. Sounds like you are the type to do your research and make informed decisions. The option I chose after 10+ years of meds was to treat my legs with a TENS Unit. This has done well for me. Others have reported to not have success with it. Good luck going forward. There's a wealth of information on this forum. You're in a good place.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Sleep study says Apnea and PLMD

Post by ViewsAskew »

The sad, sad state is that while we bemoan how little research is done about RLS/WED, even less exists or is done about PLMS or PLMW.

For what it's worth PLMD is supposed to ONLY be used as a diagnosis when there is NO other sleep disorder. If PLMs - the movements - exist when you have another sleep disorder, they are considered secondary and not a disease designation. BUT - I don't think that is necessarily right. It could be if someone has RLS, but clearly, as shown with RDP and sleepdancer2, the movements get worse when apnea is treated, seems to show that it's separate. I've had severe PLMs since I was a toddler, but had no other sleep issue until I was a teen, when the RLS/WED started. It was very mild for me, though, and the PLMs remained severe.

All this is to say - we know just about nothing about this!

From my perspective, the dopamine agonist drugs worked extremely well. I used pramipexole (Sifrol in Australia) and it worked well. But, it also worsened my RLS/WED a LOT! If I were you and decided to try the pramiepexole, I'd take the lowest possible amount you can to start. If they prescribed .25, I'd cut that into quarters if at all possible. There are few other options for PLMs that we know of. If you have access to a TENS unit, trying it could be very helpful. I find that opioids reduce my movements, but to not eliminate them. I have no idea if other opioid substances - such as kratom (which may or may not be illegal where you are). Poppyseed tea could be an alternative - but, as I always note. we have NO research on substances such as kratom. And, there is no regulation. Some people prefer them for various reasons, some people are more scared of them than of the pharma drugs. Whatever you choose, be safe!
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.

RDPRDP
Posts: 2
Joined: Wed Apr 22, 2015 2:01 am

Re: Sleep study says Apnea and PLMD

Post by RDPRDP »

Thanks for the two very quick replies. It's nice to have people who understand the general area of my issues, as most people just give me a strange look when I say I am taking pills that are supposed to treat Parkinsons symptoms.....

I can now announce my dosage of Bi-Sifrol (I did not mention Bi before, that is my fault): 0.125mg.

To ViewsAskew: You suggest then that half the amount I take then is best to start with then? I will look into a TENS unit as well. Thank you!

To Sleepdancer2: CPAP take off technique with the tape: That's a brutal, but effective technique. Fortunately for my situation it's a bit easier to deal with, I just need discipline. My issue is that when I do wake up to go to the bathroom, or just plain wake up (my core sleep issues of course...) I really INTEND to put it back on, but when I am getting back into bed tend to pass out while sitting up in bed, or something similar very similar. It comes down to discipline, I should be able to teach myself to do it better to raise compliance. It is still a just over a month since I started CPAP, so am not fully used to it, and certainly not used to enforcing a routine. I have a typical mask, but might try nasal pillow style in the future. Thankfully I have a machine that has the function to reduce pressure on my exhales but it not a fully APAP machine so I get the full pressure through the night. Time should fix it! As to your other good points (including ferritin levels) I will certainly look at everything.

Since I left it out of my initial message here are the exact PLM figures from my sleep study:

1st study (NO CPAP): PLM 438, Index (avg. per hour) 60.3
2nd study (with CPAP): PLM 721, Index (avg. per hour) 114

So, exactly as sleepdancer2 notes, now that I can breathe I can do my dance all the better. Too bad I would prefer sleep......

In closing this note I have two things to share:

1. Read you insurance fine print, INCLUDING the seldom shared, but a separate document from the glossy sales literature, LIST OF EXCLUSIONS. Only after I was turned down for ANYTHING to do with Sleep Disorders did I discover that golden nugget. Read, read, read.

2. This might be common knowledge about these parts but I might as well just say it and labeled the 'open minded, sharing type'. I'm pretty sure a part, or a large part of my issues stem from what I keep in my closet (the mental closet). Sound mind equals sound sleep. I prescribe to that thinking. Unless I ever come to peace the my luggage in my closet I'm sure to always have issues. Fear, worry, concern, lack of confidence in the future, all that stuff is bound to mess a person up, more people just need to admit it as that is half (ok, maybe a quarter...) of the battle.

thanks,
RDP


cheers all,
RDP

Rustsmith
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Sleep study says Apnea and PLMD

Post by Rustsmith »

RDP, I was having a similar issue with putting my mask back on at night following trips to the bathroom. I decided to try disconnecting the hose from the mask as opposed to taking the mask off. That seems to work well since you can still feel the mask on your face when you get back into bed, which helps tell the mind to connect back up before passing out again. I feel a bit like a horror movie character since I use a full mask to cover my mouth, but I have had far fewer times when I woke up in the morning sans-mask.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Sleep study says Apnea and PLMD

Post by ViewsAskew »

Yes, I'd cut it in half, RDP. Or even quarters. The lowest possible amount to help you is what you want to take. And, doctors are finding it's MUCH lower than the original pharmacy studies had us believe. (Imagine that....)

Full disclosure, I went through a lot as a child and young adult. When I started having nightmares and couldn't sleep, a very, very wise PCP suggested I check out Adult Children of Alcoholics as a place to start. A therapist and group therapy became the norm for me. About two years into "program" as the 12 step folks like to call it and a year into a regular meditation practice, I realized that I no longer took an hour to fall asleep, nor would I awaken and not be able to get back to sleep. Dealing with my closet - or the 100 pound baggage I carried with me -allowed me to be calmer, happier, and to sleep! Of course, it didn't resolve the PLMs. But, that one thing was such a relief to me.
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.

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