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Introduction - Started 09-29-2021
#1
Introduction - Started 09-29-2021
Hey all! So glad this forum exists and happy to be here.  I'm adding my (not-so) brief story about how and why I am on CPAP.  If I follow-through with my intentions, I'll edit this post to log my journey as a newbie.  I've heard many other stories and they've helped me set realistic expectations.

This is lengthy.  My aim is to be thorough in case others can relate to parts of my story as I have related to parts of others.  I almost didn't have a sleep study done.  I hope I can help others decide to get, or stay, on CPAP.  I didn't think I really needed it until I'd heard a lot from other people that aligned with my symptoms.

I've got three sections below - my health/lifestyle history, what prompted to get on CPAP, and how my CPAP journey is going.  Each section is bold and underlined.

Thanks for letting me share!


A bit about my health and lifestyle as it may relate to sleep apnea

I started CPAP 09-29-2021; I'm nearly 40 years old.  I'm male, married with two kids both below 3 years old.  I'm currently trying to start a business with a friend, and I have to fix up an old Victorian we moved out of so that we can rent or sell it.  With the kids, job, and house, I have a lot on my plate and this contributes to a lack of sleep.  I'm also a recovering perfectionist.  Perfectionist's frequently overwork, burn the candle at both ends, and try to do all the things.

I consider myself fairly healthy, excepting for my chronic tiredness.  I completed 1 marathon and 3 half-marathons, but the last one was probably 2014 (7 years before my start on CPAP).  I run very irregularly today, but I'm enough of a busy-body that I can crank out three miles at a 10min/mi pace with no problem.  I have not exercised consistently in at least 5 years.  I drink coffee daily in the morning (typically 2 drinks).  I drink 1-2 glasses of beer or wine almost every night.  I occasionally have a margarita or three (sidenote: Costco's premixed are the best), and I'm a fan of bourbon, whiskey, and scotch.

I smoked cigarettes from the age of 14 until 28.  I was never a heavy smoker.  I might take a whole week to do a pack (and then another pack over the weekend).  I typically smoked only while driving or drinking (and I did not do those together!).


Why I am on CPAP

For the past several months (maybe a tad longer than a year, even) I've been jolting myself awake feeling like I've been holding my breath - I gasp for air and feel a slight panic. It only happens while I a falling asleep, or have just barely fallen asleep. I've never noticed any waking at other times during sleep.  It happens when I'm intending to sleep, as well as when I unintentionally doze off (at my desk at work, on the couch watching TV, as a passenger in a car, and in conversation with my wife while lying down in bed).

For the past 20 years, I've been getting progressively more tired, foggy, forgetful, confused, etc.  The chronically tired thing has been the worst symptom.  Even in high school I was KNOWN for falling asleep in class.  My geometry teacher took a Polaroid of me asleep and posted it on the bulletin board.  I didn't see it for months and it was straight in front of me.  Fortunately, I still made mostly A's.  In college I had a Co-Op position as an engineer at a carpet manufacturer.  There were days that I was so dog tired, I would hide up in catwalks that were rarely used so I could take a 30 minute nap.  In my various jobs after college I would nod off so much that I eventually decided to get a standing desk to help me stay awake.

The fogginess, confusion, and forgetfulness have been a less-obvious symptom more slowly on the rise in the last 10 years.  There are times I forget what I'm doing or where I'm heading.  I literally draw a complete blank.  This is what truly started to scare me.  My grandmother had early onset dementia.  I saw what she was like in her late 50s.  And I've known so many people in their 80s that are sharp as a tack.  On that spectrum, I think I'd rather be sharp at 80 then incoherent at 60.

I had been attributing it all to lifestyle.  In college I both studied and partied hard.  I got little sleep.  After college I bought a fixer-upper and basically had two full-time jobs because of the house.  After marriage we bought a Victorian fixer upper.  Now with kids, they are a lot of work, and at times have caused many wakings in the night.  I've always blamed my chronic tiredness on poor sleep due to trying to juggle too much.  And when I was exercising regularly a lot of these problems reduced significantly (which goes to show there are frequently more than one cause of any symptom in life - exercise is still something I want to get back to, and along with CPAP therapy will go a long way to helping my tiredness and mental ability).

But truth is, I have always gotten a minimum of 6 hours every night, typically gotten 7, and occasionally gotten 8+.  I shouldn't be THAT chronically tired!!! 

My best friend has been on CPAP for years now.  He has made comments to me how this-or-that symptom I'm having could be from interrupted sleep due to sleep apnea.  I ignored him.

My older sister was diagnosed with sleep apnea within the past year, after her husband was diagnosed with a very severe case. And, in hindsight, we're concluding that my grandmother probably had it and that it contributed to her dementia.

So I texted my GP and asked for a referral for a sleep study. Within a month I had an initial consult, a sleep study, and been told I have sleep apnea and will be prescribed a CPAP.  Due to supply chain issues as a result of covid and the Phillips recall, my sleep doctor and I decided to skip reviewing my results and go straight to ordering my equipment. I'll get my first follow-up with him since my sleep study when we do my first visit after being on CPAP for a period.  (As of writing this on 10/2, I'm not scheduled for that until 12/7 - they pushed it way out thinking it would take longer than it did to get my machine). 


My CPAP Journey

09/29/2021 - Wednesday - Equipment arrives, no guidance from DME or Doc.
MyAir - 43/100 - 1:52 usage, 0 leaks, 8.0 AHI, 7 mask removals,
I had no idea it was coming so soon.  The DME had called Monday to say it would ship "soon" and I should have it within the next two weeks.  So I thought I had some time to learn more about it.  I also had no idea what I was getting other than a full-face mask.  FYI - a "full face mask" is not a mask covering your full face; it covers your mouth and nose only.  For folks used to using respirators for air filtering for OSHA purposes, the CPAP "full face mask" is a half mask that sits in front of your chin and not under it.  I know CPAPs have actual full face masks and I can't recall what the CPAP world calls them if they don't call them a "full face mask."

My BIL's career involves reviewing and evaluating home theater and automation equipment.  Since being on CPAP, he has similarly analyzed a lot of different machines, headgear, maintenance processes, etc.  He's become very experienced and knowledgeable in very short time.  I don't think I am allowed to promote his YouTube channel.  But I suggest searching for that and I'll coming back to put a link in here if/when allowed. 

My BIL helps me understand how to use everything and what to expect.  This eases a lot of anxiety - but certainly doesn't eliminate it.

I stayed up late Wednesday night, going to be around 1am (this is highly unusual for me).  I wore my mask for 1:52 with a score of 43/100 in the MyAir app.  I had 8 events per hour, and a "perfect" seal on my mask (scoring 20/20 for that).  I got a 0/5 for mask on/off - that means I took it off 6 or more times.  That might have all been during setup and trying to get comfortable.  Also, I didn't know the CPAP would auto-start every time I put it on.  So I think I took it on and off a lot just adjusting straps and such and the machine itself may have been turning on and off a lot. 

I have a vague memory of waking up, hating the stupid mask, and very intentionally removing it and setting it on the floor.

09/30/2021 - Thursday - Second night on CPAP
MyAir - 41/100 - 2:13 usage, 35-36L/min mask leak, 1.3AHI, 3 mask removals

I again  have a vague memory of waking up, hating the stupid mask, and very intentionally removing it and setting it on the floor. 

10/01/2021 - Friday - Third night on CPAP
MyAir - 45/100 - 2:37 usage, 31-32L/min mask leak, 12.9AHI, 2 mask removals

I don't know why my AHI skyrocketed to 12.9 events per hour!  Maybe because at the stage of sleep where I start having events is when I've been removing my mask in previous nights. 

I was inspired tonight to keep my mask on longer.  So when I woke up and wanted to take it off, I didn't.  I had the goal to keep it on for 4 hours.  I remember when taking it off that I "realized" I had it on for 4 hours and I wanted the ______ thing off NOW!  I don't know why I thought I had it on for 4 hours - clearly I did not!!! 

I woke up A LOT while wearing the mask.  I'd say 6-10 times I remember waking and wanting to remove it and talking myself into relaxing back to sleep. 

Everyone is encouraging me to stick with it.  I'm by no means thinking of throwing in the towel.  But just knowing that other people had a similar battle is encouraging.  I know I am not unique in fighting this and having to work to persevere.  And I know others have persevered, so with patience and practice, I can too. 

Honestly, THIS is probably my biggest takeaway as a newbie.  It is very hard to wear this thing and stay asleep.  And that happens to a lot of people.  Over time, they get used to it and can eventually sleep all night with it.  So tonight I will try again to hit at least 4 hours.  The wife and kids are gone tonight, so maybe that will help.  I will certainly feel more able to move around freely to get comfortable and to check the time. 

HA!  I just realized - we have a Hatch.  I could program it's light to stay red and then turn green at a certain time.  That way I can see if I'm at 4 hours yet.

10/02/2021 - Saturday - Night 4
MyAir - 70/100 - 4:24 usage, 0-16L/min mask leak, 3.6AHI, 5 mask removals
My Sleep View - 4.4hrs, 9.6cm, 5L/min leak, 3.6AHI (3.4 Total AI & 2.5 Central AI)
Settings - 7-20cm, EPR=2 (Full Time)

MUCH BETTER LAST NIGHT. This was my second night with EPR (Level "2" Expiratory Pressure Relief). As I understand it, this means the machine reduces my pressure by 2cm during exhalation. My machine's minimum pressure is 4cm, so we also bumped it up to 7cm to give enough overhead that it could reduce (6cm was all that was necessary, but 7cm provided more wiggle room and brought my base pressure higher as I start to find my titration). My first night on EPR (Night 3, Friday, 10/1) was already significantly better. But last night feels like a JUMP improvement. And I had a terrible bed time (1am - with the wife & kids away, I stayed up - I should've just gotten EXTRA sleep, LOL).

I did take my mask off and I remember doing it, but I don't remember why - like I just "knew" I was "supposed" to take it off. Weird. I woke up at 530a, realized the mask was off (and was surprised) and I saw on the machine that I had less than 2 hours. I put the mask back on and slept until ~830a (my wife will be envious!).

I do remember waking only a few times. Way better than other nights where I felt like I was waking every 5 minutes! For one waking I thought the machine had turned off because I had so little difficulty exhaling. I lifted off my mask and heard escaping air. I tapped the screen and saw the pressure was 9.something. I put the mask back on and it just didn't feel like I was under as much pressure as before. I thought there must be a kink in the line. Everything seemed fine. I guess I'm getting used to it?
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#2
RE: Introduction - Started 09-29-2021
Stick with it, Lil Bro. I think once we get you off that stupid FFM, things are going to improve for you drastically. 

You got this.
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#3
RE: Introduction - Started 09-29-2021
Welcome to Apnea Board,

I've got a 2 part homework assignment to help you with the PAP therapy.

1. talk with your doctor and request the diagnostic sleep study, full detailed report, if they balk at giving this, mention HIPAA says you can request it and get it, it is your report.

1A. ditto for the titration if you had it

2. upon getting the above reports in-hand, post them. Redact the personal stuff from the sleep reports.

Doing so will make it a lot easier to help you going forward. Soon enough there's going to be a version of OSCAR for your ResMed AirSense 11 that's going to show you a lot more info than the MyAir cheerleader
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#4
RE: Introduction - Started 09-29-2021
Your experience is a common one. Most people who go on to use CPAP very successfully start out with their own versions of these difficulties, so hang in there!

Do you breathe through your mouth or your nose during the day? The answer can help us give you some mask advice.

Meanwhile, please set the machine up outside your bedroom during the day or the evening and use it while you do something diverting, like reading or watching TV. Not easy with a life as busy as yours is, but please try to make time for an hour or two per day. This will help you get used to the new experience and extend the length of time you use the machine at night.

It would be good to know the breakdown for your AHI. (There are obstructive apneas, central apneas, and hypopneas.) It would also be good to know your settings for pressure and EPR (expiratory pressure relief). This is pasted from the Set-Up Manuals section of this forum:

ResMed AirSense 11 Series: While looking at the main screen, simultaneously press and hold the two buttons (labeled "My Options" & "My Sleep View") for 3+ seconds until the screen transitions to the "Clinical Home" screen.

You may see an option to get a more detailed report on the machine's screen; if it's there, turn it on. Always make sure your reporting interval is one day. On earlier ResMed machines, it reverts to one month whenever the machine is unplugged and then plugged back in.
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#5
RE: Introduction - Started 09-29-2021
Thanks  Thanks  Thanks


WookieeInLaw - Thank you for all your guidance, help, and encouragement!  


SarcasticDave94 - I have already had my study done, but I haven't seen my doctor afterward.  I chose this since my options were to wait a few weeks to get to see him, and THEN be able to order my equipment - OR - just order my equipment and get a 2-in-1 follow-up to discuss my results and my machine/progress.  I don't know why we couldn't order equipment AND schedule a post-study follow-up, but I also didn't ask.  I was multi-tasking 20 things when they called, LOL.  

If I understand you correctly, when I meet with him I need to ask for my detailed report, and I can't do part 1A (titration) because my first sleep study was without a PAP.  As of now, my appointment isn't until 12/7, but Monday I'm going to see about getting in sooner.  The doc's office thought it would be a lot longer before I got my equipment.

I PM'd Gideon for Beta Access - but I probably lack forum-cred to get it!  The Beta "supports" the ResMed AirSense 11 AutoSet.  I've got some programming background and penchant for pointing out things that *I* think work poorly, LOL.  

Dielaughing - "MyAir Cheerleader" - I'm going to have to use that one!   Laugh-a-lot


Dormeo - Thanks for your encouragement!  

I rarely breathe through my mouth.  

Good idea on getting more "practice" time in.  I might take it to the office (I have to tomorrow, anyway, for my phone call with the DME Supplier).  

When I got my unit, pressure was set to 4-20 without EPR.  My BIL helped me change to 7-20 with EPR=2 after I had complained of feeling like if I didn't FORCE my exhalation, the machine was "holding my breath" for me.  Below are the settings I have had for the past two nights.

Pressure (AutoSet) 7-20
AutoSet Respone - Standard
Ramp Time - Auto
Start Pressure - 7.0
EPR - Full Time, Level 2
Humidity - 4
Tube - SlimLine (though I have the heated line, but the only other option is "Standard")

I don't know how to get previous nights' detailed data, but here is last night:
4.4hrs, pressure 9.6, 5L/min leak,
AHI - 3.6
Total AI - 3.4
Central AI - 2.5
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#6
RE: Introduction - Started 09-29-2021
I was hoping to be able to keep editing my original post - this forum seems to allow only editing the most recent.

I want to log my daily experience and results in that top post, hoping that would help others who struggle to get started without having to sift through replies.  Maybe I need enough credibility to gain access to do that.  


Moderator Note: "10/02/2021 - Saturday - Night 4" moved to OP's first post.
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#7
RE: Introduction - Started 09-29-2021
It sounds like last night was a big step forward for you. You have a wonderful brother-in-law! The central apneas may just reflect "sleep-wake junk," meaning that they are pauses between breaths that you are taking while partly or fully awake. I wouldn't worry about them; as you start sleeping better, they will probably settle down.

Because you mostly breathe through your nose during the day, you might want to try using a nasal interface instead of the full-face mask. There are nasal masks and nasal pillow masks. I'd recommend trying a pillow mask, since the pillows help to anchor the interface.

A minimalist, light-weight mask that works for many people is the ResMed P10. If you try it, be sure to get the starter pack with all three sizes of pillow. People often do best with a larger pillow than they would guess. The widest part of the pillows should sit on on edges of your nares; they should creep inside your nose. Also, be sure to change the mask-type setting on your machine.

I'll also put in a good word for the Aloha mask. It's more structured than the P10 and quite stable. But everyone's face is different, so you may want to experiment.
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#8
RE: Introduction - Started 09-29-2021
May I suggest reading https://www.apneaboard.com/wiki/index.ph...ng_therapy which contains LOTS of good info including a section titled "APAP Optimization / Titration." You will still want support from the experts here, but the above wiki will give you some good understanding. Persevere!!
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