My sleep is crap, doesn’t seem to be the machine, what to do?

[emmylouwho]

mper6794,

Thanks so much for your reply and offer to look at my graphs.  I would be interested to hear what's going on with you. 

I'm posting two shots of same night with all the graphs as you requested.

[emmylouwho]

Update:

I saw videos of different classes of PLMS that someone shared and I am very grateful. The class 4 video could’ve been a video of me sleeping and awake. I looked back at my sleep study and I’m angry the doctor never talked about my PLM score.  This has changed how I relate to my sleep and after reading online I’m seeing how it can really degrade your sleep, increase cortisol, etc.  I now think I’ve had it for a long time including RLS which I knew I had in my early 20s. Now I’m wondering if the wreck I had when I was 19 was also related to sleep disorder. I fell asleep driving 15 min home at 11:00 pm (sober, healthy teenager) and flipped my car 3 times, landing upside down.  I’m curious what else I remember now.

I’m still not ruling out machine induced insomnia since I did start back on my ASV in February and switched to nasal cushion which was a big adjustment.  It has gotten better since I switched over to Auto but I’m not sure if my settings are correct.

My sleep has continued to degrade and this last week has been the worst. I am a zombie. I barely made it through my work day. I’m just existing. For most nights I only got a couple hours of sleep.  

I saw my OBGYN on Monday and she was no help. I had low iron last summer and have wondered if it’s returned but she didn’t think it would impact my sleep and didn’t want to do blood work that insurance might not pay for.  I asked about perimenopause and she said it could be. I asked about the low dose progestin birth control I started in the fall and its impact on sleep. She said 25% chance it could be the cause. We can’t check particular hormone to see how close I am to menopause because I’m on the pill.

I was able to get a script from a different provider for something to sedate me enough for sleep (yes I know this isn’t solution or long term) until I can see my GP.  She also gave me Mirapex to try for RLS.
She did wonder if my body is doing this for some protective factor but I don’t know why that would be.
She gave me the name of a great neurologist in town but she thinks that wait to be seen will be over 6 months.
I quit my Adderall this week after reading stimulants can make RLS worse.

I tried the Xanax last night but it wasn’t enough to knock me out but for a couple hours. She said I probably needed to take the whole pill but I started with half.
I was amazed at the results with the Mirapex. My legs were calm and no tension. I don’t know the last time they felt this way. It was like a switch turning off around 7 am when the med wore off.  I still had horrible sleep from 2 am onward and feel just as bad today.
I don’t know what my GP will be able to do for me but that’s the only next step I know. My appt with the new sleep doctor in Nashville isn’t until September. I can’t make it until then. I’ll be on medical leave by that point which is scary to think about since I’m self employed.

[emmylouwho]

*looked back at my blood work from last September and my iron was 42 ug/dL, Ferritin was 20 ng/mL.

[mper6794]

Hi, Emmy
_ sorry for the delay. I had not realized on your long history, downhere; so many good opinions. Then I had to try to explore your history since the very beginning. Still exploring;
_ beginning with your sleep studies: they indicated you indeed have lots of arousals, and you had ZERO REM stages. And, looking at on your waveforms right above, they suggest to me you still don't have REM stages (even though these interpretations are strongly jeopardized while dealing with this complex machine, the ASV);
_ what would be the reasons for you not having REM stages? Yes, could be PLMS (yes, once I posted those Dr. Hooper’s videos, long time ago) not allowing you cycling/digging deep, properly among sleep stages;
_ no, your waveforms, does not look like mine: I clearly cycle among sleep stages. Just have REM interrupted very often, with incomplete stages; waking up at the very picks of bad dreams/nightmares. Still have not understood such wake ups and how to properly correct them (if one day would be possible). The AirCurve 10 allowed me to go up to correct pretty much everything on my sleep (maybe at 95% level), breathing wise. Not know much about ASV, yet I am afraid I have never seen a success case on treating OSA with this machine (see, for instance, success histories here in the Forum), and some MD consider this machine as a major sleep desistabilizer;
_ I do have RLS since 7 years old, and you might know: around some 85% of RLS sufferer, also have suffer from PLMS. Lots of discussions out there on whether or not PLMS interrupt sleep, by provoking arousals/awakenings; it looks in some case it does others not. In my case, I would only have just mild and sporadic PLMS, maybe not enough to disrupt my REM stages (in NREM, for sure, no problem). Just to compare, could you post a 10min-window just before your main wake up at, say from 1;48 to 1;58 am?
_ Currently, I am not in any medication at all; doing rather well without them, by using alternative techniques from Energy Medicine and energy Psicology, Meditation (I know, it might looks weird at first , sleeping in stages, etc, to manage RLS. However, I have long history on using Clonazepam (maximum dose 0.6 mg), this drug saved my life and career for some few decades. Dopaminergic, you would have to go carefully;
_ https://healthunlocked.com/rlsuk. There is this 20,000 member Forum on RLS and PLMS. Sometimes I post there. Good expertise and references on success and failures on this issue.

All the best and good luck

[Sleeprider]

Emmylou, something you mentioned earlier in this thread just caught my attention. You said you were issued the ASV because you originally suffered from mainly hypopnea, but experienced treatment emergent centrals on CPAP. Some individuals with that problem can resolve both the hypopnea and the CA with relatively low PS on ASV. When breaths are below the target volume, or breaths are missed, the ASV responds with pressure support to increase the volume or maintain the rate of breathing. You currently use PS min 3 and PS max 13. Have you ever experimented with lower PS max? It's possible you could set PS mas as low as 8.0, and the PS would be less disruptive to your sleep, while still stimulating you to breathe or increase volume, but not doing all the work for you. This has worked for a number of members, and the only way to know if it will work for you, is to dial back PS and see if events emerge and evaluate comfort. If this PS max of 8.0 allows too many events, we just titrate back up to see where it works. Think it's worth a try?

[emmylouwho]

mper6794, 

Thank you for your reply and I am not concerned about your delay.  I just feel really thankful.  You are correct I had no REM sleep in my diagnostic study.  I had attributed it to such a bad experience- too hot,  had to sleep in clothes, bed was uncomfortable, wires were uncomfortable, etc.  Just for note- when I looked back at my diagnostic study I first shared, I accidentally attached maybe the second page that was from a titration study so I can share the correct one if needed. I think the only thing to note was it showed I had 65 central apnea with the titration so it could be confused I had that many in my baseline study which I had 5.  I went through 5 sleep studies including the baseline study.  It was a nightmare. 
I am so curious how you can tell there's no REM sleep on the flow rate? I really want to learn this stuff but it seems so complicated.  My Apple Watch says I do get some REM sleep but I am not sure how accurate it is. 
Thanks for sharing the link for the forum.  I will definitely dive into it when I have time.  I'm trying not to be too obsessive with research in fear of this making my anxiety worse around my sleep. 
I really appreciate you sharing your journey because some of it does sound similar to me.  This PLMD/RLS thing has blown my mind and I feel kind of silly for not connecting the dots earlier.  I am anxious about taking the Xanax and the Miriamax but last night I actually slept like a normal person for 9 hours!  

Here is the view you requested for that particular night. I have a lot of stretches like this that look sort of similar to periodic breathing but not quite that intense. I've wondered if that's an issue.  I might look through and see if I can find another night that I remember feeling more problematic.

[emmylouwho]

Hi Sleeprider,

I haven't experimented with much since changing over to Auto. I was scared to change much since you had said my data looked great when I was on straight ASV. I just had to give Auto a try since I was still feeling like the ASV was running away with me every night since I changed to a nasal cushion and I couldn't blow into it anymore to make it stop like with a full. I am sure there is room to dial it in so I am okay with dropping the PS down to 8. In my original study I had 5 centrals, 6 OAs, 1 mixed and 169 hypopneas. Then I had all the emergent centrals with CPAP, bilevel, and ST. Anyway, you probably saw that somewhere in my posts since you were the one that helped me advocate for an ASV. I've often wondered if I still need an ASV but I'm not going there yet. I'll give the PS max of 8 a try tonight. Thank you!

[Sleeprider]

I'm looking forward to seeing the results and hearing your feedback. I hope you find it more restful.

[mper6794]

Hi, Emmy
_ Just to share, I modestly think PAP therapies should target first of all stable breathing and comfort. On machines, however, I can only talk about the ones I went through on my journey: Brick CPAP (lost 1 year and time with this machine; limited for many things), APAP (did not work as well, fortunately, lost just 1 month; limited on maximum PS), then, finally, the best one, the BIPAP aircurve 10. Every CA’s I faced during my journey were not primary (like in periodic breathing), rather just false events following up toss and turning, back to sleep transitions following arousal or awakenings, and excessive pressure support;
_ REM identification: pretty easy and straightforward most of the time, not only my waveforms (see attached, from my last night), but also and hundredths of others in the Forum (quite often properly associated with  “positional apneas” downhere). You would only have to train your eyes, and, mainly, pay attention on periodicity (in general from 70 to 100 minutes), flow rate (expansion, contraction peaks, certain instability), tidal volume (tend to get lower than the median), respiratory rate (tend go higher than the median – plot your reference line -, always more variability than the other stages), and, of course, the patterns of dreams you might remember, and so on. If want more details I could suggest literature on this issue;
_ yes, the minute window, suggest you did have typical peaks on flow rate and pressure, with typical periodicity, eventually associated with PLMS. It looks the PLMS would not be associated with arousals; it is difficult! (you could eventually observe on more details on expanded vertical scale of your tidal volume and other waveforms, to conclude something… );
_ yes, Xanax/benzo may help a lot, as per my experience of some 3 decades;
_ you may eventually want to see this live, patroned by RESMED, in which interesting different opinions/approach to treat apneas in general, conveyed by Drs. Barry Krakow and J. Thomas (from 58 minutes ownward), on ASV, medications, etc... https://www.youtube.com/watch?v=Syv7YcHb...z&index=48
 
All the best

[emmylouwho]

Alright Sleeprider, 

Here is last night. I think it's better?!  I'm still exhausted this morning but I don't remember ever having too much pressure when I was awake.  For some reason I don't remember, I took it off around 4 am and didn't put it back on.  Maybe pressure increasing up to 14 woke me up and then I was awake for awhile. 
 I've noticed my heart rate drops when I take it off which has never made sense to me but also my HR is higher in first hours of the night in general then slowly tapers off as the night goes on even with ASV. 
 I noticed my flow limits were much much less last night and the night before and my tidal volume seemed lower and more steady.  Is that a good sign?  Also wonder if the FL are less because I started the medication for PLMD.  I am moving so much (I think) less the last few nights. My EPR % was also lower the last two nights.

Thanks so much,
Emmy