New to CPAP - Need advice!

[avaholic]

Hello,

This is my first post - please be patient and kind!

I am a newly diagnosed patient with 'extremely severe sleep apnea.' I've always had breathing issues as long as I can remember. I always breathe with my mouth open because my nasal passages just don't give me enough air. I snore 'like a freight train' per my wife who has also told me forever that I wake myself up gasping for air. In the early 2000's, I had UPPP surgery to 'help with my bad snoring and breathing issues.' I wish I'd understood the non-surgical options then but I didn't so we'll just leave it at that. I can't add the thing back, LOL. 

I finally had a sleep study performed on August 17th and the results were a bit alarming. As you can see from the attached sleep study, I had an untreated AHI of 102! Once CPAP therapy was added during the test, my AHI went down to 2.3. My doctor diagnosed me on Tuesday August 21st with 'extremely severe sleep apnea' and prescribed a 'home autoCPAP at 12-18 cm H2O pressure.' When I called the DME, the only option was Philips products becuase of contract related issues with ResMed.    ?? 

I received a DreamStation Auto CPAP w/ H/HT on Monday August 27th. The mask that was used in the sleep study was the DreamWear large Full-Face pillow and was the one that the DME ordered with the unit. When I picked up the machine, the tech was not very helpful and said here it is, here's how you turn it on, here's how you adjust your mask, etc. When I asked to try other masks, she told me that 'this was the one that was ordered for me.' No measurements were taken and I tested it in the office with pressure for all of maybe 2 minutes. Note that that thanks to the Provider manual you sent me, I was at least able to verify the CPAP unit had '0 hours on the blower.' The tech acted as if she didn't know what blower hours was and she was surprised that I knew how to get into the provider settings. At least it was new!

I tried to 'use' my new CPAP device and mask on both Monday and Tuesday night and just had a really horrible experience. So much so that I woke up several times during each night to take the mask off because I felt like I was suffocating.

Wednesday, I called the DME and basically demanded that I be seen to help with the whole mask situation. Long story short, the DreamWear mask was totally wrong for me. It was way too large as was its headgear. The tech that I worked with this time was very helpful and said she wasn't sure why in the world I was given that mask at it was clearly too large. She allowed me to test several others at pressure and I agreed that the ResMed AirFit F10 felt the best. Wednesday night my experience with the CPAP was better and I only woke up once to go to the restroom. I also did not use the Ramp feature. I immediately started therapy at 12 cm H20. I know its going to take time to adjust to all of this new stuff but I just want to make sure I'm doing everything I can to be successful with treatment.

I do have some concerns about what I'm seeing in my SleepyHead data.

Why are there so many CA's? The sleep study showed very few CA's compared to OA's. 

Why is the snore graph blank when I have a Vibratory Snore # listed?

I know that going from AHI 102 untreated down to AHI 10 treated is better but is there something else I can do to dramatically drop the AHI even further? How was AHI only 2.3 at the testing facility? I have been having horrendous headaches each day this week since starting treatment. Its a bit better today but I still have one.

What is the best way to take a bathroom break at night if needed? Do I need to turn the therapy OFF? Or is using the Auto OFF function on the machine OK? 

I've attached screenshots as requested. Note that there is NOT a Flow Limit graph to add. Not sure what 'Respironics includes Flow Limitation in Events' means exactly. I've also attached the sleep study.

Any comments or suggestions would be most appreciative!

Thanks,

Chris

Monday night
   

Tuesday night
   

Wednesday night
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Here are the Aug 27-29 Daily Reports from SleepyHead if needed. It seems there's much more info on the printed report than the screenshots...??

Why do you prefer the screenshots rather than the report?

Thanks!

Chris

[Walla Walla]

Sometimes CA events will show up as people's bodies are adjusting to the treatment. One step that may or may not help is to turn off the flex and see if that helps at all. Your obstructive events might be reduced if you use a soft cervical collar. Sometimes clusters of events can be caused by your chin tucking down and cutting off your windpipe. If this is the case than the collar may allow you to reduce your pressure which might also help reduce the CA events.

As far as the snore chart. It only records the V1 snores and you didn't have any of those. The VH2 snore chart is pretty unreliable and it's best to just ignore it and turn it off.

[allanri]

I think one reason screenshots are preferred is because they include summary data as well as the key graphs.  For example, I can see that on one of your nights, your 90% leak rate was 41. That’s quite high. Machines can compensate for some leaks, but not that much. That might be one reason your AHI isn’t lower ... the machine is struggling to deliver the pressure to deal with your OSAs, but it may not be able to because of the leaks.

Headaches could be a sign that your mask isn’t venting properly; I’ve read that if your mask is not able to fully expel the CO2 when you breath out, you might get headaches.

As for what to do when you go to the can, let me know if you find out!  I’ve wondered about this too.  

[sheepless]

you can use auto off if your machine has that feature. I prefer to switch mine off to avoid the noise of rushing air and the possibility the machine will record a big leak. whatever time it takes to auto shut down will dilute your ahi calculation. once a night may be negligible but some of us like me wake up a lot.

[allanri]

Does leak rate figure into AHI? I thought it was just the sum total of all apneas hypopnea, etc. divided by the total hours of sleep?

[sheepless]

if you're asking me, no, the leak rate is not part of the ahi calc. I suggested 2 things: the leak might be recorded or 'flagged'; and the time between removing the mask and auto off might be included in the ahi calculation. the length of time it runs til auto off, if it is even counted, is probably negligible unless one removes the mask as often as me each night. just saying what goes through my mind leading to my preference for switching the power button to off whenever I'm awake for whatever reason.

[Bruce1804]

I'm also new and just trying to learn all this so don't take much from my observations. I found this and the replies very helpful and interesting. I'll be reading more as more comes in and looking forward to the answers to your questions. As for myself I now turn CPAP on and off if I get up for any reason. That gives me a clear record of the times on the chart. For me that is helpful because I found out about the Apnea as a result of a prostate diagnosis and the urologist requested a sleep test prior to taking more drastic steps. So I have to get up from 3 to 6 times or more each night and seldom get more than 2 hour sleep periods. Of course I know drinking any liquid during the evening makes those times worse and if I have a few beers with friends then it gets rough. What I didn't know until today was how much alcohol effects apnea. Now I'm beginning to see why my Sleepyhead chart is so different from night to night and turning it off when not using it really helps me see what is happening. I'm thinking this information will be really relevant if or when I finally go back to the urologist. May you have good progress and thanks!

[avaholic]

Well Friday night I got below AHI 5 @ 4.59 and I almost slept a full 9 hours without waking up! I haven't done that in a very long, long time! I know that many docs say anything below 5 is 'successfully treated.' I'm not sure that my doc is like that yet because I haven't even had my first 1 month follow-up appt. But does anyone have suggestions on what to say or how to tell them I want/need a much lower AHI? I mean are the research studies that show I should have numbers lower then 5? Sunday night was even better at 2.49 but then it went up again last night to 8.93.  ??

I changed the FLEX to 1 and it was MUCH better. It's odd because the manual says the higher numbers provide additional pressure relief. I guess maybe its counter-intuitive.

I also notice I have a tremendous leakage problem. I saw that people are using cervical collars or Dr Dakota type products to support their chins. I'm scared that I'll freak out while sleeping because I can't open my mouth to breathe. Is that a valid concern? or just me worrying for no reason? I've ordered one of the Eliminator neck supports from Amazon to hopefully help with this issue so guess I'll find out soon enough. Any other tips on correcting this huge leakage problem?

These up and down AHI readings are kind of frustrating though. AHI 4.59 Friday night, 8.10 Saturday night, 2.49 Sunday night, and then back to 8.93 on Monday night. I notice that under the Session Information section there are multiple sessions listed for most nights. For instance, last night there are 4 shown; 1 - 47m, 2 - 33m, 3 - 2h13m, 4 - 3h1m. Is there an explanation for this session section? How about a legend for the colors shown? I did get up at 10:23 and 10:57 to adjust my mask but I know that I was asleep at some point during the middle yellow section lasting 2h13m. Why the break in those last 2 sessions? I did not get up during the middle of the night at 1:13 am.

Friday
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Sunday
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Monday
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[sheepless]

it's interesting that the phantom session breaks occurred all three nights within 2 minutes of each other. interesting too that leak rate graph breaks at those times as well. however the next session begins at almost exactly the same time as the previous session ends so there is no break. on monday the phantom break occurred betwixt a couple flow limitations and at about the same time as a ca. thought the lack of flow during an event might explain it but I don't see similar on the other 2 posted charts. it's a mystery to me.

you have a variety of things going on in those charts. you're still pretty new to this so things may settle down, especially with guidance from the more knowledgeable types here. as a recent convert to asv I may be too quick to see it as a solution for others but if your charts look the same a month or two from now, you may need to consider alternative machine types/modalities.

you won't have any trouble opening your mouth with a collar on. to my knowledge, only taping might be a concern in that regard and tapers tell us how to apply the tape to minimize that concern. you'll have to search the forum for more info on that; one easy if more expensive solution is somnifix tape which I've read is easily removed and pre-slit in the center as failsafe

[avaholic]

"you have a variety of things going on in those charts." Can you please explain what you mean by that?

Last night I had a little better leak rate. I also notice there is a break in the sleep session again. I was definitely asleep at 1:14 am. Is there a setting in the software that splits the sessions at a certain time of night?

It appears that the attachment limit is per thread NOT per post. I'm already at 3.48 MB of 4 MB in this thread. What do I do when I need to add more screenshots? On the tips page it says to have 'one main thread per user.'


Tuesday
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