CPAP Newbie
CPAP Newbie When you are new to CPAP a lot of questions and concerns come up. Most deal with getting used to treatment. Many have come before you and have been successful in treating their Sleep Apnea. They impart their wisdom for you here.
Contents
Get Started with CPAP and Treat Sleep Apnea
Welcome to this community of CPAP users. Information and support are necessary for effective treatment, and CPAPtalk and its extension CPAPwiki had both in abundance.
First things first: Use your words. Check out the CPAP Definitions section available on the Sidebar to familiarize yourself with important terms used in the Sleep Community and by your doctor and DME.
How Long Until I Feel Better?
Adjusting to CPAP as a New User
Tips for New Users
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 xPAP (CPAP, AutoPAP, BiPAP) machine, you are the one who makes care and treatment successful. A well-meaning technician 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 Care 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.
Read the remaining tips here: Tips_for_Newcomers_to_Sleep_Apnea
Tips for Wearing a Mask and Using CPAP for the First Time
• 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.===Sleep Lab Posts=== Discussion threads:
• Soak your mask in warm soapy water from 30-60 minutes to soften up your mask.
http://www.cpaptalk.com/viewtopic/t14035/Cheap-Sleep-Apnea-Screening-Diagnosis-and-Auto-CPAP-Rx.html
http://www.cpaptalk.com/viewtopic/t14578/At-Home-Obstructive-Sleep-Apnea-Screener-Now-Available.html
Comments from a SleepStrip engineer: http://www.cpaptalk.com/viewtopic.php?t=14035&postdays=0&postorder=asc&start=15=Sleep Symptoms=
List of CPAP Essentials
by: karlchrisb, CPAPtalk member
Here's what I have that would possibly make someone else's life easier if they had these things (ALTHOUGH, if you don't it's no big deal if you're getting along fine without them!):
1) A hose snuggle - AKA Tube Cover. It helps cut down "rain" in your tube if you use humidification. You can get them in different colors and patterns. If you can afford the Australian-made heated tubing, go for it, but, a cover is a little cheaper and much more fashion-savvy. Buy them anywhere CPAP supplies are sold. TIP: Follow the directions and use the bag the cover comes in over the end of the tube to help it slip through the cover. It will save you HOURS of frustration.
Read the remaining essentials here List of CPAP Essentials
Keeping the Mask On at Night
Do you take the mask off in the middle of the night and not realize it until the next morning? This is common. Most everyone will have done this at one time or another. Not to worry unless you are doing it every night and not getting the therapy you need. Some people have resorted to taping the mask to the skin so that the discomfort of removing the tape when mask comes off will wake them and thus break the mask removal cycle. Others have resorted to putting something like socks or mittens on there hands to make mask removal difficult. Eventually you will start welcoming the mask and your mind will stop wanting to remove it and the nightly mask removing will cease or become very infrequent.
Protection from Painful Wear and Tear on your Face
Mental and Physical Stages of CPAP
Seven Stages of CPAP
originally posted by Mike Moran:
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
2. Realization
3. Diagnosis
4. Frustration
5. Immersion
6. Ownership
7. Inflation
For the Full Article, read: Seven Stages of CPAP
What is Feeling Good?
originally posted by Perry Holzman
Many CPAP users report that as treatment continues they begin to remember what feeling good is like. In this article, 4 stages of mental and emotional states are explored.
1. Walking Dead
2. Basic Treatment
3. Advanved Treatment
4. Mental Zest
Read the full article here: What is Feeling Good?
CPAP Adaption Stages
originally posted by Mile High Sleeper
Getting to the point where CPAP treatment is comfortable and tolerable takes practice and experimentation. In this article, gain motivation, resources and ideas to get past the struggle and into a good night's sleep.
Read the full article here: CPAP Adaptation Stages
Learn From Others' Experiences
Sleep Diary
originally posted by Mile High Sleeper
When I was first diagnosed, I found this forum (cpaptalk.com) invaluable and it helped me a great deal to learn from the experiences and support of others. Without the advice so freely given I'm sure I would have found it even harder to cope. Thanks to you all. I kept a diary for the first few weeks and glanced back at it today. I'm now in week 10 and really beginning to feel the benefit, so the fear, uncertainty and discomfort of the first few weeks is becoming a more distant memory every day.
I thought it might give others some hope & encouragement if they could see a few extracts from my diary.
Read the full article here: Diary of Two Hoseheads
Add your own Sleep Diary
Thoughts on Improvement
originally posted by birdshell
As I was driving to my aunt and uncle's home for Thanksgiving, it occurred to me that my efforts to get there had changed greatly. I have other medical conditions that have been treated (finally) before I started CPAP 8 months ago. Those treatments definitely helped, but still left me tired, lacking energy, sleeping 12-14 hours a day, and NOT living the life I would choose...
Read the full article here: Thoughts on Improvement
Social and Psychological Factors in SBD Recovery
originally posted by Mile High Sleeper
“I realized that I had a handicap rather than a moral defect. Finally, I could stop criticizing myself for not meeting social and personal standards of behavior.”
Sleep apnea patient Jerry Halberstadt, Sleep Apnea – The Phantom of the Night, p. 154
Just as we’re all different in our physical conditions, we’re all unique in our psychological nature and approach to life. Listed below are a few personal issues related to sleep disordered breathing (SBD) and CPAP treatment that can come up, not even including equipment issues. If you have a family member or friend who is not very supportive of your condition and CPAP therapy, perhaps discussing some of these items will increase their awareness and understanding...
Read the full article here: Social and Psychological Factors in SBD Recovery
Your First Night
by Matt
If you're new to CPAP, like I am, you've never slept with so much stuff connected to your face.
When you went for your sleep study they hooked you up to all kinds of machines, and if you took your mask off they came in and put it back on. At home you don't have this luxury.
As obnoxious as it seems (high level) turn on the "Mask Off/High Leak" alarm. I took off my mask 4 times the first night I used my CPAP, and within 5 minutes it woke me up, I put the mask back on, and went right back to sleep.
I'm not an expert, although I play one on TV (haha jk) but the key to long term compliance may be getting a good start.
If I left the alarm off I would have taken off my mask once and slept with the mask off all night.
I will certainly be keeping this alarm on, forever, yes, being woken up by an alarm every 4 hours for 3 minutes is annoying, but if it means I get non OSA sleep, I'm willing to sacrifice!
Thanks for listening!
Partners and CPAP
Single CPAP users and Partners
Why tell your partner about CPAP treatment?
Partnered CPAP Users
What will CPAP do to our Sex Life?
I'm going to answer this as a 40 year old who still feels like she is in her 20's and her old self again since starting CPAP.
When I got diagnosed this last year it was like I was hit in the stomach. My foggy brain could not wrap my head around it. I didn't sleep much but when I did sleep, I felt it was reasonably restful. (I have severe OSA) Regardless of this, I was in denial and I was angry. I searched for a "surgical cure", hellbent that I would not live my life attached to a hose and a machine.
Things that went through my brain. (some rational, some not, but all valid as that is what I FELT at the time)
I've lasted this long without it, who needs it, really? My husband is going to think I'm ugly Our sex life is going to take a nose dive (not that it already hadn't because I was so tired all the time) What about my freedom and spontaneity? What if I feel like taking off for a weekend? Travel? who wants to travel with this. My husband is going to think I'm ugly I'm no longer going to be attractive My husband is going to think I'm ugly What if my husband dies, how will I attract a new partner with this thing attached to my face at night? (I said not all my thoughts were rational) I'm no longer going to be attractive.
Catching a theme here? Yes it is vain, yes it is selfish and childish, but they were still real feelings. So much of my self worth has been based on image and appearance that it was a natural place to go. It took me years and years to be comfortable in my appearance and be proud of how I looked. When you get to that point after spending half your life thinking your ugly, it doesn't take much to knock you back down.
Funny thing happened. The more I researched the more I realized there was no cure. I voiced my concern to my husband about feeling ugly and feeling like he would leave me because of that. While he said it would never change how he felt, I still had my doubts.
Then the machine came in. Know what happened? I slept for the first time in at least two decades. I slept for a month. I feel 20 years younger, and I'm back to me again. I have more energy to do the million things I need to do in a day, and I don't drop into bed at night. Our sex life not only did not suffer, It improved significantly. No planning for intimacy. It just happens, whether I'm masked up or not. We talk more than we ever have. I usually am awake longer than he is so when the conversation dies down and he is drifting, I put on the mask then. I've learned how to talk with the mask on (a little bit, it's weird but I can do it).
All those irrational fears I had and all the silliness in my own head around being attractive/ugly, etc was put to rest.
Reality is. If your partner loves you (for all the right reasons and not just the exterior shell), nothing is going to change the way they feel.
While I'm still not enamoured with the thought of living the rest of my life with this thing attached to my face at night, it's no biggie if I am. The real me is back, and stronger than ever. That person my husband fell in love with nearly 20 years ago is back. Not grumpy, not tired. Looking back I'm shocked he has put up with me the last few years I've been so miserable.
Quiet Equipment
IntelliPAP Auto Adjust CPAP Machine wins Product Challenge 8 against the M Series Auto with AFLEX due to its quietness. The result of the Product Challenge proves the noise level of the machine makes a tremendous difference in the effectiveness of CPAP treatment. Product Challenge participants had this to say about the IntelliPAP Auto Adjust:
"By far the quietest of any machine I've ever used, the intellipap is barely audible. This is a great machine for anyone whose sleeping companion complains about the sound the machine makes. My partner didnt even know the machine was on the first night." - Marc K.
"VERY quiet operation. Surprising how much of a difference this makes for a comfortable sleeping environment." - Philip B.
"This is an extremely quiet machine. You definitely wouldn't be keeping someone awake." - Margaret W.
Feeling Low?
Don't Give Up!
originally posted by Rhoda
So you've been sentenced to "life" with CPAP and after a week or so you're still wresting with doubts that you want to continue. GET SERIOUS! Did you listen when the doctor, therapist and CPAP supplier told you why you need CPAP? OK so maybe it was only the doctor who told you. Therapists and CPAP equipment suppliers will eventually learn that they all need to reinforce "why" you need CPAP.
Being hooked up to a CPAP machine is not as convenient or comfortable as not being hooked up, although great strides will continue to be made in every possible area of patient comfort. But there is much more at stake than simply your comfort and convenience...
Read the full article here: Don't Give Up!
Sleep Apnea Activism and Patient Education
AWAKE Meeting Workshop
Mile High Sleeper AWAKE Meeting Workshop Design/Peer Coaching (Mile High Sleeper) (Sleep Apnea Activism and Patient Education ) AWAKE Group Workshop for CPAP Treatment Education
Designed by Mile High Sleeper, MHRD (Master in Human Resource Development, Adult Experiential Learning) Permission is granted to use this design for nonprofit sleep apnea patient education. Participants: people with obstructive sleep apnea on CPAP therapy, their family/friends, healthcare professionals Required length: 2 hours
Title: Tips for New and Veteran CPAP Users or Peer Coaching Resources to Get Smart Fast – If I Only Knew Then What I Know Now
Meeting objectives:
1. Patient/family/friend participation in a non-threatening manner 2. Information exchange about CPAP therapy for obstructive sleep apnea
Read the whole article here AWAKE Meeting Minutes
CPAPtalk links
started by drbandage For ideas on how to alert others to the dangers of sleep apnea, and help inform heathcare professionals, see the discussion threads started by a hosehead MD:
http://www.cpaptalk.com/viewtopic/t16617/What-lies-ahead--And-what-to-do-about-it.html
http://www.cpaptalk.com/viewtopic/t16751/New-version-of-Free-Money-Come-and-Get-It.html