UARS/FL/RERA (PLMS): My Sleeping Drawbacks

[mper!?]

Hi, dear folks
I have just joined this Forum. First of all, apologies for my non-native English.
I have quickly got impressed with the good level of discussions here, and eager to starting learning from you guys and exchanging experiences from my seven-month therapy using OSCAR and outcomes.
After some few decades suffering from UARS/FL/RERA and PLMS and their deleterious consequences, without realizing, of course, finally a damn Doctor asked me a PSG two years ago. Life started changing, since then: 1.5 years lost with Resmed CPAP (and nasal mask, leaking, wrong pressure, wrong doctor, etc.), + 1.5 months lost with Resmed Airsense (trapped between aerophagia and EPR:3.0; since then, all by myself), and, finally, started getting improvements (all by myself) with the Resmed Bilevel VAUTO.
Nowadays, after experiencing a lot with EPAPmin and PS with the VAUTO, I think I have completely worked out my first sleep drawback, the RERA/FL-driven awakenings. Still remaining something much harder to tackle: PLMS.
After going through some three threads with the topics of my interest, UARS/FL/RERA and PLMS, has called my attention some initial aspects, on which I would like to start to have some ideas, before I go for my first thread:
A_ how you guys see/evaluate here the viability of treating UARS/RERA/FL with APAP-like machines, just by raising pressures, rather than going to Bilevel, and take advantage of the Pressure Support > 3.0 ?,
B_What would be a general experience/view from you guys on treating PLMS without big shots (Dopamine boosters, Pregabalin and likes, Clonazepam, and so on)?

Thanks

[palerider]

Stay in this thread.

[zonker]

Stay in this thread.

indeed the OP should do that.

did you miss the questions he had?

"A_ how you guys see/evaluate here the viability of treating UARS/RERA/FL with APAP-like machines, just by raising pressures, rather than going to Bilevel, and take advantage of the Pressure Support > 3.0 ?,
B_What would be a general experience/view from you guys on treating PLMS without big shots (Dopamine boosters, Pregabalin and likes, Clonazepam, and so on)?"

i would answer the questions myself, but as i have no idea what i'm talking about, i'd cause more harm than good.

[palerider]

Stay in this thread.

indeed the OP should do that.

did you miss the questions he had?

"A_ how you guys see/evaluate here the viability of treating UARS/RERA/FL with APAP-like machines, just by raising pressures, rather than going to Bilevel, and take advantage of the Pressure Support > 3.0 ?,
B_What would be a general experience/view from you guys on treating PLMS without big shots (Dopamine boosters, Pregabalin and likes, Clonazepam, and so on)?"

i would answer the questions myself, but as i have no idea what i'm talking about, i'd cause more harm than good.

Nope,I don't do plms, and I see no point in talking hypotheticals, show me some data.

[mper!?]

Nope,I don't do plms, and I see no point in talking hypotheticals, show me some data.


Ok, thanks.
I will send the data soon....just to have a little more time to organize myself and see from what I would began.

thanks

[zonker]

Nope,I don't do plms, and I see no point in talking hypotheticals, show me some data.

gotcha. let's see if a post happens.

[zonker]

Hi, dear folks
I have just joined this Forum. First of all, apologies for my non-native English.

welcome aboard. i'm sure you speak english better than i can speak your language, whatever it may be. i have no trouble reading what you wrote, so that's a plus.

please post some of those oscar graphs for the experts here to see and comment upon.

then you'll start to get some answers.

also, if you would please, fill in your equipment profile so your machine and mask shows up in every post, as mine does below. we don't all use the same equipment and any advice you get from this point on may depend on what your equipment is. thank you.

good luck!

[palerider]

Nope,I don't do plms, and I see no point in talking hypotheticals, show me some data.


Ok, thanks.
I will send the data soon....just to have a little more time to organize myself and see from what I would began.

thanks

begin by posting last night's data.
follow these instructions, wiki/index.php/Sleepyhead:Organize but use Oscar.

[kteague]

About the PLMS... Limb movements that are secondary to a medication (like some mood meds) tend to be more problematic to control. Movements not caused by a med have proved for me to be more responsive to alternative treatments. First things first - have you had a ferritin level (storage iron) drawn? It is recommended that those with RLS and/or PLMD keep their ferritin level up around 100. Much lower is considered normal for the general population, but not for us. Also, have those things checked that are necessary for healthy nerve and muscle function, Vitamin D and Magnesium for starters. Give your body a fair fighting chance. Now, I can't guarantee your experience will mimic mine, but after years of big-gun meds, the last several years I have had good success at treating my legs with a TENS Unit. The first few years I used 4 small electrodes in a square on the lower buttocks for at least a half hour before sleep. Over time I was able to drop that to just 2 electrodes without diminished results. If you decide to do this, I recommend being consistent over a long period of time. The time may come when you can skip nights, but give your brain a chance to break those old patterns causing repetitive movements. Not perfect, but if you want to stay med free, it may be enough relief for you to get some sleep. If you do try the TENS, please report back. I'd like to know.

[mper!?]

About the PLMS... Limb movements that are secondary to a medication (like some mood meds) tend to be more problematic to control. Movements not caused by a med have proved for me to be more responsive to alternative treatments. First things first - have you had a ferritin level (storage iron) drawn? It is recommended that those with RLS and/or PLMD keep their ferritin level up around 100. Much lower is considered normal for the general population, but not for us. Also, have those things checked that are necessary for healthy nerve and muscle function, Vitamin D and Magnesium for starters. Give your body a fair fighting chance. Now, I can't guarantee your experience will mimic mine, but after years of big-gun meds, the last several years I have had good success at treating my legs with a TENS Unit. The first few years I used 4 small electrodes in a square on the lower buttocks for at least a half hour before sleep. Over time I was able to drop that to just 2 electrodes without diminished results. If you decide to do this, I recommend being consistent over a long period of time. The time may come when you can skip nights, but give your brain a chance to break those old patterns causing repetitive movements. Not perfect, but if you want to stay med free, it may be enough relief for you to get some sleep. If you do try the TENS, please report back. I'd like to know.

Hi, Kteague
do appreciated prompt reply, many thanks. I am attaching kind of weird simplified graph I have been using to track my therapy. I am about to go for a new ferritin test, however it was already boost from some 54 to some 150 ng/l since end of june. I am also on regular vitamin D, magnesium, and many more; no solution on those fields, I am afraid. You might see on the graph that bigo shots, such as Pregabalin (hard to cope with side effects), Pramipexol and L-Tyrosine (crazy things, never more) do work, in terms of lowering PLMS-awakenings/h; however hard to cope with side effects. CLONAZEPAM 0.6, yet not decreasing PLMS-awakenings, does bring a higher Sleep Efficiency and HYF (how you feel index), on account of bring me back quickly to sleep, and maybe lowering arousal threshold in general. Actually, I have Clonazepam as safe harbor, whenever I need to go to. Currently, I have been persisting with Valerian 1590mg; it appears has brought some relief on the resilient PLMS-awakenings; let us see more some 1 month. I also have in mind Canabidiol for upcoming future (will see with my doctor).
I am going to study and eventually try TENS.
Goodk luck

[mper!?]

About the PLMS... Limb movements that are secondary to a medication (like some mood meds) tend to be more problematic to control. Movements not caused by a med have proved for me to be more responsive to alternative treatments. First things first - have you had a ferritin level (storage iron) drawn? It is recommended that those with RLS and/or PLMD keep their ferritin level up around 100. Much lower is considered normal for the general population, but not for us. Also, have those things checked that are necessary for healthy nerve and muscle function, Vitamin D and Magnesium for starters. Give your body a fair fighting chance. Now, I can't guarantee your experience will mimic mine, but after years of big-gun meds, the last several years I have had good success at treating my legs with a TENS Unit. The first few years I used 4 small electrodes in a square on the lower buttocks for at least a half hour before sleep. Over time I was able to drop that to just 2 electrodes without diminished results. If you decide to do this, I recommend being consistent over a long period of time. The time may come when you can skip nights, but give your brain a chance to break those old patterns causing repetitive movements. Not perfect, but if you want to stay med free, it may be enough relief for you to get some sleep. If you do try the TENS, please report back. I'd like to know.

Hi, Kteague
do appreciated prompt reply, many thanks. I am attaching kind of weird simplified graph I have been using to track my therapy. I am about to go for a new ferritin test, however it was already boost from some 54 to some 150 ng/l since end of june. I am also on regular vitamin D, magnesium, and many more; no solution on those fields, I am afraid. You might see on the graph that bigo shots, such as Pregabalin (hard to cope with side effects), Pramipexol and L-Tyrosine (crazy things, never more) do work, in terms of lowering PLMS-awakenings/h; however hard to cope with side effects. CLONAZEPAM 0.6, yet not decreasing PLMS-awakenings, does bring a higher Sleep Efficiency and HYF (how you feel index), on account of bring me back quickly to sleep, and maybe lowering arousal threshold in general. Actually, I have Clonazepam as safe harbor, whenever I need to go to. Currently, I have been persisting with Valerian 1590mg; it appears has brought some relief on the resilient PLMS-awakenings; let us see more some 1 month. I also have in mind Canabidiol for upcoming future (will see with my doctor).
I am going to study and eventually try TENS.
Goodk luck

PS_kteague, after some 4-months, i am about to Go back to doctor that prescribed iron and initial ferritin boosting.
What would be your feelings on trying more complex iron administration (intravenous), analysis beyond the Basic serum concentration, and so on....would be worth trying?
Many thanks, GL.

[kteague]

Have to give you credit, you certainly are on top of tracking things. You're well informed and that's great because you are better equipped to make decisions about your treatment. So many are at the mercy of doctors trying things willy-nilly with no good picture of what's working. As to infusions, I'm not real informed about them. I thought they were used mostly for those who can't keep their ferritin up. I would need to have counsel by a trusted specialist before considering an infusion simply because they are not without risks so I wouldn't want one unless I knew I needed it and there was a reasonably good chance of it helping. One thing to consider with the different meds is whether they are stopping your movements or if they are allowing you to sleep through the movements. Sleep is necessary, but if your legs are still moving they are not getting the rest they need for the tissues to be restored. With me there was an accumulating weariness and weakness in my legs. The good thing about TENS Unit treatment is it interrupts the signals that make the legs move. If you are not on any particular med regularly where getting off is an issue, it would give you a clearer picture if after using the TENS for a few weeks you spent some time unmedicated to get a clearer picture, if that's possible.

[mper!?]

.

One thing to consider with the different meds is whether they are stopping your movements or if they are allowing you to sleep through the movements

. thanks, well, I do think, based on my daily counting and tracking, that some meds (particularly Pramipexol and Pregabalin) diminish moves; problem here, with this two meds, is cope with side effects. Pramipexol, for instance, I could handle only for a very few days: it stopped moves, but left me kind awakeness all night.

The good thing about TENS Unit treatment is it interrupts the signals that make the legs move.

...this is very interesting. I have started reading on TENS. It appears, first, it has to do with pain, maybe having something to do with PLMS as well, as you have been experienced. ..wonder like some meds (including Pregabalin) used for PLMS, which also have to do with pain.
On TENS, I think I am already prepared to order one and go for an experience. It looks there would be many options to acquire. I wonder if could suggest me the best one, and a second option (email me eventually...not sure whether this is allowed here?).
Maybe I have forgotten to mention, I am also a RLS sufferer since kid; it is not only PLMS.
I don't have video on my PLMS, however sometimes I used to audio-recording my sleep with a very sensitive low cost device, which combined with OSCAR's chart, has been giving excelent feed-back on kind of move I would have. I this amazing classification of Dr. Hooper (links here), I think I would classify myself as level 1/2 (more rare, just based on chart, see following attach), and 4 (or more), much more common, and more harmful, once they always awakening me up.
Level 1 _ https://www.youtube.com/watch?v=uRC5ow8 ... ex=49&t=0s
Level 2I _ https://www.youtube.com/watch?v=Vr-uds1 ... z&index=46
Level 3_ https://www.youtube.com/watch?v=D4RJswU ... z&index=47
Level 4_ https://www.youtube.com/watch?v=h4Meukf ... z&index=45

[mper!?]

...in time, kteague, wonder if you could tell me something on what you think would be your relationships between PLMS and respiratory-driven (in my case, FL/RERA), if you think there would be any. I my case, I am totally focused on awakenings (I have concluded that Sleep Efficiency is everything; no matter how many times you awakening/wake up, as long as you go back to sleep quickly), whatever driven by PLMS or FL/RERA. These days, combining EPAPmin and PS, I think a have pretty much completely worked out FL/RERA-driven awakenings, remaining, highlighted, the PLMS-driven ones.

Many thanks, Good Luck

[kteague]

When I had my sleep studies, very few of my movements were related to my breathing. Everybody is different. I figured if I resolved my breathing issues with cpap then I could be pretty sure any residual movements are not breathing related. Now, my disordered breathing is pretty basic, not complicated with UARS or other variations. About the TENS, I'd say keep it simple. They have all kinds of fancy new gadgets and bells and whistles I've not seen a need for. Had 3 units over about 9 years, couldn't even tell you all the names. The Empi brand was supplied by a doctor for back pain and I just tried this as off label use. Second was a gift from a forum member. Third one was lightly used from Craigslist for 10 bucks. I'm not a very discriminating user, but hey, I'm ok with that because it's worked out ok for me. I have a feeling you'll figure out what appeals to you.