Obstructive Sleep Apnea CPAP get smart fast

Disclaimer: These peer coaching articles describe what some savvy, successful CPAP users have done to make their treatment successful. Not written by healthcare professionals. The information and opinions may not necessarily be correct or helpful for you and your unique needs. Rely on sound, well informed medical advice from your doctors and other healthcare professionals well versed in treatment of obstructive sleep apnea.

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IF I ONLY KNEW THEN WHAT I KNOW NOW! Blog Purpose: To help you with your CPAP therapy for Obstructive Sleep Apnea (OSA). For those with OSA, family, friends, physicians, nurses, respiratory therapists, sleep technicians. Why This Came to Be: I didn’t have the information I needed for successful CPAP treatment when I needed it. A kind sleep lab technician with OSA told me about a web site he had heard about from another patient, www.cpaptalk.com. The rest is history. It took me months of reading hundreds of posts to gather the information I needed while suffering through equipment struggles. Not everyone has that time or wants to struggle needlessly. I wrote up my own experience and advice from the collective wisdom of experienced CPAP users on cpaptalk.com. Thanks to them, my treatment is working. I’m not sure I could have done it without them. The online CPAP equipment store www.cpap.com created cpaptalk.com. I appreciate what they are giving back to the CPAP community through their website forum, as well as their fair prices. NOBODY IS AS SMART AS EVERYBODY! To email me, send a private message to Mile High Sleeper at www.cpaptalk.com.

Wednesday, December 07, 2011

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

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