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
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.
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.
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
© 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
Labels: AHI, apnea hypopnea index, control information flow, feedback, informed choices, manage resistance and fear
posted by Mile High Sleeper Gal | 10:13 AM
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