Day 3->Week 6--Thoughts, Issues, and Questions

[YouMaySayImaDreamer]

Hello to all and let me say thank you so much for all the advice I've picked up while pouring over these forums.

I'll post my questions right here at the start and then leave the color commentary for those who want to read more.

1. Inner ear pressure- I couldn't clear this like when swimming/diving, but I'm not sure it's even possible since I don't think one can equalize (meaning pressure under cpap will always be greater than that in your room). In any case, I'm pretty sure it's due in part to breathing against the air pressure on exhalation. I'm thinking that something like a-flex would help if this continues.

Does any of the above make sense? Any advice?

2. Nasal mask suction- The good thing is that the mask wasn't slipping. The bad thing is that it felt like it was going to be permanently melded to my face. Just the part below the nose was where it got painfully tight. I'm thinking that nasal pillows would allow me to avoid this. Does that sound right? I of course realize I need to try different masks, but I'm wondering if others have experienced this and/or have suggestions/solutions.

My rental equipment is a ResMed Spirit II and what I think is a Mirage Activa.

Those are the key questions for now. I'm sure I'll have more soon. Thanks in advance for any comments.

My Newbie Novella

I had my PSG (split-study) last Thursday, was diagnosed with severe OSA, and started using cpap at home on Monday night. One added "bonus" is that I live and work in Korea. I can speak enough Korean to get by, but my command of the language is still quite limited. Fortunately my doctor studied in the States and speaks decent English. Still, this forum has allowed me to review what I discuss with him and far better understand the concepts/jargon related to sleep apnea and CPAP.

Here's a recap:

Sleep Study
I intentionally got only 5 hours of sleep the night before, the center was quite comfortably set up, but I was still a bit keyed up and had trouble falling asleep. They gave me a sedative after a while, then I was out. I woke up again when the 1st part was complete and they needed to start fitting the mask. Didn't wake up again till 5am when they told me they had successfully finished the titration study. I slept until 7, then got up and left. Once I got outside, I was amazed. In the morning, things are normally pretty fuzzy and I'm usually quite groggy. Not today. It was like someone had adjusted the sharpness on a TV set, only the TV set was reality. I was really slowly coming to realize that I'd had a fantastic sleep.

Diagnosis
This was quite shocking. My RDI was 98.8. I was holding my breath for 20 seconds, then snore-breathing for 10 seconds throughout my entire study. The snoring was causing arousals such that I was awake but unaware of being so. It was a VERY good thing I'd gotten tested. With titration at 13, my sleep reached normal levels with no events.

Day 1
Mindful of my diagnosis, I had geared myself to thinking that I HAD TO and WAS going to make the CPAP work for me. Naively, I went to bed at my normal hour for my first night of "beauty sleep". All I can say is, "Doh!" I just assumed that it would be just like the sleep study. Easy peasy. I kind of forgot that I'd had sedatives and clinicians taking care of me. With the mask on and pressure ramping, I had just a brief moment of claustrophobia (which I never get) because it was difficult to breathe. A bit later, it was now easy to breathe in but harder to exhale. I was also feeling the pressure on my ear drums. It's kind of the opposite of scuba diving, where the pressure is coming from outside, and I couldn't really equalize this kind of pressure. It took forever to fall asleep, and the sleep wasn't what you'd call beautiful. Lesson learned, while you're new to this, go to bed early so you have plenty of time to acclimate. I guess I slept OK, but I got half the sleep I was planning to get.

Day 2
I came out swinging. Was in bed 3 hours earlier than last time and knew what I was up against. I played a bit, tried many different positions, tried resetting and re-ramping, fine-tuned the straps. Started sleeping after an hour. I woke up three times. 1st time was to remove the chin strap. Funky things going on there. If I allow just a bit of air into my mouth cavity, then my cheeks suddenly inflate like Dizzy Gillespie playing a long jazz solo. Back to sleep. Awake two hours later. This time, the nasal mask is suctioned super-tight to the tender little spot just below my nose. I never knew I had a tender little spot just below my nose... I cause a leak while adjusting but soon get back to sleep. Wake up two hours later. This time it's thirst/dry mouth. I'm wondering if I was letting my mouth open, so back goes the chin strap. Tonight I will try the tape. Despite the wake-ups and a sore upper lip, I get out of bed in the morning and instantly recognize...that nice feeling from after the sleep study. Something went right.

Day 3
Coming up shortly!

A couple of further thoughts
I should have done this a long time ago. I had read up on sleep apnea, but I got horribly turned off by the whole mask thing to the point of not wanting to get treated because I loathed the idea of wearing a mask and was rather hoping to read of some silver-bullet surgery. The more I read, the less likely that seemed, but I still didn't want to do the mask. Once I actually got to the doctor, understood my situation, and rearranged my attitude from "I don't want a mask" to "I need to make this work", I feel like I'm over a major hurdle. Being a bit of a technophile, I'm finding it fun to read about all of the different designs, models, and gear that's available. Feelings of burden and punishment are giving way to curiosity and adventure. I think that mindset change has helped, even if it's only the beginning.

[MoneyGal]

go you! This all sounds good. The most important thing is probably your attitude! and it sounds like you have the right one.

Everyone has a tender spot under their nose. I train in martial arts and some of our self-defense moves involve using that spot to disable an attacker.

[BleepingBeauty]

Hello to all and let me say thank you so much for all the advice I've picked up while pouring over these forums.

I'll post my questions right here at the start and then leave the color commentary for those who want to read more.

1. Inner ear pressure- I couldn't clear this like when swimming/diving, but I'm not sure it's even possible since I don't think one can equalize (meaning pressure under cpap will always be greater than that in your room). In any case, I'm pretty sure it's due in part to breathing against the air pressure on exhalation. I'm thinking that something like a-flex would help if this continues.

Does any of the above make sense? Any advice?

2. Nasal mask suction- The good thing is that the mask wasn't slipping. The bad thing is that it felt like it was going to be permanently melded to my face. Just the part below the nose was where it got painfully tight. I'm thinking that nasal pillows would allow me to avoid this. Does that sound right? I of course realize I need to try different masks, but I'm wondering if others have experienced this and/or have suggestions/solutions.

My rental equipment is a ResMed Spirit II and what I think is a Mirage Activa.

Hi, and welcome to the forum! Sounds like you're off to a great start. IMO, attitude is everything with this therapy; next in importance is finding the right mask.

I can't speak to the inner ear pressure you're dealing with, as I haven't experienced that with my therapy. But there are discussions about that subject on the forum, and others who can commiserate will likely offer their advice to you here.

Your mask should be tight enough to seal well but not so tight that it hurts. Many newbies think they need to cinch the mask in tight to stop leaks, but making it too tight can actually increase the leaks (not to mention discomfort).

As you already know, there's an array of different mask types from which to choose (full-face, which covers both nose and mouth; nasal, which covers the nose; nasal pillows, which rests against the nostrils; hybrid, a mouth mask/nasal pillows combo; as well as other designs like the Total Face mask, which covers your whole face, or the No-Mask or CPAP-PRO, which is a pillows mask without any headgear, secured by a boil-n-bite mouthpiece). Experimentation is the only way to determine what works best for you. Many of us have a favorite mask and a back-up on hand, for those "just in case" times. (I use the Swift LT nasal pillows every night, but I have the Liberty hybrid as a back-up for those occasions when congestion makes breathing through my nose difficult - allergies, a cold, etc.)

Once I actually got to the doctor, understood my situation, and rearranged my attitude from "I don't want a mask" to "I need to make this work", I feel like I'm over a major hurdle. Being a bit of a technophile, I'm finding it fun to read about all of the different designs, models, and gear that's available. Feelings of burden and punishment are giving way to curiosity and adventure. I think that mindset change has helped, even if it's only the beginning.

You've got a great attitude, and I have no doubt you'll do well with your therapy.

[RipVW]

Hello & Welcome, YouMaySayImaDreamer! Glad you found this forum—SO much useful info and everyone here is so willing to help!

Sounds like you're off to a great start! You're lucky to have found this forum as you begin CPAP--took me almost year before I found this place and, with the help of folks here, got my CPAP therapy working as it should.

"You are getting sleepy . . ."

[harry33]

you are doing much better than many new CPAP users
try holding the nostrils and trying to breathe in and out for the ears

[apnez]

I have the Mirage Activa. I tried 3 other masks before I choose the Activa. Yes, this mask "melts" to your face! And this is why it is a very good mask. One of the key points for an efficient treatment will be a no leak situation. This mask is virtually leak free for many of us. This is my case. I constantly reach a big "O" leak. So if you feel comfortable within a week or two and find the correct adjustments keep it! As some mentioned don't over tighten it. This is what most do, they over tighten the mask and complaint for marks. Tighten it to the "no leak" point not more. If you get a ResMed machine there is a way to test for leaks and mask adjustment. This is a good feature and it helps a lot. Good luck!

[dad1717]

I had the inner ear preassure for a couple of nights then it went away ------- or I got used to it. Now after 2 weeks i do not notice it anymore.

[BeanMeScot]

Welcome!

If you are feeling like you are not getting enough air, make sure that your ramp isn't set to go below 5 or even 6. Most people feel like they can't get enough air at those pressures. If you are having trouble exhaling, there are machines that help with that. We don't know what type of machine you have. If you have a machine with exhalation relief, we can help you use it. If you don't have exhalation relief, you might want to complain to your doctor. You might be able to get a better machine.

Make sure you fill out your machine information under your user controls. It will help us better help you.

[ozij]

Hello to all and let me say thank you so much for all the advice I've picked up while pouring over these forums.

I'll post my questions right here at the start and then leave the color commentary for those who want to read more.

1. Inner ear pressure- I couldn't clear this like when swimming/diving, but I'm not sure it's even possible since I don't think one can equalize (meaning pressure under cpap will always be greater than that in your room). In any case, I'm pretty sure it's due in part to breathing against the air pressure on exhalation. I'm thinking that something like a-flex would help if this continues.

Does any of the above make sense? Any advice?

A-flex would help in exhalation, and may also help with the ear pressure.

2. Nasal mask suction- The good thing is that the mask wasn't slipping. The bad thing is that it felt like it was going to be permanently melded to my face. Just the part below the nose was where it got painfully tight. I'm thinking that nasal pillows would allow me to avoid this. Does that sound right? I of course realize I need to try different masks, but I'm wondering if others have experienced this and/or have suggestions/solutions.

I much prefer nasal pillows to a nasal mask - they are lighter the ones I use - mostly the Headrest every now and the the Opus - can be worn without putting any pressure at all on my upper lip.

My rental equipment is a ResMed Spirit II and what I think is a Mirage Activa.

Machine names vary across continents, take a peek at ResMed's site, and try to find the USA equivalent for your machine's name -- and add it to your profile. The text option is easier for us than the icons.

As others have said - you've got a great attitude - thanks for adding all that color. The dry mouth is indeed mouthleaking.

Welcome to the forum!

O.

[rested gal]

You've found the right message board to get all the help anyone could hope to find, YMSID. Great introductory post!
You definitely have the right attitude to make it all work for you.

My rental equipment is a ResMed Spirit II

Machine names vary across continents, take a peek at ResMed's site, and try to find the USA equivalent for your machine's name -- and add it to your profile. The text option is easier for us than the icons.

I'm betting the U.S. name of your ResMed machine is the S8 Autoset II.

At any rate, if you can tell us the U.S. name of it, and if you don't have the "Clinical" manual (different from the "User" manual) let us know. The clinical manual is nice to have.

Welcome to the board!

[jdm2857]

I checked resmed.com.au and found an S8 AutoSet Spirit II. I believe that it is similar to the US S8 AutoSet II, but for some reason it does not have EPR.

[YouMaySayImaDreamer]

Well overdue for an update.

Day 3

I went to sleep with my tender lip immediately complaining that the mask was back. Woke up at 2am from the pain. Decided I might as well look here for updates/replies. And there was the solution:

Your mask should be tight enough to seal well but not so tight that it hurts. Many newbies think they need to cinch the mask in tight to stop leaks, but making it too tight can actually increase the leaks (not to mention discomfort).

Thank you, BleepingBeauty!

I basically loosened all of the straps as far as they could go, then tightened them back as needed. HUGE, MASSIVE, mega-difference! The mask I was using was, indeed, the Activa. And, as apnez stated:

Yes, this mask "melts" to your face! And this is why it is a very good mask.

It really is comfortable when it's on right, and this was a crucial moment for me. The amount of adjustment needed for CPAP had just fallen to negligible. I slept straight through (Well, not really. It seems my habit is to wake up an hour before I need to, remove the mask, and do my final hour "analog".)

As for ear pressure, I still get it, but I have found a way to alleviate it. Hard to explain, but I do something I'll call a "pre-yawn flex": like you're about to yawn, but you only go so far as to hear a little movement in your ears. A series of those does it for me, whereas a scuba-like attempt (much stronger) aggravates the pressure.

The breathing issue subsided completely. I started looking forward to the pressure and associate it with what is still to me gourmet sleep.

Anyway, let me continue the story:

Days 4-7
Went lickety splickety. Well, almost. Now that the mask was like butter, I started moving around a lot more. Going to a side position led to a lot of mask leaks. With the gear loosened, one night I managed to remove the whole shebang. I woke up in the morning to my mask delivering positive air pressure to one corner of my mattress. After just a touch more tightening, that didn't happen again.

A new but minor problem is creeping in: leak paranoia. I really wish the overflow valve wasn't so close to where the leaks happen. Sometimes I move it around to look for leaks and then end up causing a leak by doing so.

Day 8-14
Time to insert the card that raises my titration from 12 to 13...not really a noticeable difference. However, my week is quite busy and I don't get as much therapy as last. I'm definitely leaking. Some mask. Some mouth. Still reaping the benefits, though. I actually go to work an hour early one day. My co-workers are scared in an impressed sort of way. They're definitely not used to seeing me at such an hour.

Day 15
Reckoning. Time to talk to the doctor. I'll spare all of the stats, but he says I've done well for the first two weeks. My AHI is still too high (10), but down drastically from my sleep study. He attributes this to the leaks, and I concur. I'm surprised to find that, when the change to 13 happened, he also activated EPR. I didn't notice a difference, so I think I'm going to stick with straight CPAP for now. This is also time to return my rental machine. He wants me to rent till I get my own, but I decline. Not wise; I know, but I really want my own gear at this point. So, I go back to that "other sleep" till my order arrives.

Day 16- 21
I immediately start to miss the CPAP therapy. Smooth sailing through the cpap.com order process. Well, almost. ResMed doesn't ship outside the US from its US outlets (boo). I'm sure there's a way to work around this, but I'd rather have my whole setup arrive together. No Swift for me . I have a mildly entertaining exchange with Korean customs:

Officer: Your shipment. What is it?
Me: Medical supplies
Officer: Medicine?
Me: No, it's, um, an air pressure machine
Officer: Air machine?
Me: Yeah. I have a sleeping problem. It helps me sleep.
Officer: OK, you fax us letter. Say what is and why you need. Give doctor note.
Me: OK.

Day 22
Christmas in July. It has arrived! Took a bit of figuring, but it's all set up and waiting for me to hit the hay.

Here's what I got:
Intellipap AutoAdjust Travel with humidifier and smart module
I was initially going to just get the DeVilBiss normal CPAP machine, but the extended smart module analysis only works with this model. The reviews were persuasive, but seeing DeVilBiss actively participating here was key. Being in Korea, I'm kind of used to being on my own in terms of product support (meaning not getting any because of either language barriers or agreements not being honored overseas). Couple that with the potential of firmware upgrades, smartcodes, and hopefully non-proprietary memory cards, and this seemed to fit best with my expatriate lifestyle.

Optus 360 Nasal Pillows
As comfortable as the Activa was, I really wanted to reduce the footprint on my face (hehe). I think I move too much and the mask ends up getting bumped out of place. Besides, ResMed products were off the table. Had a quick couple of cycles during setup, and it seems promising.

10 foot hose
For lots o' floppin' about.

Oh and one more thing
I really don't seem to like chin straps. I've been avidly following the pap-cap discussion, and they bear some similarities to "Buffs". I happened to have a Buff laying around, and I'm going to give it a try now that my equipment is here.

Wow, I never plan to write so much, but there's alway a lot of ground to cover.

Thanks to all who responded, advised, and encouraged. This is a fantastic community both in terms of knowledge and friendliness.

My next goal is to join in more and hit up some other threads.

Thanks again, and sweet dreams.

[YouMaySayImaDreamer]

Update time.

For those not interested in color commentary, two questions have arisen for me:

Has anyone tried using an athletic mouthguard to prevent exhale puffs?

Are there any concerns about mixing cpap with scuba diving?


Day 22
I start using the IntelliPap/opus 360 combo. Though I was positively giddy about finally having my own equipment, the first night was like hitting the reset switch on my comfort levels. The machine sounded different from my rental ResMed, and the hose running right up the center of my face was just plain weird. On the positive side, it wasn't hard to understand the various settings, I really like auto-on/off, and the nasal pillows not only sit well but it's easier for me to detect leaks. Still, I didn't get a great sleep, and the mask was off several hours before it was time to wake up.

The following week
I became acclimated to the machine, but the rig holding the Opus in place just wasn't doing it for me. Somewhere on the forum, I was happy to read that someone just doesn't use the rigging. I gave that a try, and was much happier. It now felt very similar to the Activa nasal mask I'd rented. I guess "freetubing" it is supposed to increase leaks, but I didn't find that. The pillow occasional comes loose from its gasket, but it's very obvious when that happens and quickly remedied.

The following following week
Checking my data, AHI is down to 5. The big glaring number now is EPI: it's at 38. Not a mask leak; I'm exhaling through my mouth. A lot. Doesn't surprise me as I've breathed that way my whole life. But how to deal with it? I give up on wearing my Buff and return to the chin strap. I'm still blowing out. I see a PapCap in my future, but I'm still not convinced that will prevent me from exhaling through my teeth. I really don't want to tape/polident. I made a deal with my doc to work on nose-breathing though for two months before switching to a FFM. One idea I've been tossing about is buying an athletic mouthguard. In my mind, that might just do the trick. A boxing one if necessary.

This past week (week 6 of my treatment)
Haven't tracked down a mouthguard yet, but I swung into proactive comfort mode. The hose hasn't been bothering me, but I keep reading about hangers and such, so I figure I got nothing to lose. I look at the wall above my bed. I have a kite hanging up there on a nail (don't ask, it's a souvenir, ok?). Hmm...nail + kitestring=? I go findthe kite string, cut off a wee bit, and loop the hose up there so it's a good 1.5m above me. I sleep really well that night. Out shopping at a Costco, I find a firm little pillow stuffed with something that, in my mind, must approximate buckwheat, and take it home for $11. Turns out it's an herbal dream pillow. I guess I don't really get the herbal benefits since I'm inhaling air from the side of my bed, but it's noticeably different from a big soft pillow knocking at my gear. I get a really nice sleep out of this configuration. I'm pretty pleased...until I wake up in the morning and look in the mirror. Now, where did that massive scar on my face come from? I don't remember being in a knife fight. Oh. This is what people mean about having marks in the morning. Two steps forward, one step back.

Further musings
A major battle through all of this is trying to keep the mask on longer. After my two week check-up and my doc actually being pleased that I kept it on for four hours a night, I feel like I started to backslide. Or, to say the least, there was a point where I wasn't trying to keep it on longer. Instead of a couple hours, wake up, a couple hours, wake up, a couple hours, wake up, I had changed. It was now "sleep one long stretch with the mask on, then sleep one long stretch with it off. I could feel the difference, and it wasn't good. In the past week, Ive been trying to confront SleepyMe. While AwakeMe is fully on board with cpap, SleepyMe is in charge at the key hours. Sadly, I've come to realize that SleepyMe has the same judgment ability as MeAfterAFewDrinks. It's crap. But I guess I've kinda knew this for a long time. SleepyMe is the morning snoozer-button addict as well. Alas, the time has come to address this multiple personality disorder. Last night, I got 4 hours. Then, just when SleepyMe was about to say "Aw screw it. Dat's good enuf." AwakeMe put in an appearance and shoved the mask back in place. A second four hours was achieved. The best morning feeling since my sleep study was the result. 8 hours knocks the socks off of four hours.

Oh, and one more thing. I've also rediscovered the light bulb at the top. Silly me thought I'd read it all, but the number of submenus is really packed with info. I'm keen to try the Nasal Aire II. One thing I've been wondering about that I haven't seen covered is scuba diving and cpap. I only dive occasionally, but I'm a bit concerned that it's similar to guidelines about flying after diving.

Happy papping,
YM