Ho’oponopono for CPAP

I do find this useful.

I have come to believe that health is based in providing four things: Good Purpose, Effective Nutrition, Good Stress, and Bearable Toxin Levels.

Recently I have come across a simple tool that helps me move toward better purpose. It is based upon an abbreviated version of Ho’oponopono. It is structured to be four lines of four syllables per line. As I use it as a “walking meditation” I find this works better with the stepping and breathing. Often I add two pauses (steps) after each line for “breath in” and emphasis thought.

The simple meditation:


Order does not matter. Subject varies widely. It simply seems to put my heart aright in so many ways concerning many many situations.

One thing that I find rather striking as I wake up using my CPAP. Often I know I am over breathing. I do know that setting my posture more right in terms of forward head posture will help. Eucapnic breathing techniques do help. But thinking the simple meditation I have set forth above simply calms my whole being down often too the point I can actually feel my feet warming up, my mouth become moist, and the rest of my body become calm. It is a great way to wake up with CPAP!


OSA Affects Brain Affects Life (part one)

The following I wrote in response to a recent post by Dr. Park (doctorstevenpark.com). I hope I continue with the plans I mention. I hope this promotes understanding:

I think the first thing we all need to understand about the brain damage which accompanies Sleep Apnea is that it creates symptoms which are intermittent in character. The first study which Dr. Mack D. Jones[2] found decisive[3] regarding the brain damage cause by Sleep Apnea showed very notable changes in white matter. In the brain there are short signal runs (microns) and long signal runs (from many microns to inches and up to several feet). The long runs are covered by “white matter” which maintains the energy from the neuron firing as it moves from the originating cell to the receiving cell. If the white matter is affected the likely result is that more energy will be needed to get the signal through. Perhaps that is why all of the “executive functions” that I mention following seem to be fine at times but if I am under stress for hours or days or weeks it is almost as if the inputs from the various parts of the brain have been “turned down” to where I cannot “hear” them. And so what was executive functioning becomes executive dysfunction. I think the poor little neurons simply fatigue. No more to give.

I think the best model describing the executive dysfunction caused by the brain damage from sleep apnea that I have ever seen was written by Beebe and Gozal in 2002[1]. I have come back to it many times since I read it in 2006 after discovering my own severe sleep apena with extreme hypoxia in 2003. It really helped me to understand what had happened to me.

In the future I hope to take the data from the various brain studies and correlate them to the executive and other functions of the brain which are affected by Sleep Apnea. By doing so I hope to help others understand what has happened and is happening to them and also to foster understanding for them by those who live nearby. As well I hope to find ways to repair the damage. I will share in my “blog to be” as I do.

I can recall many examples of what they write about[1] which have played out in my own life. Although I will share these experiences as attached mostly to a specific executive function deficit the reality is that most are a result of two or three of them “ganging up on you” to bring about the result. But here are some examples. :

[Executive Dysfunction Mentioned] Behavioral Inhibition

[Example from my own life] What I remember most in this category is yelling at people and deeply regretting it later while also being amazed that I did that. I know that it is better to find ways which foster peace and understanding and so have refrained from yelling. One day in particular I found myself yelling at my co-worker. Normally this would never happen but now lacking my normal “inhibition of the initial prepotent response to an event”[1] I did yell. And sadly now also lacking “stopping of an ongoing response”[1] I was continuing to yell and this was happening in front of customers (bad “interference control”[1]). Indeed a supervisor confronted me and told me I was “out of control”. I considered what he said, concluded he was correct, and asked to leave (we were near the end of service) which he agreed to.

For me the “interference control”[1] issue can get so bad that I start the day with a specific goal and remember what it was at the end of the day on my way to sleep or perhaps the next day.

[Executive Dysfunction Mentioned] Set Shifting

[Example from my own life] Doing things “by rote” does seem to go consistently well but in a new situation the sous chef wanted to see me slicing herbs rather than cutting strait down which tends to smash the edge of the cut. I said I would but did not remember – several times. Very hard to change the way I did things I found.

[Executive Dysfunction Mentioned] Self-regulation of Affect and Arousal

[Example from my own life] What comes to mind as I think about this one are the many times one of my cooking trainers would stop me and tell me to “take a break”. I think he simply noted my lack of focus as well as some “(1) heightened reactions to emotionally charged immediate events and (2) decreased ability to modulate overt emotional reactions based upon their social appropriateness”[1] and knew that a break would help. And it always did.

It is also difficult to remain “on task”. Difficult to maintain focus.

[Executive Dysfunction Mentioned] Working Memory

[Example from my own life] My co-workers stopped me and asked me why I was making my normal “trip around the kitchen for supplies” the third time. Yes there is dry storage, the walk in refrigerator, and the dish pit for supplies and getting all that you need in one trip is wise to do – but – forgetting each time what you were starting the trip for is not so good indeed.

[Executive Dysfunction Mentioned] Analysis/Synthesis

[Example from my own life] I was very unwise to choose making a new sauce as my first project of the day. I had never done it but knew it was complex. By the time the supervisor became involved the entire kitchen had been hampered. Very simply what should have been started in a large appliance had been started in a pot. I was unwise to choose the project and made many unwise choices along the way which resulted in a real mess and hampered production in what needs to be a very efficient kitchen. I was handed my walking papers the next day.

I found highest success in repetitive jobs which required little Analysis/Synthesis.

[Executive Dysfunction Mentioned] Contextual Memory

[Example from my own life] While I think that issues with working memory and interference control are very involved in this what amazed me is that I would look up at a clock and find that a project that normally would take me twenty minutes just blew an hour! It was one of the ways I was able to know I was having a bad day.

In terms of the effect of treatment well some positional therapy along with a nasal corticosteroide enabled me to successfully complete a cooking course I was in. CPAP also added to my performance capabilities. It is some help but I wish I had known how to better take care of myself in general earlier, indeed I wish I had known about functional medicine[4] much earlier in my experience. Perhaps using that I will get to the place I no longer need CPAP.


[1] Dean W. Beebe, David Gozal “Obstructive sleep apnea and the prefrontal cortex: towards a comprehensive model linking nocturnal upper airway obstruction to daytime cognitive and behavioral deficits” J. Sleep Res. (2002) 11, 1–16

[2] Deadly Sleep: Is Your Sleep Killing You? by Mack D. Jones MD (in chapter two under “Brain Structural Changes in Obstructive Sleep Apnea”)

[3] Macey PM, Kumar R, Woo MA, Valladares EM, Yan-Go FL, Harper RM. Brain Structural Changes in Obstructive Sleep Apnea. Sleep. 2008;31(7):967-977.

[4] The Disease Delusion: Conquering the Causes of Chronic Illness for a Healthier, Longer, and Happier Life – March 3, 2015 by Jeffrey S. Bland (Author), Mark Hyman (Foreword)

What I Wish CPAP Were

What I Wish CPAP Were

It is well understood that CPAP and its derivatives do not perform well[1]. I think much of this is caused by an inadequate base of research which is using unscientific underdeveloped methods[2,3]. And so I believe that why CPAP is ineffective stems from a blind disconnect between what the doctors and designers produce and what the people who need the help actually need to help them.

Someday, out of necessity, I may find myself driven to make my own CPAP machine. What I want is pretty simple. I wish they would make it. Start with:


Oh they will have specifications showing a Sound Pressure Level near the threshold of hearing. And I pretty well know how they made that measurement. Sound absorbing room, machine on a small platform almost suspended in space, hose going to outside the room.


I can almost discern every fan blade passing near the hose inlet!! The changes in speed are apparent to me. My brother who is a musician using BiPAP finds it necessary to run two fans in the room to somewhat mask the noise of the “tone changes” as the machine changes pressure with each breath! Can you guess, you doctors and designers, why there are so many arousals while using CPAP?


If memory serves (and I have been looking into this specifically for a while now) every comparison study done between strait CPAP and other more automated kinds shows strait CPAP causing less arousals. And indeed consistent sleep is what sleep is about. “Do Not Disturb” the signs say. May this be a “hint” to you, you doctors and designers, why there are so many more arousals while using xPAP?

I think the whole “pressure dance” idea to try to deal with breathing instability is simply a bad direction.

Most of the efforts which are using changes in pressure are attempting to deal with variance in inflammation, muscle tone, and/or respiratory gain. I find it better to follow my data and manage my lifestyle to deal with changes in inflammation. Modified EERS[4] helps me to deal with occasional times of respiratory gain problems while causing I do believe no increase in arousals. Simply I find that there are much better ways of dealing with these issues than “dancing the pressure all around”. Why are the doctors and designers of xPAP unable to implement these simple cheap and overall better solutions as I have? Probably every CPAP system made should be delivered with modified EERS “just in case” rather than letting intermittent times of hypocapnia harm the brain.

But even with “strait CPAP” somehow they find it necessary to “test” for “Clear Airway Apnea” using a short pressure burst. I find these most annoying. Often when I am just about to go to sleep my respiratory rate falls to the point where the pressure burst to test for “clear airway” meets my start of inhale – and – the resulting much larger breath wakes me up! Can you guess, you doctors and designers, why there are so many arousals while using CPAP?

The pressure changes I feel while using my machine are very fast so the motors must be very powerful I suppose. But another thing I find annoying while trying to use a stock strait CPAP is that every breath you take as you start to exhale there is a little nasty pressure increase apparently due to your outgoing breath meeting a fan which was spun up to meet the airflow needs of when you were breathing in. I do find that adding some “compressible air space” does help with this. Can you guess, you doctors and designers, why there are so many arousals while using CPAP[5]?

[1] https://honesttocpap.wordpress.com/2014/08/27/how-usable-is-cpap/

[2] https://honesttocpap.wordpress.com/2015/01/22/why-sleep-testing-fails-to-work-in-real-life/

[3] https://honesttocpap.wordpress.com/2015/01/27/sleep-testing-as-it-should-be/

[4] https://honesttocpap.wordpress.com/2014/09/28/now-using-modified-eers/

[5] http://www.sleepreviewmag.com/2014/01/a-missing-link-dr-barry-krakow-s-research-on-insomnia-and-sdb/

Neck Exercise to Improve the CPAP Experience

I have come to believe that much of the breathing instability (ventilatory instability) that I have had while using CPAP stems from an intermittent circulation problem which results in too little blood supplied to the brain stem where the central chemoreceptors are located. I regularly do neck exercise[a] and also many things to reduce inflammation to help with this and have found a lot of relief.

So the blood supply for the “old” brain (brain stem as fed by the basilar artery) comes mostly from the vertebral arteries. The vertebral artery enters the vertebra at C6 and exits from the lateral sides of the atlas (C1) then runs along the spine to enter the skull.

Yes there is “supposed to be” a “backup” supply available from the posterior communicating arteries however in around half of us that supply is deficient or lacking entirely.

I am now remembering all of those “tension headaches” I used to have and remembering the rock hard muscles in my neck that went along with them.

I know that I have severe sleep apnea with extreme hypoxia and that my neck has a large girth for my size. Could this large girth be development from all that stress related neck muscle tensing? Could the neck “grow” in an attempt to save the brain from toxins in the body? I am still trying to understand the large neck girth relationship to sleep apnea.

What if my tendency to process stress by tensing my neck muscles ends up compressing my vertebral arteries? That would appear to explain the headaches of old and why they often went away when someone rubbed my neck.

And perhaps vertebral artery compression explains my tendency to have chronic hyperventilation during the time of year I was robbed stabbed and beaten (traumatic stress). You see many of the central chemoreceptors which monitor the blood gas levels and send signals to the muscles which make me breath are in the “old” brain so if the supply of blood to that part of the brain is pinched off…

And what if arthritis is developing in that part of my neck? Anything causing inflammation in the area would likely also supply fodder to help pinch off the supply of blood through the vertebral arteries if the neck muscles tense I suppose.

As I thought about this I started doing some neck exercises[a] and I very much do hear the kind of snapping and popping I hear in my knees as I move them now.

What I know for sure is that I feel much better after doing the neck exercises. I also find it much easier to control my breathing after doing them.

[a]    [update: It is becoming daily for me to spend the first ten minutes on my treadmill two sets of 20 repetitions each of the exercises I describe below with the following modifications – head bob not with the “inch back” except the first set – “circles with the nose” going rapidly to very wide and slow and only about four times in each direction. I repeat this at night. I find I experience much less “snapping and popping” than when I started. (Tue Sep 29 19:42:40 PDT 2015)]

The exercises are very simple:

Sit up straight, with your head above your shoulders, but relaxed and then let your head roll gently forward. Then “bob” the head three times in this position. Then return your head to above the shoulders and let the head roll back all the way and rest in that position for a second. Then back to strait up and move the head back about an inch and repeat. Then move the head back one more inch and repeat. Then start again from the strait up position and repeat the whole thing three times.

Then back to the strait up position and move the head to look left and right slowly as far as you can comfortably go repeating ten times.

Then from the straight up position imagine a rod going straight back through your head entering just below your nose and let the top of your head rock slowly to the left and right as far as you can comfortably go about that axis ten times.

Finally starting from the strait up position make some small clockwise loops with your nose as you move your head as far as it will comfortably go to the right (three to four loops) – reverse direction and make counter clockwise loops all the way to the left – reverse direction and return to looking forward. Repeat with larger slower loops. Repeat with “as large as they can be” very slow gentile loops.

If I have the ability to lay down I do so on my back. I place my palms just above my ears and apply gentile pressure to “lift” my head away from the vertebral stack as I relax my neck. I simply hold this for thirty seconds to perhaps a few minutes. Note that I find this useful by itself if I awaken over breathing while using CPAP (quieting of the “urge to breath too much” is generally noticed within ten seconds).

The End of my Most Common Complaints With CPAP

Dry mouth. High heart rates. Cold feet (and other extremities). Headache. Aerophagia (air in the tummy) while using CPAP. Cramping in the legs and feet. Any or all if this often with an awakening. Amongst the thousands of posts I have read on the Sleep Apnea forums these symptoms appear most often as complaints.

And I have dealt with all of them.

But one I have rarely dealt with is “not being able to get enough air” during the going to sleep process with CPAP. The mystery – CPAP means “Continuous POSITIVE Airway Pressure”. In other words the pressure at the nose (and possibly mouth as well) is higher than the air in general. It must be EASIER to get a normal amount of air. So what causes this inordinate air hunger?

Well ventilatory instability is common in the literature about CPAP. And it has been posited that a separation in the blood supply between the peripheral chemoreceptors (blood gas sensors away from the brain) and central chemoreceptors (blood gas sensors within the brain) might well be the cause of such instability. Indeed this does seem to be the case with me.

I believe this is true because regular neck exercise (and other anti-arthritic strategies) along with the correction of forward head posture makes my tendency to over breath go away apparently by quenching the inordinate air hunger. Anymore if my nose gets stuffy I correct my head posture my breathing normalizes (it was too much) and the nose clears.

But where does all of this likely come from? I think the answer can be found by looking at how the brain stem gets its necessary blood supply.

The brain stem is the major signal distribution center of the brain. The cranial nerves stem from there and many may well play a part with sleep apnea such as:

– airway and salivation control (cranial nerve IX Glossopharyngeal) [apnea and dry mouth]

– tongue control (cranial nerve XII Hypoglossal) [postural apnea]

– Blood pressure, breathing, and aspects of digestion (Vegas Nerve (X)) [Respiratory control system gain. Blood pressure. Heart rates. Gastroesophageal reflux disease (GERD)? Arousal threshold (but probably elsewhere in the brain stem)? Aerophagia (air in the tummy)?]

– Biting and chewing (Trigeminal V). [Teeth Grinding (Bruxism)]

But indeed the central chemoreceptors (blood gas levels sensors) are in the brain stem and failing to supply the brain stem with enough good blood, for me, does indeed result in more breathing and higher heart rates.

The blood supply to the brain stem (basilar artery) is supposed to be redundant with parts of the Circle of Willis, specifically the Posterior Communicating Arteries, being involved. However in half of us the Posterior Communicating Arteries are simply lacking. But the brain stem is simply critical so its main blood supply comes alongside (more or less threaded through and protected by) our neck vertebrae by way of the Vertebral Arteries.

But what if there is inflammation in and around those vertebrae? When I first started my neck exercises I could hear and feel a lot of snapping and popping as I did them. Arthritic inflammation involved?! And when the snapping and popping did occur then there was a feeling of relief. So in my case I do believe inflammation is part of this story.

But often I find that stress brings symptoms even during the daytime. And I do remember many many tension headaches that I did have. And that if I could get the “rock hard” neck muscles to relax the headache would also go away. Perhaps if you compress the vertebra with excessive muscle tension there is less room to transport blood in the vertebral arteries?

But what if you slump the whole vertebral stack forward with forward head posture? Indeed with a consistency that amazes me correction of my forward head posture quenches my tendency to over breath and all of the symptoms associated. I remember on the forums that some had been given a cervical collar and had a better experience with CPAP use. Perhaps the correction of forward head posture (I find myself tending to do this even in bed) is why this was working for them?

So apparently a lack of blood from the Circle of Willis and an intermittently compromised Vertebral Artery path result in breathing and blood pressure increases as the brain stem holds both sensors and the signaling supplies for these systems. Since the rest of the body is likely to be at rest a normal level of carbon dioxide will not be maintained. When carbon dioxide levels get too low circulation especially in the brain diminish. The blood supply problem to the brain stem (and now the rest of the brain) would likely get worse from that. While I did use the term “inordinate air hunger” to indicate what is likely this condition perhaps the body does know best. The thing is we must have blood to the brain stem. That said I have found eucapnic breathing techniques during the daytime and EERS at night using CPAP helpful likely because they deal with the carbon dioxide maintenance issues.

But over all so far the neck exercises along with the other things done to control inflammation and arthritis in my neck along with the correction of forward head posture do seem so far more effective to eliminate breathing instability.

There is one more thing I have recently discovered that seems to help not only the breathing issues but also a tendency to have trouble getting to sleep and staying to sleep as well. I take three heaping teaspoons of activated charcoal in 14 oz of water just before bed time not eating for at least two hours before. I do not know why this works but it is amazingly consistent and since there are no known problems with activated charcoal, well, why not?

Titration (SHOULD BE) a Constant Ongoing Process

So I get my CPAP and perhaps a year or so later I found that my weight had gone up, I felt bad, and the doctor looked at my data and bumped my pressure. A couple of years later and again I weighed a bit more, felt bad, and the doctor bumped my pressure.

Then I learned to do EERS[1] during my stressful times of year, moved to a safer city with more sun and great training hills, all while working with a dietitian and personal trainer. As time progressed I reduced my body weight by about fifteen percent. But as the hot weather of summer approached I was having considerable problems apparently with ventilatory gain, my sleep was being fractured by respiratory effort related arousals, and I felt bad.

They wanted to do an in lab titration.

But by this time several things were apparent to me:

  1. It takes time to get used to a new pressure (say a week to weeks).
  2. I sleep different every night so a very expensive one night shot seemed unlikely to fill the everyday bill.
  3. The “in lab” environment would be stressful and much different to me which would change how I was as compared to how I would normally be at home.

So the standard way of doing things looked unlikely to yield usable good results.

So I found out how to set my own pressures and modes and started to find what worked!

My current pressure was 15cm/H2O which seemed a bit high so I set the machine into “Auto” mode and tried a 13cm/H2O to 15cm/H2O setting. Snoring quickly moved the setting to 15cm/H2O and so “Auto” mode was thus eliminated as unusable.

Next I tried about a ten day trial at 13cm/H2O with improved results. How low can we go?

Next a seven day trial at 12cm/H2O with even better results. I kept going lower every seven to ten days until I got to 7cm/H2O where I saw some obstructive events once in a while over a three day period and decided to go back up to 8cm/H2O.

Each setting had some time for my body to adjust. And with the whole process taking some 65 days I really did believe that the lowest usable setting had been found (AHI running under two per hour).

As I continued to look at my data a few months later I saw and responded to the need to raise pressure as fall came. In winter I add EERS[1] to help with the ventilatory gain issues added by stress. Right now I am doing a trial without EERS as we are somewhat removed from the anniversary of the traumatic event which causes the winter stress and spring approaches.

If you start CPAP and they somehow get the pressure into a usable mode to start with that will be great for then. But then your body will start to heal – and – change!!! And so todays pressure will not apply so well a few months down the road. And all bets are off if there is a major life event in there somewhere (or perhaps even a large change in altitude).

Titration needs to be considered a constant ongoing process.

[1]: Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.

Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS).

Source: J Clin Sleep Med. 2010 Dec 15;6(6):529-38. Division of Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.

Link: http://www.ncbi.nlm.nih.gov/pubmed/21206741

The Need to Review Your Nightly CPAP Data

To get the temperature of the shower right we use the “data” from our built in temperature sensors to adjust the hot and cold water for a good temperature. No data we freeze or are scalded!

But in sleep medicine there seems to be a tendency to disregard the changes which occur over time. They let the patient “fly blind” into the crisis that will most likely be caused by slowly changing increasingly more ineffective Continuous Positive Airway Pressure (CPAP) therapy.

Last night was my 22,198th night outside the womb so I have had nearly that many of nights of sleep. Perhaps at the 10,000th night I started to have sleep apnea events. Some 8000 nights later I was looking at a report from a polysomnogram which told me that they found severe sleep apnea with extreme hypoxia. And so I began to understand why I was reading that report at a shelter where I was staying. Undetected sleep apnea had robbed me of my basic abilities to get things done and had thus fostered a severe crisis in my life!!!

For about the last 1,500 nights several times a week I have looked at my CPAP flow data to see how things are going with my therapy. Every night was different. I have noticed some trends. I know that my need for pressure will become less as summer approaches. I know that a hot spell will likely change how my therapy works. I know that too little or too much exercise can cause problems. I know that starting perhaps mid October to March I will need to use EERS[1] to blunt ventilatory instability resulting from post traumatic stress being added to the ventilatory gain induced by CPAP pressure during that season which is near the anniversary of a traumatic event.

Perhaps it is simply the fact that few if any doctors have had such intimate experience with a CPAP sleeper and so they assume that we sleep the same every night? As I have looked at my own data regularly for the last several years I can see how the events shown relate to how I feel and perform on the days proceeding. I have learned what obstructive events look like. I have also learned what to look for as indications of ventilatory gain issues.

And I have learned that I need to check my data!!

But the “normal” way to deal with CPAP in the clinical sense is to look at the CPAP flow data for a minute or two perhaps two times in the months following the arrival of the machine and then assume that “all is well” unless they see the person again regarding some health problem that they have.

But if CPAP therapy goes bad it tends to leave the person with a very fuzzy mind. Thus compromised they will be largely unable to do good self monitoring and even less able to respond well to a problem if they have one.

I suppose the answer to this is to obtain and use the data more. I know from seeing my own data how essential it is.

So what I wish they would do is to construct is a system where the nightly CPAP data flows to a central place, is analyzed, and then made available to both doctor and patient through a web interface with e-mail notifications. So the patient can supply that daily feedback and both can see problems that exist and are causing problems. So the problems do not get to grow into crisis. So the therapy can be enabled to work well. So that the person can heal.

[1] Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.
Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS).
Source: J Clin Sleep Med. 2010 Dec 15;6(6):529-38. Division of Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Link: http://www.ncbi.nlm.nih.gov/pubmed/21206741

Your Chances of Making CPAP Work

So we have looked at the numbers [1] and it is very clear that most often Continuous Positive Airway Pressure (CPAP) is found unacceptable or unusable by the time a year has past. Comments from those who use and administrate the use of CPAP that I have run across on the web indicate that the numbers get worse as the years progress.

So what are the chances if making CPAP work for those who need it? I think a lot depends upon the quality of the medical support that you are able to obtain. If you have little real support I believe you have a chance of about one in three of making CPAP work long term. If you have good medical support I believe that your chances raise to perhaps two in three. And if you yourself become involved monitoring your own CPAP therapy and making it a single part of a multifaceted pursuit of a new healthy lifestyle then perhaps eight out of ten times you would succeed with CPAP.

Since I wrote my little list of “What Helped CPAP Work”[2] I have also found that chronotherapy is helpful[3] and believe that it is likely that further work on eating well to facilitate a better microbiome[4] will also prove helpful.

While my first couple of years with CPAP proved fortunate likely due to high Apnea–hypopnea index (AHI) and Body Mass Index (BMI) (tends to limit ventilatory gain issues) by becoming a victim of crime and loosing much of that BMI CPAP then became much harder for me to use and benefit from. Had I not found enhanced expiratory rebreathing space (EERS)[5] I would likely have forsaken CPAP or simply died at about the seven year mark. As it is I may well last many many more years.

[1] https://honesttocpap.wordpress.com/2014/08/27/how-usable-is-cpap/

[2] https://honesttocpap.wordpress.com/2014/08/20/what-helped-cpap-work/

[3] http://www.amazon.com/Chronotherapy-Resetting-Inner-Alertness-Quality-ebook/dp/B007P7HZUE

[4] http://www.amazon.com/Microbiome-Diet-Scientifically-Restore-Permanent-ebook/dp/B00J1JPTNY

[5] Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.
Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS).
Source: J Clin Sleep Med. 2010 Dec 15;6(6):529-38. Division of Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Link: http://www.ncbi.nlm.nih.gov/pubmed/21206741

Sleep Testing as it Should Be

You can find a view many articles and videos about the current process if you like. This is what I believe the sleep testing process should look like.

In the future I imagine that you will start your sleep testing process with an on line class. You will read an article or two about the equipment you will be using with emphasis on how to put it on, confirm that it is working properly, take it off, and care for it over the week or two that you will be using it. Then you will view several videos and use some interactive learning tools to get a real handle on what is going on as much as possible from the web. There will be some on line testing and when you pass the tests you are ready for the next phase.

Then you are off to a class. With the help of the instructor you will indeed put on the equipment while the instructor makes sure that everything has proper placement and comfort. When the instructor is satisfied that you are able to use the equipment well you are certified and given the sleep testing equipment to take home.

Each night as you use the equipment when you do believe you have put it on properly you will punch a button on the equipment. This will notify a technician at the data gathering station that they need to look at your data coming in and see that everything is functioning properly. If so they punch button and a green light goes on letting you know that the test is beginning. You then go to bed.

The test will be for much more than one night but if sleep disordered breathing is discovered you will be shipped the proper CPAP machine (which you will have been already trained to use) and will begin a months long titration process. Indeed monitoring your own data and making guided decisions about changes in the way the machine functions to meet your needs will be ongoing as it must be.

Why Sleep Testing Fails to Work in Real Life

I believe that sleep medicine is so ineffective because the basic science has not been done. Indeed to this day we have no idea how people sleep in their own home in their own bed night after night.

Why Sleep Testing Fails to Work in Real Life:

My daughter put it well; “It is all about the setting”.

There are many noted problems with the sleep testing process:

False negatives! False positives! First night effect!

“The worst night of sleep I have ever attempted”! “I had to come back for a second try”! “This is my third test in as many months”!

The problem with the in lab polysomnogram (sleep test) is very basic and very simple and simply a deal breaker. The setting is wrong.

The problem is that we do not normally sleep in a lab. Our “native sleeping environment” is in our own home in our own bed. Due to the differences and stresses of the “in lab” rather than the “in home” experience the data taken in the lab is very very likely different than what we would find if we measured sleep in our own beds in our own homes.

There is no data I can find to show that the current in lab sleep test tracks with how we sleep in real life. It appears that there is no proof of external validity. The results of the test only represent how you slept in that lab on that night. How you actually sleep in your own home night after night is still unknown.

Our “in lab” experience is very very different from our in bed normal night at home experience. To expand upon this a bit some of the issues are:

We are in this lab at great expense which causes us stress!!!

To get and be there we experienced different before bed procedures and lighting than we normally!

We were placed in a different bed than we normally sleep in.

The room we are trying to sleep in has very different temperature profiles than what we experience at home in our own bed.

The room and building we are trying to sleep in has different sounds than we hear while sleeping in our own bed in our own home.

We are all wired up!!!

We are aware of the fact that we are under direct observation all night which can cause stress!!!

Our future livelihood may be greatly affected by the results!!!!!!

With all of the differences and stresses involved we may well be given drugs to help us try to sleep!!!!!!!!

So when will it be that sleep medicine addresses this issue? Would it help to at least stop calling the current test “the golden standard” perhaps?

We really do need to develop the equipment and procedures to move the sleep test into the home and find out how we actually sleep night after night. We simply do.