An Open Letter to Cpap Newbies

[Sleepy Taz]

The first night with a Cpap can be frustrating and for some even scary. The thought of wearing a mask and having air blowing on your face will seem to be a stupid idea and many will find every excuse in the book to fail. Others will not allow themselves to relax enough to fall asleep and give up. The main reason for this is a lack of education on the usage of Cpap and the consequences of non-compliance. Other problems arise from the state of you alertness and your ability to think clearly. This will not improve until you have been on Cpap, and for some this could take a little while.
Sleep Apnea will put excessive stress on your heart and affect all of your vital organs in an adverse way and shouldn’t be ignored. Some people will put on that superman suit and say that they will not be affected, but in the end their quality of life will slowly denigrate to a level where going walking will be the biggest thing in their life, and for some a stroke or heart attack will end their life prematurely. These things will happen without therapy and should provide the incentive to seek whatever help is needed to succeed in the use of Cpap.
Twenty-one years ago I was diagnosed with severe OSA. My blood oxygen levels were so low that the tech was concerned that I might have a stroke and put me on therapy less that two hours into the sleep study. When I awakened in the morning I was more refreshed than I could remember and had my first day in a long time where I could function. It took a week to get my machine and I was real happy to have it. The tech came to my house, gave me a mask and a machine and said goodbye. There were many nights of struggling but never once did I give up as I remembered how I felt that first morning after the sleep study. I was only 32 at the time and am sure that without therapy never would have reached 35.
There are a couple of things that are probably most important about therapy:
1) Attitude; Stay positive and look for answers not excuses
2) Find the right mask; this is more important than any of the equipment you use because if you are not comfortable sleeping will be difficult!
3) Seek advice; this forum is a great place or an Awake group.
4) Never sleep without the Cpap; even one time could put enough stress for a stroke or heart attack. I know this from personal experience as my 48 year old sister died from a massive stroke. Her doctor told me if she used her Cpap regularly it might have prevented the stroke.
5) Educate yourself; learn as much as you can so that you will have the answer to every problem that comes up.
Lastly, for all of us this isn’t the end, it is a beginning. My Cpap allows me to get recuperative sleep every day so that I can function as a human being and even after 21 years there are no side effects from therapy. Move away from despair towards hope and with a positive outlook and the outstanding support provided by this forum take charge of your life and never give up!!!

Good luck!!

"I can't do anything about the past. I have no idea what will happen tomorrow. What matters is the present. And, just in case tomorrow should never come, I'm going to use the present as constructively as I can."

[Autopapdude]

AMEN---agree completely!!!!

[PST]

4) Never sleep without the Cpap; even one time could put enough stress for a stroke or heart attack.

I would like to know more about the evidence for or against this statement. I want to raise this question in a positive way, because it makes a difference in how far we need to go to avoid a situation in which we may have to do without CPAP temporarily. I am thoroughly convinced of the value of CPAP therapy, and I haven't missed a night since the first week. I wear the mask religiously, and I intend to keep on doing so. However, I don't have a back-up machine. I don't have an uninterruptible power supply. I don't have a portable machine in case I doze off on a plane. I don't keep an extra machine in the office in case I have to pull an all-nighter and might want to nap. In other words, I take CPAP very seriously, but I don't treat the possibility of falling asleep without it as a life-threatening emergency. Is there medical research that shows this to be a mistake?

By way of analogy, I take Lipitor for high cholesterol. I know it's bad for me to forget, but I don't worry about dying that day if I do. I just take it the next day and try to improve my systems for reminding myself. On the other hand, I couldn't risk that kind of medication lapse if I were a type I diabetic. So, is CPAP like insulin or is it like Lipitor? Is there research out there that tells us? Does missing one night actually present a realistic risk of dying that night? It makes a big difference in what precautions a rational person should take. No doctor has ever told me that missing one night could kill me.

[BlackSpinner]

I would like to know more about the evidence for or against this statement. I want to raise this question in a positive way, because it makes a difference in how far we need to go to avoid a situation in which we may have to do without CPAP temporarily.

My O2 levels drop to 56% during an event. That is stroke danger zone. Doesn't mater if I use cpap for 8 hours a night. If I nap my O2 level drop like a brick without it. It is not at all like cholesterol, more like not taking your insulin as a diabetic like my mother - she would be dead real quick or my dad taking his pacemaker out for a day or two.

[Sleepy Taz]

PST,

Every time you sleep without your Cpap you are putting undo stress on your body. From this stress there is the chance that your heart may be at the breaking point and a heart attack could occur. Even worse would be a stroke that if it didn't kill you could leave you paralyzed and maybe lose brain functions. There is also the chance that this will not occur. If you choose to sleep without the Cpap than you are betting on the latter. Even if you do not have a problem time and again, all it takes is the one time like it was for my sister. There is about a 90% chance that she would still be alive if she had been compliant. Many people give up on therapy because they are unaware of the consequences or the severity of their actions of quitting.

[timbalionguy]

Taz,
I wonder if there is something hereditary in your family that predisposes you to OSA, and then deep O2 desat during apneas.
You said in your initial post that if your sister had used her CPAP regularly she probably wouldn't have had the stroke. How compliant was she?
I try very hard not to sleep without the machine. But I do end up taking unexpected naps, especially when working at the computer. I try and make sure I am sitting up at those times. Even so, I know I have apneas even sitting up.
I have taken a number of trips now with CPAP, including one by air. I have also camped with my machine, all with 100 percent compliance and good results.
The long-term budget calls for getting a backup machine, but only after determining that the machine I have presently is providing adequate therapy. I am having a number of issues that suggest I need a machine with a more complex algorithm, like a BiPAP.

[rested gal]

Excellent post, Taz.

Being the big believer in "comfort" that I am, I agree sooooo much with this point:

2) Find the right mask; this is more important than any of the equipment you use because if you are not comfortable sleeping will be difficult!

[Sleepy Taz]

Timba,

After careful consideration on your point I have a couple of thoughts. Yes for those whose blood oxygen level goes extremely low there is a greater risk, but there is still a risk for anyone who has apneas. My sister would use here Cpap Monday through Friday and most weekends would visit our aunt without it. She did this for a few years until the last time when her system couldn’t take it any more. She reached her limit and it may take others longer or even a shorter period depending on how long they went undiagnosed, how strong they were, and how often they skipped therapy. It may never happen, but for me I wouldn’t want my 14 year old daughter or my wife to have to deal with my death or worse being incapacitated just because I didn’t use my Cpap. As for a backup, most DME’s have a loaner program if you need to have yours fixed and as far as a backup I have seen many posts of people with equipment to sell, many of which can be had real cheep.

Rested Gal,

Thanks, many people give up because of the discomfort and do not realize that there are soo many options.

[tonytexas]

Thanks, Taz.......for thinking about us the newbies...

[SleepyT]

Taz...dang! Some days I sort of look like your avatar! Thanks for your thoughts for newbies. It's great advice and I don't disagree with any of it.