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New here...PLMD...struggling

Posted: Sun Oct 16, 2016 1:21 am
by leggo_my_legs
Hi, I am 44 and have been suffering for years. Only just now diagnosed with PLMD when I decided to do the in lab sleep study. I was diagnosed with sleep apnea in 2005 and didn't do the in lab test, only the home test.

Here we are in 2016, I am having chronic pain, totally exhausted all the time, waking up with sore calves, and needing a new cpap but can't get approved until I do a new study. I really didn't want to do the in lab "copayment" was $625.00. But I just decided to bite the bullet. I'm glad I did, but still definitely in that miserable stage. I was measured at 248 leg movements in 5.5 hrs of sleep...not sure where that falls in the range, but it sounds like a lot to me.

I tried the gabapentin for 2 nights, starting at 300 mg. It made me feel very hung over the next day until about noon. I don't want to stick around to see if that improves, so tonight I'm trying pramiprexol.

I did rig a camera by my bed, so I know that the gaba wasn't working right away at that dose.

Anyway, I'm only on my 3rd day of trying to work thru this mess and already discouraged. I wish I could go immediately to opioids, as I know it would work for me because whenever I take Norco at bedtime I sleep like a baby. However, I can't ask for that in this day and age without incurring suspicion and badwill so I guess I'm stuck trying different things.

I already struggle with anxiety and depression so this is getting to be a bit much. :cry:

Re: New here...PLMD...struggling

Posted: Sun Oct 16, 2016 2:31 am
by ViewsAskew
PLMS are so difficult to treat and they know so little about it, all things considered. I think that a new mask/machine may really help. PLMs are worse when the apnea isn't controlled, as I understand it.

Hang in there. A lot of us here have anxiety and depression - we get how hard this can be.

Re: New here...PLMD...struggling

Posted: Sun Oct 16, 2016 5:59 pm
by debbluebird
Hopefully you have a good sleep doc. If you try the drugs and if they don't work, then they may let you go to the narcotics. Regarding gabapentin, with time you do get used to it. You shouldn't feel so bad the next day.

Re: New here...PLMD...struggling

Posted: Sun Oct 16, 2016 6:24 pm
by leggo_my_legs
viewsaskew, deb,

Thank you for your kind replies. Yes, my sleep doc is pretty good.

Last night on the pramiprex was worse than the gaba. I was moving at the foot, knee, and hips, as well as groaning and throwing off the covers. Today I'm so tired I can't even functon. I am so glad I have the video for objective info. And glad I don't have to go to work today.

I also started keeping a detailed sleep log in Excel of the meds I took and what time, rated my sleep movements seen on the video, rated my sleep quality, and my pain the next morning. This will take some of the subjectivity and guesswork out of it, which is a relief. Also gives me a feeling of control to be able to document my experiences.

I'm using this free app called Warden Cam (lol). I've got my electronic notepad by my bed doing the recording. It was a little difficult to position, but once I got it, it has worked like a charm. It is set to motion detector mode. Even though the notepad goes dark, it keeps recording all night! Only downside is sleeping with the light on.

Anyway, thanks again. I guess I have to just hang in there.

Re: New here...PLMD...struggling

Posted: Sun Oct 16, 2016 6:38 pm
by Yankiwi
Great idea using the video camera. Try wearing a sleep mask so the light doesn't bother you.

Re: New here...PLMD...struggling

Posted: Sun Oct 16, 2016 6:57 pm
by Rustsmith
leggo, I'm not sure if you can benefit from my current situation, but maybe it will provide you with some ideas.

I had my first sleep test three years ago, which is also when I was diagnosed with RLS. I had 96 episodes of limb movements during a total of 3.7 hrs of sleep that night. They also diagnosed me with a mild form of sleep apnea called UARS. Of the 96 limb movement episodes, 76 were categorized as periodic. I was also given a CPAP machine, even though CPAP hasn't been shown to always be effective for treating UARS.

Since then, my RLS/PLMS has been treated at various times with pramipexole, rotigatine and methadone. I also suffer from insomnia, so I have also been taking gabapentin, which allows me to fall asleep "normally". Some nights I also supplement the gabapentin with edible THC (marijuana). I have found that my body seems to metabolize the gabapentin in about 4 hrs. The THC does not kick in for two hours after eating the gummy bear, so it helps me stay asleep beyond about 4 to 5 hrs.

My current treatment consists of methadone to control my RLS issues and pramipexole at bedtime for my PLMS (along with the gabapentin and occasional THC). My doctor has scheduled me for a sleep study next month because she is concerned that I almost never get more than 7 hrs of sleep, and the quality of that sleep usually isn't very good. She suspects that the pramipexole isn't controlling my PLMS and the PLMS is causing microarousals, but also needs to confirm that the CPAP machine is working.

I have further complicated her life by pointing out that I often have bouts of RLS that wake me about an hour after bedtime. I treat these by soaking in a very hot bath for 5 to 10 minutes to "reset" my RLS long enough to get back to sleep. This is fine for most nights, but will not be possible when I am all wired up for the sleep study. She tossed out various ideas for that day/night, including suggesting I get more exercise that day. That caused a wry chuckle from me since she is not yet aware of the fact that I am in training for a marathon and am currently averaging more than 6 miles of running each day. In the end, she has sent a prescription for Lunesta (a sleeping pill) even though I have told her that Lunesta only works for me when my RLS is calm. My plan at this point for the study will be to do one of my longer runs during the afternoon before the study, to increase my dose of methadone that day 150% of my normal dose and to take her sleeping pill. Hopefully that will allow me to stay asleep during the study without invalidating the PLMS results.

Re: New here...PLMD...struggling

Posted: Mon Oct 17, 2016 9:02 am
by badnights
leggo_my_legs (love the name)
I have not much to add except there is one person on this board who has successfully used a TENS machine to treat severe PLMD. I don't know where she places the electrodes, but I am pretty sure she posted it here somewhere. Her board name is sleepdancer; you can access the advnaced search page by clicking the wheel icon to the right of the search bar, top right of every page. On the advanced search page, enter subject TENS and author sleepdancer.

Or, you can start with this post: viewtopic.php?f=1&t=7640&p=58081&hilit=TENS#p58081

Some of her earlier posts are very descriptive; I think you'll be able to relate. She augmented terribly on one of the DAs - I Think it was pramipexole - which caused even more severe PLMs. She is now treating herself with iron (and maybe some other) supplements and a TENS unit. IT might be worth a try for you.

What is your current dose of pramipexole?

Re: New here...PLMD...struggling

Posted: Tue Oct 18, 2016 5:06 am
by leggo_my_legs
Rust, badnights, yankiwi...

Thank you so much. This is a wonderful site! I listened to the hour long expert talk on opioids which was convincing and reassuring. I have a bunch of things to try first.

Yes I am absolutely indebted to sleepdancer for the video idea and now the TENS idea!

I was only on the prami at 0.125 mg for one night. MD took me off right away when I described the movements. She said it probably won't work for me. She wants me to try the gaba again, she's hoping I'll adjust to the side effects. I am not very excited about it, as it made me feel awful. I'll give it the ol' college try for a few days tho.

rust, I am getting so desperate I wouldn't mind a few gummy bears myself. Unfortunately I work in a field that drug tests and I hear it stays in your hair for a year. I don't think they excuse it if u have a card, but I'm not sure.

I am having technical difficulties with my warden cam, which has me totally bummed. So last night I only got 2 hrs of vid from my regular notepad video. What has been absolutely fascinating is to note the difference in leg movement quality and frequency on the different meds. It is drammatic.

For example, last night I only used some norco, to see how an opioid might affect it. My movements went down to only two an hour (from 48 at the sleep lab, and similar numbers with the gaba and prami). I had many small foot movements on the gaba, and many large foot, knee, and hip on the prami. Both had similar frequency, but different quality. The norco had far fewer, but larger, movements.

It has also been very enlightening to track my chronic pain, which is much worse the more I move at night the night before.

Tonight I'm gonna get a baseline with no PLMD meds, then I'll start the gaba again tomorrow...yuk.

This sucks, but I have to admit my inner scientist is kinda getting a KICK out of it. (ar ar ar!)

Re: New here...PLMD...struggling

Posted: Fri Oct 21, 2016 9:29 pm
by Midnightmarathon
I'm new here as well, but I also suffer from extreme PLM which have gotten to the point of as often as 3x/minute. You have had the some of the same people respond to you that I have had - are these guys/ladies the best or what? For what it is worth, I have found gabapentin to be a very helpful adjuct med, it just seems to quiet down the whole nervous system. from what I understand, you can go quite a lot highter than the very low dose you are on. I only weigh 110 and have been on 1200mg without feeling any hangover. I also don't know if you have tried it, but I found Nuepro patch miraculous for a few years. It might be worth exploring. I had been on requip (nasty nausea) but non of that with patch. I'm on Methadone now but truly wish I didn't need to be. It doesn't work as well on the PLM (for ME) as the neupro did and I feel like I have to hide it from so many. So nothing is perfect. Oh and what warden cam cracked me up!

Re: New here...PLMD...struggling

Posted: Sat Oct 22, 2016 11:00 am
by badnights
leggo wrote:I have to admit my inner scientist is kinda getting a KICK out of it.
Ha ha I can relate. A closet nerd.

Re: New here...PLMD...struggling

Posted: Sun Oct 23, 2016 1:56 am
by leggo_my_legs

OMG 3x/min you poor thing! I'm glad it's improved a bit.

Wardencam is truly the name of the app. It's awesome but you have to be very careful when you upgrade from free to paid version (one time fee of 5.99, very cheap!) I upgraded wrong and now it won't work. Tried to get help from them and they don't do phone support so I have to look for a different app. It was very cool bc it would save to the cloud.

I have actually been still trying the gaba. I haven't been hung over on it so I'm going to try 600 tonight.

Badnights, yeah I'm only a nerd scientist as long as it's fun and doesn't test my frustration tolerance too much lol!

Re: New here...PLMD...struggling

Posted: Sun Oct 30, 2016 9:02 am
by sleepdancer2
Just in case someone might find it helpful, I have successfully managed my PLMD for about 6 years by using a TENS Unit before bedtime. This is not in the treatment plan of any practitioner I've dealt with, but my sleep doctor was very interested and ran a series of sleep studies to see if my claims could be substantiated in the lab. I had 1/3 the number of movements using the TENS than when not using it. At the point of these studies I was medication free and had passed the period of after effects of augmentation. I had tried the TENS while augmenting and immediately thereafter and it didn't help. I don't think it's effect is enough to counteract medicinally induced movements. Some meds are known to be risky for causing limb movements. If one MUST have them, I'm not sure TENS will help much.

Re: New here...PLMD...struggling

Posted: Sun Oct 30, 2016 3:40 pm
by leggo_my_legs
Thanks sleepdancer! Between your augmentation video and TENS unit success, methinks you are a bit of a legend around here! :D

Yes, I am actually trying to get a TENS for my back and will try it for my legs too. I am very unhappy with the side effects and unsuccess of the medication options offered thus far. Hoping that more effective options will be offered at some point, or maybe like you TENS will work for me too.

Thanks again.

Re: New here...PLMD...struggling

Posted: Tue Nov 01, 2016 6:28 am
by sleepdancer2
I use the TENS in the same manner it was prescribed for lower back pain, but right before bedtime. On occasion I've had to repeat during the night, but not often. When my legs are acting up a lot I go to sleep with it on, helps me be able to fall asleep. Only thing is even though the activity stops after a bit, the machine is still on so the battery runs down. Small price to pay on a bad night.