Hi everyone, I'd like to introduce myself. I'm 16 years old and have known about sleep apnea since my mum was diagnosed around 2 years ago. I am very passionate about CPAP therapy as iv seen the change it's had on my mum. She's a new person!
I have started a school project with the aim to understand what are some of the biggest challenges in gaining compliance with CPAP therapy. I would really appreciate any insights you may have.
Look forward to hearing from you!
From an insurance companies point of view, compliance, would be 6.5 to 7 hrs usage, daily for 1 to3 mos, depending on the company's policies...practically speaking, it should reduce apnea events to less than 5 per hour(or less)...you sleep more soundly and awake easier...not sure from your question what else you may be looking for............. madjack
p.s. there are health issues related to having apnea such diabetes and heart disease among others. ..google can help you find additional info........mj
I think what you are asking is why people fail to stick with CPAP treatment enough for it to be effective?
I can share my own personal difficulties with it, but I'm sure it varies. For starters there was the discomfort of using the mask. The first time I used one they gave me a full face mask in a lab setting and my anxiety set in and caused me to have a panic attack. I managed well enough to sleep for a few hours but it was an awful experience. I didn't try again for 8 years and then out of sheer desperation.
The first time I really gave it a try I was only successful for about 10 months and gave up again. The smaller nasal mask was much more tolerable to wear though which helped my initial issue. One of the major difficulties I had was chronic sinus infections. Whether they were caused by or aggravated by the treatment I really don't know but I couldn't use it when my nose was blocked or when the pressure of the machine caused such horrible pain in my sinuses.
It also dried my eyes out very badly to the point I was getting awful infections from irritation with my contacts so I had to switch to glasses. I had trouble sleeping with my mouth closed even after using a chin strap. My lips would open and cause noise and it would wake me up. I ended up having to use both a chin strap and tape my mouth closed at night. Not a very comfortable way to sleep. And between the mask, chin strap, and tape I had terrible lines all over my face that were quite embarrassing. For that matter wearing all of this in front of my husband was also embarrassing to me.
I had trouble with bloat now and then. I'd wake in the morning with my abdomen seriously distended and awful pain from it. Then painful gas that would last much of the morning. At the time, I was having trouble with my gallbladder and the added pain and pressure was awful.
Beyond the physical issues, I also found it a pain to deal with. To remember to clean the parts and have it set up and ready to go. I had to make sure my face was cleaned before using it too and by the time I got my kids to bed at night sometimes I was too exhausted to do anything but crash. Or I'd sit down to have a quick snack and fall asleep not meaning to.
I also didn't find it helped my fatigue all that much. While I always have far fewer headaches on treatment I'm still pretty tired most of the time and I still wake up a lot during the night. So the benefits were minimal.
After being off for 2 1/2 years I've been using it again for about 6 weeks. Hoping to stick with it this time around, but time will tell.
I guess I was just lucky...I researched the heck out of CPAP's and related items and bought the most unobtrusive head gear I could find (resmed p10 nasal pillows). I am also using a halo type chin strap to help with mouth opening while sleeping...I also have "motorboating" thru my mouth and have tried to train my tongue to stick in back of mouth...having dentures has not helped these problems at all...I still have very large air leakage but since my ahi dropped from a +50 to a 1.1, I don't really worry about it...hope you have better luck/results this time around......... madjack
Just to clarify, most insurance companies and Medicare require an average of 4 hours use per day minimum to set the standard for compliance. I know because I almost never sleep 6-7 hours; more like 4.5-5.5 hours and am fully compliant with Humana AND now Medicare.
Yes, I believe this is correct. I can't remember where I read it, but I was looking for this info at one point because I missed a few nights and was afraid it would count against me. I found compliant was at least 4 hours per night for at least 21 out of 30 days. Not sure if that's universal or through my medical company/insurance but that's what I found.
I have trouble just have a mask on my face. I started out with a mask that covered my nose, but I couldn't do it. After trying for 3 weeks, I switched to a nasal mask that sits under the nose. The hose also comes out of the top of the head instead of at the nose, which I prefer. I can stand how this one looks, but the previous one I couldn't even stand seeing myself in it and felt like and elephant with the hose out of the nose. I am still not extremely successful even with this much better mask. I do use it most nights, but just 4-6 hours. That is the best I can do after nearly 6 months. Some times, I am happy to wear it, but then my nose starts itching and I must take a break. Other nights I can't stand it at all. I get a feeling of not being able to breathe. Sometimes I have irritation on my face or my head from the mask. I keep trying, but it seems I will never do better than 4-6 hours per night and some nights I can't even make that much time.
It was hard to do at first. I can see why people stop.
Personally, I didn't care about how it looked - I figure I'm asleep, what do I care? But a lot of people care about that.
My problem was that at first it was really uncomfortable. Dry eyes, dry mouth, ridges on the face, neck pain, headaches - it was all from not wearing it right or needing other things. I got this over the counter eye ointment which helps a lot, and I'm going to get swim goggles to wear which will hopefully take care of the dry eye issue altogether. I got a chin strap which helped the dry mouth, and loosened up on the mask. I'm not worrying about leak anymore - my only concern is my events per hour. I hover around 1-2, so I feel like it's going well.
I think the big issue is that the doctors and therapists don't tell people what to do or how to mitigate these things. And a lot of people with sleep apnea have gotten used to feeling bad so when they feel worse at first it is really discouraging.
Probably the biggest barrier to compliance is education. I see so many patients who don't really understand what OSA is, why they're having a sleep study or why they should use CPAP. This tends to greatly reduce compliance.
Another is suppliers of various kinds who don't take the time to follow up their patients appropriately. Getting the right setup can make the world of difference, but this can only be achieved through consultation and patience. However, more money can be made by flinging a CPAP at someone and shoving them out the door.
FearlessBlue, I am going through the compliance issue now. One of my biggest problems is that it usually takes me 7 hours to get 3 hours of sleep, i have the type of insomnia that wont let me go to sleep. I know that my health has taken a big hit because of non compliance with treatment, and I am tired most of the time with no energy. I have talked with my Sleep Doctor about the insomnia and we think that it is caused by apnea itself, my brain knows or has been trained for many years that if I go to sleep, I will soon wake in an oxygen starved panic. It is difficult for me to lay in my bed for three or four hours wearing a mask attached to a tube and not fall to sleep.
Following good sleep hygiene practice says to not stay in bed for hours if one cannot go to sleep, that one should get out of bed and sit and read or do something other then lay uncomfortably in bed while not sleeping. This is my dilemma, if I can use my machine for three hours a night, I wake feeling great, most of the time, suggesting treatment is working. If, in time, the hours do not get longer, I will be considered non-compliant and will lose insurance coverage for my expensive ASV machine, even though the time that I am using it is resulting in much improved and desired outcomes.
As mentioned above, not only do I not normally go to sleep, the plastic alien octopus strapped on my face and its hose, that needs constant management, make things more difficult. I woke the other day, except for the massive pressure in my chest (that is what it seemed to be) was extremely painful, I had swallowed lots of air so I needed to belch, big loud belch, I felt great after the pressure was gone. I know this will work for me, after getting used to all the normal things that people need to adjust to. I just hope I can become compliant (In my insurance companies eyes) long enough that I may actually get, at some point, a normal 7 to 8 hours of sleep!
I also know that, for many people, it is not just a comfort issue. Some get claustrophobic and anxiety issues give them grief, that some meds used to treat these problems cause problems of their own. There is no one size fits all in many cases.
Good luck with your project. Robert.
