CPAP Newbie. Feeling overwhelmed and frustrated

[threeforward_twoback]

Hi all. I have used my CPAP machine for three nights thus far. First night: awful. Second night: great (because of exhaustion from first night). Third night: Not so good. I could use some advice and encouragement.

For starters, I am feeling so frustrated. I'm just so tired of feeling tired after months of alternating between periods of not sleeping, then sleeping better, then not sleeping again. I actually slept pretty well during my first sleep study, and I slept okay during the second with the CPAP machine. And what really bugs me is that after months of insomnia, I was actually sleeping pretty well again before I got on this machine. I got sleepy at a decent hour and slept through the night.

This is in contrast to the months before, where I would get sleepy at 8 pm, go to bed early, and then wake up at 2 or 3 in the morning. Sometimes I just couldn't fall asleep. I never thought this was sleep apnea--I thought it was just insomnia, so I tried two different online CBT-I programs. When these failed, I went to a sleep center, hoping to enlist the help of an actual sleep psychologist. The sleep specialist took a look at my mouth, however, and thought a sleep study was in order, so here I am today.

I was so relieved to find out that I didn't have insomnia that I was eager to do whatever was suggested by the sleep center. I also looked at CPAP machines online, but ultimately thought it was better just to go with what the sleep center selected (a decision that I'm regretting, now that I've found the CPAP Wiki). Anyway, I am renting a CPAP machine through my insurance, which was supplied by the sleep center. I don't know anything about my condition (such as AHIs, etc.), except that it's moderate and my pressure is set to 8 cm on my machine. Since I use nasal pillows, I don't have a problem with feeling claustrophobic. I keep my mask on during the night. But I will wake up throughout the night, and the sound the machine makes when I exhale makes it difficult to fall asleep as quickly as I would without the CPAP. I think that's what I find most distracting of all.

Given all of this, I have a few questions.

1.) From what I've read on these forums, I know it can take anywhere from a few weeks to a few months to feel adjusted to the CPAP therapy. I was planning on going to grad school in September, but I'm afraid of having to deal with being in an entirely new place, going to school and not sleeping well. Should I defer and enter school next fall, just in case it takes me a few months to adjust? I'd also be scared to lose my current insurance through my full-time job and get what may be less-than-ideal student health insurance.

2.) What do I need to do to get educated about my condition going forward? What kind of report/documentation on my sleep studies should I ask of the sleep center?

3.) I've read that keeping track of the data via Sleepyhead software has helped a lot of people out. But alas, it appears that the CPAP machine I have isn't compatible with Sleepyhead software yet D: Is there a way to get my machine switched, or am I stuck with this one? (I remember asking a sleep center employee if I could choose which machine I got, and she said no, so I'm not too hopeful on that front)

I am so ignorant, and so overwhelmed, and so tired. Please advise!

[LSAT]

If your diagnosis was "moderate"...that means you stopped breathing a minimum of 15 times an hour. You are entitled to a copy of your sleep study and any prescription your doctor writes. You have been given a great machine...Sleepyhead will be available for it very soon.

[SleepyEyes21]

Hi all. I have used my CPAP machine for three nights thus far. First night: awful. Second night: great (because of exhaustion from first night). Third night: Not so good. I could use some advice and encouragement.

For starters, I am feeling so frustrated. I'm just so tired of feeling tired after months of alternating between periods of not sleeping, then sleeping better, then not sleeping again. I actually slept pretty well during my first sleep study, and I slept okay during the second with the CPAP machine. And what really bugs me is that after months of insomnia, I was actually sleeping pretty well again before I got on this machine. I got sleepy at a decent hour and slept through the night.

This is in contrast to the months before, where I would get sleepy at 8 pm, go to bed early, and then wake up at 2 or 3 in the morning. Sometimes I just couldn't fall asleep. I never thought this was sleep apnea--I thought it was just insomnia, so I tried two different online CBT-I programs. When these failed, I went to a sleep center, hoping to enlist the help of an actual sleep psychologist. The sleep specialist took a look at my mouth, however, and thought a sleep study was in order, so here I am today.

I was so relieved to find out that I didn't have insomnia that I was eager to do whatever was suggested by the sleep center. I also looked at CPAP machines online, but ultimately thought it was better just to go with what the sleep center selected (a decision that I'm regretting, now that I've found the CPAP Wiki). Anyway, I am renting a CPAP machine through my insurance, which was supplied by the sleep center. I don't know anything about my condition (such as AHIs, etc.), except that it's moderate and my pressure is set to 8 cm on my machine. Since I use nasal pillows, I don't have a problem with feeling claustrophobic. I keep my mask on during the night. But I will wake up throughout the night, and the sound the machine makes when I exhale makes it difficult to fall asleep as quickly as I would without the CPAP. I think that's what I find most distracting of all.

Given all of this, I have a few questions.

1.) From what I've read on these forums, I know it can take anywhere from a few weeks to a few months to feel adjusted to the CPAP therapy. I was planning on going to grad school in September, but I'm afraid of having to deal with being in an entirely new place, going to school and not sleeping well. Should I defer and enter school next fall, just in case it takes me a few months to adjust? I'd also be scared to lose my current insurance through my full-time job and get what may be less-than-ideal student health insurance.

2.) What do I need to do to get educated about my condition going forward? What kind of report/documentation on my sleep studies should I ask of the sleep center?

3.) I've read that keeping track of the data via Sleepyhead software has helped a lot of people out. But alas, it appears that the CPAP machine I have isn't compatible with Sleepyhead software yet D: Is there a way to get my machine switched, or am I stuck with this one? (I remember asking a sleep center employee if I could choose which machine I got, and she said no, so I'm not too hopeful on that front)

I am so ignorant, and so overwhelmed, and so tired. Please advise!

Hi 3F-2B, Welcome to the forum! Love your screen name - it describes the beginning of the cpap process for a lot of us perfectly (unfortunately.)
You have come to a great place to get a lot of help and to get virtually all of your questions answered What you are experiencing with the back & forth right now is common to many users when first trying to adjust to cpap/ bi-pap; it takes time to get used to sleeping with a mask and a machine, and new noises, etc.

You've started off with a great mask that a lot of us here really like- the Airfit P10 Give yourself MAJOR KUDOS for being able to sleep comfortably all night with the mask ON; you'll see from reading posts here that a lot of others have difficulty finding a comfortable mask, and some tend to take their masks off in their sleep, especially in the beginning. So- it seems you've crossed that hurdle well!

From what I can tell, you have a good machine; at least it is data capable. However if you want something different, you would have to check with your DME/ sleep center to see what machines your insurance will cover. But before you switch, do your research!! You definitely want a data capable machine; do not let them give you a machine without this capability. In the meantime, you can try putting your current machine in a bedside table drawer to help with noise, or maybe move it a bit further away from your bed.

As for your other questions,

1) I think you can plan to go to school in September. You can get cpap treatment even without health insurance or with poor insurance; we'll tell you how Also, you can always apply to a college, start, and if something happens where you can't attend or complete the semester, you just do an add/ drop for the course, or you also withdraw for the semester. I would suggest not quitting your current job until you can afford to;

2) To educate yourself about OSA: read, read, and research - a lot! There is TONS of valuable information on this site as I'm sure you have found, and there are many Longtimers here who have vast amounts of knowledge to share; so feel free to ask

3) You can only choose from the cpap machines that your insurance covers, so ask the sleep center which ones those are (and yes, there usually are more than just one kind; don't let the sleep center try to fool you.) You can always double check this with your health insurance.

It's easy to get overwhelmed, so take it a step at a time, ask questions, jump into conversations with us when you feel comfortable, and before you realize it - it will all come together and you'll be on your way to better days

[Julie]

Hi - I would plan to go to school this year because I think you have lots of time to adjust considering you do have a good machine. So much of the trouble any of us has is usually about the mask, fit, sizing, leaks, etc. and most of us end up going through a few til we find the best one(s). Be a pest here if necessary about issues - there are experienced, knowledgable people who'll help, with or without Sleepyhead, and I think you'll be fine as you sound conscientious enough to work things out quickly (and being educated as you are will also help).

[threeforward_twoback]

Thanks for the support. It has been a rough start. I am back to where I was during the worst of my insomnia, when I never knew whether I was going to have a good night or a bad night, and I dreaded going to bed for that reason.

I know I need to stick with it, but after last night--I know I slept some, because I dreamed a little, but I still feel like I didn't sleep--I feel like giving up. Part of why I was resistant to doing so is because I thought, as per the conversation with my sleep center, I would have to pay for the machine in its entirety if I couldn't comply. But now that I think about it, the person I was speaking to might have just said that insurance wouldn't pay for it (and thus meant to imply that the machine would be returned). I assumed that meant I would have to pay for the whole thing outright, but maybe that isn't correct.

Is having to pay for the machine yourself a consequence of non-compliance, or does the machine just get sent back to wherever?

[yaconsult]

If you don't meet the compliance requirements, they take the machine back. But that's ok, because you wouldn't want to pay the price that they would charge you anyway. Our sponsor has much better prices.

You're got a great machine and mask. The creator of sleepyhead is working on adding support for this new machine. You, and anyone else, could help out by going to https://www.jedimark.net/tiki-index.php?page=SleepyHead and clicking on the Donate button on the left side of the page. Sleepyhead is sooooo much better than the expensive manufacturers software that isn't even sold to us cpap users.

Now, you just need to get used to being hooked up to the machine all night and what works for many people is to use it while watching tv or working on the computer. Once you get used to it, putting on the mask and feeling the soothing air that you know is going to keep you breathing all night will feel very relaxing.

Is your auto machine set to a fixed pressure of 8 or a minimum pressure of 8? I hope it's the latter unless the doctor decided otherwise. What does your machine say the average pressure was in the morning when you turn it off?

[griz31]

Hey! Also a new user and been having a lot of issues getting used to the machine as well. While I cant offer much in the way of "it gets better", I can say that you're not the only one and we gotta stick with it!

I keep my mask on during the night. But I will wake up throughout the night, and the sound the machine makes when I exhale makes it difficult to fall asleep as quickly as I would without the CPAP. I think that's what I find most distracting of all.

Something I have found to help is to:
1. Move the machine further from the bed. The hose is pretty long and can most likely be placed farther away.
2. Put a thick towel over the machine. For me it dampens any noise. Give it a shot!

3.) I've read that keeping track of the data via Sleepyhead software has helped a lot of people out. But alas, it appears that the CPAP machine I have isn't compatible with Sleepyhead software yet D: Is there a way to get my machine switched, or am I stuck with this one? (I remember asking a sleep center employee if I could choose which machine I got, and she said no, so I'm not too hopeful on that front)

I have the Dreamstation Auto CPAP machine as well. I actually think it is a decent machine so I wouldnt get hung up thinking you got a bad one. Also, maybe I just got lucky with the timing, but I downloaded sleepyhead and was able to use it fine. Try again as I think it should work for you now.

Goodluck - stick with it
Jon

[threeforward_twoback]

Is your auto machine set to a fixed pressure of 8 or a minimum pressure of 8? I hope it's the latter unless the doctor decided otherwise. What does your machine say the average pressure was in the morning when you turn it off?

I believe it's set to a fixed pressure of 8, because they said that's the pressure I did best on during the titration study, and that's what the machine says when I turn it off in the morning. There's a ramp option where I can start the machine off at 4 cm, if I want. I haven't really used the ramp option.

Also, maybe I just got lucky with the timing, but I downloaded sleepyhead and was able to use it fine. Try again as I think it should work for you now.

Hey griz31, thanks for the reply! Are you using Mac or Windows? (Does that matter?) I'll try downloading and see what happens. Thanks for letting me know this!

[Julie]

Be sure not to cover the vent holes on the mask though or you'll rebreathe CO2, and you don't want to do that.

[palerider]

\But alas, it appears that the CPAP machine I have isn't compatible with Sleepyhead software yet

get the beta sh

[griz31]

griz31, thanks for the reply! Are you using Mac or Windows? (Does that matter?) I'll try downloading and see what happens. Thanks for letting me know this!

I have Windows 7. I would assume they would update their software for both OS, but I could be wrong. I just plugged my SD card in the computer and uploaded within SleepyHead - no issues.

Jon

[threeforward_twoback]

Got Sleepyhead, and from what I can tell, it works fine

Can you let me know how I'm doing?

Also, I have a question about the reported Sleep time. Sleep is 22:23:45. Does that mean I only got 22 minutes of sleep?

I'm not sure why it's reporting a 2 hr 56 minute gap in my machine use. I never felt like I actually fell into a deep sleep last night. I did get up briefly and when I checked the CPAP machine to see how much I'd used it, the machine said 3hr 4 min. So I put the mask back on again, tried to go back to sleep, and was under the impression that I ended up hitting the minimum usage for the night when I "woke up" again.

Here are my stats:

CPAP Statistics



Overview



Last Night

[SleepyEyes21]

Is your auto machine set to a fixed pressure of 8 or a minimum pressure of 8? I hope it's the latter unless the doctor decided otherwise. What does your machine say the average pressure was in the morning when you turn it off?

I believe it's set to a fixed pressure of 8, because they said that's the pressure I did best on during the titration study, and that's what the machine says when I turn it off in the morning. There's a ramp option where I can start the machine off at 4 cm, if I want. I haven't really used the ramp option.

Also, maybe I just got lucky with the timing, but I downloaded sleepyhead and was able to use it fine. Try again as I think it should work for you now.

Hey griz31, thanks for the reply! Are you using Mac or Windows? (Does that matter?) I'll try downloading and see what happens. Thanks for letting me know this!

Hi 3F_2B, good to see you back and still trying to stick with it Here is some more info:

* Although you have a very good machine now, if you want to buy one on your outright to own (without insurance)- you can buy both new and used machines online and through durable medical equipment (DME) stores. Like yaconsult said, the sponsor of this forum- cpap.com has good prices on machines and other supplies; another site that has great prices on used machines is http://www.secondwindcpap.com, and they do offer warranties. We also have members on this forum that sell machines; I purchased my machine here from STLMark- brand new, for $400.00 when I started treatment -and it's still working beautifully. One benefit to owning your machine is that you don't have to constantly show your data to an insurance company to continue treatment

* If you decide to continue to rent your machine, ask your insurance how long you will have to rent it before you own it. Most insurances that I have heard of have you pay a rental fee on a cpap machine for a certain number of months, and after that time period is over, you then own the machine. Ask your company if they have this benefit. Whichever way you decide to go- buy or rent, we can show you how to get owner's manuals for any machine, and how to change the settings to meet YOUR needs

* The machine you have now I believe will allow you to set a range of pressures (yaconsult- is that correct?) When we sleep, our respiratory needs fluctuate; they're not the same every night. Respirations can change due to temperature, medications, fatigue levels, sleep states, and a variety of other factors. By having your cpap machine set between a range of settings- for example, 8-10, - your machine will automatically adjust the titration to meet your respiratory need better during all periods of sleep. yaconsult -would you recommend she adjust her range?

[Julie]

If you read the results of last night (or others) after noontime, you'll only see results from noon onward - when you were awake (or even if you napped). The machine considers a night (or day) to be from noon to noon, not 6 am or pm etc. and so won't count last nite's results into today's report if read after lunch.

[yaconsult]

The results you posted look pretty good. I am surprised that they set your machine to cpap mode though. Our pressure needs change often due to things like sleep stage and sleep position. You might want to try auto mode with a minimum pressure of 8 at some point and see if the machine thinks you need more pressure at different times. If it doesn't detect any breathing problems then it won't increase the pressure.

The experienced people here can advise you on pressure changes if and when you decide you are ready. You're doing great so far - congratulations!