Addressing PLMD

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
jjraines31
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Joined: Fri Mar 30, 2018 5:06 pm

Addressing PLMD

Post by jjraines31 » Mon Apr 02, 2018 5:18 pm

Hi all,

I have a complex case but one aspect of my sleep disruption comes from PLM's (confirmed by sleep studies). What's made my situation worse is intolerable aerophagia. But what I'm intrigued by now is the connection between aerophagia and PLMs, due to reflexive swallowing. So I'm hoping to tackle this, but very wary of the typical medications tried, in the conflation of RLS with PLMD even though they are not the same. Making it even more concerning is the fact that I already take something quasi-dopaminergic in adderall, which effectively depletes my dopamine receptors daily; so taking something else that hits up my dopa receptors is not something that sounds very healthy, to say nothing of the other side effects.

Anyway, have people had success with any drugs used for PLMD? Or with anything else? And I'm less interesting in relieving symptoms pertaining to leg pain/etc. but more the actual issue especially as it relates to arousals and air swallowing.

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kteague
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Re: Addressing PLMD

Post by kteague » Mon Apr 02, 2018 10:54 pm

jjraines31 wrote:
Mon Apr 02, 2018 5:18 pm
Hi all,

I have a complex case but one aspect of my sleep disruption comes from PLM's (confirmed by sleep studies). What's made my situation worse is intolerable aerophagia. But what I'm intrigued by now is the connection between aerophagia and PLMs, due to reflexive swallowing. So I'm hoping to tackle this, but very wary of the typical medications tried, in the conflation of RLS with PLMD even though they are not the same. Making it even more concerning is the fact that I already take something quasi-dopaminergic in adderall, which effectively depletes my dopamine receptors daily; so taking something else that hits up my dopa receptors is not something that sounds very healthy, to say nothing of the other side effects.

Anyway, have people had success with any drugs used for PLMD? Or with anything else? And I'm less interesting in relieving symptoms pertaining to leg pain/etc. but more the actual issue especially as it relates to arousals and air swallowing.
Sorry to come back at you with a bunch of questions. Just trying to get a better understanding of your situation. Since you came to a sleep apnea forum, is it safe to assume you also have sleep apnea and use CPAP? Can you help me understand the reflexive swallowing? I'm asking because some people on CPAP experience air in the belly. Are you speaking of something totally different? About the med you are on - isn't it notorius for either causing or worsening RLS and PLMD? Is it a medicine necessary to your quality of life? With PLMD it is helpful - when possible - to get to a baseline then see what helps. If your symptoms are caused or worsened by the med, you have a bigger problem than if your movements are strictly from the disorder. You are wise to be reluctant to add meds to meds. It's a recipe for trouble and a path you really don't want to have to go down. Besides, dopamine agonists aren't known to work well against limb movements that are infuenced by other meds.

In general though, some tips are to get and keep your ferritin level up to around 100, make sure you are complete in things pertaining to nerve and muscle health, for starters Vitamin D, magnesium, and B12. Helping your arousals will go hand and hand with helping your leg pain. (Not certain how the air swallowing factors in.) I am successful treating my baseline limb movements with a TENS Unit only. The TENS Unit did not work when my movements were caused by augmentation on a dopamine agonist. Since you mentioned your concern over meds, if you want some reinforcement for that, check out the link to my sleep video in my signature line. Believe me, you don't want to ever get there. Of course this doesn't happen to everyone, and the need for sleep necessitates doing whatever it takes. Just continue to be measured in your efforts.

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jjraines31
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Re: Addressing PLMD

Post by jjraines31 » Wed Apr 04, 2018 7:53 pm

Thanks for responding.

Yes, I have sleep apnea; basically refractory complex sleep apnea with symptoms unchanged and debililtating despite continued use of xPAP therapy (biPap ASV), with a million and one attempts at improvement. Also, have developed (in part, because of those tweaks, like raising air pressure in past) aerophagia from hell at the absolute extreme of the spectrum, which has led to serious GI issues. I posted this as I try to address that one piece of the puzzle, PLMs, and it's possible connection to my severe aerophagia. This goes beyond discomfort and gas, but a systematic annihilation of my stomach, esophagus, and LES. I have tried everything under the sun for aerophagia and though it varies by the night (likely because of time spent at the more compromised positions while sleeping), it has proven harder and harder to reduce.

But if it's part of PLMD then it's not just a weakened LES, as my LES would be doing it's job if I am reflexively swallowing. One reason I speculate this, is because to help my gut heal from a particularly ruinous recemt aerophagia night, I had to take a break from xPAP. Even so, I had some air bloating on first night without (though the days following, I have not). On the days off xPAP I also have not had any throat soreness/tightness, even though with xPAP I do, and wear a mouthguard because of it. That soreness and grinding suggests reflexive movements and swallowing while using xPAP but not without it. A lot still dubious.

I have high ferritin levels so no issue there. Have long history supplementing D and mag types and other things substantially, to no apparent effect in any way. Low baseline D and still on lowish side despite supplementation, for what it's worth.

On adderall because it's the only thing I've found that gives me a modicum of functioning. Longterm use, I guess it's possible it plays a role but wouldn't be augmentation as I've done an effective job at mitigating adderall's destructive effects and managing dosage.

I've been trying TENS, won't hurt atleast. But given it's a brain problem (and I don't really care about the actual leg movements but the underlying problem behind it), how likely is it to help? Also, the twitching is in arms and body as well. Thanks.

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kteague
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Re: Addressing PLMD

Post by kteague » Wed Apr 04, 2018 10:51 pm

jjraines31 wrote:
Wed Apr 04, 2018 7:53 pm
I've been trying TENS, won't hurt atleast. But given it's a brain problem (and I don't really care about the actual leg movements but the underlying problem behind it), how likely is it to help? Also, the twitching is in arms and body as well.
For someone with PLMD, even if your sleep apnea treatment is doing everything right, you can still have crappy sleep and feel awful. Sorting through the interactions between multiple issues is most frustrating, especially when our instincts tell us there's something there, but we just can't quite get to "it". My aerophagia issues have not been problematic enough to give me any relatable experience. The legs are another story.

I'm not sure how your brain could recover if the legs are still moving. They are a part of the habituated patterns in your brain, and those movements reinforce those neural pathways. Retraining my brain and relearning how to sleep was beyond challenging, and it took several years. Someone told me that my recent improvements were likely due to those old pathways finally dying off from lack of use. Calming my legs was of utmost importance to me because after 20+ years of my muscles rarely getting to experience the restoration of sleep and inactivity, I became incapacitated, without strength to climb steps, and near the end of the worst, I couldn't walk 10 feet without sitting. I would encourage you to not take the leg movements lightly. Does your brain ever get stuck repeating thoughts when you are trying to sleep? Kinda like an ear worm or broken record? If so, we can talk about that. Got a few techniques that worked for me.

My TENS use saved my life. Once my system was clear of all the meds (that was rough) I started seeing a glimmer of hope. It was persistent and consistent use, no matter whether I felt it was or wasn't working, that eventually won out. It seemed as if the effect accumulated. I use my TENS as prescribed for low back pain, but at bedtime. Theoretically, filling up the pathways with these sensations could temporarily interrupt the limb movements signals. My goal was to interrupt them long enough for the brain to get a chance to heal. After 6 years of this, I discovered I can miss nights and still sleep well with calm legs. Have even missed for a couple weeks, but try not to go too long. Don't want to wake the sleeping bear.

Good luck in figuring things out.

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jjraines31
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Re: Addressing PLMD

Post by jjraines31 » Thu Apr 05, 2018 8:04 pm

Thanks, yes I am looking to take it seriously it's just very murky business...which is business as usual for me I guess. So how much TENS use per day would you consider adequate? I don't get stuck on repeating thoughts. What's the story there? Just seems like my ANS (for whatever reason) gives me jerky movements as I sleep. Even though they are responsible for a decent chunk of my arousals none of the sleep docs I've seen ever thought it noteworthy (not that they know anything; seriously). Have you ever considered having TENS run into the night while you sleep? Or atleast partially. I think I'm going to try that also. It does seem to be worsening. My muscles are definitely weakening, and pain in my back has also been worsening and found no relief. Doesn't help that I have to sleep VERY upright in my battle to mitigate reflux.

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kteague
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Re: Addressing PLMD

Post by kteague » Fri Apr 06, 2018 1:31 am

My TENS use has been mostly just for a half hour or so before bedtime. On occasion I'd have to repeat it during the night, or during the day if travelling. I have gone to bed with it on when either I got home so late and was too tired to wait, or when my legs were so bad I knew it was going to be a long hard night. When I use it during the night, it's at a lower intensity. Mine will cut off in about 20 minutes, but I restart it for hours. Haven't hard to do that in a couple years though.

When my legs were in repetitive movement, simultaneously my brain would be repetitive too. Like a phrase or line from a song in my dream would just keep running through my head over and over. After trying all manner of self help efforts, my solution was to play easy listening oldies all night with just enough volume to make out the words. My theory was because I knew the words by heart, they did not cause stimulation or wakefulness of listening. Yet the constant input kept my brain processing instead of getting stuck. Stopped needing to do that in recent years.

Can you describe your leg movements? Contractions? Of toes, feet, lower leg, entire leg? Or is it more like flailing, as if by electrical shock? Have you ever filmed yourself? I can't say this is an absolute, but for me, PLMD involves contractions, or maybe a bicycling motion. Flailing would make me suspect a med.

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ChicagoGranny
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Re: Addressing PLMD

Post by ChicagoGranny » Fri Apr 06, 2018 6:02 am

jjraines31 wrote:
Wed Apr 04, 2018 7:53 pm
aerophagia from hell
You might want to read the wiki on aerophagia - wiki/index.php/Aerophagia