6-month "new" BiPAP User

[Blue_Coral47]

I've been reading these boards for the last 6 months but only got brave enough to post myself today

In 2018 via a home sleep test I was diagnosed with moderate OSA. At the time I didn't understand the significance of such a diagnosis having generally felt "fine" with my sleep, it was totally normal to be tired all the time - right? I had just turned 38 and was only mildly overweight, and as a woman had only ever thought about sleep apnea as something that happened to older overweight men. Oh how wrong I was. I never spoke with a doctor about what sleep apnea is and how it could affect my life (not that I would have listened at the time) and decided to forgo any treatment.

Fast forward to September 2021 and all of a sudden I couldn't fall asleep without gasping myself awake. It was a horrible time of multiple nights in a row without a wink of sleep. I finally called my doctor, who referred me to a sleep clinic, and two days later I was walking out of their office with a borrowed CPAP machine to try. That night, I struggled with the machine and another 10 days went by with terrible sleep. I just couldn't get used to it. Exhaling was the worst, and a few times I woke up with the mask blowing off of my face. I returned to the sleep clinic who provided me with a BiPAP machine to try out, and I finally had relief.

Two weeks later I returned the borrowed BiPAP machine as I received my own machine through my insurance, only to final out that the settings on my new machine were very different from the borrowed machine, and again I struggled to sleep. The sleep clinic was able to confirm the borrowed machine's settings but was unable to help me change the settings on my new machine. Through a bit of sleuthing, I was able to figure out how to adjust certain settings myself and, most helpfully, amended the inhale and exhale time to better match my needs. Back on track, again, finally.

Here I am 6 months later. I'm finally sleeping better. Because I've been more rested, I've been able to undertake an exercise regime and have lost 33 pounds! (Sadly I'm only back to my 2018 weight now as I gained a bit of weight during the past pandemic years.) My AHIs are always under 1.0 (usually around 0.0 to 0.3 - with the worst I've seen at 0.5.) I use my machine every night as I have a bit of anxiety about not using it and gasping myself awake again (a truly horrible feeling as I'm sure you all well know).

I'd like to better understand a few aspects of OSA and BiPAPs and I'm looking forward to being part of this online community. A few questions:

1. I've only had an in-home sleep study, and it was 3.5 years ago. I'd love to have a study done to ensure that all the settings are optimized to make sure I'm getting the most benefit from my machine. Is this a thing? I've heard a lot about OSCAR, how do I set this up? I've read some of the posts about it but I don't understand what it is or how I incorporate it with my equipment?

2. I generally sleep on my side and have started to have issues with the mask leaking in to my eyes no matter how tight I adjust the straps. In fact, I over tightened the straps a few days ago and still have pain on one side of my face from this. I'm only lucky I didn't cause a sore! I'd love some input on how to resolve the eye leak issue?

3. I travel internationally quite a bit, although this has been curved these past few years due to COVID. I have my first international trip coming up this summer and I'm petrified. I have to bring and use my BiPAP, no question (although I will forgo using it on my outbound overnight flight), but I'm scared about using it in a different country and frying it with the different electricity. I'd love some thoughts / feedback from others who have traveled internationally with their machines.

4. I'm confused about how to best clean my equipment. The manufacturer says every day but I just can't do that. I tried doing it every week but the water never fully dries out of the equipment. I bought a hurricane dryer on Amazon which works great, but after a few months of use I had a problem with my water chamber loosing a bit of its seal so it would slowly bounce open and make a noise on my exhale. Not sure if this was a fault of the water chamber, age of the equipment at the time (3 months), or using the Hurricane dryer. I'd love to hear from others their thoughts on this?

5. This might not be the proper forum, and if not please excuse me, but I'm desperate to entirely eliminate my sleep apnea if I can. I'm continuing on my weight loss journey although my doctor has indicated that part of the cause of my OSA is anatomical (large tonsils, recessed chin). I'd love to hear from members who have pursued surgical procedures that have helped eliminate their OSA. Moderators, if the intention of this board is purely CPAP / BiPAP related and this is not something generally discussed, my apologies and I'm happy to edit my post to remove.

I'm the only person I've ever known that has OSA and uses a BiPAP, so thank you very much for any input or advise!

[zonker]

I've been reading these boards for the last 6 months but only got brave enough to post myself today

first off, welcome to the zoo! congrats on starting your cpap journey. good to know that you are working with docs who seem to know what they are doing.

1. I've only had an in-home sleep study, and it was 3.5 years ago. I'd love to have a study done to ensure that all the settings are optimized to make sure I'm getting the most benefit from my machine. Is this a thing? I've heard a lot about OSCAR, how do I set this up? I've read some of the posts about it but I don't understand what it is or how I incorporate it with my equipment?

read this here-

viewtopic/t172378/Sticky--Newbies-PLEAS ... STING.html

if you have questions after reading the link, don't hesitate to ask for clarification.

2. I generally sleep on my side and have started to have issues with the mask leaking in to my eyes no matter how tight I adjust the straps. In fact, I over tightened the straps a few days ago and still have pain on one side of my face from this. I'm only lucky I didn't cause a sore! I'd love some input on how to resolve the eye leak issue?

while waiting for owners of that particular mask to weigh in, go to youtube and search for mask fitting videos and don't forget to put model of mask in the search terms.

4. I'm confused about how to best clean my equipment. The manufacturer says every day but I just can't do that. I tried doing it every week but the water never fully dries out of the equipment. I bought a hurricane dryer on Amazon which works great, but after a few months of use I had a problem with my water chamber loosing a bit of its seal so it would slowly bounce open and make a noise on my exhale. Not sure if this was a fault of the water chamber, age of the equipment at the time (3 months), or using the Hurricane dryer. I'd love to hear from others their thoughts on this?

pls search the forum for cleaning. most of us don't do a daily cleaning. the most *I* do is use a wet wipe daily, replace filter when i think of it and clean the humidifier tank when i get a "round tuit". others clen more frequently. now, hold on to your hat, because whenever the subject of cleaning comes up, a brouhaha inevitably erupts.

last item; sleep apnea is for life. there is no magic operation to make it go away.

good luck!

[Julie]

Hi, as far as cleaning goes, wipes to the silicone of the mask, dusting of outside of machine when filters are replaced, and not a whole lot else! Rinsing hoses is a waste of time unless you're actually aware of anything in them (and how that would have occurred - not sure).

NEVER, EVER let anyone talk you into SoClean - it's a terrible scam, machine makers (e.g. Resmed) void warranties if it's used, and the ozone it uses to 'clean', sanitize, whatever is harmful to you and your machine both. Do a forum search on it for lots and lots of info.

Emptying unused hum. water in the a.m. and just refilling pm is a waste of time and water too. If you see scum in corners of the tank over time (why we say to use distilled water) then use a Q-tip and/or vinegar to get rid of it, but otherwise just refill water to needed level, but it's generally pointless to dump it otherwise.

And as 'he' said - you're probably stuck with OSA for life, at least til some new med breakthrough, but think of it like glasses - put them on, see everything - take them off and poof you can't see...that simple.

[ozij]

2. I generally sleep on my side and have started to have issues with the mask leaking in to my eyes no matter how tight I adjust the straps. In fact, I over tightened the straps a few days ago and still have pain on one side of my face from this. I'm only lucky I didn't cause a sore! I'd love some input on how to resolve the eye leak issue?

Different kinds of pillows (for your head) can help with side sleeping.

3. I travel internationally quite a bit, although this has been curved these past few years due to COVID. I have my first international trip coming up this summer and I'm petrified. I have to bring and use my BiPAP, no question (although I will forgo using it on my outbound overnight flight), but I'm scared about using it in a different country and frying it with the different electricity. I'd love some thoughts / feedback from others who have traveled internationally with their machines.

You won't fry the machine since the machines switch automatically to the proper voltage. What you will need is the correct type of plug, or plug adapter. Since you're an experienced international traveler, I'm sure you know the different plugs - but just in case, and for those who are inexperienced, here's a link to full info about electricity around the world: https://www.worldstandards.eu/electrici ... y-country/

4. I'm confused about how to best clean my equipment.

It really is confusing, and opinions vary.
It also depends very much on where you live, as well. High humidity? Low Humidity? Dusty? Hard water? Soft water? etc.
I've actually switched from being rather lax on emptying the humidifier to emptying it daily. and letting it air dry, upside down. The Resmed Humidaire 5 has so many nooks and crannies for gunk to thrive in, that I feel better doing that.
Cleaning: years ago somebody recommended the tabs you use for cleaning dentures, I use them once in a while (once a month or every two weeks more or less), they work like a charm. One tab to the maximum water capacity of the humidifier.
Resmed machines have the wonderful feature of gently blowing air out through the system for 30 minutes after you've turned them off. Between the heated hose - which never has rainout (i.e. in which water never condenses) - and this gentle, 30 minute post-therapy blowing, I too don't feel the need to wash and dry my hose.
Yes, I've timed the blowing, and you can feel it on the back of your hand.
Given the amounts of dust where I live, I keep my machine in a drawer, which I pull out in order to use the machine directly from it, drape a towel over the CPAP when I've removed the humidifier, and unplug the machine, then close the drawer. Unplug because the plugged, covered machine generates some heat.

Maybe I should add that I use a hypoallergenic filter - which really filters out a lot of stuff as well. I actually change the filter every two weeks - it gets that gray!

...but think of it like glasses - put them on, see everything - take them off and poof you can't see...that simple.

Love that analogy. Even though there are surgeries nowadays to correct your eyesight... I wouldn't go through any surgery to correct major anatomical problems – have been using CPAP nightly for 17 years.
And CPAPTALK was what helped me get a handle on it.

[Blue_Coral47]

Thanks to everybody for the reply - really appreciate this feedback. I'm continuing to have trouble with my mask even though I've watched a lot of videos, and in fact it's actually felt like the pressure on my machine is less now that I've switched out to a new mask (same style of mask, just time to replace the parts). I never had an issue with leakage until I had to replace the mask, so maybe I got a dud, does that happen?

When I received my OSA diagnosis I was with Kaiser but I'm now with BlueShield and looking for a sleep doctor than can monitor my usage and, if necessary, adjust settings, etc. I'm in the California Bay Area so very close to Stanford, UCSF, etc. but have not had the best luck finding somebody I've connected with in this area. The first non-Kaiser doctor I saw had me attend a titration study where I had to sign a waiver that I'd be using a recalled Philip's machine as part of the study, and later explained to me that the recall had nothing to do with the foam issue but with backend data processing which I know isn't correct. The second doctor I'm now seeing has an abysmal back office insurance authorizations team and I'm wondering if I should look for somebody else. Other forums I've belonged to keep a list of recommended doctors, is that something this message board has, or would anybody in my area be able to provide recommendations?

[Jlfinkels]

3. I travel internationally quite a bit, although this has been curved these past few years due to COVID. I have my first international trip coming up this summer and I'm petrified. I have to bring and use my BiPAP, no question (although I will forgo using it on my outbound overnight flight), but I'm scared about using it in a different country and frying it with the different electricity. I'd love some thoughts / feedback from others who have traveled internationally with their machines.

I travel internationally quite a bit as well and just got back from a 2 week trip. I travel with a 220v-110v step-down power converter that has a standard plug on one side and two USB plugs with built-in plugs for pretty much every country, a 3’ extension cord that plugs into a surge protected power strip with 2 plugs, which is where I plug in the BiPAP/Vauto. I’ve taken it to a number of different countries over the past 9 months with no issues so far.

Note that I have a separate machine, hose, and mask for travel, so I don’t have to worry about my main setup at home getting messed up. Everything I take is identical to home. I use tap water in the humidifier tank when traveling, then just rinse the tank/hose/mask or use soapy water to clean when I get home.

The only challenge may be not every country treats a CPAP as not counting towards on-board luggage. Plan your trip accordingly. I was only caught by surprise once before I learned to check in advance.

[ozij]

The only challenge may be not every country treats a CPAP as not counting towards on-board luggage. Plan your trip accordingly. I was only caught by surprise once before I learned to check in advance.

Do you mean as a separate carry on?
A doctor's letter indicating you need the CPAP *every night* can be helpful.

[Jlfinkels]

The only challenge may be not every country treats a CPAP as not counting towards on-board luggage. Plan your trip accordingly. I was only caught by surprise once before I learned to check in advance.

Do you mean as a separate carry on?
A doctor's letter indicating you need the CPAP *every night* can be helpful.

Yes, as carry-on when traveling between International countries/cities. I haven’t tried a Dr’s note, but do travel with a prescription which worked the one time I needed it so far. When I’m going to be traveling between countries/cities by plane I use a small cabin bag that can expand to fit the CPAP if needed so I only have to take one bag on-board.