HELP WITH SLEEP STUDIES PLEASE

[Johnny Bravo]

Hi:

Ive suffered with severe untreated sleep apnea/UARS for 25+ years. Ive never tolerated PAP, all the troubleshooting, nor it makes me sleep any better. Have never used it long term. I have chronic severe insomnia without PAP, let alone without. I have to take sleep meds. Ive tried many things, specially oral appliances and MMA surgery, without success. Because im almost bedridden with severe chronic fatigue and other things and not knowing what else to do, I've thought of using PAP again. But I just dont know which machine or pressure to use. I was diagnosed different types of sleep apnea with sleep studies an titrations in my country (Colombia) and in the USA through the years. I do have a sleep breathing disorder diagnosed many years ago, I just dont know how to treat it. Ive attached in this post the 3 sleep studies I took in the US in 2008 and 2010.

This first one is a polysomnography (Columbus 2008) 
  COLUMBUS_1.pdf (Size: 489.22 KB / Downloads: 12)

This second one is a titration (Columbus 2008) 
  COLUMBUS_2.pdf (Size: 430.95 KB / Downloads: 14)

This third one is a titration (Stanford 2010) 
  STANFORD.pdf (Size: 518.72 KB / Downloads: 12)

Thy're in PDF format of several pages each, sorry. I just didn't know which pages to pick and show. I hope you can see them. 

I'm hoping someone helps me understand them. I know English and even understand sleep apnea technical English, I think, but I just dont understand sleep studies and doctors here have never explained them to me. After this I want to try start using PAP with Oscar, but dont even know which PAP to buy, the one I have is an older Sistem One bipap auto, part of the Respironics recall. I have another one, an older ResMed ASV. But that's for central and complex sleep apnea. The first 2 sleep studies diagnosed me with complex sleep apnea cause they showed treatment emergent centrals with CPAP and BIPAP, helped with ASV, that the other sleep studies here and doctors have denied.

I started testing positive for severe sleep apnea since I was very young and thin. Started out with 30 ahi now over the 100s. Many arousals/awakenings and hypopneas. No or few desaturations. Supposedly UARS, but that's so hard to diagnose.  But when I've tried to use PAP have leaks, mouth leaks, aerophagia, blocked nose/rinhitis/nose valve collpase, feeling chocked exhaling, not feeling enough air, feeling too much ir, not being able to fall asleep with PAP, not sleeping better with PAP, not knowing what machine or pressure to use. I'll post other sleep studies I guess if this post has any answers in which my apnea is even worse after surgery and the report of other titrations that I remember have been 17, 12 and 10 of CPAP pressure in 3 different ones.

I can't think of anything else to say to summarize my long severe story.

Please help anyone if you can. Please tell me any insight, any data, anything you see in the sleep studies. An opinion, anything. Thanks,

John.

[gainerfull]

Thanks for sharing your sleep study & titration reports but you may consider deleting them as they contain your personal information. Then, repost them with your personal information deleted or blacked out if possible.

How has your ASV therapy been for you lately? Seems like you sleeping at elevation plus ASV had you sleeping pretty well. Have you been able to recreate this experience at home? What are you doing for PLM (periodic limb movements)? Are you currently on any medications?

What is your daily nasal care routine? Saline sinus rinse? Breathe right strips?

If I were you I'd continue using the ASV at the recommended settings from your Stanford 2010 ASV titration, download OSCAR, use an SD card to record your sleep data and share a couple nights with us here so we can provide input and get you headed in the right direction. Believe me, I know how miserable it can be if you're not getting good sleep!

[Sleeprider]

Your first Columbus sleep study was a split study that found severe obstructive sleep apnea without therapy. The clinic tried CPAP using a Philips CPAP algorithm with CFlex of 3 and you responded with increasing levels of central events as pressure reached 8 cm with Flex 3. A BiPAP titration further increased central events, and the recommendation was made to continue with ASV. The second study again confirmed severe obstructive apnea without therapy. They titrated ASV to EPAP 8.0 cm with PSmin 5.0 and PS max 12 cm which resolved apnea and oxygen issues. The Stanford study found ASVauto therapy with EPAP min 8.0, EPAP max 13.0 and PS 4.0 to 12.0 was effective

With these findings I would suggest you focus on a Resmed Aircurve 10 ASV in ASVauto mode with EPAP min 8.0, EPAP max 12.0, PS min 4.0 and PS max 12.0. You have complications with periodic limb movement, and that needs to be dealt with separately from the positive pressure therapy. You will find Resmed is far more effective and faster responding than the Philips machines, and you should see near zero events. They kept giving you a Swift II nasal mask, and I used one of those back in 2008. Get a Resmed Airfit P10 or another nasal pillows mask and I think you'll be happy with that. I'm not sure if you're asking for help sourcing a machine or are just trying to clarify what you need for your doctor to order. You do not need another study. Let me know what questions you have on my interpretation, and I'll try to make it clearer.

[Johnny Bravo]

Hey SleepRider:

Yes I guess I need help buying that machine if I am to buy one. The Resmed ASV 9 I have, its sd card doesn't work. I dont know what to do if I am to try pap therapy again. I guess I can try the Resmed asv I have? but then I couldnt be able to keep track of the apneas via Oscar. Though I dont know how to use that anyway. I guess I also need help with that? Does anybody here help with Oscar? I mean I think I can install it but I've tried before and dont understand anything. I was gonna start using the Respironics bipap I have. That one its card works but I realized late its part of the recall. So im not quite sure what to do.

I could also post other sleep studies and titrations I took here after the ones I posted? They're in Spanish.

Is there a machine that does both ASV and BiPAP? Resmed or Respironics or any brand? I know there's this debate on what machine is better for UARS but I dont even know if I have it. it seems like I do. Did that Columbus sleep studies say that I have UARS? I think Dr mentions that. I was hoping you or someone would talk in more detail about like positional apneas, the hypopneas, arousals in what sleep stage or positions, if they're caused by breathing efforts or not, and if probably my rdi is a lot worse than my ahi and they didn't see it. Because of so many arousals/awkenings I know I have.

The plmd is a mystery. No doctor has talked to me about that. I also have a condition called sleep myoclonus for which I take small doses of clonazepam and Seroquel, otherwise I wouldn't sleep with or without pap. sometimes I can't fall asleep with pap and those drugs, but Ill try. In another sleep study (I think it was Stanford?) the plmd or alfa intrusions was mentioned by the technitian but never discussed. I also took a sleep latency test at Columbus that was positive but I didn't know what to do with that back here. it seems like the symptoms of severe sleep apnea which I have can mimic narcolepsy?

I can't wear nasal masks of pillows because of my nose issues and plus I have mouth leaks even through the lips not opening my mouth so I actually have to use a full face mask and tape my mouth or ill swallow air. but I guess I can try the mask you suggested for a while.

Do the treatment emergent central apneas actually show in the charts of the Columbus titration or its only in the report that it says so. Im thinking again of the other doctors that have denied this and that have said I have obstructive sleep apnea or UARS and should use cpap or BiPAP.

I can't think of anything else for now, thanks a lot for your help.

[Johnny Bravo]

Thanks for sharing your sleep study & titration reports but you may consider deleting them as they contain your personal information. Then, repost them with your personal information deleted or blacked out if possible.

How has your ASV therapy been for you lately? Seems like you sleeping at elevation plus ASV had you sleeping pretty well. Have you been able to recreate this experience at home? What are you doing for PLM (periodic limb movements)? Are you currently on any medications?

What is your daily nasal care routine? Saline sinus rinse? Breathe right strips?

If I were you I'd continue using the ASV at the recommended settings from your Stanford 2010 ASV titration, download OSCAR, use an SD card to record your sleep data and share a couple nights with us here so we can provide input and get you headed in the right direction. Believe me, I know how miserable it can be if you're not getting good sleep!

I dont use pap therapy at all. I can't fall asleep with pap. if I elevate the head of the bed the insomnia and sleep jerks are worse. that chronic severe insomnia with sleep jerks has been probably the biggest obstacle with pap therapy and in general with my sleep. For that (and I dont know if it also works for plmd I've never talked about that with any doctor, I dont even think I have that condition diagnosed) I take now dose of clonazepam (5 drops now, I used to take 10) and 12,5 mgs of Seroquel. I dont tolerate psych meds even though I need them so bad. ill have more sleep jerks and sleep paralysis and won't get up from bed the next day and will sleep worse and will even have nervous crisis.

I actually dont have a daily nasal care routine cause im almost bedridden with severe chronic fatigue and other things but I know I need it. Besides severe nasal valve colapse I also have sinusitis, allergies, reflux and MCAS symptoms. I tried all the nasal strips in the marked and didn't feel any relief with any.

Yeah that's the idea to try and use a pap machine and keep track of the apneas with Oscar. Ive just been stuck with that cause apparently my machines are old and I need to buy a new one, I dont know. Or I could use the ResMed ASV 9 I have with the settings of Stanford and try to use Oscar with it (though I remember the algorithm or brand is different and id have to make the translation, someone helped me with that long ago).

Thanks.

[Johnny Bravo]

Hey

thank you for your reply, I just re read it. Where can I find a cheap Resmed Aircurve 10 ASV second hand online without a prescription? The Resmed VPAP I have right now is old. its an S9 and the card doesn't work.

Thank you

[Deborah K.]

Have you tried buying and using a new SD card?  Maybe just the card itself is bad or simply full.  It can't hurt to try if you have not done so already. You would need a card that is up to but not over 32GB. You can get one cheaply online or at lots of stores.

[Sleeprider]

The S9 VPAP Adapt is a capable ASV device. What are your current settings? To get the SD card working, the first step would be to try a new card, but if you are looking for an updated, inexpensive machine, I suggest you keep an eye out on the used sale market. DotMed is a good place to look for the Aircurve 10 ASV, on a more secure marketplace. I have seen them on FB Marketplace, Offerup and Craisgslist. I use the SearchTempest search engine to look for devices over a wider geographic area. You need to use a secure payment method like PayPal, and not use the friends and family purchase option. Preferably transact in person to be sure the machine actually is what is being advertised and works. It's worth calling or messaging the online suppliers directly to find the best price. Most are constrained in advertising discounts on new machines. Supplier #2 used to have good prices, but is currently selling the Aircurve 10 ASV new for 2895 and used with warranty for $1999, so prices remain too high.

The Philips Respironics BiPAP AutoSV can be setup to act like an auto-BiPAP or ASV, but most are recalled or discontinued. That also makes them cheap if you're willing to do your own de-foaming. The Resmed Aircurve 10 ASV can work with relatively low pressure, but requires at least 5 cm of pressure difference between PS max and PS min. This works great to create a pressure "prompt" to breathe without the ASV taking over. We can also try this with your S9. Post your settings and what you want to accomplish, and we can probably make some progress even without the charts.

[Johnny Bravo]

Hey:

Thank you for replying. I got the SD card thing solved. Just had to format it, from the machine itself. It was asking me for it. Im just too bad with technology and can't think.

Ive used the S9 ASV for 3 or 4 nights and im already finding and remembering troubleshooting I forgot I had when I tried PAP therapy long ago (I've never used it long term and its the only thing I haven't tried if that makes sense).

With the help of a new online friend we discovered i feel choked with BIPAP cause I felt no air pressure even at high pressures and when the pressure goes down (EPAP), I feel like the mask sucks my air out and it takes too long to return to IPAP, so I feel choked again an like ill stay in EPAP forever. So I whenever I occasionally used my other machine, the Respironics Bipap Auto Biflex, I kept on setting it at high pressures and so I kept getting leaks and the mask was so uncomfortable and tight. And I still slept bad and used no SD card or Oscar.

So I showed him this post and he helped me out to do what you advised which to use the Resmed S9 ASV because of the whole central when on CPAP and BIPAP from my 2008 sleep study in the US, even though several sleep studies or doctors here in Colombia didn't pick up or see that. Even virtual doctors in the USA.

Ive slept to my surprise already 3 on and off nights with it and im not waking up like im dying, but still pretty bad. Almost no improvement, maybe a 10%? But that's something. I wake up dreaming a bit, and not so much in panic state and body pain. So it must be doing something but still far from ideal.

My current settings are the ones you advised here, but I changed the minimum pressure support to 5,5 since I showed I sent hin my SD Card data and he looked at it in Oscar and said I still had flow limitations cause the top of my breathing curves were flat, which showed flow limitations. Im repeating what he said, cause I have no idea about Oscar or sleep studies. He posted that Oscar Chart here with a link to this post but I think no one answered?

The good thing right of the bat was that I could feel better with the ASV just by putting the mask on, dont know why. No choking feeling even if I dont feel the air pressure either. I have some degree of empty nose syndrome, dont know if its due to that.

So, I dont open my mouth cause I tape it shut cause I get lips leaks with my mouth closed and have to use a full face mask. I've known this forever. I have terrible nose breathing, which also makes pap therapy hard. Besides also having severe soft palate and tongue obstruction.

The main thing now is, and its always been, I get mask leaks in my eyes, even before I lay down. I use a ResMed AirTouch (with the foam). So again I have to tighten it so hard for this leak in my right eye not to happen (or sometimes I can't even make it stop) that it gets too uncomfortable again.

And the other annoying thing I rediscovered/remebered is that even with my mouth tapped shut with my full face mask when im sleeping on my back my mouth still "opens" (with my lips sealed) full of air. When this happens for some reason the machine sends more air pressure, I think, and I wake up again in panicky mode unrested. I guess the leaks happen more with this? I dont know.

So I need either a neck brace (but I dont tolerate them I feel chocked and get severe neck pain), or an oral appliance to keep my teeth in grip so my jaw doesn't open (this ones I can tolerate somewhat). I dont tolerate the chin straps, they´re too tight and I still get leaks through my lips even with my mouth shut.

I dont have another mask and its gonna take some days till I get a nasal mask/pillows everyone recommends (though I know they're not for me but ill try it since full face masks are so uncomfortable).

So I have 3 different problems now. Full face mask leak in my eyes, air leaks through lips with my mouth closed (no nasal mask) and getting my mouth full of air cause my jaw/mouth opens even with lips/mouth taped shut. That's not even going into finding if my settings are right or not. I dont know if I should post last nights chart already but I dont know how to use Oscar.

Because I still woke up feeling so bad and frustrated again I remembered the full face FitLife mask and want to buy/try it. I know it sounds absurd, but again, im almost bedridden without treatment and desperate. Id have to order it online.

Then I accidentally saw again the My Tap Pap mask an US sleep dentist doctor had advised long ago. Its another seemingly absurd mask that only cones with nasal pillows and an oral appliance for you to bite on that I guess prevents you from opening your mouth/relasing your jaw (even with mouths closed/taped shut).

They also have a nasal pillow mask that you can mold to your nose with hot water and a mandibular advancement device. I wanna buy and try them all, but I think I just saw you have to sleep a doctor to prescribe one and or find a retailer. There's no here. Do you know anything about this? Can I buy that mask/thos products without prescription online without a doctor/prescription? Ill contact that US doctor and ask him about that.

I also wanna try the Oracle oral mask? I know these are crazy masks, but I guess after a lifetime of having severe sleep apnea and not using PAP and that killing me literally, I wanna try it all at this point. And also taking into consideration I seem to have so many breathing issues, issues with my mouth/troat, reflux, aerophagia, being sensitive, feeling chocked, having easy mouth and lips leaks. I have a hard time breathing, speaking, swallowing and speaking alone without PAP. Feel chocked in my neck from severe neck issues and from reflux in my trhoat almost all the time. This definitely makes PAP therapy hardest.

Do you still recommend the nasal pillow mask you recommended (can't remember the brand and model)? What can I do so I dont have lips leaks and the mouth full of air with lips closed? is it me or is there something in the machine settings that can be changed to fix this? Or a gadget I can use?

I guess this is more like an update of my I guess little improvement or current situation. Im a little hopeful cause I can feel a little bit of the improvement of PAP therapy or see its potential, but im again so frustrated with so many troubleshooting. I wish it wasn't that way and everybody used it and got treated easily. Or maybe its just me, im a severe almost bedridden case.

Hoping for your insights/help (please). Thank you!

P. My current settings are EPAP 8-12, PS 5.5-12. Should I figure out a way to upload Oscar data (with all the troubleshooting im experiencing)?

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I got the card thing solved. I just had to format it. im just really slow with everything. thanks!

[Sleeprider]

It will always be helpful for us to see the Oscar charts to more accurately help you. I'm glad you had a friend use our conversation to help set you up, and it doesn't surprise me that the settings EPAP 8-12, PS 5.5-12 are working well for you. With regard to a mask, I'm going to advise you not get a Fit Life mask. I own one that I bought in anticipation of nose surgery for rhinophyma, which meant nothing could contact my nose from bridge to nares. It is huge, and while it does equalize pressure over your whole face, it flexes with changes in pressure support. In ASV mode it would be pumping up and down on your face like a Harley motorcycle engine. (more graphic descriptions come to mind, but I won't go there). I think you would find it incredibly disruptive. I'm skeptical of the Tap Pap as well. I had to cut pressure support on my Vauto and that is only 4 cm difference, yours is 5.5 to 12. Take a look at some of the hybrid masks that use a nasal pillows under the nose and a mouth cup. Things to consider are the Resmed F30i, InnoMed RespCare, Mirage Liberty, and Philips Dreamwear full face. I am using the Resmed P30i nasal pillows, but if you leak from the mouth, that may not work for you.