PLM pattern or RERA spikes?

[Sleepy Quixote]

@permabear

Hey permabear, glad to join in, we are our best support, takes a village.

Your last PSG definitely had good numbers, but I wouldn't say 3.6 arousals per hour for a single source (PLM) is insignificant (yes low for that source) considering there are multiple sources of arousals in every sleep session. The overall burden of arousals on sleep quality is what should matter. The sleep stage numbers were very good in totals, my question would be how many fragments were needed to get the good totals. That's what PLM does, it fragments everything, in the end, adding up all the fragments gives good numbers, but the sleep was still pretty unrefreshing. (Think straw that broke the camels back... that straw was small and in significant)

Absolutely PAP therapy is working... for the OSA and definitely improving sleep quality. PLM is chipping away at those gains. 

"So yes, my spiky pattern may very well be related to PLM. The thing that gets my mind going is that I do feel better after raising EPAP. Strange isn't it?" 
Not at all, there are certainly breathing related disturbances mixed in with the PLM pattern, it's not necessarily all one thing. That's why I use the sleep monitor to help in separating the wheat from the chaff, so to speak.

"If the little spikes are PLM spikes. Does that mean they're in someway related to an arousal? And could it be possible that my PSG report doesn't show the whole picture?" 
The little spikes regardless of origin represent various degrees of disturbance, some may be arousals by definition others may simply bump you from a deeper sleep stage to a higher stage. Say N2 up into N1 for a bit, or even bump you out of REM and into N1 for example. Not full arousal by definition. Not every spike is detrimental, most aren't, its the whole picture that needs to be interpreted, not necessarily a single brush stroke. Your PSG shows a picture for that sleep session, defined by people who do not recognize PLM as detrimental to sleep. My guess would be that if the entire sleep industry could be afflicted with PLM for about six months, definitions would change. 

Agree with you on supplements and drugs. Valarian is very powerful and can cause me to have that woozy in the morning too if the dose was too strong or taken too close to sleep time.

I've come across the augmentation issue before but interpreted it as temporary, if one stopped taking the med, the augmentation would abate and one would go back to the level of affliction prior to taking said med. Making it so that avenue of therapy has to be avoided. Bad news for someone who needs the med for treating a different issue but find it augments their RLS or PLM. Now that you have mentioned your interpretation I will definitely revisit it in regards to the meds I'm contemplating. Permanent augmentation would be that last thing I'd want to get into.

[permabear]

"The sleep stage numbers were very good in totals, my question would be how many fragments were needed to get the good totals. That's what PLM does, it fragments everything, in the end, adding up all the fragments gives good numbers, but the sleep was still pretty unrefreshing."
"The little spikes regardless of origin represent various degrees of disturbance, some may be arousals by definition others may simply bump you from a deeper sleep stage to a higher stage. Say N2 up into N1 for a bit, or even bump you out of REM and into N1 for example."

This is really interesting. So you're saying that an event that's bumping you from one sleep stage to another (causing fragmentation if it's happening all the time) will not necessarily be counted as an arousal? Hence such events will possibly not be regarded as a problem by sleepdocs? 
Am I interpretating you correct here? I'd expect reviewing for possible sleepfragmentation to be standard procedure. I'll take a look at my PSG what it says about it. 

"My guess would be that if the entire sleep industry could be afflicted with PLM for about six months, definitions would change." 
Haha if only the doctor could feel what the patient is going through.. My doc is really willing to cooperate but at the same time he is bound by certain definitions and axioms. It's difficult indeed. 

"Agree with you on supplements and drugs. Valarian is very powerful and can cause me to have that woozy in the morning too if the dose was too strong or taken too close to sleep time."
I took it about one hour before bedtime. Could that be too close? Same with GABA. 

"Permanent augmentation would be that last thing I'd want to get into."
Absolutely. As far as I remember these meds can induce irreversible changes to your neuro system. I'm not sure where I read this but in general I find HealthUnlocked a valuable source of information (look for the Restless Legs Syndrome community). 

This thread has really motivated me to try some supplements again. If anyone has found something that works, please feel free to post it here.

[Sleepy Quixote]

@permabear

Moving between sleep stages would not be considered an arousal. They have specific definitions for what classifies as such, when I say the definitions would change if they were inflicted, I mean interpretation of such would change. I've had two PSGs one in 2006 that showed zero OSA but a PLMI over 46, arousals in the 60s during a barely 6 hr sleep session. ZERO Stage N3 sleep. They prescribed cpap, I lasted three months before dropping out. It made my sleep worse. Fast forward to last year, another PSG, exhausted couldn't take it any more, RDI 13.9 Respiratory arousals 53, PLMI 50 PLM arousals 69. Again barely 6hrs sleep time and ZERO Stage N3 sleep. Note the term arousal is used for both OSA and PLM. It is the defined interpretation of arousal. Yet the weight of a PLM arousal is practically zero when the sleep medicine folks appraise sleep quality. I came back to the sleep Doc's after 4 months of PAP therapy, saying I am still exhausted. Feeling somewhat more rested but still exhausted. Their response was to shrug, your AHI looks excellent, stop fiddling with the settings. 

I had PSG in hand, on three different occasions, first with the Sleep Dr, then at a follow-up with a Sleep Nurse and finally with a Respiratory Therapist and asked very directly "Isn't PLM at the very least half of my problem?" Three times told no. So apparently a PLM arousal and OSA arousal scored on PSG have wildly different appraisals/definitions/interpretations, what ever one wants to call it. (sarcasm) 

Yes the fragmentation can be seen in the PSG and is also reflected in the sleep efficiency score to some degree. Unfortunately all of it gets boiled down into totals on the summary sheet that most of the medical professionals use for diagnosis and recommendations for treatment.

Even bright red flags like ZERO Stage N3 sleep on multiple PSGs gets ignored if not caused by OSA.

I have yet to meet one single person online or in person who has moderate to severe PLM who has had a positive outcome directed by caring medical professionals. 

On the Valarian root, I try to take it two to three hours before sleep time (actual head on the pillow sleep time). Seems to reduce the morning hangover effect and for me somewhat more late sleep cycle N3, according to questionable estimations of the sleep ring, though those estimations are corroborated by my subjective appraisal in the morning.

Right now I'm taking two Melatonin based herbal supplements that do seem to be helping me get some deeper sleep in. Both of them are compounds of various herbs and vitamins.
Natrol - Sleep'n Restore and Sleep Science - NightRest. I combine a single dose of one and a half dose of the other to good effect. Its easy to do as one of them in a two pill dose, so just take one. 

ttyl

[permabear]

I'm sorry to hear about the poor support you receive from the medical experts. It's really a journey and many of us are struggling for so long. I can totally relate to that. But good to hear you are taking the initiative yourself. 


For me it's really a puzzle. After raising EPAP I felt quite good for about three days in a row. That doesn't happen very often for me. But guess what, the bad days followed just afterwards. 

After focussing on breathing events I guess I will give the PLMD another shot. I started taking magnesium threonate again and ordered some vitamin K2 (MK7) combined with vit D. 
I also read an interesting thread about a low oxalate/ salicylate diet. This guy found 90% relief of his PLMD by radically reducing his oxalate and salicylate intake. I'm willing to give it a try to see what it does. I've had loose stools for at least 20 years now so I wouldn't be surprised if it's some nasty kind of food allergy that's the underlying root cause for me.

Take care!

[Sleepy Quixote]

@permabear

Very interesting, on the EPAP adjustments, improvement then relapse. It's pretty much the same for me, I can make any change (reasonable changes) and see subjective improvement for a few days then decline.

mag,k2+D3 is in my regular rotation.

Absolutely will be looking into low oxalate/ salicylate diet today sounds promising! I too have suffered poor digestion and loose stools for decades, going gluten free for the last three years has brought me as near to normal as I could ever imagine, but still have flareups and bouts of needing to find that restroom immediately. LOL.

The way I discovered the gluten issue was to go on an elimination diet to narrow the possibilities, when it came time to start adding back in types of food, gluten made quite an explosive entrance.

Best!

[permabear]

I've done several dietary trials over the years but never found the culprit. Even glutenfree didn't do much for me. The oxalate/salicylate free diet sounds promising enough to give it a try though. 

Baseline story is that these substances could inhibit the iron acceptance on cell level. So you can have excellent iron/ferritin levels in your blood while your cells are desperate for proper iron supply. I didn't check it, but if true the relation to PLMD sounds reasonable.

I did check the oxalate levels of my regular diet and they are pretty high. Even my last elimination diet was high in oxalate starting from day one (I ate just carrots and celery at that time).

No guarantees of course and everybody is different, but I'm ready to try it. Allegedly, the results should be noticeable within a few days.
Cheers!