Newbie with asthma & anxiety; need encouragement

[CPAP_newbie]

I am 57, F, newly diagnosed with mild sleep apnea AHI 8. What was more concerning was the >2 hour hypoxemia (below 90%), dipping down to 73% at the lowest. I have had frequent morning migraines (3-4/week) since Sept. 2020, now I know probably due to the hypoxemia. Neurology was normal; sleep study surprised me by showing apnea. During the pandemic I went from overweight to obese by gaining 15 lbs.

I've had my ResMed 10 Autosense for less than a week, using Dreamwear nasal mask. Prescribed CPAP steady pressure of 8. Been trying with and without ramp--without seems better.

I *cannot* fall asleep with the mask on. I've tried wearing it for a while before falling asleep, waiting to put it on until I'm really sleepy; no real difference. I can make it at most 2 hours before a panic attack makes me take it off. I've tried taking a break and putting it back on; or sleeping for 3-4 hours then putting it back on. Putting it on after sleeping works at least to the extent that I'm able to fall asleep again. But any way I've done it, I've been absolutely *wrecked* in the morning. No headaches, but my brain does not function properly. Last night I decided not to fight it and took it off after 40 minutes without trying to put it on again. I got the best sleep in a week.

Doc prescribed Ambien but the script hasn't gone through yet. I picked up an SD card today so I'm hoping to get some data tonight.

I have mild asthma and postnasal drip, both of which make CPAP difficult. I think I tolerate the 8 cm pressure fairly well and I've learned how to breathe out against it. But can't shake this innate anxiety that keeps me awake.

I'll post more after I have data. But I need some encouragement. I was sure the CPAP would help right away with morning fatigue and headaches, and I'm feeling very discouraged.

[CPAP_newbie]

Last night I fell asleep quickly listening to an audio book and managed 2.5 hours. The best yet. I took the mask off at one point and put it back on, and then finally took it off for good. I barely remember any of that, which is good. Posting OSCAR data for the first time to figure it out. Interesting, no obstructive apneas, but several clear-airway events. Enough to worry about?

[zonker]

I'll post more after I have data. But I need some encouragement. I was sure the CPAP would help right away with morning fatigue and headaches, and I'm feeling very discouraged.

welcome to the zoo!

i'm sorry, i thought i'd replied to this yesterday but the forum must've ate it!(more like i forgot to hit submit.)

here's a whole thread worth of encouragement-

http://cpaptalk.com/viewtopic/t14494/Ne ... lease.html

what you are entering into is a titanic struggle. there ARE people who take to this therapy right away. but it's unlikely we'll hear from them here because, well, they don't have the problems the rest of us do.

but you can do it. we can help. that's why this forum exists. stick to it.

i see you've posted a chart. can you tell me why you have been set up in cpap (straight pressure) rather than apap (automatic variable pressure) mode?

[Okie bipap]

Welcome to the forum. I, too, am asthmatic and I fall into the severe range of sleep apnea. Most of my events were hypopnias and my blood oxygen dropped lower than yours did. I have been on the machine for almost six years. My first night, I only managed to keep the mask on for two hours. It took several nights for me to finally sleep through the night. For now, I wouldn't worry too much about the number of events you have. The main thing to concentrate on is learning to sleep with this foreign thing stuck on your face. The majority of your events were clear apneas which is what your machine calls central apnea. I am sure you are not sleeping well, and it is very common to register central apneas when you are in the transition period from sleeping to waking, or waking to sleeping. Right now, the best advice I can give you is to hang in there. It will get better. It may not feel like it right now, but it does get better over a period of time.

[CPAP_newbie]

Thank you for your replies. I have no idea why my pressure is set to 8 and not variable. I will ask at my next appointment. I had one at-home sleep study, which showed the low O2 dips, and the in-lab study was purely titration, all with mask. Because of COVID I had to use a full face mask, which I pretty much could not tolerate. The pressure started at 5 and I never got to sleep. I took a mask-off break and begged to sleep without it for a few hours. I was not allowed to. I put it back on twice before I slept at all, and went into REM sleep. I had no apnea events at any pressure but the pressure at which I finally entered REM was 8. Hence that is where I have started, although I don't believe the pressure itself is what led to my REM sleep; I think it was pure exhaustion. Apparently anything from 5-8 kept me from having apneas. And with CPAP support, my O2 levels never dipped.

At any rate, my Ambien prescription hasn't been filled yet. I tried again last night to fall asleep to an audio book and failed this time. I lasted an hour with the mask before taking it off. I had no events, but probably because I never fell asleep.

I'm hoping the Ambien will let me sleep longer than 2 hours, but at the same time, I don't want to become dependent on using it. He's prescribed ten 5 mg pills. I don't know if I should try taking them every night for 10 nights, or try to avoid becoming dependent on them by alternating in some fashion. Any thoughts?

BTW my younger brother has severe apnea, to the point that he was narcoleptic and too sleep-deprived to drive. He has been using CPAP for nearly two decades now and can't sleep without it. But he told me it took him a long time to get used to it, too.

Thanks again for the encouragement. I love data. OSCAR is giving me something to obsess about besides the *feeling* of hating the mask.

[booksfan]

I, too, am asthmatic and was diagnosed with severe apnea. I having been on APAP since Jan 2018.

I take 1 0.5 mg capsule of melatonin (rather than sleeping pills) every night. My sleep doc has said if I go through periods of difficulty sleeping, I can increase it to 2 capsules. Also, not a problem to take it long term. I also listen to the Calm app at bedtime. If during my noctural wake ups, which still occur, I do not drop right back off to sleep, I restart the app. It has LOTS of options, meditations (guided, unguided, sounds, etc.), music, sleep stories, etc. Best $$ I've ever spent! My daughter and SIL tried it and I had to give them a lifetime subscription last Christmas. They can no longer do without it either!

I found mask choice to be the most difficult part of CPAP adjustment. My husband used a CPAP for years before I started so I was familiar with them. My only pre-CPAP anxiety was that I am mildly claustrophobic so I knew that I needed a minimal mask. I went through well over a dozen different ones before the Bleep finally came out 14 months after I started. That solved the multitude of problems I was having the various masks I tried. Perhaps the mask you are using is causing you some of the problems? Are you able to try a different mask? Maybe one that has less headgear or straps? Personally I did not like the P10, but a lot of people here love it and it is a very minimal mask. That might help a bit?

Good luck! It does take time.

[ChicagoGranny]

Posting OSCAR data

Your machine settings look fine. I wouldn't change them at this point. When you start sleeping more, there will be more data and some minor tweaking might be suggested. (BTW, most of us change our own setting and wouldn't dare rely on medical professionals to do this.)

As far as the clear-airway events go, you were probably awake and reflexively holding your breath while changing position in the bed. Click on the Events tab to view a list showing how long each event is. They should be of short duration - maybe 20 seconds or less.

Been trying with and without ramp--without seems better.

This is personal preference, some like it, some don't. (I don't use ramp.)

think I tolerate the 8 cm pressure fairly well and I've learned how to breathe out against it.

This is a newbie mistake. It's not necessary to learn how to breathe with a CPAP. Your autonomic nervous system knows how to breathe. When you relax fully and distract your mind from breathing, the autonomic process takes over and you breathe. When you fall asleep, the autonomic system has you breathing gently as long as you are asleep.

About the problem of falling asleep, give your sleep hygiene (google) a thorough check - diet, exercise, caffeine, hidden sources of caffeine like chocolate, blue light sources in the evening, bedroom conditions and others. (I do better with zero caffeine except for a little chocolate dessert no later than 2:00 p.m.)

I've tried wearing it for a while before falling asleep

It's very popular here to suggest that to newbies. I don't agree - you need to get used to wearing it while sleeping, why add more time to that? (Of course you should take the time to make sure your mask is fitted and adjusted properly. When starting out, it may be best to do this several hours before bedtime so that you are ready to easily slip into bed at the right time.)

I'm hoping the Ambien will let me sleep longer than 2 hours, but at the same time, I don't want to become dependent on using it. He's prescribed ten 5 mg pills. I don't know if I should try taking them every night for 10 nights, or try to avoid becoming dependent on them by alternating in some fashion. Any thoughts?

Ambien does not create dependency. But, I would work on sleep hygiene before trying Ambien. I'm guessing you have some sleep hygiene problems (Most people do.) or some anxiety over your apnea diagnosis and CPAP process. These are problems that can be overcome.

Good that you found this forum!

[Janknitz]

I have asthma and severe apnea and getting used to sleeping with the mask was a huge challenge. I'd have panic attacks and throw it across the room at first. But failure was NOT an option. My apnea was so severe and my desats were also in the low 70's. I'd be long dead if I hadn't conquered CPAP.

Here's what helped me:
1. Promise yourself that when you feel that panic rising, you will SLOWLY count to 10 before removing the mask. After counting to 10 ask yourself if you really need to remove it. If so, try counting to 10 again before removing the mask.
2. If you do remove the mask, promise yourself to put it back on once you have calmed down.
3. Rinse and repeat as often as necessary.

It gets better.


It goes contrary to all the "sleep hygiene" advice, but when I couldn't sleep with it on, I just vowed to wear it in bed anyway. I read, played on my phone (really bad for sleep hygiene), watched videos, etc. And eventually fell asleep. Don't TRY to fall asleep. Eventually you WILL fall asleep, if only from sheer fatigue.

It gets better.

At first I woke every half hour, then every hour, then every 2. It was hard to get back to sleep, I just had to go with the flow. If you've had kids, it's a lot like those first weeks with a new baby.

It gets better.

One night I slept 4 hours and that was a step in the right direction.

It gets better.

Then I woke up after 8 hours. Calmly, peacefully, no panic. It was like the best drug in the world. My goal from then on was to have more "good nights". Eventually I had mostly all good nights. It got better.

After all these years I do still need to have "white noise" to not focus on the breathing sounds conducted and magnified by my pillow. I have "sleep phones" which is a headband with built in speakers so I can listen to podcasts and NPR to fall asleep (my version of white noise).

Don't give up on yourself. It will get better.

And CPAP really helps my asthma. For one thing I'm breathing clean, filtered and perfectly humidified air all night. When I have an exacerbation (rare these days) I sleep comfortably on CPAP (never could during an exacerbation before CPAP). I sometimes put it on during the day when I'm having asthma issues because it really helps calm down my airways.

One thing I'm wondering with your O2 so low despite a relatively low AHI is whether something else is going on. Once you are using CPAP successfully and optimally, it might make sense to check your O2 during sleep--perhaps you can rent or buy a recording pulse oximeter?

[ChicagoGranny]

It goes contrary to all the "sleep hygiene" advice

I believe you mean it goes against all the advice to use the bedroom for sleep and sex only. You do believe much of the sleep hygiene advice dealing with diet, exercise, bedroom conditions, etc. is good advice.

BTW, has anyone asked you which drugs you are currently taking? Some drugs make it difficult to sleep.

[CPAP_newbie]

After all these years I do still need to have "white noise" to not focus on the breathing sounds conducted and magnified by my pillow. I have "sleep phones" which is a headband with built in speakers so I can listen to podcasts and NPR to fall asleep (my version of white noise).

I instantly went to Amazon and purchased a sleep phones headband. Sounds terrific!

And CPAP really helps my asthma. For one thing I'm breathing clean, filtered and perfectly humidified air all night. When I have an exacerbation (rare these days) I sleep comfortably on CPAP (never could during an exacerbation before CPAP). I sometimes put it on during the day when I'm having asthma issues because it really helps calm down my airways.

This is interesting to know. I will have to wait to find out but this would be wonderful if it happened this way for me, too.

One thing I'm wondering with your O2 so low despite a relatively low AHI is whether something else is going on. Once you are using CPAP successfully and optimally, it might make sense to check your O2 during sleep--perhaps you can rent or buy a recording pulse oximeter?

I have been wondering the same thing...

Here's what helped me:
1. Promise yourself that when you feel that panic rising, you will SLOWLY count to 10 before removing the mask. After counting to 10 ask yourself if you really need to remove it. If so, try counting to 10 again before removing the mask.
2. If you do remove the mask, promise yourself to put it back on once you have calmed down.
3. Rinse and repeat as often as necessary.

OK, Ambien and counting to 10 tonight. I'll see how it goes...

Thank you!

[CPAP_newbie]

I found mask choice to be the most difficult part of CPAP adjustment. My husband used a CPAP for years before I started so I was familiar with them. My only pre-CPAP anxiety was that I am mildly claustrophobic so I knew that I needed a minimal mask. I went through well over a dozen different ones before the Bleep finally came out 14 months after I started. That solved the multitude of problems I was having the various masks I tried. Perhaps the mask you are using is causing you some of the problems? Are you able to try a different mask? Maybe one that has less headgear or straps? Personally I did not like the P10, but a lot of people here love it and it is a very minimal mask. That might help a bit?

I don't feel like the mask is the problem, although I am definitely very claustrophobic. I have the Dreamwear one, not the pillows but the nasal mask that just goes under your nose. I really like having the hose attachment at the top of my head. I think the next mask I might try would be the Dreamwear Wisp but only if I can't get this one to work. Thanks for the suggestion of the Bleep--I had not heard of that one before. I'm not sure how I would like the hose coming right off my face.

It's tough starting this out during Covid because I can't have my setup appointment in person and can't try a variety of masks at once.

[CPAP_newbie]

Update after one night on Ambien, and counting to 10 twice before taking off the mask.

I don't think the Ambien helped very much. I'll try again tonight. I didn't fall asleep very fast, although I DID fall asleep. I lasted a little over an hour before my first panicky feeling of "I have to take this of RIGHT NOW." I counted to ten. Then counted to ten again. then fell asleep. Phew.

I managed another hour before again waking up feeling panicky. I counted to ten, then my bed partner snuggled closer and sent me completely over the edge into a claustrophobic panic. Mask off. Slept for two hours without the mask. Then feeling sleepy and calm the next time I awoke, I put the mask back on and quickly fell asleep. I lasted just over another hour and repeated the cycle of trying to count but falling into panic from being too close. Then I took the mask off for the rest of the night.

Total time with mask on: 3:47.
AHI 1.06, all clear airway. All while shifting position.
In bed altogether 8.25 hours. Progress, of a sort.

Main meds I'm taking: Wellbutrin, Progesterone, asthma meds as needed. Nothing that would keep me awake; progesterone actually helps me sleep. I have been taking 5 mg melatonin long-acting but skipped that for Ambien last night.

[CPAP_newbie]

Feeling like a failure at CPAP today. 2nd night on Ambien. It does help me to fall asleep but doesn't help me stay asleep without panicking. The difference is that I don't *remember* why or for how long I take off the mask. I'm groggy today and I have a 200 mile drive today. I have not yet managed a night with 4 hours of CPAP on. I don't imagine there's enough data here to tell me anything I don't already know.

[Miss Emerita]

You can do this, but the question is how. I wonder whether a pause and restart would make sense. The French have a phrase for it: "Reculer pour mieux sauter," meaning "Draw back in order to make a better jump forward."

If you'd like to try this strategy, here's what I would suggest. Plan to stop using the machine at night for a week. Set the machine up outside your bedroom in a place that will make it easy for you to use it while watching TV or reading. Use the machine for at least two hours each day, during the daytime or evening. Spend most of that time engaged in your distracting activity (TV, book, whatever), but do notice periodically how the mask is feeling.

After this period of adaptation, put the mask on when you go to bed. Try Janknitz's excellent technique if you feel any panic. Don't feel stressed if you sleep with the machine for just a few hours. You will be able to increase the time until you sleep all night with the machine. It doesn't have to be a race; you can get to the same beneficial place more gradually, if that works best for you.

Is there another bed in your home? When you try using the machine at night could your bed partner sleep somewhere else? I think you could confidently say that this would be temporary, until you finish the adaptation process.

One other thought. You haven't complained about the feel of breathing in and out, but I do wonder whether you'd like a little more EPR. You might try raising it to 2 to see how you like it.

Also, the next time you post a chart, could you squeeze in the flow limitation graph? Just grab the gray bars that separate the graphs and push them up a little to make room.

[CPAP_newbie]

I slept alone last night with sleep phones (hooray Amazon Prime) and without Ambien. The sleep phones helped a lot but I still wasn't able to sleep more than a couple of hours at a time. Looks like I had about 4 hours with the mask on and 5 hours without. Seems like a long time to be in bed. Still, I felt more successful. Breathing out against the pressure doesn't bother me but warm humid air is suffocating. I turned off the humidifier completely at the beginning of the night but then had a stuffy nose, so back to 1. I turned off the heated tube and breathing cool, room-temperature air was better than any amount of heat.

I tried counting to 10 a few times and that did not help as much as background noise of e.g. rain.

The large leak at the beginning was just me blowing air through the tube to dry it out from having washed it a little too late in the day.

Looks like I'm not having apneas--that's good. But do I even have sleep apnea? I would love to try out an overnight oximeter to see how I do with the mask vs. without.