So what does "stick with it" really mean?

I've been undergoing CPAP treatment for three weeks now (I first wrote about it here). I'm in the middle of a month-long free trial from my DME. I have a ResMed Sullivan V Elite, ResMed Sullivan Humidaire, and a ResMed Mirage II full-face mask. I'm set at 7 cmH2O.

My very first night was fantastic. My condition has actually degraded consistently since then. During the last week I wasn't able to stay asleep all night -- I'd wake up around 3-4am, then be unable to fall back to sleep for another hour or so. Last night I couldn't even sleep at all; I resorted to removing the mask and going to sleep without CPAP, and even then I wasn't asleep until 5am (I was dragged out of bed at 1pm).

Despite feeling more "conscious" in the mornings, I still experience the same daytime sleepiness I always did before CPAP (ie. I can sleep while standing on a subway train). I still sleep in on many mornings until I've had 12-14 hours of sleep (ie. waking up around 3pm). I have missed a significant number of college classes in the past two weeks, including two midterm exams. I honestly wish I was exaggerating about any of this.

This coming week is an "intersession week" at school (no classes). I'm going to use this time to speak with my professors about my health issues with regards to my academic failings, and I'm also going to see my doctor about my experiences. A week from now, on October 30, I'm scheduled to meet with my DME to purchase a CPAP machine of my own, but there's no way I'm going to purchase a machine given my experience thus far.

Many pople in this forum stress to "stick with it," but will I continue to experience this kind of worsening condition until some indeterminite moment that the process reverses? Or is it implied that I need to make many changes to the CPAP regimen, but that CPAP in general is still the only reliable course of action? Or am I perhaps an exception, and CPAP really isn't what's right for me?

Thanks in advance for any input.

I am curious. You mentioned that you have a ResMed Sullivan V Elite Cpap. I have never heard of it and can not find it on the Resmed Website. Can you tell me more about it?

Staedtler wrote:I'm set at 7 cmH2O.

I would ask for a trial with an autopap instead of staying on a straight cpap machine. You might possibly need more pressure than 7 at times throughout the night. An autopap can be set for a range of pressure (like 7 - 14) and will vary the pressure as needed during the night.

Staedtler wrote:Or is it implied that I need to make many changes to the CPAP regimen, but that CPAP in general is still the only reliable course of action?

I think a person does need to be his/her own advocate in this kind of treatment. I think CPAP in general is the most reliable course of action for most people. It's very hard to stick with though, if we rely entirely on what the doctors (often too busy) and/or DME's (often clueless about comfort issues) suggest.

To get up to speed quickly about cpap treatment in general, here's some very good reading at this clickable link:

Mile High Sleeper's great information resource for cpap users.

amos wrote:I am curious. You mentioned that you have a ResMed Sullivan V Elite Cpap. I have never heard of it and can not find it on the Resmed Website. Can you tell me more about it?

I wish I knew anything about it, too. :-) About the best I can do is provide photos.

http://www.joshphillips.ca/etc/cpap1.jpg
http://www.joshphillips.ca/etc/cpap2.jpg
http://www.joshphillips.ca/etc/cpap3.jpg

That's an RJ11 jack on the left side (standard telephone cord connector).

Virtually everyone responds to treatment differently. What works for one person generally will not for a second person, especially when it comes to how you feel.
For some, they have felt better almost immidiately and never looked back.
For a great many others, it's a process of months.
For some, it's a process of years.

As far as questions go about how your treatment should be handled, I would ask to go over your titration study with your doctor. Look and see how you did at the different pressures and in different positions. If you saw much variation in optimal pressures then I would most definately ask about getting an auto-cpap. This type of cpap can monitor your breathing and adjust the pressure according to your apnea events.

Otherwise, sticking to it means continuing to use the machine for 6 months to a year. It means using a machine with data recording abilities. Both standard cpap and auto-paps have this ability. It means getting this card read every month or two and looking over the data. The DME company can read this card and download all the data. This isn't something that costs extra. The units record data about your breathing events like a very stripped down sleep lab. If the data shows your events are low, then great. If it shows problems, then work with your doctor to fix them.

For many of us, myself included sticking to it means continuing to use the machines even though I only "feel" slightly better at 6 months into treatment.

There is a common theory out there that uses the concept of a "Sleep Bank". We are supposed to be putting a mininum of 8 hours a night into this "bank". For those of us with OSA, we've been putting in many cases less than an hour into this bank every night for 10-30 years. It takes a long, long, long, long time to build that bank back up. This theory may be a reason why so many of us don't respond for a long time. To me it makes a certain amount of sense. I dunno if it's true but it sure sounds good!

mattman

I downloaded your pictures. It looks like you received a very old machine. If I read the numbers correctly, it has over 2700 hours of use on it. No wonder you got such a good deal on it. I wonder if this machine isn't part of the problem.

Staedtler wrote:

amos wrote:I am curious. You mentioned that you have a ResMed Sullivan V Elite Cpap. I have never heard of it and can not find it on the Resmed Website. Can you tell me more about it?

I wish I knew anything about it, too. About the best I can do is provide photos.

http://www.joshphillips.ca/etc/cpap1.jpg
http://www.joshphillips.ca/etc/cpap2.jpg
http://www.joshphillips.ca/etc/cpap3.jpg

That's an RJ11 jack on the left side (standard telephone cord connector).

Staedtler,

I'm also in college (a top 20 school) so I feel your pain immensely. What sticking with it means is recognizing that sleep apnea is a very serious condition, that the most successful treatment for it is CPAP, and determining that you are not going to give up until you have made it work for you so that you can get your life back.

Your story sounds like mine. When I first started CPAP in March of 2005, it was like nothing had changed. I was still sleeping 12-14 hours (sometimes more on weekends), sleeping through classes and exams, and struggling academically because of it.

But I never gave up on it - and I never slept without my CPAP. It is likely I was born with sleep apnea (and I'm 27 now), so I have a quarter-century of inadequate sleep to make up for.

I felt suffocated when I first got the machine, so I asked for a full-face mask, which my DME gave to me. That still wasn't enough, so I asked the doc to up my pressure (I was titrated at 6 cm). He upped it to 8. I still felt suffocated. I asked him to up it more - he was reluctant to, telling me it was "just a matter of getting used to it." After months, I was still feeling lousy. So I decided at that point to take my treatment into my own hands. I found this forum.

I went back to my primary care doc (NOT the sleep doc) and explained things to her, asking her to Rx me an Auto - she did. I learned from use of the auto that the pressure I ACTUALLY need is 11-12, pretty far off the mark from what they had titrated me at. That was a step in the right direction. I bought the software and card reader so that I could monitor my own treatment without getting a sleep lab involved - another step in the right direction.

But I still felt lousy and was still struggling to stay awake. I could never get totally comfortable with a full face mask, and they always left pretty bad marks on my face. Finally, after trying out several masks, I found what is now called the Twilight NP (formerly called the Aura and the Headrest). This mask finally made the difference. I'm not sure why, but I sleep SO much better with it, and I am finally, FINALLY (as of August of this year) starting to feel energy again, get my memory back, and not fall asleep in class.

In my opinion, these are the steps you need to take:

1) Take charge of your own treatment. Insist on an auto machine. Your DME will try to convince you your insurance won't cover it - they're more than likely lying. Most insurance companies use the same billing code for Auto as they do for regular CPAP, but they pay the DMEs the same regardless, so the DMEs lose profit margin if they give you an auto. That's why they'll try their darnedest not to. Getting your doc to Rx one will keep them from giving you the run around quite as much. Even if you decide later that you're one of those people that function better on straight CPAP than on auto, the auto can function as both, and will give you data, too. Research the different auto machines using this forum. Decide which you want (the one I have is the RemStar Auto with CFlex, and I love it). Get the card reader and the software so you can monitor your own treatment.

2) Find the right pressure. If you get the software and the reader,posting your numbers here will enable people here on the forum to help you narrow your pressure range with the auto to the range (or specific number) that is ideal for you.

3) Find the right mask. This is always the hardest part because what mask will work for you is so unpredictable. Research the different kinds (full face, nasal masks, nasal pillows) and, if your DME allows trials (many don't), try out as many kinds as you can until you find one you really like. If your DME doesn't allow you to take masks home to try them out, start with one of the most popular masks here that you think you'll like (we can help you with that) and go from there. Don't give up - there's a mask out there for everyone.

4) After you've done all of those things, above all, be patient. You have to give your body time to catch up on all the sleep you missed. You'll still need to sleep more than most people (I still do) for a while, but you'll eventually catch up, and you'll start feeling better, like I am.

This therapy is a pain at first - but, I can attest, it really has CHANGED MY LIFE.

Don't give up, Staedtler. To me, that's what sticking with it means.

I have to say even though I'm a newbie, your machine looks quite ancient. I understand your frustration as I'm sure any of my fellow hose heads can attest to. I feel like just when I've managed to jump over a hurdle another one is right there to test me. When I look back at my original problems, I laugh, b/c now they seem so distant but yet at that time, they were so important and discouraging at the same time. With that experience under my belt and the realization that I have people here to hold my hand almost every step of the way, I will pursue therapy, b/c in my opinion, what other choice do I have? I can't go back to the way I was. I'm young and I have a family I want to be alive and awake for. Even though I don't have significant improvements...I have little, vital ones...like staying alert while driving and not taking my daily after work nap. Am I ready to pull an all nighter or run a marathon?....no, but I will be ready one day and I'm on that road to get me there. So stick with it, be assertive in your therapy and with your providers and stick with this forum...they will help you.

Guess by now you know that "stick with it" is more than just hooking yourself up to a cpap machine every time you sleep/nap. Use that website RG gave a link to BEFORE you see your DME. When you say purchase your own machine-do you have insurance or the means to obtain the machine of your choice-I would put my vote with the auto too-since it can be used in auto or set pressure. Look at masks while you are there too. The mask can make or break your resolve to stick with it. If money is an issue-look into student health resources at your college.
You are a college student-college students are not well known for good sleep hygiene. If that fits you--William Dement has a book for you, "The Promise of Sleep". Check it out of the library or get a copy-it will either put you to sleep or enlighten you about some ways to improve your sleep. If you get it by intersession-you can be two weeks into improved sleep when classes start again.
Sticking with it means using the cpap every time you go to sleep.
Sticking with it means using every way you can to improve your sleep-not settling for four hours of crappy sleep.
Sticking with it means that when one thing fails-you try another until you get it. This is a required course-failure is not an option.
PS-Oxygenation of the brain does wonders for learning and productivity.

Did you get a Resmed Sullivan V Elite from a DME in 2006? I got my Resmed Sullivan V Elite from a DME in 2001 and then it was used, not that these machines don't have a long life. It's actually a very good machine, but it has two problems that make it difficult to use in the modern cpap world. First, it cannot give you data, either on an LCD or software; it's a compliance-only moniter if paired with software. Second, and this is not something you can complain to your DME about, you need a manometer to change the cpap setting. If your DME can lend you a manometer so you can play with it (doubtful) or you want to buy one (i've gotten estimates from $25-$70) or make one (some techies here can do it), go for it. but i don't see why a DME in 2006 is sticking you with such nonsense. (Resmed numbers their series as they get more advanced over the years--you've got the five, and the sixes are little different; now they're on eights.) It is a very good machine; it's just that doing the things that many of us do fairly frequently becomes a project, and it has severe limitations.

Caroline

p.s. I "stuck with" my Resmed Sullivan v elite for about five months this year before wrestling with my sleep doc for a Resmed 8 Vantage Apap. Honestly, it worked fairly well for me, except I thought my pressure was a bit low, which my Apap has since resolved.

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CPAPopedia Keywords Contained In This Post (Click For Definition): resmed, manometer, CPAP, DME

Thanks to everyone for the responses. It's all quite overwhelming, but I no longer feel like I'm heading ceaselessly toward a dead-end.

One of the things I want to do now is ensure I can get an APAP. I'm still trying to decipher the insurance rules for Ontario, though. Residents are covered by ADP, a provincial public health insurance for medical devices. ADP pays for 75% of a CPAP's cost, and the device's cost must be no greater than $1040 (also the DME must be registered with ADP, which eliminates cpap.com as an option). Basically, my DME only sells CPAPs for $1040. So the patient is responsible for the balance of $260, but this can be handled by private health insurance. So far I've contacted my student health insurance provider, and they said they cover 80% of that balance for a CPAP, but "we do not pay for any training materials or deluxe models." I'm not sure if APAPs are considered a "deluxe model," but as long as it's $1040 or less I'm only responsible for $260 of it. A small price to pay for one's health.

This Sullivan V Elite is my DME's "loaner," and I only have it for another week, after which I'll be expected to purchase my own unit (obviously a 2006 model). Indeed a manometer is required to set it, and the DME did exactly that right in front of me before I took it home.

I don't have any concerns that the machine itself is failing; can't say as much about the mask, though, since I can't really tell if it's sealed while I'm asleep. I'm currently using a large ResMed Mirage II full-face mask, and when I punch my measurements into cpap.com they suggest a medium Ultra Mirage (the newest model in that line). I'll make sure to point this out to my DME next week.

Good luck, my friend. Yes, do "stick with it" even if it takes some time to notice the difference. OSA is a very dangerous disorder and can lead to mny very bad conditions. Hopefully, you have found this forum to be very supportive of your efforts.

Also, you are now aware of the questions you should ask of your DME.

Hi, Staedtler.

Ditto to all the good advice already posted. When talking to your professors, or following up with them, you might want to point them to the article (light bulb/our collective wisdom on this site) Evaluating Your Sleep for a list of sleep apnea symptoms, and to the article on Selected Sleep Apnea Resources if they want links to information about it. Most people don't know much about sleep apnea. UNTREATED, it's a chronic disability. Treated, you can wake up to your life again!

Your experience is actually typical, from what I've been reading with other posters. Here's a sneak preview of a future article on recovery:

The rare person starts to feel better during their split night sleep study when first using a CPAP mask and getting their first few hours of good sleep in years. More people feel a sense of energy and euphoria sometime during the first few days or weeks of CPAP treatment, because the body is thrilled to finally get some good sleep. Often, this euphoria doesn’t last, as the person continues to struggle with equipment as the body demands ever more satisfying levels of oxygenation and rest. The speed of recovery depends on

1) how good the CPAP equipment is and how able the person is at equipment problem-solving, which depends upon their accessing qualified sources of therapy information.

2) how sensible, sensitive, and adaptive the person is, or their psychological, mental and emotional states. Are they able and willing to stay the course and be successful?

3) the person’s physical condition. Are there conditions that help or hinder CPAP therapy?

There are often four stages of adjusting to CPAP therapy and equipment:
1. intolerable
2. uncomfortable
3. tolerable
4. comfortable

A lucky few, with good equipment and a no-nonsense or carefree attitude, skip the intolerable and uncomfortable stages. For most people, it may take weeks or months to go through all four stages. For many people, the first few weeks of CPAP therapy can be miserable. The mask and other side effects (rainout, venting on arms, aerophagia, noise, machine feel and pressure, etc.) may be intolerable at first for way too many nights. It’s typical to sleep much worse than before treatment, because not only are they now aware of obstructive sleep apnea and being extremely tired, but the equipment is unpleasant and keeping them awake. Wearing the mask for an hour is an accomplishment. Then getting even an hour of sleep on the equipment is an accomplishment. Gone is the illusion of a good night’s sleep, since equipment struggles are all night long, every night. This stage is a real challenge, and may feel like it will last forever.

With determination and persistence and equipment help from knowledgeable sources, in a few days or weeks they reach the stage where the therapy is merely uncomfortable. The therapy is definitely not fun. They are able to snatch a few more hours of sleep even with the equipment. A few improvements in energy and health begin to emerge. At this stage, it may be hard to believe that the therapy will ever be truly comfortable.

With time, continuous gaining of helpful knowledge from other users, replacement of uncomfortable equipment, and nightly tweaking of equipment, as well as more practice, the therapy becomes tolerable or acceptable in a few weeks or months, especially as more and more good results begin to show. It takes many new users at least 4 to 6 weeks, along with trial, experimentation, and problem-solving, to get used to sleeping comfortably with a certain mask. Getting used to a second mask usually is much faster, since the user has gained experience. Gradually, the struggles aren’t every night, and there are far more good nights than bad. At this stage and the next, some people begin to make up their sleep deficit, sleeping longer while the body catches up on years of lost sleep and heals. “Compliance” or wearing the mask to make the insurance company happy, isn’t really for the insurance company’s benefit. If your compliance is 100% of your sleep time, including naps, you are benefiting your mind, body, and quality of life, avoiding new damage and healing old damage.

Eventually, in a few months, the therapy is even comfortable as good results are achieved almost every night. Many people, only if they have good equipment and good advice, reach comfort in three to four months in most aspects of their therapy; some sooner than that, some later. They are finally able to sleep comfortably through the night. If they awaken briefly to adjust equipment, they quickly fall back to sleep. There may be lingering aspects of therapy that are problematic (such as finding a better mask), and it may take many months to find better options and equipment, but overall, the therapy is working and every day the person feels much better than before starting the therapy, or notices some improvement in energy, health, or lifestyle. There may be discouraging setbacks and progress may feel slow, but the overall results of therapy are good. It may take more months or years of tweaking and improvements in equipment and therapy practices to feel satisfied with the treatment and its results.

You're on the right track!

I just barely skimmed over most of the replies, but let me suggest this -- perhaps you have a leak. Especially if you're a mouth breather (as I am), you may be losing air (thus pressure) out of your mouth. Signs to look for are a very dry mouth, possibly very dry throat, and gasping. In general, a lot of mouth discomfort (but not pain).

I felt better even when they did my sleep study, and from the very first night I had my machine. However, it's been about 8 months and it's only recently that I've been able to get any consistency. Even with the best of responses, it takes a lot of time to get things straightened out.

It took me about 2-3 months to really catch up on my sleep (mid-life, had it since a child), and I went through a lot of "stuff" as I tried out a full face mask and realized that it was leaking (I started feeling tired again) and other stuff. But eventually I found something that worked for me. (Nasal mask, chin strap, polident my mouth shut).

But keep at it. It's worth the aggravation and the trouble. I am now getting into a good "life" routine, and as I've started to diet and exercise, I've found that my body is responding extra-fast.

You might also be experiencing chest apnea, which is something your md needs to address.

The field of medicine is finding out more all the time. I work for a large medical publishing company, and every month we publish some new study. This month there was a lot of info about fat producing substances (hormones? can't remember) that might actually cause apneas (I think just chest apnea, but don't quote me).

When I first got treated, I thought, Whoopee! This is going to be an overnight miracle. I'm old enough to know better. It's been about a 90% cure; and as I've begun to exercise, I'm getting closer to 100%. So, you may want to start with some gentle exercise (walking) and some deep breathing along with stretching.

Yawn. It will get oxygen into your system.

Whatever, find a way to keep at it. The consequences of SA as you age are very, very serious. You don't want that.

Good luck!