Working outline and manuscript

1 Month to Make CPAP Your Friend

By

Amy Korn-Reavis

Introduction

Your PAP machine arrives maybe delivered by a person, or maybe you went to pick it up at an office or maybe you received a box in the mail.  No matter how you got the machine you now need it to sleep every night.  It is different and awkward and maybe even a little confusing.  The one thing I can guarantee is that if you go into this experience with an open mind and a positive attitude you will be more likely to succeed and feel better than the average person.

The problem is that you are never given a plan on how to add this device to your life.  You are told to put it on and go to sleep.  There are some people that can put the machine on and go right to sleep and I wish I could make it that easy for everyone but different people need different help.  So for those who cannot fall asleep the first night there are steps that you can take to learn to make your new machine your friend.  

These steps come from my years of experience in respiratory therapy and sleep.  I have worked with patients of all different ages and backgrounds who are trying their CPAP for the first time.  Over the years I have found that there are certain things that can be done to help people be successful at long term use of their machine.  Since I can not go to every one’s house I thought I would share this knowledge in this book with you.  

Not every step is for every person and some people may find that they will need to solve different problems sooner than they are covered so please hop around and look ahead. I arranged the book to solve issues in the order they usually occur in.  

Remember there are people you can also turn to for help if you need it.  You can call the company who set up your machine for you.  You can also talk to the doctor who ordered the machine as well.  There may be certain times that the best solution is to go back to the doctor so you can have changes made to your machine or mask.  

Table of Content

Day 1   Meet your Machine

Day 2   Learning your Mask

Day 3   Why you need a humidifier

Day 4   Ramp is your friend

Day 5   How to clean my equipment

Day 6   What my sleep study means

Day 7   Your first week

Day 8   Where do I put this machine

Day 9   How often do I need to use this machine

Day 10  Ouch this mask is hurting my face

Day 11 Congestion, burping, gas and other side effects

Day 12 Nightmares and your CPAP

Day 13 Compliance and why it is important

Day 14 Your second week

Day 15 Making your bedroom sleep friendly

Day 16 Are you sleeping long enough

Day 17 Exercise can help you sleep

Day 18 The effects of light on sleep

Day 19 What is sleep hygiene

Day 20 Your bed partner and the issues CPAP can cause

Day 21 Your third week

Day 22 Traveling with your CPAP

Day 23 Over the counter sleep aides

Day 24 Prescription sleep aides

Day 25 I am snoring

Day 26 I have lost weight now what

Day 27 Supplies; when do I need to replace everything

Day 28 Your fourth week and beyond

Day 1: Meet Your Machine

There are many machines out there of all shapes and sizes.  There are some basics that you should know about the machine.  There are also some steps you should take to help make your life easier while on your CPAP.  

When your machine was set up, the company should have given you several pieces of paperwork.  One is your instruction book.  You should take the time to review the book.  They should also have given you contact information if you need anything from them.  If they did not put a sticker on your machine you should take the time to put a label on your machine with this information.  The papers they gave you may get lost but if there is every a problem with your machine or your mask you will need to contact that company to take care of the problem.  Many times your doctor will not have documented what company set up your machine so you really need to solve this issue.  

You should also document the pressure of your machine.  Many machines will show you what pressure you are on when you turn the machine on.  However some of the machines on the market do not do this.  If it does not take a label maker and mark it on there.  

The other thing you want to put on your machine is the contact information for the company that supplied the machine.  This is important for two reasons, you want this information two weeks from now and two years from now so if you need supplies, need a change in pressure or need to get the machine  repaired you can easily find a contact number.  You also want it available if you travel.  If there is a time when your machine does not work it will be while you are on vacation and most companies have agreements with local companies to assist you.

Now that you have prepped your machine for anything you may need in the future let’s take a tour of the machine.  There are three basic controls

  1. The on off switch.  This should be well marked or it will be the only button on the machine.  It is usually bigger than the other buttons so you can find it even in the dark.
  2. The ramp button.  Most machines have a ramp button that allows you to decrease the pressure for a short period of time usually between 15 and 20 minutes so you can fall asleep. If you are on a low pressure of between 5cwp and 8cwp there is a good chance that the ramp is not set up since it starts at 5cwp.
  3. The humidifier control.   In some machines it is on the machine on others it is part of the humidifier.  No matter where it is you should know how to adjust it because there is a good chance you will need different levels of humidity depending on the time of year.  

Once you have learned how to use your machine I recommend that you try wearing it while watching television for at least 30 minutes.  You can sit up in your living room, in your recliner, or sitting in bed.  I just want you to be relaxed and get used to the feeling of having the CPAP on.  There are certain sensations that some experience when they first wear their CPAP;

  • Ear Popping
  • A sensation like you are not breathing
  • A feeling of breathlessness
  • A feeling of relaxation and fatigue

Whatever the feeling it is all normal because everyone has a very different experience.  Some people put it on and are able to go right to sleep others put it on and it takes them some time to get used to it.  Remember you are an individual and whatever your experience it is important to be patient with yourself and allow yourself this time to adjust.  This is long term therapy and the goal is to be able to sleep every night with it and to feel better.  

Day 2: Learn About Your Mask

You used your machine yesterday and got to know its basic controls now it is time to meet the most important part of the PAP experience, your mask.  All the interfaces tend to be called masks.  They come in all shapes and sizes and there is no such thing as the perfect mask.  There is just the mask that works best for you.  You might need a mask that hardly touches your face or you might need a mask that covers most of your face.  It depends on so many things that I would never recommend a mask to a patient have not met.  

I can tell you that there are some hard and fast rules that may help to decide which mask you use.  

  • Certain insurance companies will only pay for certain masks.  This is especially true of patients who are on a managed care insurance plan.
  • If you have issues with your nose and are unable to move air while breathing through it than you are not a good candidate for a mask that does not allow you to breathe through your mouth.
  • If you do not have teeth than some full face masks do not work well for you.
  • The mask you used during your sleep study may have worked that one night but it might not be the best mask for you over the long term.

There are some things you should know.  During the first thirty days you have your machine the DME company that set up your machine can change your mask at no cost to you.  They may not want to, but r the goal is for you to be comfortable.  At the sleep lab you are there for 1 night and as a therapist we cannot tell if you will develop issues with the mask.  Communication is the key.

Day 3: Why You Need a Humidifier

Let me say this as best I can, humidity is your friend.  It can be the biggest comfort measure you take.  It will most likely solve most of the side affects you could experience from swallowing air to the dry mouth and nose to sinus pain.  

You may think that since you have a humidifier in your house that the air would have enough humidity.  This just is not the case.   The machine does not provide humidified air.  The air that it gives you is pressurized and quite dry.  This causes issues including swelling of the nose and sinuses that can lead to mouth breathing and air swallowing.  It can also cause dry eyes and skin that is caused from the mask not sealing properly.  

The new humidifier are able to take into account the relative humidity and room temperature and create enough humidity without causing rain out or excessive water in the tubing and mask.  If you do not have one of the newer humidifiers you can help to reduce the issue of rainout by creating a sleeve for the tubing.  You can also keep the tubing under your blanket so it is not affected by the room temperature if you keep your room particularly cold.  

Most people are told to set their humidifier at 2.  This is usually too low and then wonder why they have a dry, stuffy nose and dry mouth.  I never have anyone set it lower than 3 and I tell them to turn it up if they have any issues at all.  

The five rules you need to know about your humidifier

  1. Always use distilled water because you never know what is in the tap water.  You only want to inhale clean air and humidity.  
  2. Change your water every day.
  3. You need to disinfect your chamber at least 1 time a week.  I use 1 part white vinegar and three parts water.  Wash the humidifier with soap and water, rinse it very well, than soak it for 20 minutes in the vinegar solution, again rinse very well ( you do not want your machine to smell like a salad all week) and place on a clean dry towel to dry.  
  4. Do not add Vicks or scents to your humidifier.
  5. If you are not using your machine the humidifier will not use up the water.

The problems that people find by using a humidifier can usually be fixed.  

If you have rain out than you can turn down the temperature a little bit or try creating that sleeve I suggested. If that does not work than you can ask about a heated tube.

If you feel you are not getting enough humidity than talk to your doctor about ordering the heated tubing.  Some people have issues with nasal congestion due to drying and need extra humidity and the heated hose is great for that issue.    

Day 4: Ramp Is Your Friend

There are actually a couple of setting that are created for you to be more comfortable.  This includes RAMP, CFLEX, ERP, Smartflex, and Sensawake.  Basically each brand of machine has different programs to help you.  

Most machines do have a RAMP feature.  If it does it allows you to start at a low pressure and slowly over a set period of time the pressure will increase to the final pressure.  The time and beginning pressure is usually based on your titration study.  In some cases you can control how long the ramp can take.  After you have been on the CPAP for a while you may not need to use the ramp anymore but not everyone stops using it.  

The other settings are also comfort settings.  Sensawake the machine is able to sense your waking up and automatically decreases the pressure until you fall back to sleep.  This can be good for the person who is very sensitive to pressure or who is claustrophobic.

CFLEX and ERP are settings that allow the machine to give you a breath that is more natural.  As we breathe we tend to have a lower flow as we reach the end of our inhale.  As a machine a PAP machine does not naturally do that.  These settings allow the machine to have that slowing down happy based on it monitoring your breath and its pressure.  Ultimately it should be more comfortable and help reduce issues such as ear pressure and swallowing of air.

Day 5: Cleanliness is next to healthiness

One of the most important parts of care for your machine is to make sure everything is clean. There are not as many things to clean as you think but if you do not keep each piece is in good condition you could develop side effects that will interfere with using your equipment.

Let’s start with filters.  Most machines do have a filter at the air inlet.  There may even be two filters.  Usually the first filter is a non-disposable gross particle filter.  This takes all large particles out of the air so you do not inhale them.  Usually these filters are rinsed out once a week and disposed of once every three months.  The second filter is a fine particle filter.  This is usually a disposable filter that you replace once a month.  If you live in an area with a great deal of dust or pollen then it is recommended that you use this filter.  The company that supplied the machine to you should be able to send you new filters every three months.  

Your mask is actually the most important and most troublesome part of your equipment.  You will need to make sure you clean your mask every day.  Use soap and water on it.  Make sure you use a soap that is gentle to your face.   A deodorant soap or Castile soap can be too harsh and will give you ring around the face.  If you do not clean it every day the oil buildup will cause you to break out and no one wants acne if they can avoid it.  Once a week or if you have a cold you may want to disinfect your mask.  I suggest you use white vinegar and water in a 1 part vinegar to three parts water ratio.  Wash your mask as usual then rinse it well, soak it in the mixture for 20 minutes, then rinse it will or you will smell salad dressing all week.  Allow your mask to air dry on a towel.  If you do this once a week you will find that your equipment will be fresh and you are less likely to have issues later on.  

Your hose and humidifier should also be disinfected once a week with the vinegar and water.  Keeping everything clean and as free from germs as possible will allow you to use your equipment with less interruption.

It is always important not to towel dry your equipment because you do not want to inhale lint if at all possible.  

Day 6: Understanding Your Sleep Study

You went through the test and I hope that someone reviewed it with you.  I also hope you asked for a copy of the test.  I believe it is always important to have a copy because you may need it.  If you go to a specialist they may want a copy.  Also if you are going to have surgery you will probably need it as well as your machine.  

If they did not go over the study there are definitely some basics for you to understand.  The first thing is that it was written for other doctors so there is a lot of information about how the test was performed and that really does not contribute to your knowledge of your sleep disorder.  The second big thing is that there is a difference between a home apnea test and an in facility test and what information will be given to you.  

When looking at a home apnea test there is significantly less information but it will be able to tell you the basics.  It will tell you your oxygen level, your heart rate, how many respiratory events you had and if you snore.  They may be able to tell what position you slept in or whether you were awake or asleep based on some limited Actigraphy or movement measurement or possibly from limited brainwaves.  What you want to look for is the number of respiratory events usually labeled AHI or Apnea/Hypopnea Index.  An apnea is a complete obstruction of airway so there is no air movements and a hypopneas is a partial blockage that is severe enough to cause your oxygen levels in your blood to decrease by at least 4%.  

An in facility sleep test will tell you the same as above plus you will be able to have many other things monitored such as the stages and quality of your sleep, your leg movements, whether you grind your teeth.  It will also allow the technician to monitor your talking, movements and what you do during different stages of sleep.  The ability to see if you have other sleep issues cannot be done at home.    

Periodic limb movements is scored by looking not just at the leg movements but if they come in series and if they cause you to arouse from sleep.  Usually these issues occur during the beginning of the night and improve as the night goes on.  If they cause significant disruption in sleep then your doctor might suggest a medication to help you.  

Snoring is also monitored for amount and loudness.  When you are being tested on a CPAP the technician will adjust the pressure so that snoring is minimized during the night.

CPAP therapy is also monitored during the night.  The technician adjusts the pressure to correct your sleep apnea and help you to sleep soundly during the night.  The technician may adjust the pressure higher than your doctor orders your machine to be set at.  This is not unusual many times you will actually sleep better at a lower pressure even though there might be a slight snoring noted.

All the information will be included on the study and you should keep a copy of it for future reference.  Many times if you change doctors or go to a specialist they will want a copy of the test.

Day 7:  What you can do to acclimate to your machine

You now have a machine and you know you need to wear it but what happens when you put it on and all you do is stare at the ceiling?  Well the idea is for you to sleep in it but getting used to the feeling of the air can be a little challenging.  Many of the people I have worked with are extremely motivated and that is why they are successful.  The other reason is because we work on desensitizing them.  

The first thing I have many people do in the lab and when I worked with them at home doing home care was to try wearing the mask during the day.  We would start with 30 minutes while watching television.  Usually the ability to be distracted by the television while wearing the mask would help start the processes.  We would then slowly increase the amount of time they would wear the mask to 2 hours.  Once you have reached 2 hours you will find that you can be quite comfortable and should be able to lie down and go to sleep.  

The next thing we would do is relaxation techniques to help relax if they were stressed.  I would usually start with progressive relaxation.  It is easy enough to do and would usually start at the toes and move up to the face.  You would tighten whatever part of the body you are focusing on for the count of 10 then relax that same part of the body.  So it would be tighten your toes for 10 seconds, really tight, as tight as you possibly can than you relax for 10 seconds, next move on to your feet, than your ankles, your calves, and your thighs and so on until you reach your face.  Usually by then you are feeling more relaxed.  

If this did not work we would try diaphragmatic breathing.  You will take a deep breath in while dropping your diaphragm and pushing out your belly, than you take a deep breath in pulling your belly in and exhaling all the air in your lungs.  Each stage is done slowly to a count of 6-8 for the inhale, hold for the count of 2 then exhale for 6-8.  You get so busy concentrating on your breathing that you usually can relax with the mask on.  

If that does not work you might want to talk to the DME company about changing masks.   In the the point is for you to be successful and those of us in the profession are here to help you.  But we do not know if you need help unless you ask.