Bipap/Nasal Pillow Adventures

[piperjoe68]

I received my bipap machine back in September of '14, and it has been a great blessing, but also quite an adventure - and kind of frustrating at times. As helpful as people tried to be, I found that I had a real difficult time finding answers to my questions and solutions to my problems. The fact is, everyone's situation is different, and experiences are really diverse. I would occasionally find posts and article from others (here and elsewhere) that would point to exactly what I was suffering with, but then the post-er would disappear without a word. I assume either aliens abducted them, or they got better - who knows? Where I am today with this is a much better place than I started, and so I thought - "I really wished people would have posted their experiences when I was hunting, so maybe I should update mine." So, here's where I am now. As I said above, though, I got my machine about four months ago - so take what I say with an awareness that my experience is limited.

Mask Troubles - Part I

My first major problem was finding a good mask. I started with a Wisp nasal mask, but serious sinus problems made that a horrid fit for me (others love it). I could not breathe out through my nose with the mask on and it was quite uncomfortable. Additionally, I am a side-sleeper, and was finding that I was getting disruptive leaks around the mask, and fighting with getting it tightened down right was maddening. I wrestled with the Wisp for about a month before I tried another mask. I had not been not aware that my med supply company would let me try out a variety of masks, which is the only reason I went a month - so if you are fighting with this, too, and are about to throw in the towel, don't. Check with your med supply company - they can probably help, and changing masks can make a huge difference. I changed to a nasal pillow, which was great - I was able to breathe much easier, and it was far less claustrophobic. Additionally, I get 0% large leak, and hardly ever am disturbed by hissing air. So, switching to the nasal pillow solved one mask problem - however, it opened up a bigger can of worms.

Mask Troubles - Part II

Unfortunately, my bipap pressure is so high (18/24) that I started having serious nasal issues. I was fine for about a week, and then I started having crazy symptoms. I woke up one morning sneezing constantly, with a nose that would not stop running. I did not associate it with the machine immediately, but as I went on, the symptoms got worse and worse. As I researched, I found that this was a not uncommon side-effect related to the machine - especially with nasal pillows, seemingly. However, finding solutions was tough. The main remedy seemed to be nasal rinses and turning up the machine humidifier. I wanted to stay away from nasal rinses, and there were endless scary stories about rain-out condensation. I was at a loss, and could not seem to find good answers. I plowed through, though, and this is what helped me.

First, I did have to crank up the humidifier - currently I run it on the max level - 5. During the less arid months I was able to run for awhile at 3, but settled on 4. Now that winter is here, I have had to bump up. I had been afraid to mess with the humidifier, due to the rain-out condensation stories. In actual practice, though, I have not found that to be a problem. The only preventative measure I have resorted to is to use a standard $16 hose cover purchased at my medical care provider where I got my machine. Frankly, I'm not sure it would even be necessary, but it's nice to have the peace of mind, and it's also much more comfortable in bed having the soft hose cover rather than the ribbed hose. The increased humidifier level has been a huge improvement - if you are having these problems, but are nervous to try adjusting the humidity, I encourage you to give it a shot. The only other pain in the butt about this is that it, naturally, uses up the distilled water in the tank way faster. I find that it's leaving the tank empty after about 6 hours, meaning I have to get up in the night an top off the tank. Not a big deal, but it's a slight pain.

Second, I had a nasal moisturizing agent recommended to me by my home health care tech. This is by no means an advertisement - I hold no connection to this company, and I'm sure others make something like this - but I have found this stuff to be gold. It's a little pricey (about $8 or $9 for a small jar, which lasts me around a month). The product's name is Aquegel and I am able to get it at my home health care store, or if they are out, online at the company's site. There is a shipping charge, but it's minimal and worth it. I apply some of this to each nostril every night before bed with a q-tip. Most nights I find that I have to re-apply at least once. Others may not find this necessary - but my pressure seems to be on the high side (18/24), and I have fairly sensitive nasal passages anyhow. This stuff has really helped a lot - it comes in several "flavors" - zinc, lavender, no-scent, etc... I prefer the zero scent stuff, personally, as I'm really scent-averse (like, super averse). Again, if you have this kind of problem, I can't recommend this stuff enough.

Finally, I found a post somewhere online that was very brief but very helpful. This person found that their mask size was too small, and that was contributing to the problem immensely. It makes sense if you think about it: like water coming out of a hose, if you restrict the opening, the intensity of the flow increases. With high pressure air shooting up your nostrils, constricting the hole shooting the air will also increase the intensity of the the flow. The masks come in three sizes - small, medium, and large. I was sized with a medium. I immediately switched to the larger size, and immediately saw a reduction in the symptoms. Increase the hole size, and reduce the intensity of the flow shooting against your nasal passages. As usual, I offer this as MY experience. Be careful, and make sure to run it by your med supply tech before trying it, if you are nervous. It made a big difference for me.

I still have nights where I'm not loving the machine, and I still have mornings where I have some of the symptoms - but for the most part these solutions have made for much clearer sailing.

Keeping the Machine Clean

Finally, I had a lot of trouble finding consistent answers about keeping the machine and hosing clean. I found LOTS of horrible stories about people having unclean hoses and suffering with constant sinus infections. Also, there seemed to be no common cleaning schedules or practices, and even checking with my doctor, medical supplier, and the sleep study center led to no help. I was very afraid of infection, and so wanted to clean my hoses every day (found a good number of folks online who do that, I guess) but my work schedule makes it impossible to clean until the evenings during the week, and I could not even get my hosing to dry when I did it in the morning on the weekends and left it to dry all day! I looked at buying a CPAP hose drying machine (I looked at the Hurricane, primarily) but they were pricey, or overly technical. Plus, I could not find ANYONE who was using them - not even sleep centers. My med supply company knew nothing and the machine company gave a vague disclaimer not recommending them. This is what I ended up doing, and so far it seems fine:

For weekly maintenance, I wash the hoses, humidifier basin, and sponge filter in hot water with baby shampoo on the weekend. I rinse them in hot water after the wash to remove some of the scent. Then I let the hosing and all dry through the day. By night the mask, filter, and headgear are bone dry - but the hosing still has residue in it. I run the bipap through the hose for about 10 minutes, and then use it as normal. So far, this has not caused me any problems. I also made sure to take advantage of getting my replacement hosing and mask inserts as soon as insurance would let me. I change the thin, white filter monthly.

For daily maintenance I empty and rinse out the humidifier basin each morning, and let it air dry. I use the Citrus II CPAP wipes on the mask, and let that air dry, too. These wipes are a little pricier than baby wipes (about $12 for a container of 80 from my med supply), but I found it an IMMENSE pain finding any consistent information about keeping the mask clean. It seemed like everyone did it different, and I could not find scent-free solutions that were effective, and still clearly safe for the mask. So I said the heck with it, and use the Citrus wipes. Like the Aquegel above, I am not a rep for Citrus wipes - they just solved my problem: they are basically scent-free, totally safe for the mask, and it's working.

Anyhow

I am, again, certainly no expert on this subject - but I HAVE found some solutions that have, for now, allowed me to make peace with this machine that has literally made living possible again. Hopefully, my experience can be helpful to someone else out there.

Thanks for the helpful, patient answers others gave me!