[Treatment] Newly diagnosed OSA/UARS/PLMD, seeking help to adjust to treatment

[ADreamofSleep]

Hello everyone,

I have struggled with fatigue and anxiety for most of my life, now in my late 30’s, I have been diagnosed with Sleep Apnea/UARS/PLMD.  My summary of my sleep study is below:

Total sleep time 362 mins
Sleep latency 12 min
REM latency 59 mins
Sleep efficiency 88%
Sleep maintenance efficiency 91%
Stage 1 2.8%
Stage 2 47.3%
N3 sleep 17.9%
REM 32%
No noted parasomnia
58 arousals
20 awakenings

Sleep Disordered Breathing
0 OSA
1 Mixed
9 Hypoapneas
146 RERA
RDI 25.8/hr
AHI 1.7
Initial saturation 94%
Lowest saturation 88%

Significant periodic leg movements





Titration Study - Phillips Dreamstation Auto, Dreamwear nasal mask


Total sleep time 205 mins
Sleep latency 47 minutes
REM latency 122 mins
Arousals 154
Awakenings 43
Sleep efficiency 61%
Sleep maintenance 73.7%
Stage 1 11.8%
Stage 2 83.6%
N3 0%
REM 4.6%


Sleep Disordered Breathing
0 OSA
1 Central
0 Mixed
1 Hypoapnea
18 RERAS

RDI 4.8
AHI 0.5
Saturation 94%-92%

Pressure titrated from 5-7

Significant PLMD noted
Cardiac arrhythmia present



Clearly the initial study suggests UARS and PLMD, the CPAP titration study was one of the worst nights of sleep I have ever had, I slept for two days after that.  

I was given a Resmed Auto 10 machine and found the Dreamwear Full Face Mask to be quite comfortable.  Pressure is auto 6-12, EPR 3.  Most nights I score 100 on the “myAir app”.  I’m aware this app is mostly useless, but it is all I currently can use, as I don’t have a PC to use Oscar on yet.  

My issues:
-CPAP treatment hasn’t resolved fatigue or mental symptoms, possibly made them worse
-Lots of gas, bloating, and frequent bathroom use the morning after using CPAP
-Early waking now, morning anxiety (this is new)
-Noted SWJ episodes from about 4am onward. 

Questions:
1. Are there some settings I can try until I am able to use OSCAR? Was thinking of using a fixed pressure and lowering EPAP.
2. What are my treatment options for PLMD?  Doc tested iron, and that isn’t low.  I’m a bit scared to mess with something like Requip.  Lyrica and Klonopin were suggested as well.  

Thanks for taking the time to look at this, and for having this message board.  I look forward to any input that you provide.  Glad to be here!

[sheepless]

considering you had lots of RERA and virtually no apnea, there's a good chance the plmd is the root of your problems. ask for that to be treated and you may not even need cpap. I tried gabapentin but have been taking ropinirole for more than a year with guessing an 80% reduction in plm. some of the fine print on the rx sheets sound scary and I guess there's some chance for bad things but to my way of thinking sleep is so fundamental to health that some risk to improve it is acceptable. besides, I was desperate. I got my ahi down to under 1 and still felt awful until I started to see some improvement with the plm. and yes, pap's response to plm breathing can be counterproductive. with apap I often had runaway pressure as a result. search my username to see screenshots my of plm flow rate waveform. see if you see it in yours. or let me know and I'll post another here.

[ADreamofSleep]

considering you had lots of RERA and virtually no apnea, there's a good chance the plmd is the root of your problems. ask for that to be treated and you may not even need cpap. I tried gabapentin but have been taking ropinirole for more than a year with guessing an 80% reduction in plm. some of the fine print on the rx sheets sound scary and I guess there's some chance for bad things but to my way of thinking sleep is so fundamental to health that some risk to improve it is acceptable. besides, I was desperate. I got my ahi down to under 1 and still felt awful until I started to see some improvement with the plm. and yes, pap's response to plm breathing can be counterproductive. with apap I often had runaway pressure as a result. search my username to see screenshots my of plm flow rate waveform. see if you see it in yours. or let me know and I'll post another here.




Thanks for reply.  My Dr. is suggesting the same things you are, they have seen my AHI below 1 and good compliance with zero symptom resolution.  It would be great if you would post a screenshot of your plm waveforms, then I will have it in one place to reference once I get Oscar running.  

Are you saying there is a noted difference in how a PLM waveform looks vs the RERA/UARS waveforms that Dr. Krakow has made popular?  That would be helpful to sort out my issue.  I’m amazed that the PLMD can trigger such a breathing and arousal response.  Do they have any idea what causes it?

[kappa]

I agree with sheepless. I too have significant PLM and am scared to mess with the dopamine agonists... while they seem to work for most people there is a high risk of augmentation creeping in at some point. I used Clonazepam (Klonopin) for a while and it worked great at reducing my leg movements (to the point where my titration study had almost no leg movements) but my sleep doc and GP advise against using it (addictive, blah blah) and I did feel moderately sleepy during the day using it. I'm now titrating in Pregabalin (Lyrica) and that seems to be working reasonably well at controlling the leg movements and I'm feeling more alert. I find the rlsuk forum on healthunlocked to be a great source of information about different peoples experiences with these drugs.

Do you have RLS as well? (I think I have very minor RLS during the day/evening.)

[ADreamofSleep]

I agree with sheepless. I too have significant PLM and am scared to mess with the dopamine agonists... while they seem to work for most people there is a high risk of augmentation creeping in at some point. I used Clonazepam (Klonopin) for a while and it worked great at reducing my leg movements (to the point where my titration study had almost no leg movements) but my sleep doc and GP advise against using it (addictive, blah blah) and I did feel moderately sleepy during the day using it. I'm now titrating in Pregabalin (Lyrica) and that seems to be working reasonably well at controlling the leg movements and I'm feeling more alert. I find the rlsuk forum on healthunlocked to be a great source of information about different peoples experiences with these drugs.

Do you have RLS as well? (I think I have very minor RLS during the day/evening.)

I would feel most comfortable with Lyrica, although there are some debates on if it is truly and less physically addicting than a benzo.  Thanks for the tip on the rlsuk forum, I will look into that.  

I have had temporary moments of RLS, when I was taking testosterone, I would notice that if I was on a transdermal, it would creep up.  My theory is that the dopamine boost from putting the test cream on early in the morning would boost dopamine, then I’d crash by bedtime and see RLS symptoms.  

I also have a minor disk issue in my back and when I deadlift or squat, I will end up getting a similar RLS or sciatic feeling in bed as well.  That being said, it is rare and I wouldn’t say that I’m a true RLS sufferer.

[sheepless]

here's a screenshot of my breathing response to plm. more or less uniform pattern of inhale spikes with relatively lesser breaths in between, many of the exhales (under the zero line) blackened not by snores but by moans/groans protesting the plm insult. sometimes punctuated by apnea events, more often not, lately at least. 

in my very limited experience the medical folks aren't easily convinced to acknowledge and treat rls/plm, I suspect because little is known about it. treatment appears to be a matter of trial and error.

interesting you mention your back. I often have rls before bed. initially I would move my legs around and clench the leg muscles to try to alleviate the restlessness. more recently I associated the leg feelings with lower back discomfort. and I've noticed involuntary jolts, contradicting my former assumption that unlike plm, rls movement is entirely voluntary. I now believe the rls feelings in my legs originate from the uncomfortable back pain that extends across the lower back from hip to hip. clenching or otherwise stimulating this area is more effective than moving the legs. I'm also aware of the restlessness in muscles that travel from this band across my lower back down through my glutes to the backs of my thighs. it all seems tied together with respect to rls. of course I have no consciousness of the plm so obviously can't assess that.