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CPAP Newbie FAQ Draft 2 (long)

Posted by TeleBlaster on July 24, 2001 at 13:59:40:

Hey! I finally updated my Newbie CPAP FAQ! Check it out and let me know what you think!

So, you've got yourself a CPAP/BiPAP/AutoPAP machine!

Well, there is a significant adjustment period necessary to get going with your treatment. Below are some of the more common experiences reported by our readers.

1. Sleepless nights. Let's face it, you've never tried to sleep with a Darth Vader mask forcing air up your nose before, except during your sleep study. It is normal to have difficulty sleeping the first few nights with your machine. Instead of pressuring yourself to sleep with it, try to simply relax with the machine on. If you can learn to relax with it, you can learn to sleep with it. Try some relaxation exercises like imagery or progressive muscle relaxation. You may also try wearing the mask well before lying down to go to sleep, while watching TV or reading. Many machines have a "ramp" feature which starts you off at a lower pressure and gradually increases to your prescribed pressure. This can help acclimate you to breathing with the machine. Some folks assist their adjustment with medications: Benadryl or other antihistamines can make you drowsy, others swear by Ambien (a prescription-only sleeping pill). It is probably smart to use medications only for the first few nights, rather than to rely on them to get you to sleep on a regular basis, as some medications can worsen the symptoms of apnea.

2. Nose sores. When you start wearing glasses, it is normal to get a bit of a sore on your nose where the glasses rest, even though the glasses are light and don't put much pressure there. Same with your mask. To adjust, some people use moleskin, tape (micropore paper tape, athletic tape, etc.), or even band-aids to help decrease the pressure on your nose until it toughens up a bit. My respiratory therapist recommended alternating nights with and without tape to help my nose toughen up faster. But don't ignore it, she says she has seen people with large, open sores on their noses, even with the gentlest masks! If you do develop a pressure sore, please contact your physician because pressure sores can get quite nasty and troublesome if left untreated! I also found that my first mask placed too much pressure on my nose, and I changed to one that fit more gently (and sealed better).

3. Adjusting the mask (or nasal pillows). Everybody's face is different. That's why it is absolutely essential to find the right mask. Ask your DME (Durable Medical Equipment supplier) which masks they have seen a lot of success with. If you can't seem to work the leaks out of your mask, your DME should work with you to help you find the right mask. Your first instinct will be to tighten the mask to try to work out leaks, but that is not always the best idea. You will probably wake up with a sore face or with a pressure sore on your nose if you carry that too far. Try loosening it as well. Also, try to work with it during the day, when you're not trying to sleep. Once you find a comfortable setting, try to leave your headgear adjusted that way. Just put it on and take it off like a catcher's mask - hold the mask in place and stretch the headgear over your head. Also be sure to clean and dry your face before bedtime. A clean, dry mask on a clean, dry face works best! If after a few nights you still can't get your mask to seal properly, contact your DME to discuss options for a different mask.

4. Humidity. Do you experience nasal dryness, sneezing fits, a raw feeling in your throat, or even blood in your mucous? Shortly after beginning CPAP, did you develop symptoms of allergies, cold, or sinus infection? You may have the dreaded "CPAP nose!" If so, you need a humidifier. There are 2 basic types - cool, passover humidifiers (the air passes over some water in a tank between the machine and your mask) and heated humidifiers (the water is heated, thus releasing even more moisture into your airstream). Humidifiers can significantly increase comfort with treatment and thus improve compliance. With a heated humidifier, there is a common problem called "rainout" where moisture from the warm air in the humidifier condenses inside the tubing between the humidifier and your mask, and drips or pours toward your face! The most common way to fix this is to insulate the hose. Bubble wrap, tube socks, and commercial hose wraps (see the Sleep Mall) can be used for this purpose. Some readers say that just tucking the hose under the covers with you can be good enough to prevent rainout. Occasionally, moisture from the humidifier can condense in the exhalation port of your mask and make a whistling sound ("whistling mask"). Sit upright and thump the port a couple of times to get rid of the water drops and it will stop.

5. Mouth-Breathing. Is your mouth dry? Are you not experiencing symptom relief? You may be breathing through your mouth in your sleep. If you breathe through your mouth, a lot of the air pressure will be lost, reducing the effectiveness of CPAP. Therefore, if you're using a nasal mask or pillows (as opposed to a full-face mask) it's VERY important to eliminate mouth breathing. Ask your bed partner, if you have one, to check you while your sleep. Other clues to mouth breathing are snoring, a dry mouth, the sensation of lips or back of throat flapping, or not seeing your symptoms like tiredness reduce as much as you expect. Chin straps or full-face masks seem to help with this. Chin straps can be purchased from your DME, the Sleep Mall, or can be homemade. Do a search on this forum for suggestions. Additionally, some folks use micropore paper tape or a product called Chin-Ups (available at drugstores, marketed to stop snoring) to tape their mouths closed if they find chinstraps too restrictive or ineffective.

6. Feeling funny inside. Some people experience a bit of discomfort in the chest after beginning PAP therapy. Usually this is simply because you are breathing deeper and with more effort than you are used to. If you experience this, discuss it with your doctor. You don't want to mistake this for a heart attack! Some folks also have difficulty with swallowing some of the forced air, thus causing a lot of "gas." This isn't really gas, which is caused by the fermentation of digested food, but just swallowed air. Raising the head of your bed a couple of inches, adding a bed wedge, or switching to AutoCPAP are common solutions for this. It is called "aerophagia" and there are many posts about it on this forum. You can search the forum for this topic and learn a lot.

7. Not sleeping enough. According to my respiratory therapist, a common experience is to go from 7-8 hours of sleep without CPAP to 4-5 hours of sleep with CPAP. This is because your body has gotten all the rest it is used to, and decides it's ready to go. You have gone from a good quantity of low quality sleep to a lower quantity but higher quality sleep. She says this problem usually goes away by itself, as your body eventually realizes it can catch up on the sleep it has missed over the years. Give it some time, but realize your eventual goal is to get 8 to 8.5 hours of sleep with PAP per night.

8. Removing the mask at night. My first couple of weeks on CPAP, I would awake with the mask on the floor beside my bed, with no idea when or how I took it off! This is common until you get used to sleeping with it on. Again, most people report that this problem usually goes away by itself as you adjust to wearing it. Some readers have suggested using small bits of tape or band-aids to hold the mask to the face, making it more difficult to remove, and more likely to wake you up should you try. One reader suggested that this may also be due to difficulty exhaling against the pressure of CPAP, and the problem was resolved by switching to BiPAP treatment. Some machines have alarms that go off when they sense a significant drop in pressure (like a large leak or removing the mask). My owner's manual says that this feature may or may not work with a humidifier, but mine works just fine.

9. Cleaning my gear. Don't get too obsessed with hygiene here. The recommendations I have seen include cleaning the mask and headgear with something mild, like baby shampoo, Ivory, or Neutrogena once a week or so. Stronger, perfumed, or antibacterial soap can harden the soft parts of your mask and decrease its life span, or leave a residue that prevents a good seal. My RT recommended using a clean, damp cloth on the mask daily, with baby shampoo once a week. Just a tip - times I washed the mask with hot water just before bedtime I had trouble getting a good seal, probably due to the silicone expanding and contracting due to temperature changes. It is best to clean it in the morning and let it dry all day. One reader takes his to the shower with him each morning and rinses it clean. Clean the hoses and humidifier tank (if you have one) with vinegar and water, but that doesn't have to happen too often either. Some people use a cotton ball or two inside the tube during cleaning to help clean it. Just block the ends with your hands and let the cotton ball float up, back and forth. Using distilled water for your humidifier tank can make it last longer, too as you'll not have to worry about lime scale, sediment, chlorine or fluoride. Definitely change the air filter in your machine once a month, or as recommended by the manufacturer. Mine is washable, and I wash and dry it thoroughly once a month even if it looks clean.

10. How soon will I feel better? Some people report immediate relief from the first good night's sleep, some people report it took 4-6 months to notice a difference. Most people report something in-between. Give it a few weeks, and try to notice small improvements along the way, like dreaming, waking up earlier, not falling asleep behind the wheel, etc. It is likely that others will notice the difference in you before you do. Once you start to feel improvement, chances are that you will continue to improve over time as you pay back your sleep debt.

11. Always use your machine when you sleep, including naps and travel. There is a lot of information on the web and in your owner's manual about this. It is essential to get a good-quality extension cord and a power strip for hotel stays. It is probably a good idea to keep these stored in the travel bag for your machine, so you won't forget to pack it. For airline travel, never run your machine through baggage check, always pack it as a carry-on. Since it is medical equipment, it shouldn't count toward your carry-on baggage limit according to the Americans with Disabilities Act (ADA). There is information on that in our forum too, do a search. Your owner's manual should let you know how to hook up to DC power for camping, etc. If not, there's good info on the web and in this forum as well.

12. Keep in touch with your doctor and your DME. Let them know how your treatment is going. They can be helpful in solving problems, and can let you know about treatment options, such as humidifiers, new masks, re-titration of your CPAP pressure, chin straps, and the like.

13. Read the SLEEPNET sleep apnea forums, because there are lots of people who post here and many have had similar experiences to you. Reading SLEEPNET forums can help keep you informed as a consumer, and many doctors and DME providers appreciate patients who take an active role in their own recovery.


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