From Mike Moran's 7 stages of CPAP, I'm in the immersion/obsession phase! As a volunteer, I'm turning what I've learned from y'all and my own experience into handouts for my family doctor to use for xPAP patient education, especially those who don't use the Internet. Want to add your ideas and comments? I can't promise I'll add them, but I will read them! If you do add ideas that I use, I'll take that as meaning you give me permission to use them (no copyright, not selling this). I'm not trying to cover all the basics, just some key advice for the first month or more on xPAP. One of the handouts is Mike Moran's 7 stages of CPAP and Perry's What is feeling good? Good stuff! More handouts to follow, and here is the first.
Sleep Apnea Resources
Book
Sleep Apnea – The Phantom of the Night, by T. Scott Johnson, MD, William A. Broughton, MD, Jerry Halberstadt, a patient. 2003. Available at http://www.amazon.com for about $26. Comprehensive, user-friendly, loaded with practical information and written with emotional intelligence. Explains central and obstructive sleep apnea syndrome. Explains sleep study reports. Comparisons of therapies and equipment. Frequently asked questions. Sleep log form, medical information form for your wallet, doctors, and dentist. Internet links.
Internet Web Sites
http://www.CPAPtalk.comA forum and community for all things CPAP. Excellent site. Forum members have informative, cheerful, supportive opinions. FAQ. CPAPopedia defines terminology. Manufacturers’ product videos, free DVD Introduction to the Sleep Lab. Online chats.
https://www.cpap.comAn online xPAP (CPAP, Bi-PAP, Auto PAP) store. Equipment descriptions are easier to navigate and read and more informative than many manufacturers’ web sites. Product comparisons. Has manufacturers’ videos about equipment and fitting, and printable price list. Email newsletters with product updates. There are several other online xPAP stores.
Manufacturers’ websites, such as Fisher and Paykel, http://www.fphcare.com. ResMed, http://resmed.com. Respironics, http://remstar.respironics.com/ .
http://www.apneasupport.orgApnea Support Forum sponsored by the American Sleep Apnea Association.
http://www.healthyresources.comInformation and links to other resources.
http://www.jalanetipot.comInstructions on how to use salt water to irrigate your nasal cavities, with indirect sinus cleansing as an added benefit. Helpful for stuffy noses, colds, and daily hygiene.
http://www.sleepservicesofjasper.com/1- ... y%20terms'Glossary for sleep study terms.
Professional Organization
American Sleep Apnea Association (ASAA), Washington, DC and local groups. Phone 202.293.3650. http://www.sleepapnea.org/ $25 annual membership includes newsletters and a medical alert bracelet or necklace. Local AWAKE Network support groups meet in sleep centers or hospitals.
Some Initial Problems, Remedies and Equipment
Interfaces - Masks
If you are find that your first mask is comfortable and doesn’t leak, you may not want to explore another until your insurance pays for it in six months. More common is the need to try several masks before finding ones that work. Types are nasal masks, nasal pillows, full face masks, and prongs (cannula). There are many brands of masks in each category. One brand of nasal mask may not work for you; another may work well; and the same for nasal pillows and full face masks.
With any interface, do what you can to make sure it’s fitted properly. In addition, you may need to so repeated fitting and tweaking to make it work, tested over many nights. Your working unit of time for mask-success is probably daily, or rather, nightly. The timeframe of your doctor, insurance, and DME to approve and get you another mask is probably in weeks. If your mask doesn’t work, this means nights and weeks of frustration while waiting for your next mask and the temptation to give up on xPAP. Discuss with your physician the option of getting two or three types of masks (nasal mask, nasal pillow, full face mask) at the start of your therapy, especially if it’s medically necessary.
Advantages: you can continue your nightly xPAP therapy if one mask doesn’t work or it breaks. If nasal pillows make your nostrils sore, you can switch to a nasal mask the next night; or if a nasal mask makes your face sore, you can switch to a nasal pillow. If you have a cold and your nose is stuffy, you can switch to a full face mask. If you want to take a daytime nap but your mask is still wet from morning cleaning, you have a dry back-up mask.
Disadvantages: insurance may pay for only one mask at the start or may pay for medically necessary masks only over a period of months. You may need to buy the less expensive interfaces on your own. (You don’t need a prescription to buy xPAP interfaces and accessories, but consult your doctor.) At the start, it may seem overwhelming to research and adapt to two types of masks instead of one. You may not be psychologically ready to try a type of mask you are resistant to, until you have become accustomed to another type and also found its limitations. (A remedy: balance the level of your resistance with the convenience of having a back-up option on hand.) You may be tempted to not give each type and brand of mask a fair trial. A remedy is to stick with one (for example, nasal mask) until it works or you give up on trying to make it work; then switch to the other type (nasal pillows), while you then continue to explore other brands of nasal masks, and so on.
Hose Management
From https://www.cpap.com: “CPAP hose management becomes more important to side sleepers. The hose should never "hang" between the CPAP and the bed. This weight will put a side force on the mask, causing leaks and discomfort. A portion of the hose should be lying on the bed so that the forces it places on the mask are minimized.” Attach the hose to the wall or headboard, using a clamp, cup hook, twister tie, or pin, threading the hose through a couple of ponytail bands or Scrunchie. The resulting redirection of the mask may reduce venting problems if the mask has been venting on you or your bed partner.
Bed Pillow
If your interface mask and pillow are fighting, try a smaller pillow, so the mask can hang off the side; or a buckwheat pillow, neck pillow, or memory foam pillow, but make sure the pillow doesn’t interfere with your mask if you are a side sleeper. Or try the PAPillow, http://www.PAPillow.com, available through http://www.talkaboutsleep.com. Shaped for xPAP wear. Double edge pillow is $59, mini is $39, plus shipping.
Rainout - Condensation in Hose
If you have a heated humidifier as part of your xPAP in a cool bedroom, water may condense in the hose running between the humidifier and your mask, drip into your mask, and leak out. Use one or more of these possible remedies:
· Place your machine and humidifier well below your bed, on the floor or a bottom nightstand shelf, so the hose has a more vertical run before reaching your headboard. (You may need a longer hose.) Hold the hose in place with a ponytail Scrunchie pinned to the edge of the mattress, and another on the headboard.
· Turn down the heated humidifier to the lowest, coolest setting. If that doesn’t work, turn off the heat but continue to use the humidifier.
· Raise the room temperature.
· Keep the hose under the blanket.
· Wrap it in bubblewrap or buy a hose cover.
· Buy a heated hose. Currently, the only add-on heated hose available in the US is the “Aussie hose” from SleepZone in Australia, http://www.sleepzone.com.au/ Hose is approximately US $89 plus $16 shipping; may require a power adaptor from Radio Shack. Allow up to 3 weeks for delivery. If necessary, cover the heated hose with a second hose cover.
· If your mask has an additional hose, cover that also.
Bloating, Swallowing Air, Aerophagia
This may be a temporary condition as you adjust to xPAP.
From https://www.cpap.com:
“AEROPHAGIA. The word "phage" in Greek means "to eat." Aerophagia is literally to eat air. In the modern context, it means swallowing too much air, a common cause of gas in the stomach and belching.
This is sometimes a result of CPAP Therapy. Unfortunately, the best solutions for this problem are not a catch all but instead an attempt to find the middle ground between needed CPAP pressures.
Here's what you can do:
1. Tell your CPAP prescribing physician. It may be better to decrease the CPAP level a bit and put up with some minor airway problems if we can significantly decrease the bloating. Sometimes this works great, sometimes not at all. An auto adjusting CPAP should also be considered as these machines reduce the average pressure the user receives. Get help settings the maximum pressure on the auto as the highest pressures can make things much worse.
2. As the chin of a CPAP user nears the chest, air has a greater chance of entering the digestive tract. Where possible, keep chin up in relation to the torso.
3. Sleeping in a position different than normal helps keep the air out of the stomach. Try different sleeping positions. Left side, right side, inclined with pillows, or flat.”
See your doctor to rule out other related disorders. More ideas: Try a PAPillow; or neck pillow or memory foam pillow, but make sure it’s compatible with your mask when you sleep on your side. Drink a carbonated beverage in the morning to help belch out gas. Use wind-relieving yoga postures in the privacy of your boudoir.
Replacing Equipment, Filters, Parts
There are several Internet xPAP stores, such as https://www.cpap.com. Although a prescription is not required to purchase interfaces (masks), filters, hoses, humidifiers, and software over the Internet, use the assistance of your physician in deciding on an interface or humidifier. Inform your physician when you do purchase a new interface. Advantages of shopping online: price, especially when buying equipment out-of-pocket (not through your healthcare insurance); easy product comparison, convenience; no “red tape” or complicated procedures, hopefully expertise. May have a broader range of products and product knowledge than your local source.
Advantages of purchases through a local sleep center or DME (Durable Medical Equipment supplier): may be already set up for your insurance. Hopefully, the expertise of staff, such as a skilled mask-fitter. Ability to try on several masks before making a choice. Mask fittings and adjustments are best done when you are lying down on a pillow, because of the effects of gravity and that is how you will wear the mask. The gold-standard of mask fitting is in a sleep center environment where the fitter uses lab equipment to test for leaks with each mask you try, at various CPAP pressures while you lay on your back and each side.
Commentary by Mile High Sleeper, APAP user. Used with permission. Jan. 2006
tips for newbies - add your ideas (long)
8 posts
• Page 1 of 1
-
Mile High Sleeper
- Posts: 275
- Joined: Sun Dec 18, 2005 5:48 pm
- Location: Colorado
- Contact:
tips for newbies - add your ideas (long)
_________________
| Mask: Ultra Mirage™ Full Face CPAP Mask with Headgear |
| Additional Comments: SleepZone heated hose, PAPillow, bed wedge, Grossan Hydro-Mate, SnuggleHose, AIEOMed Everest w/ hh, battery pack, DC cord, PadACheek, Headrest pillows |
Mile High Sleeper Gal
Problems cannot be solved at the same level of awareness that created them. - Albert Einstein
Do not wait for leaders; do it alone, person to person. - Mother Teresa
Problems cannot be solved at the same level of awareness that created them. - Albert Einstein
Do not wait for leaders; do it alone, person to person. - Mother Teresa
mile high
mile high??
like airman?
just wondering
like airman?
just wondering
-
Mile High Sleeper
- Posts: 275
- Joined: Sun Dec 18, 2005 5:48 pm
- Location: Colorado
- Contact:
2nd tips for newbies - add your comments (long)
Want to add any ideas? I may or may not use them in this handout for my doctor to use as patient education. See 1st Tips for Newbies.
Tips for Newcomers to Sleep Apnea
1. 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 lab tested or using the xPAP (CPAP, Bi-PAP, Auto-PAP) machine, you are the one who makes the care and treatment successful. Don’t just passively follow, but actively partner and collaborate with your doctor, sleep lab technician, the DME (Durable Medical Equipment supplier), 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 an xPAP 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.
3. Take notes during or 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 to ask the next time you see your doctor or technician.
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.
Second step: find out about the various treatment options, based on the type and severity of your apnea. For Obstructive Sleep Apnea (OSA), treatment may include dental appliances, pillar technique, xPAP and the various machines, or surgery. Talk with your doctor about options. Internet websites have easily readable descriptions of the treatments and their effectiveness. The most usual option is an xPAP machine. If you have OSA and your physician prescribes xPAP, explore the various types and brands of xPAP machines through your physician, sleep center, Internet, books, and DME. Partner with your physician to select a machine.
Third step: Only when you are ready, get more details. If you are getting a machine, find out about the various types of interfaces – nasal masks, full face masks, nasal pillows, and prongs. Some users rotate between a nasal mask and nasal pillows, using a full face mask when they have a stuffy nose from a cold. Internet sites from manufacturers, sellers, and user groups have a lot of information and opinions on interfaces and related equipment. Be discerning when reading user opinions. Most people try several interfaces over time before they find the ones that work for them.
5. If you are so inclined, use common sense, mental imagery, visualization, or prayer to build a peaceful, harmonious, and beneficial relationship with your xPAP machine and accessories (interface mask or nasal pillows, humidifier, hose, pillow, software). 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 or practices that are better suited to your well being.
6. Get feedback on your progress. Consider keeping a daily 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 equipment struggles. If your machine has 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.
7. Adopt a positive, problem-solving attitude. Get creative ideas from a CPAP community online, local support group, or 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.
Commentary by Mile High Sleeper, APAP user, with thanks to members of the forum and community of all things CPAP, http://www.cpaptalk.com/ January 2006
Tips for Newcomers to Sleep Apnea
1. 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 lab tested or using the xPAP (CPAP, Bi-PAP, Auto-PAP) machine, you are the one who makes the care and treatment successful. Don’t just passively follow, but actively partner and collaborate with your doctor, sleep lab technician, the DME (Durable Medical Equipment supplier), 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 an xPAP 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.
3. Take notes during or 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 to ask the next time you see your doctor or technician.
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.
Second step: find out about the various treatment options, based on the type and severity of your apnea. For Obstructive Sleep Apnea (OSA), treatment may include dental appliances, pillar technique, xPAP and the various machines, or surgery. Talk with your doctor about options. Internet websites have easily readable descriptions of the treatments and their effectiveness. The most usual option is an xPAP machine. If you have OSA and your physician prescribes xPAP, explore the various types and brands of xPAP machines through your physician, sleep center, Internet, books, and DME. Partner with your physician to select a machine.
Third step: Only when you are ready, get more details. If you are getting a machine, find out about the various types of interfaces – nasal masks, full face masks, nasal pillows, and prongs. Some users rotate between a nasal mask and nasal pillows, using a full face mask when they have a stuffy nose from a cold. Internet sites from manufacturers, sellers, and user groups have a lot of information and opinions on interfaces and related equipment. Be discerning when reading user opinions. Most people try several interfaces over time before they find the ones that work for them.
5. If you are so inclined, use common sense, mental imagery, visualization, or prayer to build a peaceful, harmonious, and beneficial relationship with your xPAP machine and accessories (interface mask or nasal pillows, humidifier, hose, pillow, software). 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 or practices that are better suited to your well being.
6. Get feedback on your progress. Consider keeping a daily 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 equipment struggles. If your machine has 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.
7. Adopt a positive, problem-solving attitude. Get creative ideas from a CPAP community online, local support group, or 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.
Commentary by Mile High Sleeper, APAP user, with thanks to members of the forum and community of all things CPAP, http://www.cpaptalk.com/ January 2006
_________________
| Mask: Ultra Mirage™ Full Face CPAP Mask with Headgear |
| Additional Comments: SleepZone heated hose, PAPillow, bed wedge, Grossan Hydro-Mate, SnuggleHose, AIEOMed Everest w/ hh, battery pack, DC cord, PadACheek, Headrest pillows |
Mile High Sleeper Gal
Problems cannot be solved at the same level of awareness that created them. - Albert Einstein
Do not wait for leaders; do it alone, person to person. - Mother Teresa
Problems cannot be solved at the same level of awareness that created them. - Albert Einstein
Do not wait for leaders; do it alone, person to person. - Mother Teresa
-
Mile High Sleeper
- Posts: 275
- Joined: Sun Dec 18, 2005 5:48 pm
- Location: Colorado
- Contact:
3rd tips for newbies - sleep study - add your ideas (long)
See 1st tip. Patient education material. This one is for people about to do a sleep study. I didn't do a split study, just a sleep study, so didn't try CPAP in the lab. My first experience was at the DME, not a quality experience, and on my own. So I'd really appreciate your tips for putting on a mask and using CPAP for the first time, especially for people who are apprehensive.
Sleep Study Resources
Free DVD
“Introduction to the Sleep Lab”. Order from http://www.CPAPtalk.com. Allow 14 days for delivery.
Book
Sleep Apnea – The Phantom of the Night, by T. Scott Johnson, MD, William A. Broughton, MD, Jerry Halberstadt, a patient. 2003. Available at http://www.amazon.com for about $26. Chapters on sleep tests and understanding your report. Excellent quiz to help detect sleep apnea. Comprehensive, user-friendly, compassionate.
Internet Web Site
http://www.sleepfoundation.org/hottopic ... d=10&id=90National Sleep Foundation, Drowsy Driving, Warning Signs
Basic Information
In the usual one-night “split study,” half the night is spent measuring your sleeping. If you have obstructive sleep apnea, the second half of the night is spent using a CPAP machine to find the best airflow pressure setting for you. Another option is a two-night study. It’s the same process, but a full night is used for each part. Discuss advantages and disadvantages of each with your physician and find out what your insurance company will support.
Apnea. The Greek word "apnea" literally means "without breath." With sleep apnea you temporarily stop breathing during sleep.
Hypopnea. There is airflow through your throat but at a much reduced level; leads to not getting enough oxygen.
Apnea-Hypopnea Index (AHI) for Obstructive Sleep Apnea:
5+ events per hour is considered Mild
15+ considered Moderate
30+ considered Severe
(from T. S. Johnson, Sleep Apnea, page 211)
Tips for Wearing a Mask and Using CPAP for the First Time
· Expect elaborate headgear, face straps, and plastic nose pieces that make you look like an astronaut.
· While the sleep technician puts on the mask, 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 them, but to make you more comfortable psychologically, ask the technician to show you “escape hatches,” how to quickly remove the mask and how to disconnect the hose from the mask or CPAP machine. The technician will show you how to call him or her.
· While sitting up, spend a few moments “practice breathing” through the mask with CPAP turned on. It works! You can do it.
Commentary by Mile High Sleeper, APAP user. Used with permission. January 2006
Sleep Study Resources
Free DVD
“Introduction to the Sleep Lab”. Order from http://www.CPAPtalk.com. Allow 14 days for delivery.
Book
Sleep Apnea – The Phantom of the Night, by T. Scott Johnson, MD, William A. Broughton, MD, Jerry Halberstadt, a patient. 2003. Available at http://www.amazon.com for about $26. Chapters on sleep tests and understanding your report. Excellent quiz to help detect sleep apnea. Comprehensive, user-friendly, compassionate.
Internet Web Site
http://www.sleepfoundation.org/hottopic ... d=10&id=90National Sleep Foundation, Drowsy Driving, Warning Signs
Basic Information
In the usual one-night “split study,” half the night is spent measuring your sleeping. If you have obstructive sleep apnea, the second half of the night is spent using a CPAP machine to find the best airflow pressure setting for you. Another option is a two-night study. It’s the same process, but a full night is used for each part. Discuss advantages and disadvantages of each with your physician and find out what your insurance company will support.
Apnea. The Greek word "apnea" literally means "without breath." With sleep apnea you temporarily stop breathing during sleep.
Hypopnea. There is airflow through your throat but at a much reduced level; leads to not getting enough oxygen.
Apnea-Hypopnea Index (AHI) for Obstructive Sleep Apnea:
5+ events per hour is considered Mild
15+ considered Moderate
30+ considered Severe
(from T. S. Johnson, Sleep Apnea, page 211)
Tips for Wearing a Mask and Using CPAP for the First Time
· Expect elaborate headgear, face straps, and plastic nose pieces that make you look like an astronaut.
· While the sleep technician puts on the mask, 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 them, but to make you more comfortable psychologically, ask the technician to show you “escape hatches,” how to quickly remove the mask and how to disconnect the hose from the mask or CPAP machine. The technician will show you how to call him or her.
· While sitting up, spend a few moments “practice breathing” through the mask with CPAP turned on. It works! You can do it.
Commentary by Mile High Sleeper, APAP user. Used with permission. January 2006
_________________
| Mask: Ultra Mirage™ Full Face CPAP Mask with Headgear |
| Additional Comments: SleepZone heated hose, PAPillow, bed wedge, Grossan Hydro-Mate, SnuggleHose, AIEOMed Everest w/ hh, battery pack, DC cord, PadACheek, Headrest pillows |
Mile High Sleeper Gal
Problems cannot be solved at the same level of awareness that created them. - Albert Einstein
Do not wait for leaders; do it alone, person to person. - Mother Teresa
Problems cannot be solved at the same level of awareness that created them. - Albert Einstein
Do not wait for leaders; do it alone, person to person. - Mother Teresa
-
Mile High Sleeper
- Posts: 275
- Joined: Sun Dec 18, 2005 5:48 pm
- Location: Colorado
- Contact:
last tips for newbies - from Mike Moran and Perry
Last to be posted but certainly not least! I posted these so you don't have to dig them up on the web site. For patient education.
The Seven Stages of CPAP by Mike Moran. Used with permission.
Posted to http://www.cpaptalk.com member forum Wed. Dec. 14, 2005
Since many are new to this therapy I thought I should put together some of the common threads of what we all go through for ourselves and our loved ones. This is also something you might share with your family or friends so they might gain an understanding of what you are dealing with.
1. Denial – This is something we are very good at because we have been practicing it for years. If asked if you snore most will deny it and maybe point their finger at their bed partner. It appears that the louder you snore, the louder your protests. It is embarrassing and no one wants to admit they have problems doing the simple task of sleeping. Images of the Three Stooges and the cartoon characterizations of snoring we grew up with don’t help us in facing a life limiting problem.
2. Realization – For some of us it is when our spouses tell us how scared they get at night when we stop breathing for periods of time. They have gotten used to our rumbling but are now are awakened by our silences and the thought we might not wake up. For others it’s the moments of drowsiness at our desks or even worse at the wheel of our car. Why are we so tired all the time, we know we got plenty of sleep? Whatever got us there, we finally realize something is wrong with us and ask our Doctor about it.
3. Diagnosis – If you get to this stage you should be grateful to have a Doctor that listens. Quite a few of us are battling other complication, such as obesity and diabetes, and diet is often considered before sleep habits. The cost of diagnosis associated with Obstructive Sleep Apnea (OSA), in this world of HMOs and increasing health care cost, is often the impetus to pursue other avenues of treatment. Fortunately, awareness is growing in the medical community. While not the cause, OSA is being viewed as a contributing factor to many other disorders.
Once you are referred to a specialist, you are then pre-screened to see if an investment should be made in the not so trivial expense of a Sleep Study. It finally hits you, as you step into the Sleep Lab, that you are not just dealing with the latest fad disorder. The procedures the staff employ and the equipment utilized tell you that major research dollars have been expended to address sleep disorders. Being wired for the monitors and the discomfort of trying to sleep in an unfamiliar environment also gives a glimpse that sleep will no longer be the simple act of closing your eyes. As you struggle for unconsciousness you have mixed hopes that nothing will be found or you will have the answer to why you have been living your life in a fog.
If you have a split study you get your answer in the middle of the night, when they come in and give you your first taste of Constant Positive Airway Pressure (CPAP). For others it’s a few days or weeks until they can sit down with their Doctor and go over the results. Yes you have been sleeping, but you are constantly waking up throughout the night without knowing it. There is relief in knowing what you have is very real and is treatable.
4. Frustration – The causes of this are varied and the reason this is called therapy instead of fun. It may start during the period between your study and actual diagnosis. Even though you have been avoiding taking any action for years it is hard to wait for answers once you started on the path for potential recovery. Then it might be the wait until you get your equipment and start treatment. Often feeling more tired than you have ever been, caused by the depression of knowing there is help but you don’t have access to it.
This in turn builds up some expectations that may not jive with reality. Therapy does produce drastic improvement for some immediately, for others improvement is gradual and the benefits are realized over time. We all want an instant cure but the effectiveness is a function of so many things. Ignoring the condition for years and difficulty adjusting to sleeping with a mask are just a couple of things that can play a significant part in our progress.
It is not easy to strap a mask to your face with air pumping up your nose while you are trying to sleep. You wake up during the night and the only difference between that and OSA is you are fully aware of the cause. Sleep is disturbed in either case. Then you have to take into account the necessary humidity of the air being delivered and condensation developing in the hose (Rain Out). Who can be blamed for asking if it worth the struggle?
Then there is the issue where healthcare meets business. Interfaces are developed to the greatest common denominator as the cost of customization is prohibitive. Durable Medical Equipment (DME) providers limit the potential selections to reduce the cost of extensive inventories. Insurances only reimburse for the minimal level of equipment that can provide the necessary therapy to limit their expenses. This all translates down to coping with the least comfortable therapy delivery or expending more out of your own pocket to get something you can live with the rest of your nights.
5. Immersion – Some people would call this obsession. There must be a better way to live with this disorder so we go in search of those answers. Contacting our Doctors, the DMEs and accessing the Internet for any possible scrap of information we can devour. Learning AHI isn’t blue fin tuna but the Apnea Hypopnea Index which is how many disruptive incidents you average per hour (anything over 5 is considered OSA with most of us clocking in 20 or above). Then finding out that these incidents not only disrupt beneficial rest but limit the oxygen our brains require to function.
When you hit this phase you discover the most important thing about our treatment. You are not alone and others are there to share their support and experience. They too are struggling just as you are and they have been gathering the same information you hunger for. All the various masks have been tested by real users. They have equipment set ups that work outside the labs. You discover shoulders to cry on, people to laugh with and the ability to vent with people who face the same struggles.
6. Ownership – After you are diagnosed and the equipment is delivered you are cut loose to deliver your own therapy. It is up to no one but yourself to see that you keep up treatment. There are no physical therapists guiding you every night. The Doctor may have bi-annual visits to see how you are doing but it all falls on your shoulders. Only you can make this work and realizing this you have the most important ingredient for success.
So you take advantage of the support and advice you have found. Pushing for the equipment that will help you cope with this therapy the best way you can. Doing some “Lab-Ratting”, trying all the various modifications others have found useful. You start employing rubber bands, panty hose and various household items to improve the seal of your interface. Finding simple things like attaching your hose to the wall with a hair band (Scrunchy) can allow you to turn over without breaking a seal. You invest in options like a heated humidifier or the Australian Heated Hose to combat Rain Out and consider upgrading to an automatically adjusting CPAP (APAP). Trying anything to make your nights tolerable.
7. Inflation – Maybe you only get a few hours of uninterrupted sleep, but then the periods become longer and longer. The morning fog begins to lift and your day starts the same way as those not suffering from a Sleep Disorder. Energy starts returning along with greater motivation for life. You still struggle, but now you are reaping the benefits you have been seeking.
Your family is sleeping better because their sleep is not disrupted by your snoring. They also get more of you because you have more to give. This isn’t even mentioning extending your life expectancy. The therapy finally transforms from something you can’t live with, to something you can’t live without.
Now I can’t say you won’t be running through some of stages over and over again. The final stage is one that you may find only intermittently. However, there is one thing that is perfectly evident. If you give up and get lost in your denial, or frustration, then the potential reward will be completely lost.
What is Feeling Good? by Perry (used w/ last name). Used with permission.
Posted to http://www.cpaptalk.com on: Sat Dec 24, 2005 10:51 am
"Walking Dead" is where most of us start at. That is how a person with severe OSA problems feels before PAP. You seem to sleep very well - but am always tired, cannot think hardly at all, and can barely function well enough to eat, bathe, do a basic job (with not a good performance), and usually come home to die in front of the TV and sleep (you can sleep at the drop of a hat). Life is no fun at all, and you can be extremely frustrated because you know that something is wrong and you used to be able to do better. Your personal relationships sink to all time lows. You are probably so far out of it that your "other" in life may seek others for intellectual level or intimate companionship so that they can have a life at all (The best time to tell your “other” that you love them or care for them is before someone else tells them – I suggest that you do so daily – starting right now: even if you are not in the “walking dead” zone).
"Basic Treatment" is the next step. In my case this happened first on CPAP, then on AutoCPAP that was set-up totally wrong for me. All the sudden you feel much better. You start to notice that there is more to life than you have been experiencing lately. You now find the energy to do things in the morning you really should have been doing all along like flossing teeth, or some house cleaning. But you still cannot think clearly like you used to, while your job and personal relationships improve a little, you still come home from work exhausted, and retire to the TV or recreational reading because you don't have the mental energy to do anything else.
It is amazing how well you feel compared to before - but you still don't have the energy that you remember (or that you see other people with). Naps are still needed if you are to function at all throughout the day. Often it takes a couple of months – but there comes a point where you know that you are not where you should be.
I will note that most sleep Dr’s are satisfied once a person progresses from Walking Dead to Basic Treatment. They consider you a success, and are not likely to provide much support past this point. My personal experience is that I was better off dealing with a family Dr to move beyond this point as I was dealing with other health issues.
"Advanced Treatment" may follow. Here your feel so tremendously great compared to before. Life starts to be good again; you can see that there is a future (especially in the morning when you get up). Your sleep seems to be under control, you have the opportunity to do things in your job and personal life that you could not even imagine before. Mentally you can start to think of several different things early in a day. But you still feel run down in the afternoon (this must be normal you figure) and look forward to bed each night.
"Mental Zest" is where you want to be, what happens when treatment is really working well for you. All the sudden your mind and life is free again. You typically wake up feeling great, can do multi-tasking of different mental task (which really helps your job and personal life), and have energy all day. Can stay up much of a night if needed - with energy and mental involvement - without major effects on the next day. You can see how to make life great once you solve those problems that accumulated when you weren’t feeling so well (and some of those problems can be major issues to solve). You finally realize that this is what normal life should be. You may recognize at this stage that this is how you felt when you were a teenager. As long as you have a positive attitude about yourself and life - you are ready again to take on the word…
It took me years to get to the Mental Zest stage. I would like to claim that I can stay there. Pollen season knocks me back to the Advanced Treatment, and excessive work hours can easily knock me back to the Basic Treatment Stage (simple exhaustion). Proper diet, nutrition, and exercise are also required to keep you at the Mental Zest stage.
May each of you have a safe and quick journey to “Mental Zest.”
The Seven Stages of CPAP by Mike Moran. Used with permission.
Posted to http://www.cpaptalk.com member forum Wed. Dec. 14, 2005
Since many are new to this therapy I thought I should put together some of the common threads of what we all go through for ourselves and our loved ones. This is also something you might share with your family or friends so they might gain an understanding of what you are dealing with.
1. Denial – This is something we are very good at because we have been practicing it for years. If asked if you snore most will deny it and maybe point their finger at their bed partner. It appears that the louder you snore, the louder your protests. It is embarrassing and no one wants to admit they have problems doing the simple task of sleeping. Images of the Three Stooges and the cartoon characterizations of snoring we grew up with don’t help us in facing a life limiting problem.
2. Realization – For some of us it is when our spouses tell us how scared they get at night when we stop breathing for periods of time. They have gotten used to our rumbling but are now are awakened by our silences and the thought we might not wake up. For others it’s the moments of drowsiness at our desks or even worse at the wheel of our car. Why are we so tired all the time, we know we got plenty of sleep? Whatever got us there, we finally realize something is wrong with us and ask our Doctor about it.
3. Diagnosis – If you get to this stage you should be grateful to have a Doctor that listens. Quite a few of us are battling other complication, such as obesity and diabetes, and diet is often considered before sleep habits. The cost of diagnosis associated with Obstructive Sleep Apnea (OSA), in this world of HMOs and increasing health care cost, is often the impetus to pursue other avenues of treatment. Fortunately, awareness is growing in the medical community. While not the cause, OSA is being viewed as a contributing factor to many other disorders.
Once you are referred to a specialist, you are then pre-screened to see if an investment should be made in the not so trivial expense of a Sleep Study. It finally hits you, as you step into the Sleep Lab, that you are not just dealing with the latest fad disorder. The procedures the staff employ and the equipment utilized tell you that major research dollars have been expended to address sleep disorders. Being wired for the monitors and the discomfort of trying to sleep in an unfamiliar environment also gives a glimpse that sleep will no longer be the simple act of closing your eyes. As you struggle for unconsciousness you have mixed hopes that nothing will be found or you will have the answer to why you have been living your life in a fog.
If you have a split study you get your answer in the middle of the night, when they come in and give you your first taste of Constant Positive Airway Pressure (CPAP). For others it’s a few days or weeks until they can sit down with their Doctor and go over the results. Yes you have been sleeping, but you are constantly waking up throughout the night without knowing it. There is relief in knowing what you have is very real and is treatable.
4. Frustration – The causes of this are varied and the reason this is called therapy instead of fun. It may start during the period between your study and actual diagnosis. Even though you have been avoiding taking any action for years it is hard to wait for answers once you started on the path for potential recovery. Then it might be the wait until you get your equipment and start treatment. Often feeling more tired than you have ever been, caused by the depression of knowing there is help but you don’t have access to it.
This in turn builds up some expectations that may not jive with reality. Therapy does produce drastic improvement for some immediately, for others improvement is gradual and the benefits are realized over time. We all want an instant cure but the effectiveness is a function of so many things. Ignoring the condition for years and difficulty adjusting to sleeping with a mask are just a couple of things that can play a significant part in our progress.
It is not easy to strap a mask to your face with air pumping up your nose while you are trying to sleep. You wake up during the night and the only difference between that and OSA is you are fully aware of the cause. Sleep is disturbed in either case. Then you have to take into account the necessary humidity of the air being delivered and condensation developing in the hose (Rain Out). Who can be blamed for asking if it worth the struggle?
Then there is the issue where healthcare meets business. Interfaces are developed to the greatest common denominator as the cost of customization is prohibitive. Durable Medical Equipment (DME) providers limit the potential selections to reduce the cost of extensive inventories. Insurances only reimburse for the minimal level of equipment that can provide the necessary therapy to limit their expenses. This all translates down to coping with the least comfortable therapy delivery or expending more out of your own pocket to get something you can live with the rest of your nights.
5. Immersion – Some people would call this obsession. There must be a better way to live with this disorder so we go in search of those answers. Contacting our Doctors, the DMEs and accessing the Internet for any possible scrap of information we can devour. Learning AHI isn’t blue fin tuna but the Apnea Hypopnea Index which is how many disruptive incidents you average per hour (anything over 5 is considered OSA with most of us clocking in 20 or above). Then finding out that these incidents not only disrupt beneficial rest but limit the oxygen our brains require to function.
When you hit this phase you discover the most important thing about our treatment. You are not alone and others are there to share their support and experience. They too are struggling just as you are and they have been gathering the same information you hunger for. All the various masks have been tested by real users. They have equipment set ups that work outside the labs. You discover shoulders to cry on, people to laugh with and the ability to vent with people who face the same struggles.
6. Ownership – After you are diagnosed and the equipment is delivered you are cut loose to deliver your own therapy. It is up to no one but yourself to see that you keep up treatment. There are no physical therapists guiding you every night. The Doctor may have bi-annual visits to see how you are doing but it all falls on your shoulders. Only you can make this work and realizing this you have the most important ingredient for success.
So you take advantage of the support and advice you have found. Pushing for the equipment that will help you cope with this therapy the best way you can. Doing some “Lab-Ratting”, trying all the various modifications others have found useful. You start employing rubber bands, panty hose and various household items to improve the seal of your interface. Finding simple things like attaching your hose to the wall with a hair band (Scrunchy) can allow you to turn over without breaking a seal. You invest in options like a heated humidifier or the Australian Heated Hose to combat Rain Out and consider upgrading to an automatically adjusting CPAP (APAP). Trying anything to make your nights tolerable.
7. Inflation – Maybe you only get a few hours of uninterrupted sleep, but then the periods become longer and longer. The morning fog begins to lift and your day starts the same way as those not suffering from a Sleep Disorder. Energy starts returning along with greater motivation for life. You still struggle, but now you are reaping the benefits you have been seeking.
Your family is sleeping better because their sleep is not disrupted by your snoring. They also get more of you because you have more to give. This isn’t even mentioning extending your life expectancy. The therapy finally transforms from something you can’t live with, to something you can’t live without.
Now I can’t say you won’t be running through some of stages over and over again. The final stage is one that you may find only intermittently. However, there is one thing that is perfectly evident. If you give up and get lost in your denial, or frustration, then the potential reward will be completely lost.
What is Feeling Good? by Perry (used w/ last name). Used with permission.
Posted to http://www.cpaptalk.com on: Sat Dec 24, 2005 10:51 am
"Walking Dead" is where most of us start at. That is how a person with severe OSA problems feels before PAP. You seem to sleep very well - but am always tired, cannot think hardly at all, and can barely function well enough to eat, bathe, do a basic job (with not a good performance), and usually come home to die in front of the TV and sleep (you can sleep at the drop of a hat). Life is no fun at all, and you can be extremely frustrated because you know that something is wrong and you used to be able to do better. Your personal relationships sink to all time lows. You are probably so far out of it that your "other" in life may seek others for intellectual level or intimate companionship so that they can have a life at all (The best time to tell your “other” that you love them or care for them is before someone else tells them – I suggest that you do so daily – starting right now: even if you are not in the “walking dead” zone).
"Basic Treatment" is the next step. In my case this happened first on CPAP, then on AutoCPAP that was set-up totally wrong for me. All the sudden you feel much better. You start to notice that there is more to life than you have been experiencing lately. You now find the energy to do things in the morning you really should have been doing all along like flossing teeth, or some house cleaning. But you still cannot think clearly like you used to, while your job and personal relationships improve a little, you still come home from work exhausted, and retire to the TV or recreational reading because you don't have the mental energy to do anything else.
It is amazing how well you feel compared to before - but you still don't have the energy that you remember (or that you see other people with). Naps are still needed if you are to function at all throughout the day. Often it takes a couple of months – but there comes a point where you know that you are not where you should be.
I will note that most sleep Dr’s are satisfied once a person progresses from Walking Dead to Basic Treatment. They consider you a success, and are not likely to provide much support past this point. My personal experience is that I was better off dealing with a family Dr to move beyond this point as I was dealing with other health issues.
"Advanced Treatment" may follow. Here your feel so tremendously great compared to before. Life starts to be good again; you can see that there is a future (especially in the morning when you get up). Your sleep seems to be under control, you have the opportunity to do things in your job and personal life that you could not even imagine before. Mentally you can start to think of several different things early in a day. But you still feel run down in the afternoon (this must be normal you figure) and look forward to bed each night.
"Mental Zest" is where you want to be, what happens when treatment is really working well for you. All the sudden your mind and life is free again. You typically wake up feeling great, can do multi-tasking of different mental task (which really helps your job and personal life), and have energy all day. Can stay up much of a night if needed - with energy and mental involvement - without major effects on the next day. You can see how to make life great once you solve those problems that accumulated when you weren’t feeling so well (and some of those problems can be major issues to solve). You finally realize that this is what normal life should be. You may recognize at this stage that this is how you felt when you were a teenager. As long as you have a positive attitude about yourself and life - you are ready again to take on the word…
It took me years to get to the Mental Zest stage. I would like to claim that I can stay there. Pollen season knocks me back to the Advanced Treatment, and excessive work hours can easily knock me back to the Basic Treatment Stage (simple exhaustion). Proper diet, nutrition, and exercise are also required to keep you at the Mental Zest stage.
May each of you have a safe and quick journey to “Mental Zest.”
_________________
| Mask: Ultra Mirage™ Full Face CPAP Mask with Headgear |
| Additional Comments: SleepZone heated hose, PAPillow, bed wedge, Grossan Hydro-Mate, SnuggleHose, AIEOMed Everest w/ hh, battery pack, DC cord, PadACheek, Headrest pillows |
Mile High Sleeper Gal
Problems cannot be solved at the same level of awareness that created them. - Albert Einstein
Do not wait for leaders; do it alone, person to person. - Mother Teresa
Problems cannot be solved at the same level of awareness that created them. - Albert Einstein
Do not wait for leaders; do it alone, person to person. - Mother Teresa
-
rested gal
- Posts: 12881
- Joined: Thu Sep 09, 2004 10:14 pm
- Location: Tennessee
-
Restless in NM
- Posts: 1
- Joined: Thu Jan 05, 2006 1:39 am
- Location: New Mexico
I wish I had heard this type of information three years ago when I was diagnosed with SOSA. I have had absolutely no support from the experts at the sleep lab and have had to go the trial and error route. I am still searching for the right combination of mask, pillow and routine to make life bearable. The information Mile High Sleeper has provided is 100% more than I have been able to find elsewhere. Thank you.
I have recently learned that in addition to my business partner, his wife and several of our clients also experience sleep apnea. Is it a growing problem or is it just now being recognized?
Thanks again.
I have recently learned that in addition to my business partner, his wife and several of our clients also experience sleep apnea. Is it a growing problem or is it just now being recognized?
Thanks again.
8 posts
• Page 1 of 1