First night on CPAP did not go so well :Update- a breakthru!

[lazer]

Starting to notice a new trend the past several nights and haven't been feeling as rested come morning. I'm waking up with my mouth partially open and air rushing out of it. I did speak briefly over the phone with the DME last week about this and he mentioned I might need to try a different style of mask instead of the nasal pillows. The problem is, we are still waiting for approval for the insurance coverage and the DME found out that the pre-auth needs changed to indicate service at their place rather than my doctors so more hoops to jump through with that yet. He still affirmed that either way, they will only bill me for the mask and hose and to keep using the "loaner" machine at no charge for it.

Should I start trying to tape my mouth shut meanwhile? Found some mentions of this on the forums but a little unsure as to how to go about this... I'm also aware of "chinstraps", but trying to keep the out of pocket down a bit in case I have to end up buying an APAP on my own.

[Pugsy]

Should I start trying to tape my mouth shut meanwhile? Found some mentions of this on the forums but a little unsure as to how to go about this... I'm also aware of "chinstraps", but trying to keep the out of pocket down a bit in case I have to end up buying an APAP on my own.

Taping really isn't nearly as scary as I first thought it would be...2 inch blue delicate painter's tape..does a good job.

Chin strap..no need to spend the bucks to start with. Try a homemade chin strap first. Easiest and cheapest but perhaps not quite wide enough (that is what I found) was a sports sweatband used under the jaw/chine and overhead. $1 at Walmart in the sports aisle. Also...3 to 4 inch ace wrap will offer firmness and support with a little "give" in it for comfort. Basically anything that will offer support to remind the mouth to stay shut. I can tell you from personal experience that it is preferable to a full face mask in regards to comfort. You can also utilize the mask trail available and the cpaplibrary site for trying a full face mask without breaking the bank. $14 for a week trial pays for mailing the mask to you and mailing back ($7 each way). I would heartily recommend it especially in your situation.
http://www.cpaplibrary.com/mask-trials Disregard the mask exchange thing as that pertains to purchasing a mask from them. There is no need to purchase a mask to utilize the free mask trial.

Check your leak line for any evidence of large leaks and if you are doing any significant mouth breathing they will show up as large leaks. Minor mouth breathing may not impact therapy directly but it might impact the quality of your sleep which then of course can impact how you feel. I found that after a couple of months of taping my mouth learned to stay closed for the most part and I know longer do anything to keep mouth shut and any minor mouth opening doesn't show up on my reports so I don't worry about it.

[lazer]

Thanks Pugsy, I might give the "Sports band" a try first. I'm a little concerned of taping because of my mustache. I would think that would be a big "Ouch" removing every morning - And that is the reason my PCP suggested I go with the "nasal pillows" is because of my mustache and goatee so I'm a little unsure whether I could get any other type of mask to get a good seal without getting the razor out

Here's an example of the latest trend and where my leaks are going lately come late into my sleep and early morning. I also noticed some drool on the pillow this morning...

[Pugsy]

Your leaks are still well within acceptable range and part of that increase later in the night is actually because of the increased pressure...remember as the pressure increases the intentional vent rate will increase also....so all that isn't just leaks and even if it was...it barely reached 45 L/min which is well under the 90 L/min range where large leaks are flagged.

Drool on the pillow? Fairly common and not a huge problem. Minor mouth breathing and opening (as long as it isn't prolonged) is not going to be the end of the world.

Forgot about the facial hair. You might give Poligrip strips a try.

Personally....I have leaks worse than yours every night and I don't worry about it because for the most part they rarely reach large leak territory and unless they were disturbing my sleep I wouldn't do more than shrug my shoulders.

Now if you think that something is disturbing your sleep...then you might try to fix it but based on this report and your others I don't think any mouth opening is significant enough to negatively impact the therapy to any great extent.
Instead I would focus on other possible contributing factors which affect the way we feel and I think we have discussed some of them...especially meds. Finally, we simply don't sleep the same each night for any number of reasons and we don't rest as well some nights.

I don't see a full face mask making any huge change in leak line nor impacting how you feel and I can pretty much assure you that fitting a FFM is going to be much more of a PITA but up to you how you want to try to improve things.
SleepyHead makes these leak lines look like mountains and they simply are not all that significant.

[lazer]

Your leaks are still well within acceptable range and part of that increase later in the night is actually because of the increased pressure...remember as the pressure increases the intentional vent rate will increase also....so all that isn't just leaks and even if it was...it barely reached 45 L/min which is well under the 90 L/min range where large leaks are flagged.

Oh, ok. I had thought the increase in pressure was chasing the leaks...

Forgot about the facial hair. You might give Poligrip strips a try.

lols... Uhm, stupid question: Do I put these on my lips?

Now if you think that something is disturbing your sleep...then you might try to fix it but based on this report and your others I don't think any mouth opening is significant enough to negatively impact the therapy to any great extent.
Instead I would focus on other possible contributing factors which affect the way we feel and I think we have discussed some of them...especially meds. Finally, we simply don't sleep the same each night for any number of reasons and we don't rest as well some nights.

Sometimes I wake up lately with some air rushing out of my mouth but not always as far as waking during the night. I did briefly get up to visit the bathroom about 2 1/2 hours in last night because I was outside a lot earlier in the day and it was 89degrees and I think I had some heat exhaustion because I literally ran out of energy for a few hours then I drank 3 or 4 bottles of water in the evening and was also feeling nauseated before bed.

I don't see a full face mask making any huge change in leak line nor impacting how you feel and I can pretty much assure you that fitting a FFM is going to be much more of a PITA but up to you how you want to try to improve things.
SleepyHead makes these leak lines look like mountains and they simply are not all that significant.

Thanks Pugsy, Really wasn't looking forward to the FFM route so I'll continue with the tips you've provided and not give up on the "nasal pillows". All in all, I'm not feeling anymore discomfort using them, it was just the leak graph, occasional waking, and "less rested" feeling I seem to have started feeling again as of late that had me getting concerned that the nasal pillows were still going to work out.

[Pugsy]

The machine might have been chasing the leaks but if it was....it sure wasn't chasing them a lot. It is impossible to tell who came first the leak or the pressure due to perhaps an event need.

The polygrip strips...yes you just put a strip between your lips. I couldn't find the strips when I tried it so I used the paste stuff. A little messy and tasted rather nasty but it does seal fairly well. Not a huge effort is needed to break the seal but it does require an effort.
Wet your lips, place a strip between them and hold a few seconds.

[lazer]

Just another update. I didn't try any of the mouth seal techniques yet but last night instead of taking my 100mg of 5-HTP which I had actually ran out of and Walmart didn't have any more in stock, I tried something new called "Sleep Slumber" - I googled a link for it: http://www.schiffsweetslumber.com. Any thoughts on this supplement? It has 6mg of Melatonin in it and I was worried that I wouldn't want to get out of bed this morning but so far so good and I seem to have slept a little deeper and had one of my lower AHI's to date.

[pats]

I am always careful to not remove the SD card while the machine is writing to it..it doesn't take long if you watch it..but despite being careful sometimes that file gets buggered up. It is a pretty large file and likely just got corrupted somehow.

I take two additional precautions:

1. I disconnect the machine at a time when it does not say it is working on the data card, and then take out the data card.

2. I lock the card, so that it cannot be written, as soon as I take it out of the machine, and unlock it before putting it back in. I don't let my computer touch it without it being locked.

I don't know whether either of these does any good.

[lazer]

Today I was at my new DME that has provided me with the APAP and mask supplies to give him the SDCard and sign some papers so we can finally get things rolling through insurance as they had to have the "Pre-Auth" rewritten once again to show them as the provider per my doctor which was accomplished and re-sent to us from insurance.

Anyhow, I got to talking with the man who has been working with me about the process and the hopes of getting not only the initial supplies paid for by the insurance but ultimately getting an APAP paid for by insurance beyond the 1 month pre-auth and he said that is what they are shooting for but it would be a CPAP not an APAP because they normally only issue the APAPs for the initial titration to find the pressure for patients and that the insurance is not as likely to authorize payment for an APAP unit because they are more expensive. I reminded him that I can actually purchase the same model APAP from cpap.com and in fact get the newer one with heated hose for around $635 shipped and he seemed a little surprised at that cost as I also pointed out that the straight CPAPs are not that much less if I were to purchase one on my own. I also mentioned that I wanted a data capable one without going into the fact that I've been monitoring my results via the SDcard already. He just said that it is possible I could get the doctor to specify I need an APAP but still sorta seemed like he was leery of the insurance paying them for issuing that type of machine. His plan was to continue with the one I have for now BUT when/if the insurance give the ok for the normal 90day compliance - "rent to own" after that, that he would be giving me a straight CPAP and I would keep the same humidifier and just exchange the APAP I have now for the CPAP. ---I have no idea which one he would be talking about? I assume another Resperonics model like I have but straight CPAP... Would it possibly be data capable I wonder? Should I press on for the APAP? Any other advice as to how to convince him to go ahead with issuing an APAP permanently if the insurance gives the approval for the "rent to own - 90 day compliance" thing?

I also discussed with him again about my concern of having some mouth breathing going on lately and he gave me a brand new "Chin Strap" said it would just cost $16 but he is adding it to the "Supplies" claim for insurance so I took it. He showed me how to fit it and had me put it on and said to wear it under the Swift FX.

Also, he has the SDCard now but said the machine will continue to function and still record data. He is going on vacation until next Wednesday and hinted that he might not have a chance to send the data to the doctor until next week after vacation. I would kinda still like to "track" my data meantime. I know it was mentioned before about going to Walmart and buying a cheap SDcard. I forget if I need a specific "GB" number as in 2, 4, 8, ect... ? If I did this, would it have any effect on once he gives me the original SDcard back and I put it back in, would the machine still know to go back and pick up where it left off on that card? As in, Would the DME know that I had mucked around with a different card on my own?

[Pugsy]

The PR S1 machines do have internal memory storage and when the DME sends the SD card back and you put it in the machine the summary data will get written to that SD card and that is all he cares about. Flow graphs (you have already had missing) aren't stored on the machine and won't go onto the SD card. Remember the SD card has to be in the machine to get flow graphs. Actually a good bit of the other detailed data is also stored for a considerable length of time before it starts getting overwritten on the machine. I am unsure just how long but from a past experiment it seemed in the neighborhood of 3 weeks.

Get your own SD card...you can use it all the time and every so often stick the DME provided card into the machine and it will put all the data that he cares about on it. Or use them both...he has no way to tell if you use another card and shouldn't even care.

I already responded to your PM and apap vs cpap so won't retype all that. You are getting the typical runaround.
Actually...base on your reports and the pressure variations and your history...I think apap mode is likely suited best for you unless you want to use the higher pressure all the time and no one really wants to do that when they don't have to.
The PR S1 Pro (likely what he is talking about) is straight CPAP machine and won't respond to flow limitations or snores and I think with your history that you likely need that response. Get your doctor to write a pressure range and DME will have no choice but offer APAP. All this assuming your insurance will pay of course.

[lazer]

Thanks Pugsy for clearing up my confusion regarding using my own SDcard & explaining about the CPAP vs APAP in my situation. Looking back to my initial experience with the "donated" old straight CPAP from my co-worker to this current APAP, I do feel the APAP is much more comfortable overall. I am thinking my low-end pressure still needs raised a couple more ticks up to maybe 8cm. Last evening I forgot to mention, I did some rather strenuous work outside for 2 hours tearing off my front porch roof which needs replaced and upon laying down in bed with the APAP, I had a bit of a problem with catching my breath, as in it felt like I needed more air and I actually couldn't feel the sensation of air flowing through my nose at all so I was breathing much heavier than usual and it took me over an hour to get to sleep. After that, I think I slept pretty good overnight. Is there any relation to doing more physical activity than usual and come bed time, feeling the need for a higher pressure I wonder?

[Pugsy]

Is there any relation to doing more physical activity than usual and come bed time, feeling the need for a higher pressure I wonder?

Not that I am aware of but that doesn't mean anything. I think you probably were just hyper aware to lack of air movement (or what appears to be lack of air movement). While the lower settings won't suffocate us....it can sure feel like it sometimes. It's a matter of personal preference and what our bodies get used to. Back when I was experimenting with APAP pressures I just had to increase the minimum from my 10 cm (worked well) to 13 cm just to see if my AHI didn't anything spectacular. It did not. No change at all to speak of. I had worked my way up to 13 cm with 0.5 cm increases over about a month I think it was. Spent a few nights at 13 cm before deciding that experiment was a dismal failure and decided to go back to 10 cm minimum. Man, those first few nights at 10 after using the higher minimum pressure for that month or so....I felt like I was suffocating...just going from 13 down to 10. Our bodies get used to the pressures and when we use lower pressures the body thinks we are doing bad things to it. I should have gone back down slowly but I didn't. By the time I realized what I should have done I was adjusted back to 10 cm minimum.

[lazer]

So I bought an SDCard at the Walmart yesterday evening and used it last night as I mentioned the DME currently has the one that came with the APAP to send in for compliance and review with doctor. Anyhow, I did get a graph, ect... for last night BUT here is what it shows for the night of the 22nd on my work computer which I didn't get a chance to update that next morning as I dropped off the original card at the DME's.

I thought the internal memory was supposed to pickup on X number of days back and populate the new card but apparently not? No biggie, just seemed rather odd.

[Pugsy]

You got hours of use only..... hmmmm. It is supposed to store the other data in the machine...I know for a fact because I have forgotten to have the card inserted overnight (left in computer) and when I put the card back in then the data was definitely put on the card. I also did a new SD card experiment....only things missing was flow graphs..for about 3 weeks...then I got hours of use prior. You should have more than hours of use for 2 nights ago. Something is wrong...somewhere.

I see 2 sessions showing up...down at the bottom on the left. Try turning each one (one at a time) to red..instead of green to see if the data shows up. May not help but won't hurt.

[lazer]

You got hours of use only..... hmmmm. It is supposed to store the other data in the machine...I know for a fact because I have forgotten to have the card inserted overnight (left in computer) and when I put the card back in then the data was definitely put on the card. I also did a new SD card experiment....only things missing was flow graphs..for about 3 weeks...then I got hours of use prior. You should have more than hours of use for 2 nights ago. Something is wrong...somewhere.

I see 2 sessions showing up...down at the bottom on the left. Try turning each one (one at a time) to red..instead of green to see if the data shows up. May not help but won't hurt.

Hi Pugsy, The two sessions are correct as in I did get up early in the morning to use the bathroom then went back to sleep. I actually was able to stay in bed a bit longer as I had the appt with the DME to go to before work so went in a little later that day. But I did just try toggling each session on/off whilst viewing and no data would come up either way for that night - The 22nd. Like I said I did get a full report for last night the 23rd on my new SDcard, but for some reason it tagged the prior night as I shown as if the machine didn't have anything but the hours of usage to write to the new card... I wonder if it's some sort of "hidden" setting in the Clinical menu or whatever... I dunno but this kinda screws me in switching out SDcards in the future and now I'm wondering if I boned up by putting my card in because once the DME gives me back the original, maybe it won't properly pickup from where it left off and flag something as me putting in my own card

I'm about to come clean with the DME and come out and tell him YES, I've been tracking my own data in my quest for the best treatment possible AND this is why I want a full data capable machine and APAP as prescribed by doctor so both the doctor and I can keep tabs on what's going on in the future. AND, I might just throw in there that I know how to access the clinical menu to adjust my own settings but still worried that this might freak him out and throw a bone in keeping him on my side pursuing my Insurance to cover because he was real stern in telling me back when I needed the low pressure adjusted up that I absolutely wasn't to know how to do that and that HE had to be the one to make that adjustment...

Anyhoo, Here is my data for last night on the new SDcard and my first night using the "ChinStrap"... Still can't discern whether the pressure increases are chasing the "leaks" or the "snores"... But I'm starting to think another low end pressure increase is in order from the 6cm to maybe 8cm. I'm continuing to get that "not quite enough airflow feeling upon relaxing and normal breathing feeling" when bedding down for the night.