2Sleepy

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...

Joe,

Thanks for posting your story.

I am an RN with a MS in med-surg nursing.

I started snoring loudly around age 40. At the time I weighed 110lbs.

It is just this year @ age 64, that the thought occured to me that I might possibly have a sleep disorder.

I had a sleep study in January and was very surprised to find out that I had OSA.

I agree that there needs to be an awareness that anyone can have sleep apnea. I have picked up extra weight in recent years, but I surely did not fit the profile for sleep apnea when I first started snoring, having excessive daytime sleepiness, and memory problems 20+ years ago.

Thank you for speaking out about your difficulty with getting a correct disgnosis, despite your medical background. I was able to get a diagnosis OSA on the first try, but adjusting to CPAP and getting results (nl range AHI) has been a huge daily challenge for me.

I agree that recognition of the problem is a big challenge for both health professionals and the general public. This experience has been a literal "wake up call" for me. I thought I was in very good health and had no idea what was going on with hypoxemia and sleep apnea during my sleeping hours.

I look forward to the day when screening is commonplace and there is general public awareness of sleep apnea and the associated risks.

Again, thanks for posting ablut your experience.

2sleepy...I look forward to the day when I can change my screen name to Was2Sleepy

Hi Kyle,

You asked. I will answer.

1. Yes, I do think these summaries of key information are useful.

2. I do not have any difficulty reading the bar graphs, but I think the new format might be more visually appealing and understandable to a wider range of respondents.

3. I looked at all of the bar charts as I completed the original set of surveys. I expect that I would continue to do this, because I am a detail-oriented person by nature.

4. Other comments:

   • I am not familiar with the Promis Sleep Distirbance Scale. I would be interested in knowing more about it.
   • It seems like these surveys are simply collecting basic data. To me what is missing is not asking people about what interferes were their compliance with CPAP, especially at 30 days, maybe earlier. CPAP in known to be an effective treatment for OSA, yet there is a relatively high level of non compliance. To me, finding out more about non compliance and addressing the issues could save lives and improve the quality of people's lives. I was disgnosed with OSA on January 26, 2015. Because of my background as a nurse, I took the results seriously and decided to work through whatever issues and obstacles arose. I have run into many barriers to compliance including obtaining equipment, issues related to the proper use of the mask and chinstrap, issues related to emptying and cleaning the humidifier (it looks very simple, but not really), finding out who could help me resolve those issues, finding out the plan for followup (who, what, when & where) was never mentioned to me. I have been using CPAP for just 24 days now, but the issues that have come up have been almost daily. One problem that I had was using the CPAP machine, yet having nightly AHI's that were close to my baseline with no treatment. One night I had a particularly bad night, I perservered and found out the next AM that my AHI was worse than my baseline with no treatment. I was able to figure out that I probably needed an adjustment in the pressure. I am thankful that I was able to figure out that I needed an appointment sooner than the 5 week followup. These issues may seem easy enough to resolve for people who are very familiar with CPAP, but not so for a newbie. I don't think my experience was very unusual, but after just 24 days of CPAP, I can see so many reasons why people might conclude that it is not worth the bother. Sorry about that very lengthy respnse, but to me, the key is with clinical reasearch moreso than collecting demographic data. Just my opinion. Thanks for asking. FYI, there is a typo in the line about night owls.

2sleepy ....hoping to remain compliant and get positive results from CPAP

Wow, Bhek

What a great experience you had on your first night!

I am still making a lot of mistakes, but I am committed to being CPAP compliant. See you on the discussion boards.

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.

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.

I think that sounds like a good idea. In my area, a TV investigative report gets action. Good luck, jo'

Mike J

I tried 3 different interfaces in the sleep lab in January. There were huge differences between the mask and nasal pillows. I decided on nasal pillow which I find comfortable and least confining. I have not had a problem with feeling dry. In the sleep lab, the tech set my humidification level @ 3 (range 0-5). It was perfect for me and the humidification can be asjusted easily at home, by turning a dial.

I am not familiar with equipment that was used 10 years ago. When I think of the rapid advances in all high tech equipment over the last 10 yrs,, it seems like there must be significant improvements. Just my opinion.

Bhek, I can relate to what you are saying about the difference between using the equiptment in the lab vs. at home.

I got a tip from a Respiratory Therapist that helped me a lot, when I was new at using the equipment and headgear.

TIP: Practice putting on the headgear and using the machine while you are most alert during the day. I was getting all tangled up in the headgear, chin strap, etc. when I tried to put it on at bedtime when I was already sleepy. It looks so simple, but easier said than done when you are not fully alert.

TIP: Read through all of those brochures after the equipment is delivered. When the Respiratory Therapist did the demonstration with me in my home, everything seemed so simple and straight-forward. It was then, but the details are very easy to forget. The brochures will have diagrams, further instructions, and may explain something in a different way that makes it easier to understand.

TIP: Find out who you can call with questions / problems. This has been an ongoing process for me. When I was having problems with my nasal air pillow & head gear, I got very frustrated. I later learned that the company that supplies my equipment, has a Customer Service Center specifically for clinical problems. The Customer Service Center is staffed by Respiratory Therapists and Sleep Techs. One toll free call to that center made a huge difference in my adjustment.

Thanks, Ed and others who contributed to this discussion. I do travel both by plane and on long road trips. Your suggestions were very helpful. I have also lost electricity for 5-7 days on more than one occasion during hurricane season. The battery back up info helped with that issue.