Newbie to CPAP - Welcome advice and comments!

[avaholic]

Hello,

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

I am a newly diagnosed hosehead with 'extremely severe sleep apnea.' I've always had breathing issues as long as I can remember and 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 for years that I wake myself up while sleeping 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 available 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, 2018 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 because 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. Thanks to the Provider manual I found on the internet, 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 very surprised that I knew how to get into the provider settings. At least the unit 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 over about an hour and I agreed that the ResMed AirFit F10 felt the best.

On Wednesday and Thursday night, my experience with the CPAP and my new mask was better and I only woke up once to go to the restroom both evenings. I also did not use the Ramp feature rather I immediately started therapy at 12 cm H20.

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. I'll also mention that I'm having to really concentrate on breathing when I first put the mask on. I force myself to inhale when I feel the pressure and exhale when I feel the pressure relief. I'm usually a very deep (mouth) breather but it feels as if the machine is trying to force me to take much shorter breaths. Its a bit irritating because it feels kind of like the machine doesn't understand I need deeper/longer breaths. Is that a nornal?

What is the best way to take a bathroom break at night if needed? Should I need to turn the therapy OFF? Or is using the Auto OFF function on the machine OK? I think I've figured out this answer myself. Last night(Thursday), when I got up to use the bathroom I simply pressed the Therapy On/Off button to stop the airflow. When I returned to bed and placed the mask on, I obviously had to press the Therapy On/Off button again to continue airflow. Oddly enough, after laying back down and going back to sleep, the must machine powered off for no apparent reason. Mask was on, I had pressed the Therapy button, etc. So this morning I disabled Auto OFF so that should happen again.

I know that going from AHI 102 untreated down to AHI 10 (Wednesday) and/or AHI 7 ( Thursday) 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?

Note that I've had horrendous headaches each day this week since starting treatment. It was a bit better yesterday and today but I still have a darn headache. I 'think' I feel more rested but that is kind of subjective as I've been not sleeping soundly for so long maybe I'm not sure what 'a good sleep' is.. ??

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've attached screenshots as requested. I've also attached my sleep study. I also have the Encore Pro data if that would help.

Any comments or suggestions would be most appreciated!

Thanks,

Chris

Monday

Monday - 08-27-2018.png (107.18 KiB) Viewed 18498 times

Tuesday

Tuesday - 08-28-2018.png (108.39 KiB) Viewed 18498 times

Wednesday

Wednesday - 08-29-2018.png (118.05 KiB) Viewed 18498 times

[avaholic]

Is there a image # limit or just a size limit on attachments?

You don't accept pdf's? How can I post my Sleep study?

Thanks!

Chris

and Here's Thursday..

Thursday - 08-30-2018.png (87.86 KiB) Viewed 18496 times

[Pugsy]

Welcome to the forum.

I wouldn't worry about those CAs/centrals right now. I am betting most of them aren't real but instead are the machine flagging awake breathing irregularities as some sort of apnea event. The machine doesn't know if you are awake or asleep. It only measures air flow and our awake breathing is much more irregular than our asleep breathing so it can give us "false positives".
Once you are sleeping more soundly they should reduce in numbers significantly.
It's normal to have an occasion central and not a big deal...so don't panic over a random central here or there.

You might want to take some time to learn how to distinguish awake/post arousal breathing and those flags and asleep breathing an thus real flags.
Read this and watch all the videos.
http://freecpapadvice.com/sleepyhead-free-software

I like to turn the machine off if I get up for some reason during the night. Mainly because its noisy to let it blow until it turns itself off and it will also mess with the leak numbers a little. Not a huge problem but I just prefer turning it off.

Use the Flex exhale relief feature available and play with all the settings and see which one feels more in tune with your own respiration pattern. Use whatever feels good no matter what the setting. With Flex it's actually more about timing than it is actual reduction because its a flow based exhale relief.

[Pugsy]

There is a size limit to attachments but I forget what it is and I think a limit to the number within a post.

[ChicagoGranny]

I always breathe with my mouth open because my nasal passages just don't give me enough air.

My following comments assume you will soon get your CPAP therapy optimized achieving a consistently low AHI.

I'm so sorry you were put through an unsuccessful UPPP. How would you feel about having a consultation with an ENT for an examination of your nasal passages? (Not the ENT who did the UPPP!) It sounds like you have some combination of enlarged nasal turbinates or badly deviated septum. My husband, who has been using CPAP about 25 years, had those problems. An ENT corrected it, and Gramps is now able to breathe much better at night when using CPAP and during the day.

Good luck with getting your CPAP therapy optimized over the coming days!

[zonker]

My husband, who has been using CPAP about 25 years, had those problems.

to avaholic- i apologize for hijacking your thread but i just have to ask chicagogranny,

what was cpap like 25 years ago? did the machine have vacuum tubes and bellows?

[palerider]

My husband, who has been using CPAP about 25 years, had those problems.

to avaholic- i apologize for hijacking your thread but i just have to ask chicagogranny,

what was cpap like 25 years ago? did the machine have vacuum tubes and bellows?

https://www.cpap.com/blog/the-history-of-cpap-therapy/

[avaholic]

Thanks for the responses! A few follow up questions if I might.

Regarding the 'FLEX' feature. My unit is set to 'A-FLEX' with the highest setting of 3. From the user manual:
"FLEX allows you to adjust the level of air pressure relief that you feel when you exhale during therapy. Your home care provider can enable or disable this feature. When your provider enables Flex, a level will already be set for you on the device. You can increase or decrease the setting from 1 to 3. The setting of “1” provides a small amount of pressure relief, with higher numbers providing additional relief."

I'm already having issues with 'timing' my breathing while using the machine, if that makes sense. If I lower the value won't that give me even less time to exhale? I feel I need MORE time not less time.

As far as an ENT goes, I'm more than happy to see other docs. It's just they've said previously there's not much else they can do. I am a vocalist and as such I've trained myself to take very deep breaths from my diaphragm with my mouth wide open. It's really hard for me to use my nose. Both nasal passages are open mind you, it's just that I can't get nearly enough air that way. Maybe its just a matter of retraining my body once again now that I have severe OSA.

While on the subject of mouth breathing... I thought I had dry mouth when I woke up before I had a CPAP machine. Man, Oh Man was I wrong! Even with the humidifier set to max moisture, I still wake up with an extremely dry mouth. The sleep tech said just to get used to it. LOL.

Is AHI 7 just a good start while my body adjusts to the therapy, or is that the lowest number I'm going to see?

If reviewing my sleep study would help with your advice, I'm happy to send it. Just PM me. For some reason, I can't attach .pdf's.

Thanks!

[Pugsy]

Actually I found that the setting of Flex at 1 was a slower response and the setting of 3 was the fastest and I didn't really like it. Made me feel like I was breathing too fast sort of like hyper ventilating.

Try all the settings while awake including off and see what seems to feel the best to you and use it no matter what the setting.

It's a flow based reduction and the most it can give you is 2 cm anyway....even at that setting of 3 and then only if you are a forceful breather.
Don't worry about the number....just try all settings and pick one that feels the best to you.

AHI of 7 is too high....we need to work on that but first you need to work on sleeping with the machine and mask.
If you don't sleep so great and have a lot of awake time with mask on there's a good chance that you will get some false flags making that AHI look worse than it is.
Awake flagged events...don't count and have to be removed from the evaluation process.

[palerider]

I'm already having issues with 'timing' my breathing while using the machine.

Don't 'time' your breathing, just *breathe*... make the machine follow you....

[ChicagoGranny]

My husband, who has been using CPAP about 25 years, had those problems.

what was cpap like 25 years ago? did the machine have vacuum tubes and bellows?

Gramps has never been a person to complain about anything (I do it for both of us). So, I don't remember much about his first CPAP, except it was big, heavy and burned coal. Fortunately, in those days, stagecoach lines didn't scan your baggage, so we could take along a small bag of coal on our trips.

[avaholic]

^^ LOL! Nice one!

Well last 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 than 5?

Pugsy - you were exactly correct! FLEX 1 was MUCH better. Thanks! It's odd because the manual says the higher numbers provide additional pressure relief. I guess maybe its counter-intuitive.

Also, on another thread you said, 'We have a lot of full face mask users who have dry mouth and have to add some sort or moisturizing agent to their routine. Biotene type of products..XyliMelts or similar products.' Do those products work while sleeping and do they last all night?

I also saw that many mouth breathers use 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?

Anyway. I'm excited that my numbers continue to decrease!

Friday

08-31-2018 - Fri.png (90.58 KiB) Viewed 18386 times

[zonker]

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 than 5?

Anyway. I'm excited that my numbers continue to decrease!

as well you should be. good job!

there is lots of talk here about an AHI of five and is it "good enough". that's up to you, but most would say no. some would even say HELL NO!!

i'm one of those that can certainly tell the difference in my AHI. if i sleep with an AHI of 2 or above, i feel it. when i hit 1.5 or below, i feel more "refreshed" somehow. don't know how to explain it, i just know it when it happens.

if you want to get that AHI lower, stick around here and follow the excellent advice that will come your way.

good luck!

[zonker]

My husband, who has been using CPAP about 25 years, had those problems.

what was cpap like 25 years ago? did the machine have vacuum tubes and bellows?

Gramps has never been a person to complain about anything (I do it for both of us). So, I don't remember much about his first CPAP, except it was big, heavy and burned coal. Fortunately, in those days, stagecoach lines didn't scan your baggage, so we could take along a small bag of coal on our trips.

weren't you afraid that the sparks would set your crinolines on fire?

[Pugsy]

I am betting that the flagged events around 22:00 to 22:30 are awake events getting flagged by mistake.
If that is the case your AHI is probably not even the 4ish AHI because there is a dense cluster of events affecting the overall average.