CPAPtalk.com

I now self-fund all my CPAP supplies, but back when I used a DME, I just wouldn't order anything I didn't actually need. As for need: I've been using the same long hose and water chamber for about three years. I do change the machine's filter once a month.

And about cleaning: I clean the long hose or the water chamber maybe once a year.

Water when I'm traveling: I use tap water without any problems.

Pillow masks that route the hose up: I kind of liked the Aloha mask back before I started using the Bleep system.

Like RobySue, I find that by using a hose cozy on both my long and short hoses, I no longer need to use a hose stand (aka hose lift) to get my hose out of the way.

If it helps -
For air travel your CPAP is counted as a medical device and not considered against your carry-on allowance. It is not required but you can buy a medical device tag to add to the case to remind the desk people of that fact.

I was using a cardboard box - moving box 1.5cuft - but I got a 2 drawer plastic case from the thrift shop for a couple of bucks that my spares fit into for the most part. I do have overflow still in the box of all the different types of masks I tried when I was starting out as well as some of the other spares that won't fit in the closet plastic box. I tried 9 different masks mostly out of pocket before I settled on the F30 or the F20.

There is nothing wrong with people 'seeing' you with a cpap - it is just a simple medical condition and you are treating it properly.

I tried a variety of the nose plug/pillow style when I was still wearing glasses and they all wanted to pull my nose up onto my forehead before they sealed right. The N20 works if you are a nose breather and either tape the mouth, wear a collar, or a mouth device.

The style I found that worked the best was the standard F30. I could wear my glasses with it and read or watch TV without a problem. I tried the N30i/P30i/P20/etc before I got to that one. Then I had issues with it pinching the sides of my nose and it hurt to use after a few days and the WIDE wouldn't seal. So, I switched to the F&P Evora FFM - it looks just like the F30 but it has a slightly wider medium mask that didn't pinch. I was able to read with it and all the like and wear it with no trouble.

I do trade off different versions of mask from time to time when one causes a rubbing or other issue. I got cataract surgery done in January and don't need glasses anymore.

For contact point issues I use a tiny dab of this on the face before putting on the mask - been using the same tub I started with for 9 months now and it still has over 1/2 in it. This is also good for when the insides of your nose get dried out or irritated. It is intended for use with oxygen when your nose is dried out and it won't hurt your skin at all. Whatever you do, don't use vasaline - it dries things out.
https://www.amazon.com/Aquegel-Breathe- ... B00EEA5MSW

Like the resmed masks ending in 'i' there is a top feed version. You can look on cpap.com or any of the other websites and find a few different top feed version.

I wipe the nose piece daily and do a full clean of everything maybe once a month, maybe longer. I have 3 hoses I am rotating through so when I start to get a smell or some other issue I swap to the clean hose and just air dry the old one good and set it aside. When they are all dirty I wash them all at once. I have another 3 hoses that are still in the package.

For the tank I empty it daily and set it aside open to air dry. I use deionized reverse osmosis water in it at home so never a problem with mineral buildup. When I do travel I usually just used bottled water or tap water and still empty it or set it open to dry. If there is visible build up when I get back I clean with a bit of vinegar.

The hose cover that is soft and velvety helps a lot when you are sleeping with a mask that has the hose in front - it takes away the plastic feel and I never notice the hose is there once I am settled in. The other thing that might help you is a hose hanger, it keeps the hose up off you.

Something like this
https://www.amazon.com/Support-Height_A ... B0BYHDQ679


For mask fit - read this - it sounds like you might be using the straps to tight.
https://www.apneaboard.com/wiki/index.p ... _Jeffy1958

Reply:
As far as people seeing me with a mask on. I barely can stand to see myself and in a month I have only ventured into the twice. It made me look old and I am not old. When I feel comfortable with it I will feel better sharing it with others.

I'm curious why people wear it when they are awake. Mine goes on when I go to bed and comes off when I wake up. I guess everyone does it differently. I didn't even warm up to it that way. I just slapped it on and went to bed. Have been doing it every night. I do think it is wise to be able to trade out. I have the N30i cushions and P30i pillows at this time. I also like the idea of stockpiling for a rainy day. I have been emptying the tank daily but am not setting it aside with it open. I probably should as sometimes there is condensation in it at night. I wipe the mask down in the morning before getting out of bed. I want my bedroom to look as normal as possible and not clinical. I feel like where I have the machine is perfect at the moment and with the hose on top it works well. I haven't experienced a rainout or anything. I have used Satin Hose covers and fleece hose covers. I have silk ones coming soon. I also am going to work on making some with my mom out of things I have around the house when she comes in a couple of weeks. If I loosen the straps, I have noticed that they seal better and don't ride up on my face as much. I also lowered the humidity and temperature so it doesn't get as hot. I think I'm on the right track. Just have to nail it all down.

Thank you for replying.

I'm not sure how to respond to each of your individually so I will do it in a group message. I do appreciate your input. I replied in Bold and highlighted your user names in bold. If anyone can give me pointers on responding to individuals that would be great.

Contact: Contact robbob2112
Post by robbob2112 » Tue Jul 02, 2024 9:03 am

If it helps -
For air travel your CPAP is counted as a medical device and not considered against your carry-on allowance. It is not required but you can buy a medical device tag to add to the case to remind the desk people of that fact. I have already purchased a tag and am ready to go in that department.

I was using a cardboard box - moving box 1.5cuft - but I got a 2 drawer plastic case from the thrift shop for a couple of bucks that my spares fit into for the most part. I do have overflow still in the box of all the different types of masks I tried when I was starting out as well as some of the other spares that won't fit in the closet plastic box. I tried 9 different masks mostly out of pocket before I settled on the F30 or the F20. I'm going to abandon my plastic box for the camper and will start using it to store extra supplies.

There is nothing wrong with people 'seeing' you with a cpap - it is just a simple medical condition and you are treating it properly. I have looked at myself twice in the mirror since getting the machine. Both times have been short and let's just say it is not a youthful look and I am not old. So, at this time I am not wanting people to see me with it on. That will hopefully change one day.

I tried a variety of the nose plug/pillow style when I was still wearing glasses and they all wanted to pull my nose up onto my forehead before they sealed right. The N20 works if you are a nose breather and either tape the mouth, wear a collar, or a mouth device.

The style I found that worked the best was the standard F30. I could wear my glasses with it and read or watch TV without a problem. I tried the N30i/P30i/P20/etc before I got to that one. Then I had issues with it pinching the sides of my nose and it hurt to use after a few days and the WIDE wouldn't seal. So, I switched to the F&P Evora FFM - it looks just like the F30 but it has a slightly wider medium mask that didn't pinch. I was able to read with it and all the like and wear it with no trouble. Why do people wear it when they watch TV and Read? Just curious. I use it only when I go to bed and wake up in the morning. If I get up at night I take it off and do something till I'm ready to sleep again. Than I put it back on.

I do trade off different versions of mask from time to time when one causes a rubbing or other issue. I got cataract surgery done in January and don't need glasses anymore. Smart ideaI think I will get several styles so I can switch in and out. Currently using N30i and P30i.

For contact point issues I use a tiny dab of this on the face before putting on the mask - been using the same tub I started with for 9 months now and it still has over 1/2 in it. This is also good for when the insides of your nose get dried out or irritated. It is intended for use with oxygen when your nose is dried out and it won't hurt your skin at all. Whatever you do, don't use vasaline - it dries things out.
https://www.amazon.com/Aquegel-Breathe- ... B00EEA5MSW Thanks for the tip I have been using Ayr gel. Maybe this stuff is better.

Like the resmed masks ending in 'i' there is a top feed version. You can look on cpap.com or any of the other websites and find a few different top feed version.

I wipe the nose piece daily and do a full clean of everything maybe once a month, maybe longer. I have 3 hoses I am rotating through so when I start to get a smell or some other issue I swap to the clean hose and just air dry the old one good and set it aside. When they are all dirty I wash them all at once. I have another 3 hoses that are still in the package. I am wiping the nose piece and headgear daily. I empty out the humidifier but I haven't left it open. Maybe I should since sometimes it has condensation in it when I put water in it at night.

For the tank I empty it daily and set it aside open to air dry. I use deionized reverse osmosis water in it at home so never a problem with mineral buildup. When I do travel I usually just used bottled water or tap water and still empty it or set it open to dry. If there is visible build up when I get back I clean with a bit of vinegar.

The hose cover that is soft and velvety helps a lot when you are sleeping with a mask that has the hose in front - it takes away the plastic feel and I never notice the hose is there once I am settled in. The other thing that might help you is a hose hanger, it keeps the hose up off you. I have tried fleece and Satin. I currently have Satin on the frame to help cut down hair damage. I am going to be using some items I have around the house to make covers when my mom comes in a couple weeks. I don't want my bedroom looking clinical so hose hangers are out. I do like the set up I have currently and haven't experienced rain out because my machine is slightly lower than my bed. I don't have a typical house so space and storage is very limited.

Something like this
https://www.amazon.com/Support-Height_A ... B0BYHDQ679

For mask fit - read this - it sounds like you might be using the straps to tight.
https://www.apneaboard.com/wiki/index.p ... _Jeffy1958 Thank you for the article. I loosened the straps a little last night and did well with the N30i.


User avatarrobysue1
Contact: Contact robysue1
Post by robysue1 » Tue Jul 02, 2024 9:10 am

Bubbles2024 wrote: ↑Mon Jul 01, 2024 7:22 pm
Mask fit issues....

And I have reread everything you've written and I haven't found a specific reason for not wanting a hose in front. I really think that a mask like the N30 instead of the N30i might solve some of your current problems. In particular, getting the air hose off your cheeks will make the mask sound less loud to you when you are lying in bed listening to the sound of your own breathing and the fan in the CPAP.
I don't want nerve damage, sores, breakouts, bridge of nose to hurt and get sores making wearing glasses uncomfortable, teeth too move etc. I don't want mouth tape or chin straps.
None of this applies to swapping the N30i out for the N30. The N30i and the N30 essentially have the same headgear design, except that the side straps of the N30 are just cloth---they don't have an air hose inside of them. I don't want a hose in front because of sensory issues, fear of getting tangled in it, etc. The sound of the mask doesn't bother me as I think of it as white nose which puts me to sleep. Once I am asleep I don't notice the sound at all. I have heard of people getting nerve damage after long term use of full face masks. I don't want sores on my nose because I wear glasses and I have dental work so I don't want my teeth moving, I also have sensitive skin.

Have you ever tried a mask like the N30?
I don't want the hose touching any part of my body.
I don't like the bare hose touching my body either. And yet I use both the Swift FX and P10 nasal pillows masks that have the hose in front all the time.

You wonder: How do I keep the hose from touching my body? Here's how: I have both the main hose and the short mask hose in hose cozies. The fleece jackets for the hoses make them not feel like a hose when they they do touch my body. Now, because my nose loves the humidity set to its max setting and I get rainout issues I also run the hose under the covers and next to me, but because it is covered up in a fleece hose cozy it does not feel like a cold, plastic CPAP hose. It feels rather like a stuffed toy to be honest. I have heard of people snuggling up with them. I'm just not sure that's for me. Snuggling up with medical equipment is not my jam yet.

My husband wears a traditional FFM with a forehead support---my version of a mask from hell. His mask also attaches at the front. His hose never touches his body because he routes the hose up and over the headboard rather than running the hose under the covers.

Many folks around here have either bought or made hose hanging systems that help prevent the hose from touching the body as well as giving more freedom to turn over in bed without getting tangled up in the hose. (
I don't want my room looking clinical, so permanent hose hangers are out.

I'm also tired of feeling like the straps are going to slide up into my eyeballs.
This is another sign that your current mask is not working for you and that you need to try something different. I have changed a few items on the mask and I feel like it isn't sliding as much. I just think that the space between my check and eye is so narrow it probably won't matter what I use. I looked this morning and I have about a little less than half a finger length between frame and eye

Here's what the Resmed N30i looks like:

Which part of the headgear feels like it's going to slide into your eyeballs? The top part above where the back strap comes in? Or the bottom part below where the back strap comes in? If you can answer that question, it would go a long way towards helping us make suggestions on what alternative masks you might want to consider.
I did trade out the resmed strap for the dream strap and that seems to help a little with the frame wanting to slide into my eyeballs. To answer both questions I purchased the Silicone Headgear with Arms for DreamWear Nasal & Pillow Masks. it is designed differently and the last two nights the frame has not slipped. I purchased just that part of the DreamWear mask because it was way cheaper than buying the entire thing and I know someone who just changed the parts. The resmed strap wasn't sitting on the back of my head right unless I strapped it real tight.
I'm not sure what you mean by the "dream strap". Do you mean the back strap of the PR DreamWear mask? To be honest, I'm not sure how switching just the back strap might help with the feeling that the frame wants to slide into your eyeballs.

But if switching the back strap helped, did you consider just using the PR DreamWear nasal mask itself. That mask does have the hose attached at the top of the head:
Image
The current cushion flaps on the bottom of the skin between my nose and feels like it's been beat in the morning. I didn't feel this this morning. Maybe I am having a break through.
Have you tried looking at Padacheek [https://www.padacheek.com] for a mask liner for the mask cushion itself? While I didn't see anything specifically listed for the Resmed N30i, she has a lot of liner styles that might work. Or you can contact her directly through her web page and ask if she could design something for you. I will look into padacheek. I have some silk coming soon and my mom and I are going to make some out of things I have around the house as well

The idea behind the mask liner is that they prevent the silicone in the mask itself from touching your skin. She designs the liners, pads, and cozies so they do not interfere with the exhaust venting of the mask. The fabric she uses for the liners that go over the mask cushions are high quality and have a smooth, cool satiny feel. They come in a wide variety of colors and last a long time.

Note: Padacheek is a long time member here, but doesn't post much. Many of us have used her products through the years. They are high quality and last a long, long time. And if you don't see what you are looking for on her site, she is usually amenable to designing something for your needs. Back when I was just starting out, she designed a pad that covered the entire silicone part of the frame for me. I still use that pad when ever I use the Swift FX, even though it's now well over 10 years old. I also use her nasal pillow liners/cozies on a regular basis for both my P10 and my Swift FX masks. They last a long time. You can either hand wash them or toss them into the washer and dryer---she recommends a gentil cycle and low heat. In the winter time when I use them regularly, I do find I have to swap them out far more often than the pillows themselves because I drool a lot while sleeping. I typically toss a whole bunch of dirty ones in a zipper style lingerie bag and toss it into the wash with an appropriate load of clothes.

I also got a pimple sore on my nose and yes I do care what I look like. So it is a big deal.
Using a Padacheek liner should help prevent pimples.
I use ayr gel nightly.
Another product that can also help with the CPAP-skin related problems is Lansinoh nipple cream for nursing mothers. It's pure lanolin and does a really good job of soothing sore skin as well as helping it heal and preventing the problem once the skin has healed. A little goes a long, long way and it's easy to find in the baby aisle at most grocery and drug stores. And it may be cheaper than the Ayr gel you are currently using. Thank you for the Lanolin tip.


User avatarr
Post by robysue1 » Tue Jul 02, 2024 9:12 am

Bubbles2024 wrote: ↑Mon Jul 01, 2024 7:22 pm
Thank you all for your responses. The problem I have is the carry case won't hold my toiletries too.now that I have the machine instead of two small bags I have three small toiletry bags. I'm not sure how I can limit much, because of sinus issues I have to take an irrigation bottle and the salt packets, Allergy med, flonase, and ayr gel. Because of the skin issues I have to have my morning regemine and evening all new things in the last two months. I used to only carry teeth cleaning supplies, foundation, a foundation brush a hairbrush and comb, hair ties, and tylenol, etc. I also take chapstick now and lotion as a part of the bedtime routine. Plus feminine hygine products just encase
In all seriousness, consider cutting back on the toiletries that you regard as "essential" for travel. My husband and I share one extremely small "dopp kit" bag for all the toiletries that both of us use on a regular basis. Really examine just how much make-up and hair products and body products you really need to bring on trips.

I only took wipes for cleaning last week. I have been doing a full clean once a week. Those days make me so mood maybe I should do it every two weeks.
What do you mean by a "full clean"? I have been soaking the hose, mask, frame, humdifier etc in baby shampoo once a week, I lay a towel on the bed and dry everything there before putting it back together. When I put it back together I run the mask fit to blow out any access water. Everything has to be put together before bed that night.

If you wipe or rinse the mask cushion daily, you probably don't need to be doing much of anything else for taking care of the mask cushion. I wipe the frame and cushion every morning before I get out of bed.
How do you store all your extras at home after you stock pile when insurance pays. Containers, bags etc?
I just use a dresser drawer. It's large enough to store everything we've accumulated. I use the top of the dresser to pile stuff that has been used and swapped out until I'm good and ready to actually clean it all. For me, I'd rather clean a whole bunch of hoses and masks all at once every few months than one hose and mask every single week. It doesn't take that much longer to clean 4 or 5 hoses than it takes to clean 1 or 2. It doesn't take any longer to clean a whole bunch of nasal pillows and FFM cushions than it takes to clean one of each. I just put what I'm cleaning in the bathroom sink and soak it for a few hours and then rinse well. (I prefer to just use diluted vinegar-water to soak the hoses and humidifier tanks; sometimes I use a tiny bit of a neutral smelling dishwashing liquid to soak the nasal pillows and mask cushions instead of the vinegar-water.) After rinsing, I hang the hoses to dry on an over the door set of robe/clothing hooks in the bedroom and put the rest of the stuff on a towel on top of the dresser to air dry. I then stick everything back in the drawer, usually the next day. I'm going to abandon the container I got for the camper and use it to store supplies. I live in an old house that doesn't have closets, I don't have a dresser either, and also has limited space. It will probably just go under the bed.


User avatarrobysue1
Post by robysue1 » Tue Jul 02, 2024 9:15 am

Bubbles2024 wrote: ↑Mon Jul 01, 2024 7:22 pm
I only need a battery when I go to parents. I may not go this year because I don't want to have to deal with a battery and the noise and the seeing me like this. They will be coming here soon but won't be staying with us so I will get to see them.
Get over the shame. Seriously---your parents won't be bothered by your using a CPAP when both you and they are asleep. Not that easy they are currently living in a fifth wheel off the grid until their tiny cabin is finished. So yeah it will effect them.

As for the noise: The modern xPAPs are very quiet. It seems loud to your ears because you are right next to the machine and with the Resmed N30i mask you are using, the noise of the machine's fan and your own breathing is likely being amplified and conducted directly into your ears through your skull since the air hose is running right along side your cheek bones. No-one else hears that conducted noise, and if you switched to a mask where the hose attached in front instead of on the top of your head, you might hear a whole lot less noise. The noise doesn't bother me. It's like white noise and puts me to sleep. When I am asleep I don't hear anything. I can't hear the machine either.

And why would you need batteries to run the CPAP at your parents' house? Do your parents live off grid? Or do they live outside the US with different electrical setup? With the appropriate adapter plug a CPAP will run off the standard power available in any country worldwide. And the adapter plugs are small enough to just stick in the CPAP carrying case. (My husband and I traveled in Europe and Turkey for 45 days in 2022 with both CPAPs in tow and had no problems at all using the CPAPs with adapter plugs every we went.)

If your parents really do live off grid, then it might be reasonable to buy a battery and solar kit and leave them stored at your parents' house so that you don't have to transport the additional equipment for your visits.
I love the solar idea but takes up way to much space and involves way To many parts. Glad it works for you. What I need is to find a system that doesn't cost so much. What you are saying is I should spend money on something to leave at my parents and than spend money for a backup supply if power goes out at my house. I'm not made of money and this diagnosis scares me as it is very costly to maintain. I one thing not many spread out all over. They don't have electricity. They do have very little solar and maybe a generator if the generator is working.
We do car camping and right now we just plug the batteries in at the campsite restroom every 2 or 3 days for about 3 or 4 hours to recharge. I'd love to have a solar panel for charging so that we could do more primitive camping for longer than a couple of nights.


User avatarMiss Emerita
Post by Miss Emerita » Tue Jul 02, 2024 11:43 am

I now self-fund all my CPAP supplies, but back when I used a DME, I just wouldn't order anything I didn't actually need. As for need: I've been using the same long hose and water chamber for about three years. I do change the machine's filter once a month. Thank you for sharing that information. Perhaps I don't need to be so hard on myself and stop cleaning it all everyweek.

And about cleaning: I clean the long hose or the water chamber maybe once a year.

Water when I'm traveling: I use tap water without any problems.

Pillow masks that route the hose up: I kind of liked the Aloha mask back before I started using the Bleep system.

Like RobySue, I find that by using a hose cozy on both my long and short hoses, I no longer need to use a hose stand (aka hose lift) to get my hose out of the way. I don't want my bedroom to look clinical so stands are out of the question.I'm still not comfortable with the idea of using a hose in front mask but maybe someday I will be.

_________________

Bubbles2024 wrote: ↑

Tue Jul 02, 2024 8:56 pm

If anyone can give me pointers on responding to individuals that would be great.

Here is how I do it so that I don't quote a big block of text and instead want to just answer a question.

Open the reply to box so you have a blank slate to work with.

Everyone's past posts are available if you just scroll down....so scroll down and find the response you want to reply to individually and take your mouse cursor and highlight the text you want to quote.....then look in the upper right corner for the little quote thingies and click on it. It's right next to the i button for info.... Don't use the quotes on the forum editor because that makes use of just copying text and not necessarily who you are quoting.

So if I wanted to reply to something RobySue said I would scroll down to her post and find the text I was replying to and I would highlight it and then click on the quote button....like this

robysue1 wrote: ↑

Tue Jul 02, 2024 9:15 am

Get over the shame.

Or MissE

Miss Emerita wrote: ↑

Tue Jul 02, 2024 11:43 am

Water when I'm traveling: I use tap water without any problems.

You can do some tests and then you can delete them or I can if you wish. Play around with it.
Much better (and less work for you and us) doing it this way.

Thank you for the tips. I will do that next time.

For the marks on the face from the straps I have two suggestions

First they have soft covers for the straps that prevent them from being as bad.

Second, lay a warm/hot wet rag on your face for 5 to 10 minutes. It will get rid of 99% of the lines in that time.

About hose stands: the Houdini telescopes down so it can be tucked behind a pillow during the day.

Bubbles2024 wrote: ↑

Tue Jul 02, 2024 7:50 pm

Reply:
As far as people seeing me with a mask on.

Outside of your partner, how many people actually see you when you are lying in your bed asleep? In previous posts, you have expressed concern about people seeing the cpap equipment in your bedroom. Now you've upped the ante and say that you don't want people to see you with the actual mask on your face.

Either way, you are expressing your feelings of shame. A shame that is totally unwarranted.

Your family members want what is best for you and your health. And if that means you need to wear a mask in the privacy of your own bedroom, then they won't criticize you for setting up the CPAP and wearing the mask even when you are visiting them overnight at their house.

Think of it this way: If you were diagnosed with type 1 diabetes and required frequent insulin shots to manage your condition, would you be worried that someone might see your insulin in the refrigerator or your blood testing kits on the counter? Would you insist that it was too much trouble to bring the insulin and other required paraphernalia with you on a road trip?

I barely can stand to see myself and in a month I have only ventured into the twice. It made me look old and I am not old.

You need some serious therapy if you are using CPAP therapy as an excuse to not venture outside your house.

CPAP is not what is making you look old. Lack of sleep perhaps is.

Now, it is possible that you are dealing with things like strap marks. If that's the case, there are lots of things that can be done. But one of the first is trying a different mask, and you seem to be extremely reluctant to try anything but the Resmed N30i. As I've tried to explain before, the fact that the side straps are air hoses in the N30i may be contributing to your problems: Those side straps are bulkier (and hence more prone to leaving marks in the morning) than masks that have the hose connection in the front, particularly if you are a side sleeper.

If you were willing to give nasal pillows another try, then the Bleep that Pugsy uses would be a good candidate to try: It has no headgear at all. But it is a nasal pillows mask and because there is no headgear, the hose attachment is at the front.

When I feel comfortable with it I will feel better sharing it with others.

It's not a matter of sharing so much as a matter of learning how to not worry that someone in your life might see the equipment and then ask you a question. Or learning how to not worry about someone you care about asking why you're looking so tired these days.

In other words, think about the people who actually have access to your bedroom. If one of them happens to see the equipment and asks you about it, then simply tell them that yeah, you've been prescribed a CPAP. If they're someone who is close enough to you to tolerate a bit of a rant, let some steam off and tell them it's not been an easy adjustment for you and you're still not sleeping well.

If someone in your life who doesn't have access to your bedroom asks why you seem to look so tired these days, tell them that you've got some sleeping problems and that you're working with a doctor on getting them treated. Then change the conversation to something else.

I'm curious why people wear it when they are awake. Mine goes on when I go to bed and comes off when I wake up. I guess everyone does it differently. I didn't even warm up to it that way. I just slapped it on and went to bed. Have been doing it every night.

Everyone who starts this therapy has their own personal reaction to it.

It sounds like you have been able to get to sleep and stay asleep while using the mask. If that is the case, then count your blessings. Many new CPAPers find that attempting to sleep with the mask on their face extremely difficult---as in they lie in bed for hours and never really seem to get to a sound sleep. This can cause some of them to develop an actual fear of the mask and all the sensations that they notice while lying in bed trying to get to sleep; and their fear and being overwhelmed by the strange sensory stimuli makes them jerk wide awake just as they start to fall asleep with the mask on. And that happens repeatedly night after night. That's when we start suggesting that someone wear the mask (short term) during the daytime in order to teach their body the normal sensations that come from the machine. Using the machine in the daytime when they are not trying to sleep allows this group of new PAPers the chance to teach their bodies and minds to not fear the machine. And that makes it easier for them to relax and actually fall asleep while using the mask.

But most new CPAPers? No, they don't need to use the machine in the daytime "just to get used to it." If they're not having any serious problems getting to sleep or staying asleep once they do get to sleep, there's no need to use it in the daytime. Heck, I never used the machine during the daytime even during my months-long hellish adjustment period that included a raging case of insomnia like I'd never experienced before: In my case my inability to fall asleep with the mask on my nose was not so much anxiety as a feeling of being force-fed too much air while trying to get to sleep which led to severe aerophagia that aggravated the insomnia. But I'm an outlier---most people don't have the particular combination of problems that I had when getting used to using xPAP.

Then there is also this little tidbit that I learned when my late MIL was prescribed a BiPAP for her COPD: For a small group of folks with COPD, daytime use of a BiPAP together with supplemental O2 can help ease the COPD symptoms a bit better than just the supplemental O2 by itself.

Beware! The DME will try to sell you everything possible--
Even an ozone machine--which will
VOID YOUR WARRANTY.

When I first started using my machine, I felt as though I was all alone in having apnea. Then over time I learned that two people on my block use CPAP, two people in the office, two old friends (who are so used to it they never thought to mention it), plus many people in airports with those ResMed bags. We're all over the place!

Miss Emerita wrote: ↑

Wed Jul 03, 2024 11:19 am

When I first started using my machine, I felt as though I was all alone in having apnea. Then over time I learned that two people on my block use CPAP, two people in the office, two old friends (who are so used to it they never thought to mention it), plus many people in airports with those ResMed bags. We're all over the place!

I know there are many with this diagnosis. I have a riding friend who has it. My coworker has it. They don't talk about it. I know she has had tons of problems health wise and is my age. I haven't had any real health problems except for this and I am so worried this is going to lead to more. My coworker has severe anxiety, allergies, asthma, yeast infections in her ears, teeth problems, does horrible with ansthetic during surgeries, etc. I don't want that to be me. I think that is my problem at the moment. My riding friend is male and he just doesn't like the mask but doesn't have any other real problems. The DME respiratory therapist said men usually handle treatment better and faster. I just worry about all the side effects and want to get ahead of them so that I don't have them. Maybe that isn't realistic.

chunkyfrog wrote: ↑

Wed Jul 03, 2024 11:11 am

Beware! The DME will try to sell you everything possible--
Even an ozone machine--which will
VOID YOUR WARRANTY.

Amen and Dually noted!!!!!

Remember, no DME is expected to consider the oath to do no harm.
Some do, but many do not.

Bubbles2024 wrote: ↑

Wed Jul 03, 2024 12:46 pm

My coworker has it. They don't talk about it. I know she has had tons of problems health wise and is my age. I haven't had any real health problems except for this and I am so worried this is going to lead to more.

The health problems associated with sleep apnea are associated with untreated and undertreated sleep apnea.

My coworker has severe anxiety, allergies, asthma, yeast infections in her ears, teeth problems, does horrible with ansthetic during surgeries, etc. I don't want that to be me.

Except for "does horrible with anesthesia" none of these health problems have a strong correlation with sleep apnea or CPAP therapy.

General anxiety, allergies, asthma, yeast infections, ear problems, teeth problems---all of those things develop independent of OSA. Now having any of them can make it a bit harder to treat OSA because you have to manage more than one chronic problem at a time. But OSA doesn't cause them.

The connection between OSA and "does horrible with anesthesia" boils down to two things:

1) Many people who have very small airways (high mallampati scores) have trouble with anesthesia because the airway is so small. And that small airway can also be much more prone to collapsing while asleep. So people with very small airways have a higher than expected rate of OSA even when they're skinny.

2) When people with severe OSA are sedated and their autonomic nervous system takes over responsibility for breathing, their airways tend to collapse, particularly during recovery after surgery while the anesthesia is in the process of wearing off and the tube is no longer down their airway. This is why many surgical centers are open to the idea of a person with severe OSA bringing their machine with them when they arrive for surgery: If problems with apneas occur during recovery, the correctly set CPAP + mask is already there and available for use.

I think that is my problem at the moment. My riding friend is male and he just doesn't like the mask but doesn't have any other real problems.

Just like you---he doesn't like the mask. Lots of people don't like the mask. But lots of those folks who don't like the mask use it anyway because they understand the benefits outweigh the drawbacks.

I just worry about all the side effects and want to get ahead of them so that I don't have them. Maybe that isn't realistic.

What "side effects" are you worried about? Seriously? CPAP is about as benign of a medical treatment as you can find for a chronic medical condition: It's just plain old air that is being blown at your upper airway during the night.

robysue1 wrote: ↑

Wed Jul 03, 2024 7:36 am

Outside of your partner, how many people actually see you when you are lying in your bed asleep? In previous posts, you have expressed concern about people seeing the cpap equipment in your bedroom. Now you've upped the ante and say that you don't want people to see you with the actual mask on your face.

I live in an old house we don't have closets or dressers. The only bathroom we have is accessible through the master bedroom. So yes, any guest that uses the bathroom would see anything I have out, which is why I keep it stored away for easy access at night. I should make it clear that having others see me with the mask on is uncomfortable. I don't have a problem with respiratory therapists or doctors because they see people all the time this way. I do have problems with not only myself seeing me in it but others as well. I also struggled at first to even look at pictures of people wearing them, but that is getting easier. It is just such an unnatural thing to me, and I have never been about this kind of stuff, so... it will be a long road of acceptance on my own time. I am making break throughs I sent a photo to someone showing just about a quarter of my face with the mask on. I will get there but don't need to be told that the way I feel is not warranted. I am also able to look at people where masks in pictures now for longer and I don't get sick to my stomach. I do better looking at people with hoses on top, but front hoses are starting to bother me less.

robysue1 wrote: ↑

Wed Jul 03, 2024 7:36 am

Your family members want what is best for you and your health. And if that means you need to wear a mask in the privacy of your own bedroom, then they won't criticize you for setting up the CPAP and wearing the mask even when you are visiting them overnight at their house.

I have to sleep on the couch in the living room of my parents camper which is connected to the kitchen and the main entry door. I do not have any privacy there and I don't know how it's going to work trying to sleep on a couch, plus the machine would have to be in the walkway. I am thinking that maybe if I want to go I just get a hotel room and commute. I could take the camper but hubs doesn't want to try to get it up to there place so that is out. The other option is to just drive up for the day.

robysue1 wrote: ↑

Wed Jul 03, 2024 7:36 am

Think of it this way: If you were diagnosed with type 1 diabetes and required frequent insulin shots to manage your condition, would you be worried that someone might see your insulin in the refrigerator or your blood testing kits on the counter? Would you insist that it was too much trouble to bring the insulin and other required paraphernalia with you on a road trip?

Those items are much smaller so no I wouldn't be worried about taking them on a road trip. Insulin can be hidden in a back corner and testing kits can be keep in a cupboard, medicine cabinet etc. I have seen people test their blood sugar discretely. It takes a second to do. There is nothing discrete about this. In my mind not a great comparison. We agree to disagree here.

robysue1 wrote: ↑

Wed Jul 03, 2024 7:36 am

You need some serious therapy if you are using CPAP therapy as an excuse to not venture outside your house.

Judgemental just a tad. I just got back from a 7 day vacation in the black hills where I was out and about everyday, riding motorcycle, flying in helicopters, exploring by car and foot. I took the machine and slept good all but one night. Yes it was in the way and yes I cursed it because I had to take extra stuff i wouldn't normally take but I used it. I went to lunch with a friend yesterday. FYI she knows I use a CPAP machine and has been there for me through thick and thin. We didn't talk about it. I haven't been out today because I am dealing with some depression due to a lack of sleep last night and feeling frustrated with the entire process. Oh I take that back I delivered a shirt to my husband at work. So I have been out. I plan on going to work again in August and I plan on going to other events coming up. So as far as not venturing out of the house wrong. I think it is more about privacy than anything. I don't think that is to much to ask for.

chunkyfrog wrote: ↑

Wed Jul 03, 2024 11:11 am

CPAP is not what is making you look old. Lack of sleep perhaps is.

What is considered lack of sleep? Lack of hours? Lack of Quality? I don't really know. What I do know is that pimples I didn't have, sores on my nose I didn't have and constant feeling of mask on my face even when I take it off is what makes me feel old. The fact I have medical equipment attached to my face makes me feel old. Up until 2 months ago at the age of 50 I would say I don't feel old. Boy do I now. I just hope it is possible to regain my youthfulness my so called rock star smile and personality. It has taken a beating over this.

robysue1 wrote: ↑

Wed Jul 03, 2024 7:36 am

But one of the first is trying a different mask, and you seem to be extremely reluctant to try anything but the Resmed N30i.

Not true I started with the p30i was doing well with it till 8 days in when it started wearing the tissue down in my nose. So I struggled through it for a week still getting good results while using moisturizers to help heal the tissue until I went in for another fitting where I got the N30i. At the time I asked if I could also try the F30i. This was within the 30 day period where my insurance would allow me to try one additional mask. I offered to pay outright for one and was told I couldn't do that. I should just go to a second hand supply company cause it would save me money. I can do it I have a freaking savings or I wouldn't have asked. I am not dumb just overwhelmed. I'm not sure I want to go down the road of nasal pillows again because of the reaction I had. I do like the idea of bleep but am very allergic to medical adhesives so that may be a no go for me unless I want horrible welts, itching and burning.

robysue1 wrote: ↑

Wed Jul 03, 2024 7:36 am

t's not a matter of sharing so much as a matter of learning how to not worry that someone in your life might see the equipment and then ask you a question. Or learning how to not worry about someone you care about asking why you're looking so tired these days.

In other words, think about the people who actually have access to your bedroom. If one of them happens to see the equipment and asks you about it, then simply tell them that yeah, you've been prescribed a CPAP. If they're someone who is close enough to you to tolerate a bit of a rant, let some steam off and tell them it's not been an easy adjustment for you and you're still not sleeping well.

If someone in your life who doesn't have access to your bedroom asks why you seem to look so tired these days, tell them that you've got some sleeping problems and that you're working with a doctor on getting them treated. Then change the conversation to something else.

I don't worry about people asking questions I will be perfectly honest with them and share what I feel about it at that moment. No one has said I look tired and I am aiming for that not to be something that comes out of someones mouth. No one really ever says anything about my looks so I guess I should be thankful for that. How do I know I'm not sleeping well for the new normal? I really don't know. I am hoping that on Friday I get some answers that will settle me nerves. If I am infact sleeping the way I should using this, etc than it will settle me down. I know I'm not sleeping the way I did before using the machine. So that is all I have to go off of. Maybe I'm doing fine and should worry about all this. How do I know?

robysue1 wrote: ↑

Wed Jul 03, 2024 7:36 am

It sounds like you have been able to get to sleep and stay asleep while using the mask. If that is the case, then count your blessings. Many new CPAPers find that attempting to sleep with the mask on their face extremely difficult---as in they lie in bed for hours and never really seem to get to a sound sleep. This can cause some of them to develop an actual fear of the mask and all the sensations that they notice while lying in bed trying to get to sleep; and their fear and being overwhelmed by the strange sensory stimuli makes them jerk wide awake just as they start to fall asleep with the mask on. And that happens repeatedly night after night. That's when we start suggesting that someone wear the mask (short term) during the daytime in order to teach their body the normal sensations that come from the machine. Using the machine in the daytime when they are not trying to sleep allows this group of new PAPers the chance to teach their bodies and minds to not fear the machine. And that makes it easier for them to relax and actually fall asleep while using the mask.

Yes most nights I have been able to get to sleep and stay asleep for at least 6 to 7 hours. Some nights it's under 6, but always more than 4. As you can tell from my posts, I am strong-willed and stubborn. So, I brought it home and said, "Let's do this" I have been doing it every night. I haven't missed a night, although last night, after 4 hours, when I ripped the mask off for the first time and found the filter lying on the floor, I got up and went to the recliner to finish sleeping. Yes, without the machine on because my sleep study I did at home indicated 0 events in the recliner for 2 hours. I guess my strong-willed stubbornness beat those odds. Something to be thankful for. Thank you for explaining why people say to wear it during the day, or I wear it when I read, etc.

Thank you kindly for your responses. I will be fine, and sometimes, these conversations make me think and help ground me. I am trying to figure it all out and made another breakthrough today. The more I find out about the processes and systems, the easier it is to navigate all aspects of this diagnosis, and it impacts everything I do. I feel a sense of urgency to get all this figured out before I start work again in August. I need to be on a sleep, cleaning, morning, and evening routine schedule that allows some balance with work and family life. It will work out somehow.

Once again thank you for sharing and listening and responding.