Sleep Apnea CPAP Compliance Craziness

One of my biggest pet peeves is how doctors use the word compliance. If a patient doesn’t comply, it usually implies it was the patient’s fault. In sleep medicine, compliance is often used to measure how well patients use their CPAP machines. But compliance is not the same thing as success.

 

Various studies report CPAP compliance rates at 29% to 83%. The problem is that the definition of compliance changes from study to study. More recently, we’ve adopted the new Medicare requirement for CPAP compliance, which requires that the patients use CPAP at least 70% of the time over a 30 day period, for at least 4 hours every night. Otherwise, the machine has to be returned.

 

If you sleep 7 hours every night, it comes to 210 total number of hours per 30 days that you’re sleeping. Seventy percent of 210 hours is 147 hours. If you sleep only 4 hours every night, then this figure drops to 88 hours, which means that you have to use your CPAP machine only 40% of the total time that you’re sleeping to be considered "compliant." This doesn’t take into consideration if you’re actually feeling better or if the machine is being used effectively. 

 

Since CPAP works only if you’re using it, if only 40% of people are still using CPAP regularly 5 years after beginning treatment, then the CPAP success rate is at best 40%. But not all people who use CPAP will benefit, so this figure is likely to be much lower. Many more people are likely to stop using CPAP as the years go by. 

 

There are many patients that are 100% compliant with CPAP, using their machines 100% of the time they are sleeping, with no leaks and a low AHI, and still feel no better. Sometimes they can even feel worse than when they don’t use CPAP.

 

From what I’ve seen with CPAP compliance studies or even with sleep apnea surgery studies, they all manipulate the numbers to make their results look great. In very tightly controlled research studies with frequent follow-up and intensive intervention, results are likely to be good. But in the real world, with fragmentation of care, poor follow-up and lack of patient education, true success (the patient feels much better AND the numbers show it) is disappointingly low, no matter which option you choose. 

 

Despite all these obstacles, there are proven ways to improve CPAP success. With a systematic and formalized education program, along  with intense counseling, follow-up, and long-term support, many more people can benefit from CPAP. Ultimately, a major part of poor CPAP compliance is due to the health care system that’s dropping the ball.

 

Am I being realistic or too pessimistic? Let me know what you think of this issue in the comments box below.

Please note: I reserve the right to delete comments that are offensive or off-topic.

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203 thoughts on “Sleep Apnea CPAP Compliance Craziness

  1. Hi, I think what you wrote was very clear. I found out recently I have sleep apnea. First part of overnight test was fine, second part awful. Could not sleep, freezing in the room, allergic to the glue, tech put on the nasal mask and left the room, came back and switched me to bipap. I ended up leaving the lab at 3am and driving home so I know the results were not accurate to begin with. Doctor you ordered the Bipap seen me for a five minute eval to support the gp who ordered the test. Got the unit pronto, signed a bunch of forms and I was not given copies, had horrible panic attack with air in my mouth after a few days….called, emailed, wrote letters for them to pick it up, would not respond. Then got a call a week later telling me not everyone can use it and they would pick it up when there were in the area. Another week went by and got a call today that the doctor would not provide a release…didn’t know what that was about because I don’t know what I signed….so they said I would have to sign a release. So I am sorry to say I had an awful experience at the sleep lab, the company did not want to help or pick up the unit, nor was I aware the doctor is supposed to sign a form that I no longer would be using it. Sorry to say in my case, it was just a quick way to make money. I wanted to try Provent since I have so many other medical issues and am up and down all night. They won’t give me a prescription to even try them. So I have gotten no help.

  2. Since using a cpap machine for the past three years I have experienced almost total hearing loss in my right ear, severe vertigo and vomiting on several occasions resulting in ambulance trips to hospital and being treated for this with increasing dosages. I have seen several ENT doctors with no results. I was assured that the cpap would not cause any hearing issues.

    I have been using the cpap machine almost 100% aside from the odd time.
    I will not be using it in the next few weeks to see if there is any improvement

  3. They do have a mouth piece you can use. Air Force used that method before cpap. Look up normal breathing. While I was on cpap I sleepwalked out of a semi while my wife was driving about 60 mph. I have found fraud in the research. Infants that were left blind after study. Paul Bert effect is a study done years ago. Breathing and disease. I can’t drive now after seizure from cpap use. I’d post more but it would probably would just get deleted.

  4. Thanks for your reply. The more I read on cpap the less I want to use it. I think that it will eventually be consigned to the medical dustbin of history along with leaches, coca nephew and blood letting to name a few.

  5. …a seizure after using CPAP ? Pure coincidence… Infants left blind after the study…??…..what study used infants? …walked out a semi….?…do you mean ‘jumped’?…and how did you keep the door open?

  6. “”John says:
    February 2, 2017 at 12:26 pm
    4hours a nite sounds reasonable but my dot physical Doctor wants 80% which means about 8 hours a nite. Is that reasonable? If that that what I need to do I may never go back to work.”” Being able to function properly and stay healthy on 4hrs sleep/night is incredibly rare. You are an accident waiting to happen. There is great material as to healthy sleep habits which you should read and do.

  7. Tom says:
    January 23, 2017 at 9:09 pm…..The overnight sleep test DOES show when you snore !! and the technicians determine the pressure at which your brain waves show you are sleeping well. I suggest you already had your mind made up it wouldn’t work before you started using it. It does take a while to get used to sleeping with a CPAP mask but it does happen…especially with those who are sincere about doing whatever it takes to prevent dying of sleep apnea.

  8. By: Martha Garcia | Published: April 15th, 2013

    Nearly two dozen universities failed to properly warn parents that a national oxygen study may put their premature infants at risk, federal officials say.

    According to a letter (PDF) issued by the Department of Health and Human Services (DHHS) to the University of Alabama at Birmingham, the lead institution in the study, research institutions involved in the study did not offer informed consent to the parents of the premature infants.

    The study involved 1,300 premature infants between 24 to 27 weeks of gestation. Researchers evaluated the results of increased or decreased oxygen through a continuous positive airway pressure (CPAP) treatment to determine the levels of oxygen saturation and neurological effects on premature infants.

    According to the letter, the institutions involved were aware of the potential adverse affects the treatment may have on the infants, including blindness and even death. The DHHS Office of Human Research Protection says the institutions had sufficient evidence to know such treatment may cause serious consequences, but never properly informed parents participating in the study about the potential risks. The office considers the failing a violation of regulatory requirements for informed consent.

    The study took place between 2004 and 2009 and 130 infants of 654 in the low oxygen level group died, while 91 of 509 infants in the high oxygen group developed a serious eye problem, which can result in blindness.

    The study, published in the New England Journal of Medicine in 2010, was financed by the National Institutes of Health and involved 23 high profile Universities, such as Stanford, Duke and Yale.

    The consent form only mentioned risks involving abrasion of the infants skin, and claimed there was a potential benefit of decreased need for eye surgery if the infant was assigned to a certain oxygen level group.

    DHHS officials say the consent form should have highlighted that the risks of the trial were not the same as the risks of receiving standard care, so parents could make a more informed decision.

  9. I have severe sleep apnea and have for the past 15 years I faithfully use my CPAP
    because I have great difficulty breathing when I lay down and for sure can not go to sleep. I have had a sleep study every 5 years with no problem getting the machines having pressure adjusted and such. Today I was scheduled for a sleep study I arrived and everything was fine I got all the sensors on and was told to go to sleep when I told the tech that I could not sleep without my CPAP because I have to much trouble breathing to go to sleep. He informed me that the test required I sleep for 2 hours without my CPAP If I slept for 2 hours I wouldn’t wake up the funeral would be next week. This test is a joke I left

  10. Dr. Park
    You are absolutely correct. I have been in practice over 50 years and my experience with CPAP is that:
    1. Most applications fail and the apparatus winds up in a drawer.
    2. It is a business created to the benefit of sleep lab specialists and equipment purveyors with the backing of tertiary care (never the real world) studies.
    3. It is in general a huge waste of healthcare dollars when we measure the cost-benefit ratio to the system and to the patient.
    We need a better solution.
    Sincerely,
    Murray Trusler, MD, FCFP
    Fairmont Hot Springs, BC
    Canada
    mbtrusler@hotmail.com

  11. Wow! A Dr. not drinking the cpap Kool-Aid. I’m on total disability now after using cpap. With device on I sleep walked out of a semi while my wife was driving about 60 mph 6/8/2012. On 10/1/2012 I had a grand maul seizure after sleeping 8 hours with cpap. I have found cases of fraud, deaths, seizures, and my brother-in-law also sleep walked with his device.
    To breath in 10 seconds hold for 10 seconds and exhale for 10 seconds allows for toxins to be better exchanged through breathing. Which would fail a sleep test. I have many pages of research I could forward. That doesn’t even get into the known billing fraud. Trillions in 2017 just in US. I never sleep walked before using cpap.

  12. I am a former scuba diver. I know all about air pressure and the human body. There is a very big reason why air pressure is scaled way down for divers. Our lungs and bodies can not tolerate a ton of air forced into it at any altitude or depth.

    I been driving for 23 years. Never had an accident in a commercial truck. Then one day someone got a hair sideways up their back side and said truckers have sleep apnea. So the doctors railroaded a lot of us onto the cpap. Since being on the cpap I have had nothing but sleeping problems. Had the cpap turned down 3 times. It is still over pressurizing my lungs. I have headaches every morning.

    So my machine is set to the lowest setting with. Max of 10. I still can not breathe as it is suffocating me and waking me up. I have cornered the doctor about where the pressure is set and the fact they still can not find the test that proves I have sleep apnea. What he say? Lets have you do an in clinic sleep test to see where you stand. I told them to go to hell as I was not spending another $4000 for them to get the actual results that I been telling them. I do not have sleep apnea at all!!!!!!

    Now that the government backed off the sleep apnea issue. Just maybe I can get off mine before I have a serious incident brought on by doctors who don’t have a clue about diving medicine which they should learn before forcing people into something that will kill them faster than a heart attack.

  13. I’ve read about scuba diving and agree with your post.. My sleep test was Springfield MO. Elevation I think is about 1,400 ft. I sleep walked out of our truck in Cheyenne WY. Which is about 9,000 ft.. Doctors said I had polyps in sinuses and to not use cpap. I found research that cpap test were not consistent above 5,000 ft. I the state of CO.

  14. Your figures are not real. Doctors are rushing to have patients get on a CPAP and they don’t explain a thing and don’t listen to the real feedback. I have been put on a CPAP and use it regularly and carefully and show no results at all but I am still trying. I communicate with people from Georgia to Ariz and find everyone saying the same thing, it is a farce. They are all disappointed and around 95% just quit them, evidently you don’t know that. They are reluctant to tell their doctor he is pushing a farce. I have a lot of names and figures and I don’t understand why some reputable doctor doesn’t open up this can of worms.

  15. This is weird. CPAP saved my husband’s life. I don’t understand why anyone would say CPAP machines are a farce. You either need one or you don’t. My husband has used one for a decade now. The first night he wore it was the best night of sleep he’d ever had. Sleep apnea is real and should be treated.

  16. Is it healing him? Or making him addicted to device. If your happy great. After using cpap I sleep walked a few times. Had grand maul and other types of seizures. Now on total disability. Also have to take seizure meds or doctor will not sign off on my Ins forms. I don’t use cpap. I have a 19″ neck. I have practiced relation breathing for my health long before cpap. I breath in for 10 seconds hold for 10 and out for 10. One of many books on healing is by Billy Branson Mining the Silver Lining. After working with her I don’t take hay fever meds. I have other posts. If you have a question I’d be happy to try to answer.

  17. On cpap for 2 yrs….using a Phillips Rem Star c flex…ramp time 40 mins..Last week did not go with the ramp time…started my sleep with full on pressure..I fell off to sleep sooner and had one of the best nights (4.7)…I’m now going full on pressure nightly….Is this o.k.?

  18. I agree. My husband will not use his BiPap. The mask makes it impossible for him to sleep. His doctor even prescribed sleeping pills to help him go to sleep with it. He just can’t tolerate it. He has a BiPap instead of CPap because he has Central Sleep Apnea (CSA). There are very few good alternative treatments other than the machine to try for CSA. We went back to the Dr. that did his sleep study and the only thing he could recommend was a different mask. He didn’t even seem to care that much that he was not able to use the machine.
    He is a young man, and it is very upsetting to think that he could be damaging his health because he doesn’t use his machine.
    I continue to research and look for any new options. If anyone could solve this problem, it would be a huge win for individuals with CSA.

  19. The injury to the alveolus is thought to develop when pulmonary or systemic inflammation leads to systemic release of cytokines and other proinflammatory molecules. Mast cells, which express mediators that exert effects on lung vasculature, are also increased after hyperoxic exposure [78]. Cytokine release activates alveolar macrophages and recruits neutrophils to the lungs. Subsequent activation of leukotrienes, oxidants, platelet activating factor, and protease occurs. These substances damage capillary endothelium and alveolar epithelium, disrupting the barriers between the capillaries and air spaces. Edema fluid, proteins, and cellular debris flood the air spaces and interstitium, causing disruption of surfactant, airspace collapse, ventilation-perfusion mismatch, shunting, and stiffening of the lungs with decreased compliance and pulmonary hypertension. There is no pattern to the injury; however, dependant lung areas are most frequently affected    [74, 79]. Tissue examination reveals that surfactant disruption, epithelial injury, and sepsis initiate the increased expression of cytokines that sequester and activate inflammatory cells. Increased release of ROS alters normal endothelial function. Microarray analysis has revealed increased expression of genes related to oxidative stress, antiproteolytic function, and extracellular matrix repair as well as decreased surfactant proteins in ozone-induced ALI    [80]. Diffuse alveolar damage results with intra-alveolar neutrophils indicating the presence of an inflammatory response in the alveoli. Red blood cells, cellular fragments, and eroded epithelial basement membranes are present with formation of hyaline membranes, indicating that serum proteins have entered and precipitated in the air spaces due to disruption of the alveolar capillary barrier. Formation of microthrombi indicates the presence of endothelial injury and activation of the coagulation cascade    [81]. Acute lung injury syndrome presents within 24 to 48 hours after the direct or indirect trigger. Initially, the patient may experience dyspnea, cough, chest pain, tachypnea, tachycardia, accessory muscle use, cyanosis, mottled skin, and abnormal breath sounds (crackles, rhonchi, and wheezing). Blood gas analysis reveals progressive worsening of hypoxemia, leading to respiratory failure. Bilateral infiltrates are seen on a chest X-ray and are consistent with pulmonary edema but without the cardiac component of elevated left atrial pressure. Treatment includes mechanical ventilation, supportive care, and treatment of the underlying causes [16]. The mortality of ALI has improved over the past decade; however, it still ranges from 30% to 75%    [75, 77, 82, 83] and occurs in about 86 of 100,000 individuals per year    [84].6. ConclusionOxygen, often used to treat hypoxemia in the clinical setting, is itself a triggering factor in HALI given that the exposure is sufficiently concentrated and of adequate duration. The lung is a vulnerable target for oxidant-induced injury, initiating a cascade of protein signals that determine the cellular response. The alveolar epithelial and alveolar capillary endothelial surfaces are injured. Hyperpermeability, microthrombi (resulting from altered coagulation and fibrinolysis), collagen deposition, and fibrosis alter alveolar structure and function.  Understanding precise mechanisms of injury and pulmonary cellular responses to hyperoxia is essential evidence for expert practice.AcknowledgmentThis project was sponsored by the TriService Nursing Research Program (TSNRP) (N08-012, HU0001-08-1-TS08). The information or content and conclusions do not necessarily represent the official position or policy of, nor should any official endorsement be inferred by, the TSNRP, the Department of Defense, or the US Government.References

  20. Roy says: Instead of reposting article. Here is time I posted it. September 24, 2016 at 9:56 pm
    Subject: oxyge toxicity.com: roy ijams .

  21. I was diagnosed with OSA in 2002. Have successfully used a CPAP all but three nights since then. My only problem is with these “compliance standards.” My 11-year old ResMed died in 2016. Went to supplier and they required a sleep test as mine was last done in 2002. Got the sleep test which determined CPAP was still needed. Provider gave me new CPAP. Anthem BCBS won’t pay for CPAP, been fighting since June 2016. While they paid for the humidifier module and supplies for two years, they say the CPAP machine is not medically necessary. Their reason is I did not provide “evidence that I was using the CPAP more than 4 hours at least 70% of the time for the 90-day period before I received the replacement machine.” Never heard of this, and how does one do this with a machine that has no compliance card? So I had to pay $2,070 for my CPAP.

  22. I went through the same thing, I was told once I reached compliance, 4hrs per night, for a month the machine would be mine to use, the paperwork said I was renting it, the conversation was it would be mine then – rent free, well guess what, it took several months for the paperwork to be processed so several months in I was shocked to see I was paying a rental, at the same time I started a new insurance year, at the end of Feb 2018 I got the bill for January, 11 bucks to 150 bucks, the machine did nothing but make me claustrophobic and I so informed them but they insisted I keep using it. I stopped using it in the beginning of Jan, even though data on the machine will show I didn’t use it they insist I pay for Jun and Feb and if I don’t return the machine by mid week they will charge another month, they say that’s the law. I’m starting to think medical equipment rental is a scam.

  23. My husband is a dialysis patient, with CAD, diabetes, worse case of sleep apnea, depressed,, gets violent at times,, yet he refuses to use mask or machine,

  24. Dear Dr. Park,
    I appreciate your kind, factual, reasonable tone in this article. I went online today to try to alleviate my fears about using a CPAP mask. It hasn’t helped much.
    My experience has gone wrong from the start. I was seeking a diagnosis for a mobility disorder when I got “detoured” to a sleep study. It didn’t help that I had no idea that a prescription for a CPAP mask was even remotely in the works until a month later when I got my first results. My trust and confidence level in the doctor would have been a lot higher had I been informed this was the probable expected outcome. It took their office three months to contact me with the “recommendation” by the Doctor via the Sleep Tech to do another sleep study to have a mask titrated. I’m still waiting for the written report they said was on the way.
    I don’t like the idea of being monitored by the insurance company for “compliance”. They already have too much of a hand in making my choices for me in medical care.
    Add to that the bloggers who are hostile to anyone who has problems or dislikes using CPAP, with the Roman Chorus in the background screaming a list of Dreaded Diseases you will get if you don’t COMPLY!
    I have several reasons for not wanting to use a CPAP mask even before possible problems with fitting, etc. Add to this the CPAP MILL approach of the Sleep Doctor and Clinic I went to, plus transportation difficulties, and I’m overwhelmed.
    I feel like I walked into Crazyland just because I was having problems sleeping.
    Again, thank you for your rational approach. I will read more of your articles later.

  25. Found out today my numbers with in monthly are .6 I’m getting to where it’s not making me feel better each day it’s making me feel bad everyday. So I stopped using for about 4 nights & I seem to feel better by not using it. I’m on night oxygen also. Thinking of stopping my bipap not even sleeping well with it.

  26. My lady friend was issued with a C Pap machine about two years ago, and was given no one to one tuition at all before taking it home to use. When she then had problems in adjusting to sleeping with the device, she eventually returned it to the N H S Hospital concerned.
    During the six month period that she was attempting to use the machine at home, there was an unbelievable six week period when there were no doctors at all to give her assistance due to staff shortages!
    You couldn’t make it up could you?

  27. My lady friend was issued with a C Pap machine about two years ago, and was given no one to one guidance on how to operate the device once she had taken it home with her.
    She had the machine for around six months, but, although she had some success early on, was never really comfortable using it.
    During this period she asked the N H S Hospital concerned if she could visit the relevant department to receive some help in adjusting to the device, but was told that there were currently staff shortages, and that therefore she would have to wait for further help until people returned to their duties!
    You really couldn’t make it up, could you?

  28. In 2009, the VA diagnosed me with narcolepsy and sleep apnea and persuaded me to use a c-pap; eventually I was prescribed a bi-pap. Virtually everyone who commented here on c- and bi-paps was critical of these machines. I have used c- and bi-paps more than 80% of the time for nearly 10 years, and I have had generally great results. I sleep more soundly and awaken more refreshed than I did prior to using the machines. I no longer awaken with a headache, my mind is more clear, and I feel rested. Occasionally, I go to sleep naturally for the experience, but when I awaken in the night, I put the bi-pap mask on and sleep much more deeply.

  29. I feel that in some patients, the CPAP will eliminate / decrease the apnea but the patient may be still having multiple arousals / awakenings.
    Basically they go from OSA to UARS.
    Even on CPAP, they still feel tired, are not dreaming consistently and still have bruxism

  30. I have used a Cpap for 12 years now always stayed compliant as a truck driver however I became sick with silent hart burn and acid enters my lungs as I sleep. I could no longer use Cpap because of this condition and lost my CDL do to incompliance. I can not afford the surgery at this time. I am 55 years old but was able to find a new career in UT but now this state is now taking my driving privilege away for not using Cpap and now I will loose my new job soon as it requires that I can drive a car to work. I was able to afford a new sleep study by living in my car and living like a bum as I started my new job. They told me I have mild sleep ap. and I asked if anybody passes they said no ” Nobody passes this test. I can no longer drive even a car now how is this as a truck driver I never had a accident or incident in 32 years of driving but some how I am evil and can not have a drivers license. How is this possible? I feel like fighting UT for this how can I get back on my feet if this state makes me go down do to this scam?

  31. Mr. West,

    I totally agree. The apneas durations drop below the 10 second threshold but arousals still happen. Having something on the face can also cause more arousals.

  32. Hi r. Park,

    Just to let you know, I do agree that the reason for poor C-Pap compliance can also have to do with the Healthcare system dropping the ball.

    I have felt that I have been left to figure out what to do next all by myself. I am not having any luck with the C-Pap as when I use it, it causes, gas, bloating, and flatulence at night time. How, I have to wonder, are you supposed to sleep with all that going on at night?

    I also just found out recently that I have acid reflux which is causing a swallowing issue. I was just tested on September 4th for that at the hospital.

    I went in for a sleep study about a year ago and was told I have severe sleep disordered breathing, which showed 37 apneas per hour.

    I was just told to use the C-Pap or I would have more serious problems to deal with. I also had a gastroscopy done, and found out I had esophagitis and gastritis in January. I was put on PPI’s and now found out on September 23 when I had another gastroscopy that they have all healed, thank goodness.

    Now, because I feel that the C-Pap could be causing this reflux problem, I am going to a place called TMJ and Sleep Apnea Centre, to see if I would possibly be suitable for a dental appliance.

    I was told to lose weight as well as using the C-pap, and so far have lost 18 lbs. I need to lose at least another 15 lbs. to get to my normal weight. I am just hoping the weight loss will enable me to use the dental appliance.

    Anyway, thank you so much for all the valuable information you have been sending me. It has been a lot of help to me at this time.

    Darlene

  33. I have moderate sleep apnea and CSA induced by CPAP/BiPAP in the sleep lab so was prescribed an ASV machine. I have had it for 3 weeks. It has caused severe aerophagia requiring 3 pressure reductions which gets me out of the range which is beneficial. I have never been able to get to sleep with the device even after wearing it for 3 hours so I remove the mask and go to sleep. I have to sleep some.
    There is absolutely NO SUPPORT from the DME. All they care about is getting the machine into my hands so they can start billing medicare. At the rate I’m going, I’ll have to turn in the machine as I won’t be compliant. I am really trying to use the machine and am highly motivated to do it. I failed at the dental splint because it caused TMJ.

  34. Linda says: October 15, 2019 at 11:55 pm. I have moderate sleep apnea and CSA induced by CPAP/BiPAP in the sleep lab so was prescribed an ASV machine. I have had it for 3 weeks. It has caused severe aerophagia requiring 3 pressure reductions which gets me out of the range which is beneficial. I have never been able to get to sleep with the device even after wearing it for 3 hours so I remove the mask and go to sleep. I have to sleep some.
    There is absolutely NO SUPPORT from the DME. All they care about is getting the machine into my hands so they can start billing medicare. At the rate I’m going, I’ll have to turn in the machine as I won’t be compliant. I am really trying to use the machine and am highly motivated to do it. I failed at the dental splint because it caused TMJ. .. Do you need cpap to do your job. I (Roy) lost my job trying to us cpap. And now on seizure meds. I sleep walked out of semi on cpap. Now on total disabilty You my be able to use hypnosis. / By: Martha Garcia | Published: April 15th, 2013 Nearly two dozen universities failed to properly warn parents that a national oxygen study may put their premature infants at risk, federal officials say. According to a letter (PDF) issued by the Department of Health and Human Services (DHHS) to the University of Alabama at Birmingham, the lead institution in the study, research institutions involved in the study did not offer informed consent to the parents of the premature infants. The study involved 1,300 premature infants between 24 to 27 weeks of gestation. Researchers evaluated the results of increased or decreased oxygen through a continuous positive airway pressure (CPAP) treatment to determine the levels of oxygen saturation and neurological effects on premature infants. According to the letter, the institutions involved were aware of the potential adverse affects the treatment may have on the infants, including blindness and even death. The DHHS Office of Human Research Protection says the institutions had sufficient evidence to know such treatment may cause serious consequences, but never properly informed parents participating in the study about the potential risks. The office considers the failing a violation of regulatory requirements for informed consent. The study took place between 2004 and 2009 and 130 infants of 654 in the low oxygen level group died, while 91 of 509 infants in the high oxygen group developed a serious eye problem, which can result in blindness. The study, published in the New England Journal of Medicine in 2010, was financed by the National Institutes of Health and involved 23 high profile Universities, such as Stanford, Duke and Yale. The consent form only mentioned risks involving abrasion of the infants skin, and claimed there was a potential benefit of decreased need for eye surgery if the infant was assigned to a certain oxygen level group. DHHS officials say the consent form should have highlighted that the risks of the trial were not the same as the risks of receiving standard care, so parents could make a more informed decision.

  35. The more I read about this thing, it motivates me to get rid of the CPAP machine. I have acute sleep apnea and have been using the CPAP mask for side sleepers since a long time. I need some other therapy to get rid of the mask. Making natural changes to lifestyle is also helpful I believe because using the machine for a short time is fine, but for years it is not just inconvenient but a great problem as well.

  36. I have to agree with you. I love my CPAP machine, but I still stop breathing even with the apparatus on. I just don’t understand that. I know several people that helps them to get a good nights rest. Not me . It has never helped me, from the first time I used I still was awaken because so stopped breathing . I have had my CPAP for about 5 years I believe. I love the fresh oxygen but it doesn’t keep asleep. Others get a full nights rest with out being awaken from stopping breathing . It’s horrible .

  37. Hi Dr. Park, As a patient who was recently diagnosed with sleep apnea from a Home sleep study. It has been very frustrating for me as the CPAP machine was sent to my house with a mask. Due to shelter in place, I could not go in person to get fitted for a mask before receiving the machine. I have read both of your books and found them both helpful and very enlightening. It has been over a month since using the machine and I do not feel better. I feel worse as I am not able to sleep with the machine. My sleep doctor prescribed Ambien which only made me more groggy. Yes, I wished I had seen an ENT physician before trying the CPAP machine. Feel very frustrated and alone.

  38. Ms. Hom,

    Sorry to hear. There are other good options besides CPAP. Your best bet is to talk with your sleep doctor about what’s best for you. Don’t give up.