Hi all,
I am "2sleepy," diagnosed with OSA at the end of January, 2015. I started CPAP just 2 1/2 weeks ago and have had frequent small, medium and large problems when trying to use CPAP. It was my lucky day yesterday when I found this forum.
Here is my most recent issue. I am using nasal air pillows. Last night after sleeping soundly for 4+ hrs., I woke up because my upper lip and nasal openings felt damp, irritated and sore. This is a new problem for me. Has anyone run into this problem with sore, raw skin where the interface comes in contact with skin? If so, any suggestions for avoiding the problem from getting worse and / or preventing skin breakdown? In the middle of the night, I did not want to stop the CPAP so I repositioned the mask and put a folded cosmetic pad between my upper lip and the air pillow. That seemed to work for a quick fix. The humidity level on my CPAP was set at 3 (scale 0-5) which is the regular setting that I have used without any similar problems. Thanks for any tips you can offer me.
Other than being "2sleepy" I have been snoring loudly for the past 20+ years. My husband of 30+ yrs. was unable to sleep next to me even wearing ear plugs, so we have been sleeping in separate rooms for the past couple of years. I know that my snoring is severe. It was rated 8/10 in the sleep lab. This was no surprise to me because both my mother and her brother are "notable snorers" in the family. It came as a big surprise to me to learn that I stop breathing while I sleep. My AHI was 14.3 during the sleep study. Yikes! That caught my attention, because I have always taken breathing for granted. I feel very commited to adjusting to the use of CPAP for health reasons. I can understand why many people abandon using CPAP along the way. Although it looks simple enough, easier said than done.
Nice finding a site where I can talk with other people who have been down the road ahead of me. I am surprised by the number of people posting here who have been using CPAP for many years. I had not even heard of it until a few years ago.
First the nasal pillow problem. It's possible you have it adjusted too tight, a problem for most new users. Try loosening the head gear just a bit. A good idea is to put the pillows on an hour be fore bedtime and adjust. For irritation there is a product called "Ayres" (spelling might be wrong) that you can use to lubricate the contact area on your nose. I've also used Neosporin. As far as 14.3 AHI, it's not that bad. Patients with an AHI of 5 aren't even offered CPAP use in most cases. My own AHI was 37 with an 02 desaturation to 80%. What was your 02 saturation? I ran an AWAKE group for 5 years, worked as a chat host at "Talkaboutsleep.com" for about 10 years. I've been on CPAP then AutoPAP since August 1999. My wife is also a Sleep Tech. So I've probably heard most of the patient complaints. Since I started on CPAP I have beta tested more than 60 interfaces, you may want to try a different one.
Joe
Joe
Wow, Joe
Thanks for your comments.
I will try putting the mask on well before actually going to bed. I wouldn't have thought of that. I also would not have thought of the damp, irritated face being related to the mask being too tight. I did not have the same problem last night, but it is good to be familiar with the range of common problems and some solutions for next time around.
My O2 sat was 83.
Interesting how you and some of the others who post here have such a long history with using CPAP. I am a nurse by backgound, more towards retirement now. In 1999, I had not even heard of CPAP. Back then I knew I had a problem with snoring, which started around 1990. I just thought it was a familial, nuisance-type thing. Even when I went for my sleep study in January, 2015, I doubted that I had a problem with sleep apnea, because I sleep so soundly at night. When I got the results, I took them seriously and I am very committed to continuing on CPAP for the long term. I am going to give the nasal pillows more time, but I might try a different interface in the future.
I have also never heard of talkaboutsleep.com. Good to know about that. I just found this site a couple of days ago. This is a new world for me.
Talkaboutsleep.com isn't the site it used to be. It was the largest sleep info site on the net but changed hands about 5 years ago. The woman that started Talkaboutsleep is now Executive Director of the American Sleep Apnea Association which runs this site, We became good friends over the years and I have to say she is one of the most dedicated people on the planet for helping OSA patients and folks with other sleep disorders.
One important thing to remember, all interfaces are designed to be worn loose the tighter the interface on your face the higher the risk of pressure sores. Two of the best masksI've found are the Resmed Activa/Activa LT and the new F&P Eson. You can actually layon your back and set the Activa on your face, turn on your CPAP and the Activa will seal to your face. It' an amazing interface, BUT, it is also larger than most people want to wear. The Eson is much smaller and seals well but not as easily as the Activa. As far as nasal pillows the new Phillips Gel pillows work very nicely as do the Phillips GoLife (which was designed for women). I switch around with these 4 interfaces.
My connection with Tracy Nasca of the ASAA over the years and being married to my own personal sleep tech has given me the opportunity to test over 60 interfaces over the years and allowed me to educate myself to the point that when I go for a sleep study for new equipment my docs simply ask me, "what do you want?", and write the script that I dictate to them...........LOL.
Prior to my first sleep study in 1999 I thought OSA was the latest medical cash cow. After my study I learned the truth. This is why I've spent so much time over the years in chat rooms, running an AWAKE group and trying to educate the public. It's my "pay it forward".
Good Luck, 2sleepy
Joe
2Sleepy, I understand about the nasal pillows irritating your nose. I am wondering if you have the correct size. I know there are different sizes of nasal pillows. Once I had the correct size, I was relieved of the irritation. I have used an Extra Emollient Night Cream (Mary Kay Cosmetics, Inc. is my brand.) when my nose was irritated already with a cold before I put in the nasal pillows. That did make a difference.
2Sleepy - I have been using nasal pillows for 25 years. I like less on my face! You've been given great advice in this thread but one thing I wanted to add is that many people make the mistake of inserting the nasal "pillows" too far into the nostrils. In fact, they should lay gently just inside the nares and the flow of cpap air will actually help seal by suction. If you are experiencing what many patients call "pig nose" (meaning the nose is being pushed up) then you are inserting the pillows too far and probably pulling the straps too tight.
If you have irritation at the nostril openings, your fit and adjustment is not accurate. As Joe mentioned, loosen up a bit. Needlessly over tightening our masks is one of the most common mistakes we patients make! You also mentioned upper lip and nasal openings feeling damp...this could be the result of your cpap humidification system causing excessive condensation in the tubing and flow BACK in to your mask. If this continues to occur, consider lowering the heat setting on your humidifier, or cover the tubing to lessen "rain out". You could also consider placing the tubing so that it dips down to collect excess condensation, instead of allowing the condensation to flow towards you and your mask. Many cpap users let the tubing slightly dip down between nightstand and bed. There are also tubing lifts available, I use the one by Ardent Innovations and it resolves all of my tubing issues. Good sleep to you! tracy
Thank you to all who are helping this newbie along. I appreciate your comments about the range of problems I have run into over the past 25 days of using CPAP.
Tracy, I think I have been tightening the headgear too much. I surely know what you are referring to as "pig nose." Between the pig nose from the nasal air pillow and a smushed up face from a chin strap, this is not a pretty site.
On the issue of not making the mask too tight, here is my problem. I sleep mostly on my side. In the "early days" (ahem 2 weeks ago), I would fall asleep easily, breathing easily with the nasal pillows in place. On my first position change, about 2 or 3 hours into the night, when I was sound asleep, the nasal pillows went out of alignment and it was a big challenge getting a clear airway, and a position of comfort with my bed pillow. I have put aside a roll type pillow that used to be my 1st choice, rejected a travel size pillow which has been a pillow of choice for the past few years and I am now using a standard size pillow. The result is the same, all is well until my first position change, then things go downhill. That is why I started tightening the head gear more securely. Any tips on this problem? Many of my issues are bothersome, but last just 1 night. This one has persisted.
Thanks all...
It's so hard to diagnose a persons PAP problems without being face to face with them. It's like a doctor making a diagnosis without seeing the patient. As I have been on "the hose" for so long and have gotten good advice along the way I tend to skip basics. Many patients are never told how interfaces work and how to wear them.
Now that Tracy has brought up the "pig nose" issue, which I neglected to mention, I have a few suggestions.
Are you presently using the large size nasal pillows? If not, try using the next size larger pillows than what you are using now. Nasal interfaces are usually packaged with a few different sized pillows. If you do this with the interface worn loosely does it seal properly without the nasal pillows actually entering the nose? The seal is supposed to be on the outside of the nose not the inside.
When you lay on your side does the interface break the seal because it is hitting your pillow? If this is the case, there is a unique pillow designed by an old friend of mine from "talkaboutsleep.com". It's called a PAPillow ("http://www.papillow.com/"). When you lay on your side using it, the interface hangs over the edge so the pillow does not break the seal of your interface, be it a mask or nasal pillows. You can see how this works by simply folding your regular bed pillow in half and placing your head on the pillow so that you are resting on the "hard edge" and your interface hangs over the "hard edge". The design of the this one is such that if your lay on your right side and roll over to your left side your interface doesn't make contact with the pillow, causing a leak.
Joe
Hi Joe,
Thanks for taking some time to help a Newbie.
You are right. I was not told how interfaces work and how to wear them. I had help putting it on correctly in the Sleep Lab, but no explanation about concept or correct use. I basically didn't shift my position that night, because I was afraid to move with so many wires, leads, the nasal pillows, straps on my head, etc. In the AM, I was told that I would need a chin strap. This has added to my confusion. With 4 straps on my head tangling with my hair there are many ways to go astray.
That said, I am coming along. I use a Res Med Swift Fx Nasal Pillow system. I started with a size small nasal pillow in the lab. When I had the experience of feeling like I was suffocating for an extended period one night, I called customer service (clinical support) department of my DME. One helpful suggestion was to increase the size of the nasal pillow. A size medium has worked much better for me.
I got very frustrated by the nasal air pillows getting out of alignment with position changes. Because I sleep mostly on my side, I got the original model CPAP pillow by Contour Products. It has more cutouts than the newer model CPAP pillow, and it works very well for me. I especially like that is shaped to keep my head and neck in proper alignment. That $50. investment turned out to be money well spent. Good thing because it is non returnable.
I also ordered CPAP moisture therapy lotion to protect my irritated skin. That has helped. I tried to find something appropriate at a local DME. They had no clue what I was talking about. I only knew that I needed something that was not petroleum based. CPAP moisture therapy is something I found online. More recently, I found Ayr Saline Nasal Gel on Amazon. It sounded like what you were referring to in your last post. I expect that will also do the trick.
So the journey continues. My latest change has been a change in hairstyle, which is a pretty drastic measure for me. My hair was not long, and not really short. I had nightly battles with working with my hair and the 4 straps on my head, especially the adjustable silicone strap on the top of my head. This is probably a more common woman issue than guy issue. To me, it felt like a drastic measure to change my hairstyle. I showed my hairdresser a diagram of all of these straps, and she came up with a short hairstyle that resolved the tangled hair issue.
I am now at 42 nights of consecutive use of CPAP. I still run into new issues and problems, but I am getting a better feel for how my interface should fit. On Monday, I have another follow up appt. at the Sleep Lab with the nurse practitioner. I think I might need another adjustment in the prescribed pressure, but I am getting closer to feeling as if the CPAP is helping.
Thanks to all who have offered tips and suggestions.
What a journey. Onward...
2Sleepy
Depending on the CPAP machine you are using some let you test the fit of the mask/nasal pillows before you start sleeping. You might consider getting a device that does that which will give you the confidence that you have everything fitting right without causing you physical discomfort or pain. Once you are confident that the fit is right and you are comfortable you will likely not worry at all or as much and sleep better.
I too use Res-Med Nose Pillows. I discovered Pad-A-Cheek.
http://www.padacheek.com/PACSwiftII_Barrel_cozy.html
i have a slight allergic reaction to the material used in the Nose Pillow. The nose pillow cover takes care of that. . . would not be without one.
a note 2Sleepy: for those of us that are side sleepers, the head gear shifts. not sure what will keep mask in place when we shift sleep positions... i use the RES-MED Swift FX BELLA. The straps go only around the ears. No head strap. No chin strap. This is the best one i have used so far. This one would allow you to have kept your hair style ! ! ! ! ! !
http://www.resmed.com/us/en/consumer/products/masks/swift-fx-bella-gray.html
take care.
Most patients I talked to over the years that have used the chin straps only use them a few weeks then never use them again. The chin strap "teaches" you to keep your mouth closed. Let's call it a training device. Four years ago my wife told me I was opening my mouth in my sleep, something I've never done before. I used a chin strap for 3 weeks and now sleep without it. You're doing great 2Sleepy, keep at it. You'll learn to love the CPAP. BTW, I don't know if I mentioned it but my wife is a Sleep Tech. I'm one of the few people that sleeps with a Sleep Tech.
Joe
Hi all, thanks for the many and varied suggestions. I have now been using CPAP nightly for about 2 1/2 months and my issues have become infrequent and more manageable. Whew!
My latest headgear interface is the Respironics OptiLife Nasal Mask with Chin Strap. I am finding it easier to put on and keep in place as I turn side to side. The CPAP pillow is comfortable and keeps my head and neck in alignment. The change of hairstyle seemed drastic, but it makes it so much easier to manage my hair with the head straps, and I even like the new hairstyle. Imagine that!
Best of all, I feel better and I am more alert during the day. My AHI is most often less than 5.
Getting to this point has been a huge learning curve. I absolutely understand why many people do not adjust. Having this resource of experienced CPAP users has been a big help to me. So, thanks all!
2Sleepy...getting less sleepy...aka...Janet
Congratulations, Janet! Thanks for sharing your experiences with your new mask and chin strap, and I'm glad you are sleeping better and feeling more alert during the day. Shared experiences like yours will help MyApnea.Org continue to grow as a resource for so many who are seeking support and interested in research about sleep apnea!
Thanks, CatOwned
I am now comfortable with my Respironics OptiLife Nasal Mask with Chin Strap. Whew!
Happy I got something workable on a second try! These masks are expensive.
The next time I purchase a new mask, I think I will order a full face mask to use as an alternate. I rarely get a cold, but I have realized that whenever I get my next head cold, I will need a mask that allows for breathing through my mouth and nose. At least I know what does not work for me in a full face mask. In the sleep lab, I could not tolerate a style that has a strap or tube going between my eyes.
Newbie with new problem....drooling in the middle of the night...rude awakening with cold wet head straps. YUCK!
I don't know what went wrong there, but my mouth shouldn't have been open in the first place. Yesterday I washed the head gear. Might have reassembled all of the parts, just a little bit differently. The chin strap is adjusted as tight as possible. I will need to do some problem-solving today during my waking hours. Not surprisingly, my AHI was 10 this AM. It has been running under 5.
To any sleep disorder specialist reading this post, please be aware that adjusting to CPAP and getting it to work properly is easier said than done. I think that is a major factor in non-compliance, especially within the first 30 days. People need guidelines and assist with working through the nightly issues in the first 30 days. Maybe a dedicated "help line" would improve compliance.
I am "over the hump" with getting something to work, but I had more issues adjusting than I could have imagined. Because it was my #1 priority to learn to sleep and breathe at the same time, I figured it out. This would have been a lot harder, if I had the demands of a work schedule, childcare, eldercare, or other pressing family responsibilities. I am grateful that I have adjusted. This site has been a good resource, because there do not seem to be a lot of other resources out there for problems with adjustment.
