Sleep apnea ABC's

Someone else had posted part of this before. I am posting what they posted and adding to it. Many newbies have found this extremely helpful. I found this on a site called sleepguide and written and posted by someone names Mike. I don't normally copy something like this, but it has and will help so many newbies.

A is for Attitude
The key is that oft-repeated phrase: "whether you think you can, or you think you can't, either way you're right." Sleep Apnea treatment has much to do with attitude. What got me over the hump is realizing that even if it doesn't kill me as fast as cancer or a heart attack would, it slowly would undermine my body and accelerate my path to death, all the while eating away at my quality of life. It's also 100% treatable if the proper treatment is used. Given those two facts, I choose to get serious about treatment. It was as easy as that.

B is for Buying
Tough to hear, but yes, having Sleep Apnea means you will at one point or another have to shell out dough out of your own pocket. We Americans have an attitude that when it comes to maintaining our cars or our lawns, it's normal to pay something to keep these things in good order, but that when it comes to our own bodies and health, someone else, whether it be insurance companies or Medicare, has to foot the bill. Granted, we pay taxes and insurance premiums to cover this stuff, but the hard cold truth is that it won't foot the entire bill. We can agitate for better health care, but in the meantime, we need to take ownership over our lives and pay the difference between what insurance and Medicare will pay and what it will not.

Once we have this consumer mindset toward our own health, we gain more control and can be more proactive. Data capable machines are better to get than dumb black boxes. Auto-adjusting machines give you more options than "straight" machines. The latest mask on the market represents the latest technology in making these things comfortable to use, and will most likely be easier to use than the one that's in your closet not being used because it makes the bridge of your nose sore. You can get all this stuff online, if you're willing and able to fork over the cash.

C is for Collaboration
Getting well with Sleep Apnea is tough to do on your own. The reason is that there's a lot to know, and that there's no "one-size-fits-all" answer to how to make it all work. So you will need to rely on others. The doctor should be your primary collaborator, but for that to be the case you will need a rare type of doctor -- one who's not defensive about what he/she doesn't know, and who will treat someone like yourself (assuming you don't have a medical degree) with an ounce of respect and an open mind. Often doctors can learn a lot about this stuff from their patients, but it's a rare doctor indeed who will try.

Which is why you'll also need to research all you can online, and reach out through forums like this to others who have Sleep Apnea. Even though we don't have medical degrees, the kind of day-to-day stuff you need to know about Sleep Apnea can often be discovered by interacting with other regular people in similar circumstances.

D is for Documentation
Get a copy of your full sleep study and titration reports. Then ask your doctor for, and obtain, as open-ended a prescription for a PAP device and mask as possible -- doctors can write a script for, say, a "ResMed Mirage Micro Nasal Face Mask" (specific), or they can simply write a script for "a mask according to patient's comfort and choice" (open-ended). Make sure they write the latter. Armed with your full sleep report and open-ended prescriptions (which you should keep in a safe place, by the way), you'll give yourself the ability to double check on things and get advice from everyone in the world you trust, including the people on this forum. In other words, you'll give yourself options and control.

Here's a list of the Top 5 Steps you can take to improve your sleep. They're important for people with Sleep Apnea, but apply generally to everyone without Sleep Apnea as well.

Step 1: Be Consistent
Our bodies are set up for consistency. That means going to sleep and waking up at the same time every day, on both weekends and weekdays. This plays into the brain's natural "circadian clock" that regulates our overall physiology. To strengthen this circadian function, we should get in the habit of dimming our lights each night before bedtime, and exposing ourselves to natural light as soon as we wake up. I'm not saying all this is easy to do. I find that avoiding light before bedtime is especially difficult, since even computer screens and television screens emit light that sends an alerting signal to the brain. And I should be spending the first 15 minutes of being awake in the mornings outside, exposed to natural light, which is not a welcoming way to start a chilly day in January. All that being said, these are ideal behaviors that give me something to shoot for.

Step 2: Create a Peaceful Sleep Environment
All the experts agree that the bedroom should be a peaceful place. If your bedroom doubles as your office, you're in trouble. Computers, cell phones and yes, even pets, should be left outside because they all have the potential of interrupting sleep. The bedroom should be quiet, cool and dark. Consider earplugs, blackout curtains, eye shades, white noise and other ways to set the right tone. And make sure you've got a comfy mattress and pillows that haven't exceeded their life expectancy.

Step 3: Leave Stress at the Door, or Better Yet on a Post-It Note
Sleep and stress don't mix. It's important to clear your mind before hopping into bed. One technique that I've used successfully to prevent the mind from racing is to set aside a few minutes before bedtime to worry and think of all the things that need to get done, but that haven't been accomplished. Then get them all down on a Post-it, or a piece of paper, and set it aside. Trust me, it'll be there for you tomorrow.

Step 4: Avoid Food, Nicotine and Alcohol Before Bedtime
Finish eating, drinking and smoking at least 3 hours before bedtime. Each of these activities can lead to poor sleep if done too close to bedtime.

Step 5: Exercise
In general, exercising regularly makes it easier to fall asleep and contributes to the quality of sleep. Like eating, drinking and smoking, though, be sure not to exercise too close to bedtime.

"I thought if you have surgery for sleep apnea, it was supposed to stop snoring...not give it more bass." --- posted recently in an internet forum

Of all the people I have ever spoken to about surgery's ability to cure Sleep Apnea, the most confident about the prospect are the surgeons themselves. Others are more skeptical, including those who have had surgery to cure Sleep Apnea. While it may work for some, below are the top 3 complaints I often hear voiced about surgery.

It's Not Necessarily a Cure
Surgery is deemed a success according to standards adopted by surgeons even if it doesn't cure your Sleep Apnea. If it does so much as reduce the severity of your apnea, it's "successful." That means if you have an AHI of 40, and the surgery cuts it back to 20, the surgeon's happy with the result, even though an AHI greater than 5 isn't considered healthy or normal.

Pain
The recovery time for surgery is painful for adults, and can last weeks. In some cases, all the while you would have to get your nutrition through a syringe, and avoid solid foods. If you're considering surgery, be sure to probe your surgeon about recovery time, and to get a referral to patients who have been through the type of surgery you are considering, so you have the full scoop on what to expect.

Could Cut off Treatment Options
Be sure to check and double-check that the surgery you are considering would not shut off CPAP or other treatment options for you down the road, should you wish to pursue them. Since the surgery does not always cure your Sleep Apnea, you may still need positive airway pressure to stay well after the operation.

My sleep certified physician once let me in on his little secret: he can diagnose Sleep Apnea in a person while sitting across a crowded room from that person in a restaurant. Now, he qualified this by saying that he'd only be able to do so with 85% accuracy, but still... it came as quite a shock to me. Especially when he told me how he'd do it. It wasn't by looking at their waistline or gut. It certainly wasn't from hearing them snore. No, he'd do it just by looking at their jaw. If it were narrow enough, he'd be fairly certain they had sleep apnea. No polysomnography or home test involved. The narrower the jaw structure, he reasoned, the more crowded the airway, and the more likely breathing problems while asleep would occur.

Which dispels one of the myths about Sleep Apnea: that it's a disorder for overweight, middle-aged men. I myself am not overweight (I am 6 feet tall and weigh 179 pounds); and I'm not middle-aged (I just turned 35), but I have Sleep Apnea. My friends who have Sleep Apnea don't fit the mold either. They're my age, and pretty fit.

I think Sleep Apnea is under-diagnosed in people who don't fit the mold. Doctors are all too human, and it's a rare general physician who is on the lookout for Sleep Apnea to begin with. Even when they are educated about Sleep Apnea, they're looking for the "usual suspects" -- overweight, middle-aged men. As the medical profession becomes more educated and aware of Sleep Apnea, this will change. When doctors start approaching fit young women with narrow jaws at restaurants, we'll know the day has come.

Chances are that if you haven't followed up with your doctor in years, or at all, about your CPAP therapy, something isn't quite right in CPAP-Ville. PAP treatment is as much an art as a science, and it requires continuous monitoring and attention, preferably between you and your physician. That said, I'm finding that doctor follow-up is more the exception than the rule. So you the patient must take the initiative. If you haven't seen your doctor in awhile, make an appointment, and start off with these 3 questions:

1. What is my AHI?
AHI stands for "Apnea-Hypopnea Index," and is a measure of the total number of times you stop breathing or have shallow breathing during sleep divided by the total number of hours you were asleep. An AHI of greater than 5 means you are not breathing normally. An AHI of greater than 5 but less than 15 is deemed "mild" sleep apnea; an AHI greater than 15 but less than 30 indicates "moderate" sleep apnea and an AHI of greater than 30 indicates "severe" sleep apnea. So you should of course shoot for an AHI of below 5, which is not always possible, but certainly a worthy goal. If you have an AHI above 5, ask your doctor how he plans to get it down closer to 5.

2. What is my leak rate?
The positive airway pressure your machine provides doesn't do you much good if it's leaking out of your mask and not getting into the airway to do the job it's supposed to: to act as a splint keeping the airway open so you can breathe properly. With this in mind, most machines have been designed to measure the rate at which your mask is leaking. Some mask leak is normal; too much is counter-productive --- the proper mask leak rate varies with your pressure settings and the specific type of mask you own. That said, on all the masks I've had (and I've had many), if the leak rate was above 40, I had a problem. When you ask your doctor what your leak rate is, if it's above 40, ask him what he's planning to do to help you reduce the leakage.

3. Is my pressure appropriate?
The pressure on your machine was prescribed by your doctor when you first had your sleep study done. The sleep study is just one night's worth of data, though, and not a very typical night at that since you were in a strange bed hooked up to a bunch of wire and monitors. How you sleep and use your machine night after night from the comfort of your own bed can therefore be a much better indicator of what your pressure settings should be. Most machines are smart enough to record pressure data. Ask your doctor whether he thinks your pressure settings need to be adjusted based on that data.

Bottom Line
See your physician if it's been awhile and ask these 3 basic questions. If your physician can’t answer these questions, that means one of two things: (i) you’ve got the wrong machine, or (ii) you've got the wrong physician. Either way, something needs to change. You've got the wrong machine if your machine doesn't track this data. How else are you supposed to know how well your treatment is working? You won't --- it's like flying blind. And if you have a good machine, but your physician just isn't knowledgeable enough about the reports it generates to give you the answers, RUN, don't walk, to another physician. There are plenty of docs out there who can give you these answers, and it's pretty basic stuff that you should demand.

Thanks for posting this Gerry. Very informative and yet not too overwhelming for newbies.

Consistency, determination, persistence, and good follow up are the key. I agree with the OP, and advise any newbie to be patient, persistent, and have a sense of humor.

GerryK,

A good thoughtful set of points

Excellent

DSM

It's good for all of us to review once in a while. Newbies veterans and those of us in between. Sometimes we forget and get off track.

Gerry