How To Make Sure CPAP Therapy Succeeds
October 17I read an interesting blog post today by a self-proclaimed born skeptic of just about everything. He wrote this post called “Sleep Apnea Skeptic“. It’s quite an entertaining read in many ways, yet sad too. This person ends his post with “I am open to being proven wrong, so if anyone out there wants to straighten me out, feel free.” but then locks the post from comments and pings so hopefully, somehow, this person will get to read me straightening him out.
Let’s start with where I agree with “LostInLouisville”. This person has a problem with how quick a manufacturer of XYZ supplies recommends their product when a new patient is diagnosed with just a simple test. This appears to border on commercial intentions only. Let’s diagnose loads of people and make sure we flog them our goods. Especially in pharmaceuticals, I agree to an extent that it often looks this way. Treating the symptoms forever (recurring money!) instead of removing the underlying cause just once seems to be the motto.
However, in the case of sleep apnea and CPAP, I couldn’t disagree more. Unlike more mysterious health problems such as CFS, UTI, cancer and many others, sleep apnea comes with a distinct set of symptoms and can be diagnosed in a scientifically and clinically proven way fairly easily. In the case of Obstructive Sleep Apnea, cause and effect becomes even clearer.
The blogger in question is of the opinion that CPAP as an air splint to keep the airway open is an “extraordinary claim”. He then sets out to go find “extraordinary evidence” which should comfort his mind. I only have to dig out one link which has over 500 pages of this extraordinary evidence to support CPAP is a suitable means of treating sleep apnea:
http://guidance.nice.org.uk/page.aspx?o=452425
Pretty much every bit of research since Sullivan first invented CPAP in1981 is referenced in the documents there. But even if we forget about getting all scientific about it, in layman’s terms it’s quite easy to grasp. Airway gets blocked by tissue at the back of the throat, CPAP pumps air under slight pressure into the airway to open up airway and allow patient to breathe. Without CPAP, no breathing. No breathing, no oxygen. No oxygen, fatigue, disease and death. With CPAP, yes breathing. Breathing = oxygen = no immediate death.
LostInLouisville didn’t mention finding any of this evidence but with the simplicity of Google nowadays, let’s assume he did and just ignored to blog about it. He did mention:
So when I turned to the internet to explore my uneducated skepticism about the subject, I expected to find some like-minded people exploring the topic. No luck. I can’t seem to find anyone with anything negative to say about the increasingly popular diagnosis.
What a surprise! He didn’t find anything against CPAP as a therapy for sleep apnea, he did find evidence in favour of it (I assume), yet still remains skeptical:
I don’t have any evidence that the claims are over-reaching. I only have my skeptical impulse. The sleep doctor my wife visited conducted a standard overnight test and (surprise!) determined that she had sleep apnea. And if she would only step next-door she would find a conveniently located store which sells the sleep apnea-eradicating CPAP machine. I wonder how many people go to the sleep doctor and are told, “No, you don’t need the CPAP.”
I don’t have hard figures but feel confident to say that the sleep tech wouldn’t recommend CPAP if there were suitable alternatives. Some people’s obstructions are clearly caused by an enlarged uvula. Laser treatment could work. Others have a lower jaw of such a shape that the person’s throat is more prone to collapse. A dental splint could well work better than CPAP here. But in most cases of ‘regular’ sleep apnea, CPAP definitely is the way to go. As recommended by thousands of sleep experts world wide.
Then comes the sad part. With the ’support’ of her caring husband, she gets her CPAP machine (which more likely than not, by this time has probably been written off already), ‘tests’ it and finds it makes her sleep worse. So the conclusion by this person is, this was all a scam.
Hold on a second. She shouldn’t be ‘testing’ the CPAP. The sleep lab should have done that to establish within comfortable margins that CPAP works. The standard overnight test he speaks of usually consists of one part multi-channel data gathering (respiratory flow, blood oxygen saturation, pulse etc.) and one part auto-titrating CPAP along with more data gathering to see if the symptoms improve. Perhaps she didn’t get this form of a standard test and indeed had to try it out herself at home. That would make for the worst scenario for starting CPAP users.
It is now common knowledge in the world of sleep apnea and CPAP that patient education improves compliance. Talk About Sleep discusses it to great length in this article. A PowerPoint presentation here talks in-depth about CPAP compliance and even mentions the involvement of the partner. With a skeptical partner and DIY trials, you have the ingredients for failure.
Clinical trials have been done with regards to patient education prior to CPAP therapy and every time they find that with proper motivation, education and assistance, compliance improves significantly. Jean Wise et al did such a trial with video education. Melanie Means and colleagues came to similar conclusions in their journal. This PDF by Chest Journal investigated the effects of group education sessions and also concluded that with the right support, compliance increased. There are many more studies done with the same results.
So let’s compare what science knows to how this person and his wife approached the situation. On one hand we know that assistance, education, monitoring, acceptance and awareness improve success rate and compliance yet on the other hand we have couple with a highly skeptical approach bordering on being naive and hating the industry, DIY/suit yourself trial period and ultimately aborted therapy.
I believe that had they adopted an attitude of “The evidence is there, it works for thousands of others, let’s make this work for us!” and a balanced patient-provider relationship, this woman could have been sleeping well, with CPAP, and subsequently feeling much better.
These quotes form the Talk About Sleep article linked above illustrate the point:
Dr. Fox went on to say, “”Yes, everyone has a hard time from the get go. It may take time; the first issue to overcome is psychological -accepting the therapy. The next biggest barrier is mask fit, finding the right tolerable mask. Follow up helps with long term compliance. When symptoms are apparent it helps patients when they actually see results and benefit from CPAP therapy.”
Attitude also plays a role in the critical adjustment period of CPAP therapy. I wanted to have a better understanding of psychological issues that may interfere with or challenge the newly diagnosed patient.
[…]
Dr. Schmitz, as part of the sleep team, believes, “the better a patient understands their sleep disorder and its treatment the greater the chance they will be able to follow through with prescribed treatment.. A collaborative and supportive process of education, from initial consultation to follow-up care, provides a strong foundation towards helping patients successfully adjust to CPAP treatment. Supportive education also may help reduce psychological barriers to treatment such as fear and anxiety about the use of CPAP. While adequate education does not guarantee compliance, it is an essential part of the process. Similar to other chronic conditions such as diabetes, which often require daily involvement or intervention by the patient, one would certainly want to provide the level of education and support for people with OSA needed to help them successfully manage and adjust to their condition.”
I see it often in the various CPAP related forums. Patients with almost a hostile approach to their CPAP equipment always struggle with keeping up the therapy. On the other hand, patients who thoroughly understand their disorder and how the equipment will help, look forward to CPAP like a child in the run up to Christmas. These patients worship their machine and even on the inevitable rough night, appreciate the benefits rather than focus on the negatives. Acceptance is key here. Starting off being skeptical certainly doesn’t help. To then be thrown in at the deep end with a DIY trial period makes for a disaster recipe.
So if you suspect you suffer from a sleep disorder like sleep apnea, do your own homework first and then listen carefully to your medical professional who knows about sleep. Ask your questions, clear any doubts you may have. Then do your homework on the sleep lab process. Know what is involved. Ask questions to the lab personnel or in forums online. Understand the sleep test results and how this is proof of your symptoms. Start to realize that with proper treatment these symptoms can go and you can feel your old self again. Realize the journey won’t be easy, especially in the beginning, but focus on medium to long-term goals, on the positives, on the benefits.
You feel bad now. CPAP will be your best friend. For a long time. Make sure you have a healthy relationship with this new best friend. Considering you’ve probably been suffering from sleep apnea for years, how much effort is giving CPAP a good try for just 6 weeks? Do you really want to feel better? Embrace proven technology and get on with life!
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AJ Oct 23
I have chime in here. I was diagnosed with severe apnea in July of 2007. I went through a second sleep test with a CPAP to determine the levels at which I would need to use my machine. I received my machine a few days later. I sat down with the technician, he fitted me for a mask it all seemed great…the tech even commented on my great attitude and predicted that I would adjust well to it. Cut to three months later. I have gone through several masks, nasal sprays, prescritption drugs, mattress pads, etc. When I use the CPAP my face is constantly itchy and once I move to a different position, I have to spend the next 20 minutes readjusting my mask because of air leaks. And when I do finally fall asleep in a fit exhaustion, I wake up a few hours later only to find that I have taken the mask off in my sleep. When I use the CPAP, the next day I nap when I am supposed to be awake. I feel much worse when attempting to use the CPAP than when I don’t. I had my second follow up with my sleep doctor yesterday and his suggestion was another CPAP machine.
You ask: “Considering you’ve probably been suffering from sleep apnea for years, how much effort is giving CPAP a good try for just 6 weeks?”
My answer: Before CPAP therapy I was tired. Now I am tired, frustrated, and so depressed that not a day has gone by in the past 2 months that I haven’t had a crying fit. Dealing with CPAP has been the single most frustrating experience of my life. And what’s more frustrating is that my doctor is not listening to me. When I ask about aother treatments, all I get is another piece of durable medical goods pushed on me.
You state that CPAP is my best friend. Well, today I packed up my best friend and put it in the attic because I firmly believe that all dysfunctional relationships need to be ended.
CPAP.co.uk Admin Oct 24
Hi AJ,
Thanks for taking the time to chime in.
Sorry to hear your struggles with CPAP. For the sake of objective blogging and fairness, I have to admit there is a small portion of patients who don’t succeed with CPAP. Clinical estimates put success rates at around 90% these days. You seem to be the unlucky one out of ten who don’t get on within a reasonable time frame.
It’s a shame your situation didn’t work out, especially when we read the life changing stories others report. To feel worse off a few months after getting the equipment is a real bummer.
Perhaps you may want to consider talking to fellow CPAP users. I’ve often seen patients pick up more useful tips from fellow patients - who after all use the equipment themselves more than the doctors/sleep techs - than from those who supplied the machines. Your doctor sounds like one of those too busy or with sales targets on his agenda so you may indeed benefit from joining our forum, the BSSAA forum or an American one like cpaptalk.com. Peer to peer hints and tips may well hold a few gems for you. Topics like itching, taking mask off in sleep etc. get discussed regularly.
I hope there’s light for you at the end of the tunnel. Surgery has a lower chance of succeeding than CPAP and MAD isn’t suitable for all types of jaws. It’s a touch one but I hope you can join the club of those who have their sleep apnoea under control, whichever way you find works for you.
Joe
Jackson Cooper Oct 24
Hello, I am the author of the post you reference. Thank you for your thoughtful response. I look forward to reading the information at the link you provided.
Looking back on it, I think I allowed our experience with this specific company to raise my skepticism about sleep apnea. It was their behavior that was suspicious, and their claims that were extraordinary. After a little more research, I have found that their claims are out of line with most of the information available. I try not to generalize based on anecdotal evidence, and I think that is what I have done here. In fact, my wife and I have several relatives who have been helped greatly by the CPAP.
With regards to my wife’s situation, I am still skeptical of the diagnosis. In my amateur capacity, I have observed her sleeping. And while she snores lightly, she does not stop breathing. I am therefore skeptical when this particular sleep test indicated that her breathing ceases twice a minute. Additionally, she did not have any of the symptoms I have found listed for sleep apnea, other than snoring, and she does not snore loudly. (I am going by this list: http://www.helpguide.org/life/sleep_apnea.htm)
I have supported her efforts to sleep better, and was entirely and sincerely open to the possibility of being helped by the CPAP. It was only after dealing with this company that my skepticism was aroused on the subject. The test she took did in fact include both parts, the gathering of data and the re-evaluation of the data with the assistance of the CPAP. They claimed that it made a miraculous difference.
She was of the opinion that she did not sleep well at any point during the test, but was open to the possibility that it did really help. Over the next month, she went through every type of mask available, and was still not helped by the machine. The company was extremely difficult to deal with when she was trying (very hard, and with my support) to make it work for her. She ultimately became so frustrated with the lack of help and results that she returned the entire apparatus.
I know this doesn’t mean it couldn’t have helped. And I know it is still possible that she does have sleep apnea. But I think that she probably does not, and that she had other issues which were causing her to sleep poorly. In the intervening year, she has been able to address those issues, and is sleeping better.
Maybe this is an anomalous experience. I know the evidence here is anecdotal. That’s why I asked to have my experience shown to be wrong. I appreciate your efforts to provide me with good information.
Also, if I had more people reading my blog, I might turn the comments on. As it is, all I get is spam when they are on.
Regards,
Jackson Cooper
Jackson Cooper Oct 24
I tried to post my response as a comment, but perhaps it was too long. You can read it here:
http://lostinlouisville.com/blog/
Thanks,
Jackson Cooper
LostInLouisville
CPAP.co.uk Admin Oct 24
Thanks Jackson, glad you got to read my findings, opinions and general ramblings.
As fas as commenting and spam is concerned, I can highly recommend the Akismet plugin for WordPress. It installs in seconds and quarantines all spam. I get none slipping through. It really works wonders.
Thanks for the response too. Kind of fun, this cross-blog talking about topics we are passionate about. Whether with CPAP or not, I hope your wife finds a solution to her sleep related breathing issues, if that is in fact the case! If any developments occur, I’ll be happy to hear about it.
Joe
Mavis Frazier Feb 6
I just want to point out that not everyone stops breathing. Some have Hypopnea which is a reduction in airflow and thus in oxygen levels. This is actually more common and is also treated with CPAP.
constance Mar 16
Day three tring to fall asleep with this contraption on my face. How long does it take most people to fall asleep with it. Falling asleep and staying asleep was the issue and now it sems worse.
Julie Smith May 10
I am at the begining of my “relationship” with my cpap. I was very excited. (To have a night where I actually could sleep through the night and wake up refreshed would be a dream come true…even if it didn’t help with all the other things promised (ie high blood pressure). This will be my third night using it..and the last two nights haven’t been pleasant…but I am plugging away.
The thing that interested me the most about the story with the gentleman and his wife was his claim that she had no symptoms. Even visiting a sleep doctor is very expensive and they are very specialized. There are two centers in the study where I live and you must be referred by a primary care doctor. I didn’t read his original post but he was so adament that she had ABSOLUTELY NO SYMPTOMS. My family, including my parents saw the same doctor for years and he didn’t catch the fact that my Mother and I both have sleep apnea. But when she was in an auto accident, and I change doctors we were both diagnosed. This despite the fact that I didn’t think I had sleep apnea (of course I don’t snore!) When we were referred for a sleep study it was based on very specific symptoms and physical traits. When we were actually diagnosed it was based on very clear scientific guidelines. I suspect that most people who go into a sleep study do end out being diagnosed with apnea - for the simple reason that doctors don’t send someone for a test unless they are pretty certain of the diagnosis. Even with my great insurance, the testing is costing me close to $1000 dollars for two studies and two office visits. I can’t imagine that someone who had absolutely no symptoms would end up in a sleep study in the first place. And if she had no symptoms - why did she seek out the doctor and agree to the sleep study? As to his assertion that he has watched his wife sleep and saw no evidence of symptoms. My apnea didn’t appear during the study until rem stage…it did’t even occur during the first three hours of the study …so unless he watched her ALL NIGHT…he can’t be sure.
If there really is a doctor somehow luring unsuspecting people with no symptoms into sleep studies and then selling them machines they don’t need. I would report him to the medical board - it would be a travesty. I would check him out to see if there have been other complaints. I just find the whole scenario unlikely.
Julie Smith May 10
After I posted, I thought that I should add one more thing. IF you are in doubt of a medical diagnosis (and god knows doctors are not infallible.) Get a second opinion. To stop a treatment because you think you know more than the doctors can be dangerous. The effects of apnea can range from car accidents to congestive heart failure. Every time I fight with the mask, I remind myself that it is better to struggle with this, less painful and cheaper than it is to ignore it and pay the consequences in the future.
Charles Cooke Sep 30
For any readers of this who feel worried and confused - let me tell you this. CPAP saved my life, literally.
I suffered from OSA without knowing it. It didn’t matter too much, although it might have been a contributory factor in my divorce … but when I had a heart attack, getting no oxygen while asleep became a big issue.
I had laser treatment to remove the uvula with absolutely no effect, just a great deal of pain and a huge bill, then was referred to Papworth Hospital in Cambridge, went in for the sleep study, and was given a CPAP machine.
It wasn’t easy, of course (a tip - have the hose pointing upwards, then you can sleep on your back but turn your head from side to side easily; and keep it clean. It slips more often if it’s not washed at least every week…) but I have had it for 4 years now, and think it’s brilliant.
I sleep 7 hours a night most nights, and my life has been given back to me. Fantastic.
Persevere, fellow sufferer, it’s worth it.