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Sleep Apnea/Getting used to the CPAP Mask

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Expert: Dave J. (Scoop0901) - 11/17/2006


Question
I was diagnosed w/sleep apnea last Dec and with the speed of my PCM I just received the CPAP machine, humidifier and mask ass'y.  I know I need to use the machine but I am thinking the hose will restrict my nocturnal movements so much so that I will be kept awake by the hose/mask ass'y.  Is it easy to get used to it?  Also my setting is 7, and I was wondering if that is high, low or sort of in the middle?  Will that be pretty much my setting forever or do they normally increase?

Answer
Frank:
  You can get a second length of tubing to apply in-line between your CPAP and mask, giving you between 12-feet and 14-feet of tubing.  Be sure, though, if you do that, to have your home health care provider, the company where you got the CPAP, to check the pressure **at the mask** to ensure the machine is delivering the correct pressure.  Some machines can compensate for that length, others cannot, so to be sure you're getting your therapeutic pressures, they really need to check the pressure at the mask. If it is decreased slightly because of the extra length of tubing, that's no problem. They can increase the pressure on the machine slightly to compensate.  Many people, myself included, do this for comfort.

Will the machine and tubing keep you awake at night?  I have no idea.  For me, I had problems for the first three months.  My issues were all tied to finding **the right mask for me,** and once I found the one I prefer, everything else became a non-issue.  Honestly.  In fact, once I found the right mask, I would literally turn on the machine, my heated humidifier, crawl in bed, cover up, put on my mask, and a few minutes later, be sound asleep for the night, waking only if I sprung an air leak, which isn't often.

You ask if it is easy to get accustomed to using the mask and machine.  That's a tricky one.  When you were a child, learning to read and write, was it a hard task?  Yes, there's going to be an adjustment phase you will encounter, the period of time that you will need to find the best way for you to use the equipment.  For some people, they take to CPAP like a duck takes to water.  Others are in the boat I was in, where you need to find the right setup for you.  With me, it was as simple as finding the "right" mask for me.  Once I did that, all my woes were gone.  Others need to add in a heated humidifier, which I had from the onset.

Is the pressure of 7 high?  That's a perspective issue, to be honest.  In the overall scheme of the world of CPAP, no, it is fairly low.  But that is immaterial.  The issue is: Is the pressure of 7cm/H2O **high** for you? How is that determined, by **your** titration. Medicine, Frank, is individual, and not something you compare against others.  My pressure on a BiPAP is much, much higher than that. Why? Because I have the pressures I need to keep my airway open.  You have the pressure needed to keep your airway open.  That's why they do the titration study, determining the pressure best for you. It isn't something they randomly pull out of a hat and say, "Let's give Frank a pressure of 7, but Dave a pressure of 18." If the pressure is **too low for you,** it will not treat **your** apnea.  If it is **too high for you,** it may cause something called central sleep apnea, which means, in plain English, your brain forgets to breathe.

Will your pressure need to change over time?  That's hard to say.  I know people who have a sleep study every 18 months like clockwork.  Their pressures have no changed in over six years.  I know others who do not gain weight or lose weight, but their pressure needs change, and it seems to be based on the direction of the wind that day.

How do you know if your pressure may need to be changed?  That's the easy part.  Once you're compliant, meaning, once you use the CPAP while you sleep, wearing the mask at your prescribed pressure, every time you sleep, the entire time you sleep, without fail, and you have done this for a month or so, you will begin feeling better.  Once you hit that point, you will notice a change in your life.

Now, if you begin snoring again, if you begin to suffer apneas again (you will have to rely on your bedpartner for this, or take your machine to your sleep specialist or to the home health care provider to have them read the data stored in the machine), if you begin suffering daytime sleepiness, or any other symptoms of apnea -- especially ones which were resolved through the use of CPAP, then you need to get in for a new sleep study.

If you gain or lose 30 lbs. or more, get a new sleep study.  That still holds true.  It used to be pushed that you should have a new sleep study every two years or so.  Some doctors still say that, others say as long as you don't experience any problems, you don't.  I don't subscribe to that line of thinking, at all.  It takes time for daytime sleepiness to build up.  It takes time for the other symptoms to become noticeable once things begin happening.  When symptoms of daytime sleepiness appear, that means you've been having issues for awhile.  What does "awhile" mean?  It varies.  For some, it could be two days.  For others, it could be two months.  I am a strong advocate of having a new sleep study as often as your insurance will cover it, such as once a year, but at the very least, at least once every two years.  Prevention is the best medicine.

Untreated, undiagnosed, undertreated apnea can lead to many nasty things, including heart attack, stroke, hypertension (high blood pressure), unexplained weight gain, daytime sleepiness/fatigue, moodiness/mood swings, depression, memory loss, congestive heart failure, diabetes, glaucoma, and the list goes on.  It's much easier to treat apnea, using air -- a very safe option -- and help prevent those things from taking hold of your life, or, if you've already been diagnosed with them, getting them either under control or holding them at bay, a detente scenario, basically, then I would do it.  Nay, I do it.  Every time I sleep, whether for a 20-minute nap for at night, when I sleep for my eight hours.

-dave
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|  Dave Jackson * http://www.AwakeInPhilly.org * Phila., PA.
|  ~~eFax: 253-423-7208~~  *  mailto:contact(at)AwakeInPhilly.org
| "It is funny about life: if you refuse to accept anything but the very
|best you will very often get it." -W. Somerset Maugham
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Sleep Apnea

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Dave J. (Scoop0901)

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I can answer questions on sleep disorders, in general, and sleep apnea, specifically. I've been actively involved in providing direct support to individuals, family members, employers, and others on the topics of sleep and sleep disorders for more than six years, keep up-to-date on valid, peer-reviewed research, as well as treatment options.

I can answer general questions including, but not limited to polysomnography (PSG or sleep study) techniques; health issues associated with sleep apnea; compliance with a CPAP or BiPAP machine, mask selection and fitting; insurance coverage; ADA issues; and more, but cannot provide diagnosis over the internet.

Why can I answer only general questions? The question would be better asked why I will not answer specific questions. That's the easy part. Your health is unique, or, in redundant terms, "individually unique," meaning that while there's a lot of research that has been conducted in the world of sleep over the past few decades, there is none that can foretell any specific individual's future. What may hold true for your friend, for instance, may not be true for you. It's just like if both you and your best friend like to drive. You both want to own your own vehicles, having the freedom to move about a will, but your taste, your selection in vehicle is vastly different. For example, you may prefer an environmentally-friendly sub-compact car that gets 50 miles to the gallon, but your neighbor may prefer a H2 Hummer. The same holds true with health care issues. While one person may suffer issues X, Y, and Z, as fully supported by research, you may suffer issues D, T, and S, never experiencing anything the other person experienced.

Experience


As to my experience, let's start back on January 1, 2000, one of nine days I spent in an Intensive Care Unit (ICU) unit of a Northeast Philadelphia hospital. I was diagnosed with sleep apnea, along with a couple other sleep disorders, not to mention some very serious, very nasty health conditions related to many years of undiagnosed, therefore, untreated sleep disorders.

After somewhere around three months of fiddling with the equipment, adding a heated humidifier to the gear, and finding the right mask for me, I became 100 percent compliant with my BiPAP therapy. I have seemingly experienced what seems to be all the same, nay, all the classic problems everyone else who's ever used a CPAP, BiPAP, or other xPAP device has experienced, suffers. Things such as mask problems, humidification problems, among others.

I established a community education and support group, Awake in Philly, in Philadelphia, PA (USA), in May 2000, to help support and educate others about the true costs of sleep issues, including sleep disorders, sleep deprivation. We also work to educate the public, employers, and government and elected officials, as well as health care professionals about the dangers of these issues.

Since getting diagnosed, I've become a very vocal, very pro-active sleep activist, dedicated to helping others before they suffer the many woes that too often accompany untreated and undiagnosed sleep disorders and sleep deprivation.

In addition to working locally, I always think globally, yet act responsibly in all I do, yet have managed to extend the reach of my work nationally. I am involved with Awake In America, Inc., an all-volunteer national non-profit focused on sleep and sleep disorders. An all-volunteer organization is one where the people involved are committed to the efforts, and one in which no one is paid or compensated for their work with the organization, where all funds may be used for operations and actual work to fulfill the organization's missions. I know of no other non-profit corporation that can make that bold statement.

Awake In America was organized to assist others around the country to quickly and effectively launch support groups, but also to work on community awareness of sleep disorders, serve as an outreach source, among other issues. Awake In America also launched the only national xPAP Donation and Relief Program, which is designed to assist individuals without insurance or the financial means necessary, obtain equipment and supplies essential to treating diagnosed sleep apnea. We also have a national Sleep Study Relief Program, again, the first in the nation, and the only one of its kind in the nation.

Having spent more than 20 years as an investigative journalist and editor, I do careful, tedious research on all issues involving sleep and sleep disorders. I question everything in studies and reports, challenging findings, wanting to see if everything using strict scientific methods, uninfluenced by funding flowing from specific interest groups.

In the almost nine years of helping others, through Awake In Philly and Awake In America, as well as my personal blog on sleep, The Sleep Blog, I've done a tremendous amount of reading, much of which in the same books used to train sleep techs, as well as many of the same books that are on the shelves of many sleep specialists.

I've dealt with countless people, via email, instant messaging (IM), and on the phone, sometimes, basically doing the equivalent of providing a shoulder for them to lean or cry on. In the end, I offered ideas to help them overcome their challenges, and fortunately, I've been able to help a large majority of those people, but some required the hands-on, in-person approach of a physician or sleep specialist.

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