Evaluating Your Sleep, Denial and Awareness

For people exploring sleep apnea and for their healthcare professionals, peer coaching article #2, updated 21 November 2011

The symptoms of sleep apnea (stopped or reduced breathing during sleep) can be very subtle and easily attributed to other factors. How can you tell what you do while you’re sleeping? It’s not unusual to be unaware of having sleep apnea, a nighttime respiratory disorder. You may think you are sleeping well. You may be in denial of the condition and unaware of its serious health risks. Your bed partner or family may be more aware of a potential problem than you are. Fifty percent or more of people with sleep-disordered breathing (SBD) remain undiagnosed. (Carl E Hunt MD p. xi in Johnson’s Sleep Apnea – The Phantom of the Night).

The Boiled Frog Analogy. Maybe you’ve heard this story. If you put a healthy frog into a pot of hot water, it will quickly jump out. If you put a frog into a pot of lukewarm water, and very gradually increase the temperature, it will stay in the pot until boiled. In the hot water, the frog noticed instant discomfort and danger and took action. In the tepid water, it was lulled into complacency until unaware or unable to take action. How does this translate to sleep apnea? Have you unconsciously adapted to fatigue and eventually daytime sleepiness because its progression was so long and gradual? Have you found other reasons for fatigue, while making the best of circumstances? Are those reasons valid? You can find out by consulting a physician, taking informal sleep quizzes and, if indicated, getting a sleep study in a sleep lab. When you find the real reason for your fatigue, you can crawl out of the pot to change, improve, or reverse the condition.

Untreated sleep apnea can lead to high blood pressure, stroke, heart attack, congestive heart failure, cardiac arrhythmia, depression. Other risks are driver fatigue, poor judgment, poor memory, and sleepiness leading to car crashes, wrongful death and injury.

Possible Symptoms of Sleep Apnea

·        loud and frequent snoring (in most people, but not in everyone)

·        periods of not breathing (apnea) during sleep, snorting, gasping, or choking during sleep

·        need to urinate at night

·        awakening tired in the morning, morning headaches, daytime or evening fatigue or lethargy

·        daytime or evening sleepiness when sitting or inactive, drowsy driving or falling asleep while driving

·        performing actions automatically or by rote, limited attention, memory loss

·        poor judgment, personality changes

·        weight gain, early onset of high blood pressure, severe leg swelling

·        especially in children, hyperactive behavior.

Possible risk factors:

·        overweight with a body mass index (BMI) of 25 or more

·        neck size for a man of 17 inches or more or for a woman of 16 inches or more

·        male gender, being a menopausal or postmenopausal woman

·        family history of sleep apnea, large adenoids or large tongue, short lower jaw which causes the tongue to position itself further back in the throat

·        smoking and use of alcohol or sedatives.

Sources: adapted from the journal Sleep, National Institutes of Health, and James C. O’Brien MD.

More possible hints of sleep apnea:

·        COPD (chronic obstructive pulmonary disease), asthma

·        heart abnormalities, stroke

·        high blood pressure that doesn’t respond to medication

·        acid reflux or GERD

·        diabetes

·        deviated septum (cartilage separating the nostrils going off midline)

·        bruxism (teeth grinding)

·        adult bed wetting

·        irritability, mood changes, anxiety, depression

·        procrastination, difficulty acting on plans or finishing projects, diminished work performance

·        social withdrawal, neglected relationships

·        less interest in sex, sexual dysfunction

·        persistent recurring dreams of struggle and failure

·        the ability to fall asleep two or three hours after getting up in the morning, and/or very long naps in the afternoon, and/or sleeping nine or more hours a night

Assessment Quizzes

If you suspect a sleep problem, take some of these quizzes. They are designed to build awareness and create dialog with your doctor, not to diagnose. Discuss the quiz results and your symptoms with your primary care physician, or a sleep doctor, pulmonologist (breathing specialist), cardiologist, ENT (Ear/Nose/Throat) doctor, or other specialist. If indicated by symptoms, the doctor may suggest a sleep study to rule out sleep apnea or other diagnostic procedures.

In print, an excellent quiz to help detect sleep apnea is in the appendix of Sleep Apnea – The Phantom of the Night , a book by T. Scott Johnson MD, William A. Broughton MD, Jerry Halberstadt, a patient. An online version is at

http://www.healthyresources.com/sleep/apnea/phantom/orders/quiz.html

Epworth Sleepiness Scale and Scores widely used by sleep doctors

http://www.stanford.edu/~dement/epworth.html

American Academy of Family Physicians, Berlin Questionnaire, http://www.swclab.com/images/PDFS/Berlin-Questionnaire.pdf

Online sleep evaluation

http://yoursleep.aasmnet.org/SleepEval.aspx

Early Warning from an Overnight Recording Pulse Oximeter

When you have a routine visit to your physician, along with taking your temperature, the nurse may use a pulse oximeter on your finger tip to measure the oxygen in your blood. The device measures oxygen levels in your blood by noting the color. Oxygenated blood is bright red, blood with hemoglobin desaturation is darker red. It’s painless and noninvasive. Can you get access to not just an ordinary pulse ox, but one that records oxygen levels over time, from your doctor, a friend, rental, or purchase? It’s easy to wear a recording pulse ox overnight in the comfort of your own bed. If the reading in the morning shows a drop in oxygen level beyond a certain percentage, consult a physician, showing him/her the record. This may be an early warning that you have sleep apnea, since most people don’t notice any symptoms. A pulse oximeter alone may detect severe sleep apnea, but is not reliable in less severe cases.

Sleep Study Information

An overnight sleep study in a sleep lab is the gold standard of diagnosis. It’s a very sophisticated way of testing for sleep apnea – obstructive (the most common kind), central (more rare), or mixed – by checking airflow in your nose or mouth, snoring, and the effort your chest makes to breathe in various positions and in different stages of sleep. A lab study will also check for Restless Leg Syndrome, the amount of oxygen in your blood, and your heart rate and rhythm. If your doctor orders a sleep study, insurance or Medicare should pay for it. A split night sleep study may cost $4,000 or more.

1. In the most common, one-night “split study,” half the night is spent measuring your sleep, creating a polysomnogram (PSG) which is later interpreted by a physician. If you seem to have Obstructive Sleep Apnea (OSA), the second half of the night is spent using a CPAP (Continuous Positive Airway Pressure) machine to find the best airflow pressure setting for you.

2. A second option is a two-night study. It’s the same process as a split study, but a full night is used for each part. The first night is a baseline study of your sleep. The second night is a titration study to establish a CPAP pressure setting.

KNOW YOUR NUMBERS. Know your AHI, Apnea Hypopnea Index. This is a key number resulting from the sleep study, like knowing your height, weight, blood pressure, or cholesterol level. Sleep apnea treatment (a dental device, pillar technique, CPAP machine) may differ depending on the severity of the sleep apnea. Three simple definitions are useful:

Apnea. The Greek word “apnea” means “without breath.” You stop breathing during sleep for ten seconds or longer.

Hypopnea. There is airflow through your throat but at a much reduced level, which leads to not getting enough oxygen. It’s abnormally shallow breathing lasting at least ten seconds.

AHI, Apnea-Hypopnea Index for Sleep Apnea:
Less than 5 events (apnea or hypopnea) per hour is considered normal.

5 or more events per hour is considered Mild sleep apnea
15+ considered Moderate
30+ considered Severe
(from T. S. Johnson MD, Sleep Apnea - The Phantom of the Night, page 211)

The AHI doesn’t tell the whole story. A person may have a low AHI but severe sleep apnea. The duration of events and degree of oxygen desaturation are also important.

Sources: Based on personal experience with obstructive sleep apnea and gleaned from the collective wisdom of cpaptalk.com contributors.

Want more? See the peer coaching articles at http://smart-sleep-apnea.blogspot.com , http://www.cpap.com FAQ Learning Center, or search http://www.cpaptalk.com or post a message there.

Not written by healthcare professionals. The information and opinions offered are not intended or recommended as a substitute for professional medical advice.

© Mile High Sleeper, August 2006 - 2011. All rights reserved. You may make copies of this message and distribute in any media for free educational purposes, as long as you credit the author and include this copyright notice and the web address smart-sleep-apnea dot blogspot dot com

Sleep Study and Alternatives

For people exploring sleep apnea and for their healthcare professionals, peer coaching article #3, updated 22 November 2011

Sleep Study Options
An overnight sleep study in a sleep lab is the gold standard of diagnosis. It’s a very sophisticated way of testing for sleep apnea – obstructive (the most common kind), central (more rare), or mixed or complex (both kinds) – by checking airflow in your throat, snoring, and the effort your chest makes to breathe in various positions and in different stages of sleep. A lab study may also check for Restless Leg Syndrome, the amount of oxygen in your blood, and your heart rate and rhythm. If your doctor orders a sleep study, insurance or Medicare should pay for it. A split night sleep study may cost between $1,500 and $5,000. Check your insurance coverage and whether pre-approval is necessary..

1. In the most common, one-night “split study,” half the night is spent measuring your sleep, creating a polysomnogram (PSG) which is later interpreted by a physician. If you seem to have Obstructive Sleep Apnea (OSA), the second half of the night is spent using a CPAP (Continuous Positive Airway Pressure) machine to find the best airflow pressure setting for you.

Advantages of a split study: lower cost, since it’s only one night. If the sleep technician gives you a mask, you get fast feedback in the middle of the night that you most likely have OSA. Later, upon receiving the report, you have a pressure setting for a doctor’s prescription for a CPAP machine.

Disadvantages: if you have concerns about falling asleep in a lab setting, or worry about wearing a respiratory mask for the first time, you may not fall asleep or have poor quality sleep, resulting in an inconclusive outcome or poor study. The sleep technician has less time to record your sleep cycles to do the sleep study and less time to find an effective titration setting, a slow trial-and-error process which requires your sleep.

2. A second option is a two-night study. It’s the same process as a split study, but a full night is used for each part. The first night is a baseline study of your sleep. The second night is a titration study to establish a CPAP pressure setting.

Advantages of a two-night study: Alleviates mask fear on the first night since no mask is needed, supporting better sleep and a better study. The technician has plenty of time to record sleep cycles and on the second night, plenty of time to try various pressure settings during the titration.

Disadvantages: may be twice the cost of a split study. It will take additional time to schedule the second study and get a pressure setting, which could delay the start of treatment.

3. An unusual alternative third option is a single baseline study and use of an APAP machine instead of a titration study to determine pressure settings. After a baseline study report of OSA (the first night), if CPAP seems to be the best treatment, and if you are a candidate for an APAP (an Auto-titrating Positive Airway Pressure) machine, you can get a prescription and machine long before a second night study. In fact, with an APAP machine and software and helpful doctor, it may not be necessary to have a second titration study. The APAP machine can be used to determine pressure settings instead of sleep lab titration.

Research:

American Journal of Respiratory and Critical Care Medicine, Can Patients with Obstructive Sleep Apnea Titrate Their Own Continuous Positive Airway Pressure?
http://ajrccm.atsjournals.org/cgi/content/full/167/5/716 Quote: Home self-titration of CPAP is as effective as in-laboratory manual titration in the management of patients with OSA.

Advantages of a baseline study and APAP: lower cost, since it’s only one night. Alleviates mask fear during the study since no mask is needed, supporting better sleep and a better study. The technician has plenty of time to record your sleep cycles. If you do require a second night titration study, it can still be done later. Requirements: 1) the physician’s decision about the efficacy of APAP machine auto-titration settings instead of sleep lab titration. 2) use of an APAP machine able to record daily details, machine setup manual, and software. 3) physician and patient experimentation to find optimal pressure settings. 4) frequent software downloads by the patient (or a cooperative Durable Medical Equipment provider, DME). Remember, the sleep lab results are the gold standard, held to be the most effective means of determining CPAP machine pressure settings. The questionable trade-off may be better sleep lab equipment versus better patient comfort and resultant sleep in their own bed, and the ability to trial various pressure settings over several nights.

The deciding factors among the sleep study options may be a combination of your medical and psychological needs, your physician’s advice and support, and your insurance or Medicare coverage or your ability to pay out-of-pocket for APAP machine software. Discuss your needs with your physician and find out what your insurance company or Medicare supports and requires. Insurance companies tend to pay for a sleep study and CPAP equipment, because it’s more cost effective than paying for treatment of heart failure or stroke, treatment of car wreck injuries, and other serious health conditions resulting from untreated sleep apnea. Medicare usually requires a sleep study before paying for CPAP equipment. Does your insurance company have the same requirement? What impact do your deductible and co-pay have on your costs for various options? If possible, it may be more expedient to avoid scheduling your sleep study during the last quarter of the year, since the sleep lab may be overly busy then because people wait to schedule testing until they have reached their calendar year insurance deductible. However, if sleep apnea is suspected, it’s best to be tested and get your equipment as soon as possible.

Sleep Study Results

Know these three simple definitions from the sleep study report:

Apnea. The Greek word “apnea” means “without breath.” You stop breathing during sleep for ten seconds or longer.

Hypopnea. There is airflow through your throat but at a much reduced level, which leads to not getting enough oxygen. It’s abnormally shallow breathing lasting at least ten seconds.

AHI, Apnea-Hypopnea Index for Sleep Apnea:
Less than 5 events (apnea or hypopnea) per hour is considered normal.
5 or more events per hour is considered Mild sleep apnea
15+ considered Moderate
30+ considered Severe
(from T. S. Johnson MD, Sleep Apnea - The Phantom of the Night, page 211)

The AHI doesn’t tell the whole story. A person may have a low AHI but severe sleep apnea. The duration of events and degree of oxygen desaturation are also important.


A sleep study uses a pulse oximeter, a device with a red light that clips on your finger. It measures oxygen levels in your blood by noting the color; oxygenated blood is bright red, blood with hemoglobin desaturation is darker red. A pulse oximeter alone may detect severe sleep apnea, but is not reliable in less severe cases.

Get a copy of your sleep study report. You can refer to it from time to time as you manage your treatment. If you visit a specialist (sleep doctor, Ear/Nose/Throat doctor, pulmonologist, cardiologist, eye specialist, allergist, surgeon, dentist, etc.), give them a copy of your sleep study.

KNOW YOUR NUMBERS. Know your AHI, Apnea Hypopnea Index. This is a key number, like knowing your height, weight, blood pressure, or cholesterol level. Sleep apnea treatment (a dental device, pillar technique, CPAP machine) may differ depending on the severity of the sleep apnea.
Comprehensive Sleep Lab Orientation in Print
There are two chapters on sleep testing and understanding your report in the book Sleep Apnea – The Phantom of the Night by TS Johnson MD et al.

Short Sleep Lab Orientation Online Video
View a video and learn more at http://www.cpap.com/cpap-faq/Sleep-Study.html

Tips for Wearing a Mask for the First Time During the Sleep Study
Expect elaborate headgear, face straps, and stiff, bulky plastic nose pieces that make you look like an astronaut. While the sleep technician puts the mask on you, breathe through your mouth. Before you are hooked up to the CPAP machine, ask the technician to let you feel the airflow from the hose on your hand. It’s surprisingly breezy. It will feel much less breezy when felt through a mask. You won’t need it, but to make you more comfortable psychologically, ask the technician to show you how to quickly remove the mask and how to disconnect the mask from the hose or CPAP machine. The technician will show you how to call him or her during the night. While sitting up, spend a few moments “practice breathing” through the mask with CPAP turned on. It works! You can do it. You can even fall asleep while wearing it.

Other Laboratory Sleep Evaluations

For a brief description of the Maintenance of Wakefulness Test and Nap Study, see http://yoursleep.aasmnet.org/Studies.aspx

Alternatives to a Laboratory Sleep Study

In-home test though a physician. Some physicians and insurance companies suggest an in-home test. The patient wears various sensors and belts through the night. The results are monitored and reported. Sleep stages and brain waves cannot be measured as they are in a laboratory sleep study. One in-home process used by Kaiser measures apneas and hypopneas per hour, heart rate, respiratory effort, nasal-oral airflow, oxygen saturation using a pulse oximeter, body position, and snoring intensity and frequency. A simpler device is the Accutest SleepStrip, http://www.accutest.net/products/sleepstrip.php . If you explore these alternatives, discuss with your physician the need and ways to detect OSA (obstructive sleep apnea) vs. central apnea (brain not giving a signal to breathe) and mixed sleep apnea (combination of OSA and central), since treatment is different for the three types, as well as detecting other sleep disorders such as Restless Leg Syndrome. Also determine whether your insurance or Medicare will pay for subsequent treatment based on testing that is not the standard sleep study.

Diagnosis based on symptoms and perceived need may be an option for non-insured patients or patients with highly suspected obstructive sleep apnea (OSA) based on symptoms. Not Every Patient Needs to Go to the Sleep Lab is a thought-provoking Powerpoint presentation by a well respected board certified sleep doctor/pulmonologist, Dr. Barbara Phillips, at a meeting of the American Lung Association of the Central Coast in November 2004. Dr. Phillips is a professor of medicine at the University of Kentucky and is on the board of directors of the National Sleep Foundation. This approach would not detect central sleep apnea or mixed sleep apnea. Treatment differs depending on the diagnosis. If eligible, find out whether Medicare or Medicaid would pay for subsequent treatment without an overnight laboratory sleep study.


Humor by Mike Moran: Oct 13, 2005 A CPAP Failure and http://www.cpaptalk.com/viewtopic/t23827/Sermon-on-The-Mask-Humor.html and Dec 05, 2005 Twas Months After Sleep Study

Sources: Based on personal experience with obstructive sleep apnea.

Want more? See the peer coaching articles at http://smart-sleep-apnea.blogspot.com , http://www.cpap.com FAQ Learning Center, or search http://www.cpaptalk.com or post a message there.

Not written by healthcare professionals. The information and opinions offered are not intended or recommended as a substitute for professional medical advice.

© Mile High Sleeper, August 2006 - 2011. All rights reserved. You may make copies of this message and distribute in any media for free educational purposes, as long as you credit the author and include this copyright notice and the web address smart-sleep-apnea dot blogspot dot com

Tips for Newcomers to Sleep Apnea

For people with Obstructive Sleep Apnea and their healthcare professionals, peer coaching article #9, updated 21 November 2011

1. You’re in the driver’s seat. Take as much control in the process as possible so that you can make informed choices. The interventions are all for your benefit. Because you are the one being sleep tested or using the PAP (Positive Airway Pressure) machine, whether CPAP, AutoPAP or APAP, or BiPAP, you are the one who makes care and treatment successful. A well-meaning respiratory therapist who doesn’t have sleep apnea may suggest a certain mask, but he or she is not the one who needs to wear it every night. Don’t just passively follow, but actively partner and collaborate with your doctor, sleep lab technician, people at the DME (Durable Medical Equipment/Home Medical Equipment provider), and your insurance company. If your reasonable needs are not being met, be polite but assertive, persistent, and creative in pursuing what you need.

2. Whether in the sleep lab or at home with a PAP machine, no one is used to sleeping as a masked hose-head with a vacuum cleaner blowing air up their nose. Managing resistance and fear is a big part of the process. Direct your power of control inward, to manage your thoughts and feelings as well as outward, to manage treatment. Be kind and gentle with yourself, disciplined and determined when necessary. Humor helps. Get support from others. Related discussion thread: http://www.cpaptalk.com/viewtopic/t22566/Normal-to-be-angry-when-newly-diagnosed.html

Learn “The Seven Stages of CPAP and What Is Feeling Good?” in this blog, smart-sleep-apnea at blogspot dot com.

3. Take notes during and after visits with healthcare professionals. There is a lot of information to absorb, remember, and evaluate, with decisions to be made. Make a list of questions between visits to ask the next time you see your physician or respiratory therapist.

4. Control information flow to avoid being overwhelmed. Seek and absorb the information at your own pace so you can make informed choices.

First step: find out about sleep apnea, its health implications, and the sleep lab process and results. Accepting your diagnosis takes some emotional energy and wisdom. Learn that “I NEED TO DO THIS.”

Second step: find out about the various treatment options, based on the type and severity of your apnea. From a sleep study, you need to know your AHI, Apnea Hypopnea Index, or the number of “events” (apneas/no breath and hypopneas/shallow breath) you have per hour, and whether your sleep apnea is mild, moderate, or severe. For mild Obstructive Sleep Apnea (OSA), treatment may include a dental appliance or the pillar technique. For most sleep apnea from mild to severe, CPAP (or APAP or bilevel) may be the best treatment. If CPAP fails, these days surgery is rarely considered. Research long-term effects of surgery before making a decision. Talk with a sleep doctor about options. Internet websites have easily readable descriptions of the treatments and their effectiveness. The most usual option is a CPAP machine, or APAP or BiPAP. If you have OSA and your physician prescribes CPAP, explore the various types and brands of PAP machines through your physician, sleep center, Internet, books, and DME. Partner with your physician to select a fully data-capable or smart display machine, heated humidifier, mask. If your machine doesn’t have a display of AHI, you may buy machine software on your own.

Third step: When you are ready, get more details. If you are getting a machine, find out about the various types of interfaces or masks – nasal masks, nasal pillows, and full face masks. Some users rotate between a nasal mask and nasal pillows, using a full face mask when they have a stuffy nose from a cold. If you breathe through the mouth, a full face mask is probably the best choice. Internet sites from manufacturers, sellers, and user groups have a lot of information and opinions on masks and related equipment. Be discerning when reading user opinions. Most people try several masks over time before they find the one that works for them.

5. Failure is not an option. Determine to succeed. You have a choice of treating your sleep apnea or having a greater risk of high blood pressure, heart disease, stroke, car crashes due to falling asleep at the wheel, lack of mental clarity, lack of energy for relationships, and lack of zest for life. The initial obstacles to successful CPAP therapy are the user’s attitude and uncomfortable (occasionally unbearable) sleeping conditions due to unsuitable equipment. Gone is the illusion of a good night’s sleep. You may have temporary problems such as insomnia, bloating, and rainout (condensation in the hose). Don’t hastily give up on CPAP therapy, when instead you need to give up on a particular piece of equipment or solve a problem. For the first few weeks or months of therapy, the biggest event of each day may be the night. Train for it as you would for an athletic event. Manage your mindset. Manage caffeine, alcohol, drugs, diet, exercise. Get your nose working so you can breathe through it (or get a full face mask). Do your homework on equipment options and modifications. Through a combination of ongoing experimentation with better equipment and nightly practice, you can create acceptable (even comfortable) sleeping conditions and work your way toward good sleep again, truly good sleep. Learn that “I CAN DO THIS.”

6. Make friends with your mask. If you are so inclined, use common sense, mental imagery, visualization, prayer, or therapy to build a peaceful, harmonious, and beneficial relationship with your CPAP machine and equipment (masks, heated humidifier, hose or heated hose, bed pillow, machine software). The modern APAP machine with a heated humidifier, display or smart card with software is a marvelous invention. In contrast, for most people, masks are problematic, but there are many options to explore, and hopefully designers and manufacturers will improve masks in the future. Can you become friendly with your equipment? If you can’t, maybe it’s not you; maybe you have unfriendly equipment. Refit and modify it; experiment. Or replace it with equipment that is better suited to your well being.

7. Gather feedback on your progress. Consider keeping a nightly sleep log. A problem may go away one night but come back the next. With a diary or log, you can see, as well as feel, that you really are making progress over time in spite of frequent equipment struggles. If you get a machine with software tracking information, the data is enormously helpful for motivation and problem solving, for both you and your doctor. You will be well aware of problems. Remember to celebrate small victories.

8. Persist in having a positive, problem-solving attitude. Get creative ideas from an online CPAP community, local support group, and other users. Make improvements in your equipment and regimen. Give each change you make some time to work before trying another option. Learn to play the waiting game – waiting for appointments, insurance approval, equipment delivery, adapting to new equipment. Be patient, remembering it’s not always easy when you are sleep deprived. Stay with your therapy, however you need to modify it to make it work. Success is in your hands – and head.

Humor by Mike Moran: Dec 01, 2005 CPAP Slogans

Source: Written from personal experience. Not written by healthcare professionals. The information and opinions offered are not intended or recommended as a substitute for professional medical advice.
© Mile High Sleeper, August 2006 - 2011. All rights reserved. You may make copies of this message and distribute in any media for free educational purposes, as long as you credit the author and include this copyright notice and the web address smart-sleep-apnea dot blogspot dot com

CHANGING Your CPAP Pressure Settings

For people with sleep apnea and for their healthcare professionals, peer coaching article #18, updated 1 December 2011

Part 2 of 2 on PAP Pressure
This is the second of two articles. See the first article on Checking Your CPAP Machine Setting, sections on Pressure Definition, Titration, and Consequences of a wrong pressure setting.

For Those Who Need and Want to Be More Involved with Their PAP (Positive Airway Pressure) Therapy

Why responsible self-management of PAP therapy? This is important.
Most people find that useful information on their optimal pressure settings and PAP therapy in general is elusive. As a result, some people seek information online, buy machine software, and by necessity start to manage their own therapy, because no one else is managing it on a nightly basis. If the quality of information they are able to access is good, if they are discerning, and if they have good medical backup and supervision, this can work well. These people are committed and actively working toward success in a difficult therapy.

Responsible self-management does not mean sole management. Working with a doctor (or physician’s assistant, nurse practitioner, nurse, respiratory therapist) does not have to be an “either-or” process where either the doctor is completely responsible or the patient is completely responsible. Working with a doctor can be a “both-and” process of collaboration. Both the doctor and the patient are managing the therapy. The doctor is managing the medical side and some aspects of the therapy, and the patient is managing his/her nightly therapy and equipment, seeking advice and support from the doctor. The patient is closest to the therapy and best able to notice problems, observe results, and take action to make the treatment work. This may include making gradual changes in pressure settings, in collaboration with the doctor, and trying them long enough to observe results.

Similar to responsible patients with diabetes who test and moderate their blood sugar levels, responsible patients on PAP can be trusted to adjust the many variables of their PAP equipment. CPAP is a safe and live-saving therapy. Not only can the capable PAP user manage the equipment variables; they must manage the variables to be successful.

Know the original CPAP machine pressure setting resulting from your sleep study titration, if you had one. Know the original pressure setting your doctor prescribed. If you have already mastered problems with the hose, mask, leaks, comfort, humidity, ramp/settling, and exhalation relief, and you’ve been on the therapy for several weeks or months and are still not feeling as good as you think you should, or still experiencing sleep apnea symptoms such as nocturia (nighttime urination), you may have a wrong pressure setting. Discussion thread of the inaccuracies of sleep lab titrations and patient at-home experimentation: http://www.cpaptalk.com/viewtopic.php?t=19947&postdays=0&postorder=asc&start=0
Discussion thread on changing your pressure settings: http://www.cpaptalk.com/viewtopic/t25586/New-here--Do-you-change-your-own-pressures.html
Discussion thread on why it’s important:

http://www.cpaptalk.com/viewtopic/t27856/Why-taking-your-treatment-into-your-own-hands-is-important.html

For people without serious health problems who use machine software in working with their doctor to adjust pressure settings because they do not have a competent Respiratory Therapist (RT). This is moving up a notch in terms of responsible self management of your therapy. Are you free of serious health conditions such as heart or respiratory trouble, central or complex/mixed sleep apnea, mental health problems, problems with mental acuity, or any other condition that would make your working with pressure settings inadvisable? Are you capable and confident about working with the machine settings and software? Is your physician open to working with you on pressure settings in this manner? See the discussion thread on working with a helpful doctor at http://www.cpaptalk.com/viewtopic/t14847/A-GOOD-doctor-story-for-a-change.html .

It is illegal for a DME (Durable Medical Equipment provider) to change your pressure setting without a doctor’s prescription. It is not illegal for you to work with your doctor in changing your own pressure setting.

Don’t try this at home without software! If you attempt to change pressure settings without software, it’s like shooting at an archery target with your eyes closed. You don’t have enough information to know if your arrow is getting close to the bulls eye. You need to have a machine that is fully data capable, and buy the software (and perhaps a card reader) online at your own expense. Although most software is designed and labeled for the clinician, it is not illegal for you to have it as a patient. Some manufacturers offer software designed for the patient. Be aware that your machine’s sensors and software are crude, compared to the sophisticated equipment in a sleep lab. However, they are good enough to be helpful in monitoring and adjusting therapy. Once you have the software, collect some reports to show your doctor, showing your leaks are under control but your AHI (Apnea Hypopnea Index) is still too high. Again visit your doctor and get a written prescription for a new safe pressure or range of pressure, based on your sleep study.

Write down your original pressure and each change you make. Most important, monitor and keep a daily log of how you feel each day, related to the pressure setting and other variables such as mask leak. How you feel is the best indicator of a good pressure setting.

Monitor the software for AHI, flow limitation or UARS, daily events per hour at various pressures, mask leaks, and any other useful data. It’s tempting to overly rely on the software data’s numbers, since they look so precise, but how you feel is more important. It’s necessary to know how to read graphs and charts. If you can’t understand them, get a helper or ask your physician. You will probably need help from a doctor, sleep technician, or other software users to read the first report, if the software doesn’t include definitions of measurements. Although you can ask, your DME RT will probably be prohibited from helping you interpret software reports.

Two measurements of Sleep Disordered Breathing (SDB)
Apnea. The Greek word “apnea” means “without breath.” You stop breathing during sleep for ten seconds or longer.
Hypopnea. There is airflow through your throat but at a much reduced level, which leads to not getting enough oxygen. It’s abnormally shallow breathing lasting at least ten seconds.

1. AHI, Apnea-Hypopnea Index for sleep apnea:
Less than 5 events (apnea or hypopnea) per hour is considered normal.
5 or more events per hour is considered Mild sleep apnea
15+ considered Moderate
30+ considered Severe
(from T. S. Johnson MD, Sleep Apnea - The Phantom of the Night, page 211)

Flow limitation or Upper Airway Resistance Syndrome (UARS) is another important, subtle form of SBD. The airflow meets resistance in the nose or mouth, causing the brain to waken the sleeper. The American Academy of Sleep Medicine advocates counting apneas, hypopneas, and flow limitations/UARS for the Respiratory Disturbance Index, RDI, which is more comprehensive than the Apnea-Hypopnea Index.

2. RDI, Respiratory Disturbance Index for sleep apnea:

5 to 20 events per hour is Mild SDB
20 to 40 events is Moderate SDB
More than 40 events is Severe SDB
(from Barry Krakow, MD, Sound Sleep, Sound Mind, page 245)

Partner with your physician. Show him/her your weekly software printouts and sleep log or diary of how you feel. Use them to plan the next pressure adjustment. For those who were never titrated in a sleep lab, it may take weeks or months to find your optimal pressure or pressure range, but meanwhile, you should be feeling better with each incremental improvement in pressure.

There are no single formulas for success. Try a prescribed setting long enough to know if it works. For most small pressure change adjustments, give them at least week or two. Study your software full details report daily if experiencing any problems, or at least weekly to track and analyze each adjustment. Make small, incremental changes. Change one thing at a time to track the effect and not confuse it with other changes. For example, change only one of the following at a time: mask, mask fitting, humidity level, exhalation relief level (if applicable), ramp time (if applicable), pressure. That’s why it may take months to experiment with all the variables. Most people get their masks and leaks under control, and humidification and exhalation relief, before adjusting pressure settings. (Exception: people who haven’t been titrated and have an APAP initial prescription of 4 to 20 cm/H2O.) For example, you may experiment with masks for a month, getting comfort and leaks under control, while leaving the pressure setting as is. Then you may change the humidifier setting for three days, and then the exhalation relief for four days, leaving the mask and pressure setting unchanged. The following week or two, you may try a new pressure, not changing the mask or other settings. The next week, more refining of the pressure adjustments. Keep a written record of all changes and how you feel, so you don’t get confused and can analyze it later. Discussion thread: http://www.cpaptalk.com/viewtopic/t25791/General-protocol-for-self-pressure-adjustment--Comments.html

Continue to use the detailed software reports and how you feel to track and confirm therapy progress. After you have a correct pressure or range, over time you may want to monitor only monthly or every few months or when you have a problem. When you have a change in masks or weight change, you may want to monitor your software reports and adjust pressures again.

If needed, seek advice from other CPAP users such as
http://www.cpaptalk.com/viewtopic.php?t=10357
http://www.cpaptalk.com/viewtopic.php?t=10426 and
http://www.cpaptalk.com/viewtopic.php?t=16391&postdays=0&postorder=asc&start=0

Once you have a plan, try if for a week or two, and then, based on your software report and the way you feel, adjust it gradually, narrowing or widening the range or moving it up or down. An AHI of 10 events per hour, which is mild sleep apnea, may mean that your heart is still susceptible to damage. Continue to strive for feeling clear-headed and energized all your waking hours and an AHI of 5 or less. Some people report that an AHI of 2.5 seems to be a marker. With an AHI from 2.5 to 5 they feel tired by the late afternoon or evening, or feel not as good that day. With an AHI under 2.5, they feel great all their waking hours. By comparing how you feel and your AHI figures, you can gauge what your body needs from its PAP therapy. Repeat a pressure or range to be certain that it’s the best for you or a different pressure is needed.

After you have been stable on the same pressure or pressure range for a few weeks or months, borrow an overnight recording pulse oximeter from your doctor or DME, or buy one online. Use it to check your blood oxygen saturation levels at night as another indicator that your PAP is working well.

Ideas for APAP users to discuss with their doctors

With your doctor, discuss a safe range for pressure adjustments in your treatment based on your sleep study, especially the higher pressure. For example, if your titrated pressure is 10 cm/H2O and you have an APAP, how suitable is a range from 7 to 15 cm/H2O for starters? Or does your doctor recommend 9 to 12 cm/H2O? If you haven’t been titrated, is a range from 6 to 16 cm/H2O appropriate for starters or not?

Next, for APAP, some people find a pressure to use as a central number for a range of pressure. If they have a titrated pressure, they use that number. Some people use the median or mean pressure as the central number.

Continuing the above about APAP, some people use their central number and add three points above and below it for a range. For example, if the titrated pressure is 10 cm/H2O, the range is 7 to 13 cm/H2O. Some people start with their titrated setting and go 3 cm/H2O under and 2 cm/H2O above the titrated pressure; for example, 7 to 12 cm/H2O. Some people benefit from an even narrower range, since that may help the machine to respond faster to events; for example, 9 to 11 cm/H2O. Remember, this is tricky business related to your health, throat anatomy, and the capabilities of each machine, so consult a doctor. For example, if you go 2 or 3 above your titrated pressure, is this likely to lead to a pressure-induced central apnea?

Some people on APAP use their titrated pressure as their lowest setting and go up 2 or 3 cm/H2O to catch events. For example, if the titrated pressure is 10 cm/H2O, the range is 10 to 12 or 13 cm/H2O. Again, work with your doctor, based on your titration study and health conditions.

Ideas for straight CPAP users to discuss with their doctors

At some point when they have detected a potentially optimal pressure setting, some people try switching to the straight CPAP mode on their APAP machine, to see if they get better results. Some use their titrated pressure, or 90% pressure, as a straight CPAP setting. If you use the daily events per hour data to find the pressure that gives you the lowest AHI and use that as a straight CPAP setting, it may be too low for events that require a higher pressure setting, and the 90% pressure may be better. Or the opposite, if a 90% pressure is too high and leads to aerophagia or central apneas.

For straight CPAP or autopap users in the CPAP mode, if all this seems too complicated, some start with their titrated pressure or a number just above or below it. For example, with a titrated pressure of 10 cm/H2O, they try that for a week and note how they feel, then try 9 cm/H2O for a week, then try 11 cm/H2O for a week, etc. Once a pressure is found that seems to work, they can fine-tune by going up and down half a cm/H2O from that pressure to see if there is an improvement in the way they feel. For example, trying both 10 and 10.5 cm/H2O.

Discussion thread on the safety, legality, and merit of the patient changing their own pressure settings at http://www.cpaptalk.com/viewtopic.php?t=3366&postdays=0&postorder=asc&start=0

Discussion thread on CPAP vs. APAP and the complexity of adjusting your own pressure settings:
http://www.cpaptalk.com/viewtopic.php?t=18054&postdays=0&postorder=asc&start=0

Sources: Based on personal experience with obstructive sleep apnea and gleaned from the collective wisdom of cpaptalk.com contributors.

Want more? See the peer coaching articles at http://smart-sleep-apnea.blogspot.com , http://www.cpap.com FAQ Learning Center, or search http://www.cpaptalk.com or post a message there.

Not written by healthcare professionals. The information and opinions offered are not intended or recommended as a substitute for professional medical advice.

© Mile High Sleeper, August 2006 - 2011. All rights reserved. You may make copies of this message and distribute in any media for free educational purposes, as long as you credit the author and include this copyright notice and the web address smart-sleep-apnea dot blogspot dot com