Sleep Disorders – Testing & Treating

August 26, 2017

Afraid to Look

Fear - Lions Tigers and Bears

Not surprising, it looks like the Sleep Disorders – Diagnosing & Impact article I wrote is going to take some time getting traction. People are slow to read it. My guess is that some are immediately jumping to the conclusion that they are going to end up having to wear a mask hooked up to a Positive Airway Pressure (PAP) machine. If this is the case and they’re a younger man, or a woman of any age, I suspect that there is quite a bit of fear over looking stupid and weak. It reminds me of the Wizard of Oz. You have to stay level-headed in the face of – ”Lions and tigers and bears, oh my!

So here’s the deal. If you have unresolved health issues, you owe it to yourself to at least figure out whether you suffer from Sleep Disordered Breathing (SDB). At least, quantify the problem. Later on, you can decide on the best treatment for you. As you’ll see, there are lots of choices. Using a PAP machine is just one of them.

Once you understand what your issues are, you’ll not only be able to get a sense for the possible health benefits in treatment, but you’ll be able to select the best option. If you have a badly deviated septum (crooked inner nasal passages), surgery may be all you need. If you have a narrow airway, you may be able to wear a Mandibular Advancement Device (MAD) at night are like dental retainers. If you have excess tissue at the back of the roof of your mouth, exercises for the tongue and face along with learning to play the didgeridoo may work. There are lots of options. I just hope that folks don’t choose the one where they look the other way.

Just How Bad Are My Sleep Issues?

Once I’d done enough research and realized that there was a strong probability that I suffered from disrupted sleep, the question arose as to how best to quantify the problem. I felt the better I understood what was behind my sleep issues, the better off I’d be in deciding how to treat them. In response, I opted for a three-prong approach. By the way, see Sleep Jargon for definitions.

First, I decided I would have a sleep study at highly regarded sleep center to determine just how bad my sleep was and what seemed to be my main issues. As it turns out, I don’t have a lot of central apneas where the brain just stops sending the signal to breath. For those for whom using a PAP machine is unpleasant, this is good news. Hypopneas and other irregular breathing seen in my study are more likely fixable using alternate approaches. The only way to know the type and extent of breathing disorders is with a good sleep study.

Second, given that my sleep disorders centered on obstructed breathing, I reasoned that seeing one of a handful of Ear Nose and Throat (ENT) doctors that specialized in sleep made sense. In consultation with Dr. Krakow from the Maimonides Sleep Arts & Sciences after my sleep study, Dr. Krakow commented that although major surgeries like tongue size reduction, or removing excess tissue from the soft palette often had limited benefit, surgeries that cleared major nasal obstructions along with pinpoint micro-surgeries, as in the ones done by Dr. Steven Park, frequently worked. At a minimum, I figured that an ENT sleep surgeon could help me better understand what the physiological issues were.

And thirdly, I thought a visit to a myofunctional therapist may also be instructive. Myofunctional therapy involves doing tongue and facial exercises in order to improve breathing and alter facial structure. In Myofunctional Therapy to Treat Obstructive Sleep Apnea , targeted exercises lowered the Apnea Hypopnea Index (AHI) by 50% in adults and 62% in children. Unfortunately, we don’t know if much of the improvement seen was mostly in folks with sleep obstructions or whether those that had central apneas (brain stops sending a signal) also saw improvement. Nonetheless, I figured that a visit to an expert myofunctional therapist like Joy Moeller could help me determine the extent of my issues and if exercises could help. The fact that I’m currently hanging out in California near her business along with her giving free one-hour diagnostic consultations made this decision even easier.

In-Lab Sleep Studies

Sleep Study Wiring

Nowadays, you can have a sleep study done in a lab or at home. Let’s take a look at in-lab studies. To begin, my insurance company follows the AIM Sleep Disorder Management Diagnostic & Treatment Guidelines to determine when the better in-lab sleep study will be covered. Given that the cost to insurance for an in-lab study is about $2,400 ($900 when you’re paying out-of-pocket), it makes sense to take the time to find out how a person can go about getting coverage.

More specifically, there are four “Types” of sleep studies depending on the number of parameters monitored and whether a technician is present. The Type I study I had done at a lab used 6 electrodes on the top of the head to monitor brainwaves. There were 2 electrodes on each leg to watch for leg jerking and 2 by my eyes to watch for eye movement. Another electrode by my throat watched for snoring and 2 others by my chin looked for facial muscle relaxation. The remaining 2 electrodes on the side of my chest monitored my heartbeat.

In addition, a finger oximeter monitored blood oxygen concentration levels and a stretchy belt around my chest and another around my stomach watched for movement there. When you’re getting the initial evaluation study, a cannula like the ones folks wear that need extra oxygen, monitored flow rate at my nose with the inclusion of the thermistor to monitor breath temperature too. Finally, an infrared camera allows the technician to see into the room. By watching this array of variables, technicians can determine what stage of sleep a person is in, how well they’re breathing, along with snoring, leg jerking, and sleep position. I’ll talk about Type II, III, and IV studies in the Home Sleep Testing (HST).

Recommended In-Lab Centers

Stoneybrook Sleep Center
240 Middle Country Road
Smithtown, NY 11787
(631) 444-2500

Stanford Sleep Disorders Clinic
450 Broadway Street, Pavilion B, 2nd Floor
Redwood City, CA 94063-5730
(650) 723-6601

Maimonides Sleep Arts & Sciences
Dr. Barry Krakow
6739 Academy Rd NE Ste 380
Albuquerque, NM 87109
(505) 998-7204

Home Sleep Testing (HST)

Bedroom

If you want accurate data, it’s important to get Type II Home Sleep Testing (HST). In fact, the only significant difference between an in-lab Type I test and a Type II test is that the later is done at home. On the other hand, the Type III and IV home sleep testing is woefully inadequate. Here’s why.

Type III HST records a minimal number of “signals”. Specifically, airflow, chest movement, heart rate, and oxygen concentration are recorded. The fact that brainwaves are not monitored in Type III testing along with the fact that it is machine scored makes Type III testing really inaccurate. Note: Type IV testing monitors even fewer “channels”.

Sleep Stages & Normal Duration

  • Stage 1 – 5% (light sleep)
  • Stage 2 – 55% (brainwaves slow)
  • Stage 3/4 – 20% (delta brainwaves and deep relaxation)
  • REM – 20% (awake like brainwaves and Rapid Eye Movement)
  • The 4 Different Stages of Sleep

Without recording brainwaves, it’s impossible to know how many hours a person was actually asleep in a night, whether had spent enough time in Stage 3/4 and REM sleep along with being able to make accurate calculations. For example, I was awake close to 50% of the total time I was in bed. Since AHI and RERA scores are determined by dividing the number of events by the total number of hours asleep, all of my scores would be cut in half had I elected to use Type III or IV HST. In terms of scoring, in HST Type II and Type IV Comparison, the auto-scored AHI value of an example sleep study was 20 while the better Type II HST result scored by Jason from AXG Sleep Diagnostics LLC is 57.5. That’s a big difference.

Sleep Study Inflammation

In addition, cheaper Type III and Type IV testing don’t record leg movements, sleep position, eye movement, snoring, and so on. This is useful information. If your legs jerk a lot, you may be deficient in vitamin D, magnesium, or ferritin. If you only have disordered breathing on your back, then this is useful to know as the make “backpacks” to keep you on your side while you sleep. If you’re not monitoring brainwaves and eye movement, then it’s impossible to know whether you’re spending enough time in restorative Stage 3-4 and REM sleep. Snoring is helps in determining when an arousal occurs.

Being careful to make sure to have a Type II HST, there are real benefits to sleeping in your own bed. As noted, I had a strong reaction to the fabric softener used on the bedding at the sleep lab. The picture to the right was taken the next morning. You can see the inflammation in my face. I can’t help but wonder how this altered my breathing. In fact, Dr. Krakow noted that I didn’t have any “normal” breathing – asleep or awake. Was it because of the bad reaction? I don’t know but I wonder. In addition, Type II HST from AXG Sleep Diagnostics LLC is cheaper – $460 compared to $800 out-of-pocket for in-lab testing at a good center like Maimonides Sleep Arts & Sciences.

In-Lab Sleep Study – My Experience

Full Face Mask

The Maimonides Center in Albuquerque New Mexico consists of four separate bedrooms, two full bathrooms, and a glass encased control room fitted with two stations each equipped with a pair of monitors. Two Sleep Technicians each fit and then monitor a pair of clients through the night. In the morning, my Technician brought me into the control room where she spent about 20 minutes showing me what she had observed through the night.

The bedrooms are small but similar to what you’d expect in a hotel room. I had driven a long way that day so I elected to take a shower before getting wired up. After cleaning up, I was directed to a separate room with strong overhead florescent lamps where the Technician attached the series of electrodes – I’m glad I brought my blue light blocking glasses. The electrodes consisted of 1/4 inch gold-plated cups with an attaching wire. The Technician would place a dab of conductive gel into the cups before attaching the electrodes using tape to the face, legs, chest, and the top of the head. In the morning, I took a hot shower as the best way to get the gel to release is with hot water.

The maze of wires attached to your body all plug into a central box called an “amplifier”. As you transition from the fitting room to your bedroom, this box is hung around your neck as if it were some sort of gaudy pendant on a necklace. Once in bed, the box is connected to a big plug that leads into the control room.

For some, the experience can be a bit anxiety producing. I suspect this happens for insomniac more often as they already have a hard time falling asleep. Personally, it didn’t bother me a bit. After being through CIRS hell, a few wires dangling here and there was nothing. I was more worried about yanking on them too hard and damaging their equipment than anything else.

For the initial evaluation study, I wore a nasal cannula that monitored airflow and breathe temperature. During the “titration” study where a Positive Airway Pressure (PAP) machine is selected and calibrated, the cannula is replaced with a mask of your choice. Had I known then what I know now, I would have pushed for a “split-study” to save time and money. In a split-study, they spend the first half of the night collecting data on sleep quality and the second half figuring out what PAP machine works best and at what pressures.

Typically, sleep centers try to set up patients with the cheapest possible machine, a C-PAP machine or some slight variant of it. These machines supply a constant pressure regardless of whether you’re breathing in or out or how hard or gently you’re breathing. Given that I knew insurance wasn’t going to cover any costs, and not wanting to spend any time on a crappy machine, I instructed the technician that we should work to find the best possible machine right “off the bat”.

Unlike the typical sleep center, at Maimonides the Technicians make a point of trying to show that less sophisticated C-PAP, A-PAP, and B-PAP machines “fail” in providing adequate breath support to new patients during the titration study. As a matter of course, I think they try to “qualified” first time patients on ABPAP. If ABPAP cause too many apneas, patients are upgraded to top-of-the-line Adaptive Servo Ventilator (ASV) machines on their first titration study.

Unfortunately, I did not understand the qualification process well enough and ended up being “qualified” on a quality ABPAP machine. Even though I’d told the Technician to find the best possible machine and we talked about ASV, he continued to operate under their protocol of qualifying patients on ABPAP and only stepping up to ASV when there are complications. This makes sense in most cases, as it equips patients with the best possible machine that insurance will likely cover.

However, I’d found some evidence to suggest that the more adaptive ASV machines not only were more comfortable, but also were likely safer in the long term. From my perspective, there is something wholly unnatural about pumping up someone with pressurized air over the course of a night. As such, I’d prefer to use a machine that adjusts both the incoming and outgoing air pressures on-the-fly according to how I’m naturally breathing while using the minimum possible pressures to keep my airway open. This is just seems like good common sense. The newest ASV Auto machines are the only ones that do this.

So I’ve written a separate section on the types of PAP machines further down, but what was surprising about the ABPAP machine I was qualified on is how much it fills your lungs with air. The ABPAP has a range of pressures that it can select from for both inhalation and exhalation in order to keep your airway open. In other words, it’s fairly adaptive, way more than C-PAP and the like. And yet, when you go to take a breath, it feels like you’re being filled up like a balloon. Again, after being through CIRS hell, a little balloon filling wasn’t going to bother me much in terms of the study but long term it sure looks like ASV is better.

In fact, even the more adaptive ABPAP pressures can actually cause the incidence of central apneas to increase greatly as the person sleeps. When this happens, Technicians know to switch to the better ASV machines as insurance will generally cover patients with “complex” breathing issues. I only had 5 additional central apneas on ABPAP so the Technician didn’t titrate me for the ASV machine.

Days later, after I did more reading about PAP machines, I realized there was a significant difference between ABPAP and ASV Auto machines and that I would need to go back in to be titrated on the ASV Auto machine. At $900 for each titration, this was really unfortunate. I did what I could to explain my situation in order to hopefully get Maimonides to instruct Technicians to watch for the rare individual that comes in and says that insurance coverage isn’t going to happen and they want the best possible machine. By the way, they did not give me any price reduction on the second titration study.

In terms of the typical approach regarding PAP machine selection, patients are equipped with the least sophisticated machine, the C-PAP machine, whenever possible. The thinking is that why pay for a more expensive machine when the high constant C-PAP pressures blow open the airway. This same dollar driven thought process is used throughout; patients are given the least expensive machine that opens up the airway, doesn’t cause other major issues like central apneas or Expiratory Pressure Intolerance (EPI), and is tolerable by the patient.

In contrast, Dr. Krakow points out in Second Opinions and the Rise of REPAP: Part V that patients who opted to purchase ASV early on and out-of-pocket all “reported immediate benefits unequivocally superior to any prior PAP technology used in the past.” So when you talk to the typical sleep doctor or technician, they make it sound like C-PAP works perfectly fine and all you need to do is spend some time getting used to the fact that it’s jamming air down your throat irrespective of your individual needs. It’s what they’ve been taught. It’s an insurance driven model.

They don’t mention that over time, many develop more and more central apneas on C-PAP and other lesser machines. They don’t mention that the brain has its own lymphatic system for clearing toxins that operates at 7cm of water. When PAP pressures exceed this 7cm of water, as they often do, inter-cranial hypertension (brain pressure) may develop. They don’t mention Dr. Krakow’s evidence that the patients find the more adaptive ASV Auto machines to be “unequivocally superior”. Nope, cheapest is bestest.

Now I’m not saying that PAP therapy isn’t a good choice. There’s no question that it resolves sleep disordered breathing (SDB). The machines by their design intentionally provide enough pressure to keep the airway open. Better machines also keep you breathing during central apneas. Furthermore, there are plenty of studies showing benefit to those that use their machines. (Unfortunately, roughly 50% of CPAP users stop using their machines over time because they don’t provide the comfort of more advanced ABPAP and ASV units.)

By the way, to give you a sense for the amount of pressure a PAP machine uses, it’s somewhere in the neighborhood of 10 centimeters of water (0.14 psi). In comparison, the pressure in a blow-up balloon is around 800 mmHg (15.6 psi). In other words, the pressure in a balloon is over 110 times greater than what is used in PAP therapy.

Getting back to my experience using PAP therapy, besides being struck with how much my lungs were being filled with each breath, it became clear why PAP therapy is consider the “gold standard” for addressing SDB. When I awoke after a few hours using the machine, I could really notice how the back of my throat was wide open – even more open than during the day when I don’t have any breathing issues. It was an unusual but good feeling as I knew this meant I was getting all the air that I needed.

In terms of challenges with PAP therapy, I had issues finding the right mask along with some slight facial pain behind one eye. In terms of the facial pain, it was so slight I didn’t bother mentioning it to the Technician. I’m guessing it was a “one off” issue. Picking the right mask was another matter.

Nasal Pillow

I started with a “nasal pillow” that consists of air tube that rests on your upper lip just below your nose. The tube is fitted with two soft bellows made of silicone that neatly seal up against the bottom of your nostrils. It’s a cool design and tends to not get in the way as much for folks like me that have learned to sleep on their side as a way of minimizing obstructions.

The nasal pillowed sealed well to my nose and felt fine. However, I found that I was frequently being awoken by the sensation of a single larger air bubble squeezing along the underside of my upper lip before escaping between my closed lips. It was weird. As I thought about this lying in bed, I realized that with any nasal mask that the sinuses and throat will necessarily be at a higher pressure than the mouth cavity. If the seal between the mouth and the back of the throat isn’t strong enough, some of the pressurized PAP air in the throat will leak into the mouth and eventually escape between your lips.

In an effort to stop air bubbling out between my lips, I asked for a chin strap. This is a wide elastic band that circles under your chin and around the top of your head. As the name implies, its purpose is to help keep your mouth closed. It didn’t help.

As a consequence, about halfway through the night, I asked for a full facemask. Right away, I was struck with how much better it felt in terms of the pressurized air. With the nasal pillow, the pressure differential between my throat and mouth was really noticeable. With the full facemask, breathing felt natural because now all cavities were at the same pressure. I would never have thought this would be an issue but after trying the full facemask, I knew this was the better choice for me. Besides, I do sometimes mouth breath and this causes a huge “leak” out of the mouth on masks that only seal to the nose.

Unfortunately, there was only enough time to try one style of full mask. It was medium in size with a supple silicone double seal. It fit comfortably. What’s unfortunate is that even though the mask resolved the pressure issues, I found that I was being awoken as my checks billowed out slightly with each delivered in-breath. This only happened during deep sleep when I was really relaxed. Geez, I never would have guessed that blowing bubbles and ballooning checks were going to be my main issues.

Well, given the fact that I was never titrated for the better ASV Auto machine due to miscommunication, I’m going back. I plan on trying lots of masks and being titrated for both a ResMed and Respironics machine. Dr. Krakow says most folks like the ResMed but there is a minority that prefers the gentler algorithms in the Respironics. Regardless, both machines record breathing data that can be reviewed remotely by your sleep doctor who can then remotely change settings as required.

After a few months, I’ve been told I should return for a re-evaluation using my PAP machine to make sure everything is going along smoothly – no RERAs, no expiratory pressure intolerance (EPI), no lack of REM sleep, no sleep fragmentation, and that I subjectively feel like everything is OK. I’m not sure how necessary this is given the remote monitoring, the better quality machine, and the fact that Maimonides takes great care calibrating machine. In A Missing Link: Dr Barry Krakow’s Research on Insomnia and SDB, Dr. Krakow writes that “the sleep tech then must constantly override the auto mode (on ASV Auto machines), because only through a manual titration combined with the device set for auto mode do we gain the best chance to treat RERAs.” With time, I was told that a person who’s paying attention may elect to make slight changes to settings and then simply look to see if he/she feels better.

What Is A Sleep Study Like?

Dr. Krakow Consultation

Dr. Krakow

After the initial diagnostic sleep study, I had a consultation with Dr. Krakow. These are some points he made.

  1. Maimonides Sleep Treatement Center
  2. In the event I decided to pursue other options, I made sure to get referrals to an ENT and dentist.
  3. Dr. Krakow has a long history working in alternative medicine before he became a doctor. He ran a natural food store in the 1970’s and resultantly came into contact the full spectrum of alternative medicine perspectives.
  4. Given the fact that I have mostly obstructed breathing and I’m not overweight, there was a 70-80% chance that there will be a marked improvement in my sleep the first night using PAP therapy. In contrast, ENT surgery, dental devices, and other therapies, take longer and may never fully normalize breathing. Knowing what normal breathing and sleep feels like using PAP therapy is a very useful point of reference from which other sleep therapies can then be judged.
  5. ENT doctors focus on statistics and rarely recommend patients first use PAP to know what normal breathing is like before getting surgery. So statistically, while ENT surgery may look beneficial, patients may not actually be any significantly better off – there’s no point of reference.
  6. There are limited instances where surgery that addresses nasal obstructions will consequently alter PAP pressures. This is a valid argument in favor of forgoing using a PAP machine prior to surgery but only in cases where it’s clear there is an obstruction like a deviated septum.
  7. Dr. Krakow recommended using PAP at least a year before committing to surgery or other therapies. Not only will this help a person to feel better but it’ll also be clear to what extent PAP therapy is helping – as opposed to doing multiple therapies where it’s hard to attribute benefit to any one therapy.
  8. Other therapies like myofunctional exercises can help open an obstructed airway. If sleep quality worsens, this is a sign that PAP pressure requirements have changed due to the improved airway. In these cases, you may elect to go to a sleep center and get re-titrated. Alternatively, a person can pay close attention after increasing the inspiration setting between 0.2-0.6 centimeters of water and decreasing the expiration setting by 0.2 centimeters of water for a week – or try decreasing inspiration and increasing expiration by the same amounts. If you feel better with the pressure change, then use the new settings.
  9. While a good portion of the nasal passage can be observed with the naked eye and a bright light, it’s impossible to know if the entire nasal passage is open without using a fiber optic camera. The septum may be badly deviated further in, and so on. One simple test for a deviated septum is that it causes a difference in breathing between the two nostrils. Very rarely does fixing nasal pathology also fix sleep apnea – unless there is some major blockage.
  10. There is a complex relationship between good breathing and airway physiology. The tongue along with the 36 airway dilator muscles in the throat influence breathing quality. Many ENT surgeons that don’t have a track record of results are performing questionable surgeries in a quest to increase the diameter of the airway without ever really addressing the dynamic physiology.
  11. It’s not uncommon for improvements realized with surgery to regress back to baseline over time. The exception seems to be Dr. Steven Park who is performing advanced “site specific surgeries” and having very good success with these specialized surgeries – although Dr. Park does sometimes refer patients to Dr. Krakow because surgery didn’t work.
  12. Usually, mouth breathing during sleep is an unconscious reflex in response to not being able to breathe well through the nose. Unfortunately, a person does not get more air by mouth breathing. In some people, PAP will cause people to mouth breath that didn’t otherwise for unknown reasons and they will consequently need to use full facemasks.
  13. Regarding post nasal drip and MARCoNS, Dr. Krakow recommended prescription nasal sprays. He said this was the “standard of care” for folks with chronic sinus infections. Nasal sprays open the sinus passages, allow drainage, and often prevent infection. Flonase is the standard nasal steroid. Two other non-steroid, anti-histamine nasal sprays are Azelastine and Atrovent (Ipratropium). For post nasal drip that’s associated with “environmental or non-allergic rhinitis”, anti-histamine nasal sprays are recommended. Flonase is typically used for allergies and hay fever. Note: In Lectins are the Root Cause of Inflammation and Disease, Dr. Gundry points out that mucus is the body’s way of trapping lectins from food. Perhaps changing diet to no lectins would reduce post nasal drip.
  14. Over the years, Dr. Krakow has seen that there is a certain percent of the population that have remaining breathing issues even after with PAP therapy. He believes that for some folks it may make sense to look inwardly. He has seen phenomenal improvement in some people that have engage “focused psychotherapy”.
  15. Dr. Krakow recommended looking at sleep specialist Dr. Avram R. Gold’s work as emotional trauma is seen to affect breathing and more. Specifically, what is going on in my nose may likely be related to my emotional life. Note: While emotional blockages certainly can contribute to ill health including poor breathing, the risk is that the bountifully documented toxins in our environment as being even more important are ignored.
  16. For those with leg jerking and the like, it’s important to test Vitamin D, magnesium, and ferritin levels.
  17. ResMed machines are best followed by Respironics.

Evaluating Sleep Study Data

Sleep Study Report

In Type I and Type II sleep studies, a technician goes over every minute of the entire night of sleep. Using the data from all the sensors (channels), the stage of sleep along with central apneas, obstructive, apneas, hypopneas, and RERAs are marked on the study and tallied. At better centers, additional anomalous breathing is also marked out and scored.

Normally, the patient is provided with a sleep study report that summarizes the findings – Polysomnogram Report (PSG). Depending on the center, this report may be quite brief or full of details. The PSG Report from Maimonides provides lots of specifics.

Per HIPAA, you may also request a copy of your raw sleep data. For myself, I was especially interested in looking over this data. I felt I could get a better sense of my breathing issues and wanted to have this data for future comparisons. For example, I plan on taking up the didgeridoo and completing a 1-year myofunctional course to improve airway muscle tone. In addition, I want to experiment with other alternative SDB therapies. Without the raw data, it may be harder to determine if I’m making progress as there is a lot of nuance that can be gleaned when looking at the raw data. Note: I’m looking into finding a way to monitor flow rate as this seems like the key piece of data needed to get a sense for the quality of sleep.

Getting into the types of findings that can be made from sleep study data. As mentioned previously in “Sleep Disorders – Diagnosing & Impact”, if the nasal temperature and flow rate drop to near zero but the chest or abdomen belts indicate you’re trying to breath, then this is called an “obstructive apnea”. There is a airway blockage somewhere. On the other hand, if the nasal temperature and flow rate stop along with chest and stomach monitors, this is called a “central apnea”. Your brain stops sending out the signal to breath.

In the case of hypopneas, nasal flow tapers off 30% or more as a result of shallow breathing or a slow breath rate as seen by the nasal cannula. When this lasts for 10 seconds or more and either causes blood oxygen levels monitored by the finger oximeter to drop by at least 4%, or causes the person to wake up momentarily as seen on the brainwaves, a hypopnea event is recorded. However, sometimes the flow doesn’t drop by 30% or more but the disrupted breathing is still enough to cause arouse the person. These are classified as Respiratory Effort Related Arousals (RERAs) – see Sleep Jargon for definitions.

Notice that a RERA requires that the person’s brainwaves show they awaken even if it’s only momentarily. What about folks that have a blocked airway but are able to muddle through? Their blood oxygen doesn’t drop much and they don’t come up out of sleep. Technically, their flow rate could be well under the 30% for a hypopnia but if they don’t wake up and oxygen concentration doesn’t drop by 4% or more, it isn’t recorded at most centers.

Maybe they’re young and have a larger than normal lung capacity. Or maybe they’re just super tired and their body is resistant to waking. In any case, my point is that a person could have an Upper Airway Resistance Syndrome (UARS) blockage that last for hours wherein they’re effectively breathing through a straw that will not be recorded in either the older insurance driven Apnea-Hypopnia Index (AHI) model (apneas and hypopneas) or the newer Respiratory Disturbance Index (RDI) model (AHI plus RERAs).

If you’re smart and go to one of the three recommended sleep centers recommended, they may also look for other anomalous breathing. At Maimonides where I went, they also scored Respiratory Effort-Related Sub-Cortical Arousals (RERSCA) events which are like a RERA but you don’t experience an arousal and oxygen levels remain satisfactory. I believe this is an attempt to get at UARS breathing.

Here’s why RERAs and RERSCAs matter. In terms of my results, I had 56 RERA events lasting an average of 118 seconds each and 49 more RERSCA events lasting 106 seconds on average. These occurred in the 4 hours and 2 minutes of total sleep time that night. (I reacted badly to the fabric softener used on the bedding – always bring your own bedding and air purifier). When you do the math, this means that for about 3 hours and 17 minutes out of a total of 4 hours and 2 minutes (81%) of the time, I was in effect sucking air in through a straw. Furthermore and as a consequence of frequent arousals, I didn’t get any deeper Stage 3 sleep. Not good.

From the perspective of typical insurance coverage, they only care about apneas and hypopneas. I had 3 central apneas, 1 obstructive apnea, and 19 hypopneas total. In the 4 hours and 2 minutes, this works out to and AHI score of (3+1+19)/4= 5.7. This would be considered borderline OK by many sleep specialists. Looking at RERA and RERSCA, it’s clear that I’m being hammered way more than an AHI of 5.7 would suggest. Note: Make sure to read the AIM Sleep Disorder Management Diagnostic & Treatment Guidelines so you know what’s important to tell your doctor. Generally, insurance will provide coverage for a PAP machine if AHI is over 5 AND the person has indicated that they suffer from sleepiness, fatigue, and so on.

So while insurance doesn’t care that I’m being mildly suffocated most of the night (about RERA and RERSCA events), my body and mind do. Going to a good sleep lab not only will give you the data you need to really see what’s going on so you can evaluate treatment options, I also am of the impression that technicians are much better trained. To give you a sense of this, compare mine and my mother’s in-lab studies.

As described, I went to the highly regarded Maimonides center where they did a good job at capturing UARS events. My mother went to her local sleep center. For her, they recorded a total of 11 RERAs in 3 hours and 40 minutes of total sleep time. Now let me tell you, I’ve recorded my Mom’s sleep using infrared video and she makes me look like I’m “sleeping like a baby” in comparison. It’s really bad. And yet, they only scored a total of 11 RERAs. In comparison, I had 51 RERAs along with an additional 45 RERSCA events in the same time period! Equally important, she was only “qualified” on the antiquated C-PAP machine while I was “qualified” for a much more adaptive ABPAP machine – more about PAP machines later.

So I’ve made a couple videos of my rudimentary analysis of my sleep data. At Maimonides, they provided not only the data but a locked-down version of professional SandMan viewing software. Not all sleep centers are equipped to provide viewing software along with your raw data. Given that PSG viewing software is really expensive, make sure to check beforehand should you want to review your own data.

To help you follow along in the videos, I wanted to take a minute to talk about the most important measurement, flow rate. Regardless of whether it’s an initial diagnostic study or a PAP titration study, flow rate is always monitored. This data is so crucial that I’m thinking of making my own DIY sleep study wherein I only monitor flow rate along with videotaping myself and recording audio. Granted this isn’t enough data to determine the type of apnea along with most RERAs, but the ultimate goal of any therapy is to normalize the flow rate curve so if my DIY monitoring shows normal breathing, chances are that sleep quality will good too.


PSG Normal Breathing Details

So here’s a brief description of what “normal” flow rate looks like at the nostrils. To begin, it’s important to understand that the curve represents the rate of flow. In other words, whenever the graph is above the horizontal line drawn through the flat portions of the curve on each breath (when the person is pausing between breaths), then they’re inhaling. Likewise, any portion of the curve below the horizontal pause line represents exhaling. The greater the vertical distance (up or down) from the horizontal pause line, the greater the rate the person is either inhaling or exhaling.

Normal Breathing Flow Rate Curve

  1. Just coming off a pause and with the lungs empty, the rate of inhalation increases as the lungs easily fill.
  2. As the lungs fill, the rate of inhalation slows to zero at the horizontal pause line.
  3. Immediately after inhalation ends with the lungs full, the rate of exhalation increases as the lungs empty.
  4. With much of the air expelled, the rate of exhalation slows and eventually goes to zero.
  5. Having just taken a complete breath, there is a natural pause before the next in-breath.

PAP Machines

ResMed AirCurve ASV

  • Continuous Positive Airway Pressure (CPAP) – provides the same pressure for inhalation and exhalation every time.
  • Auto-titrating Positive Airway Pressure (APAP) – like CPAP but now the set pressure is automatically adjusted – inhalation and exhalation pressure is still the same but changes on-the-fly to ensure an open airway.
  • Bi-level PAP (BPAP) – one step up from APAP, these unit have two pressure settings – a higher pressure for inhalation and a lower for exhalation and is often used in patients who cannot tolerate CPAP. Bi-level PAP is typically used on people who can’t tolerate CPAP or who require pressures.
  • Auto Bi-level (ABPAP) – these units have 3 pressures settings. Just like BPAP, there is a higher pressure setting for inhalation and a lower one for exhalation. However, depending on sleep stage or body position, these inhalation and exhalation settings are automatically adjusted over a set range.
  • Adaptive Servo Ventilation (ASV/ASVAuto) – typically used on patients who cannot tolerate other forms of PAP therapy, have central or complex sleep apnea. Along with all the settings in ABPAP, ASV Auto monitors each breath and adjusts pressures to match the volume of air you’re inhaling at the time. Also, in the event of an apnea, ASV steps in to ensure breathing continues.
  • Humidifier – for comfort, it’s advisable to at least get a built-in humidifier, if not even a heated humidifier, with PAP machines.
  • Data Capable – along with the time spent using the machine, other channels like flow rate, mask pressure, leakage, and snoring are recorded. This information can be automatically sent to your Sleep Doctor who may then decide to remotely adjust “ramp” time along with pressure and humidifier settings. Note: Ramp time is a comfort setting that determines how much time before the machine delivers full pressure. This allows the person to fall asleep before full pressures are used. ResMed AirSense
  • PAP Analysis – You may elect to download and view your own data from your PAP machine.
  • Maintenance – I plan on replacing filters along with cleaning out tubing and the like with hydrogen peroxide often. Medicare PAP Replacement Guidelines

Insurance

Insurance

Some providers use the AIM Sleep Disorder Management Diagnostic & Treatment Guidelines. In general, most insurance companies follow Medicare guidelines. Medicare does not acknowledge RERAs. You can choke all night long and they don’t care.

Specifically, Medicare provides coverage when AHI is 15 or greater. Alternatively, coverage is provided when the AHI is 5 or more along with your having reported symptoms of sleepiness, brain fog, moodiness, insomnia, or if you have documented high blood pressure, clogged arteries, or stroke. Some providers like Blue Cross, Blue Cross Blue Shield, and Aetna will offer coverage when RDI is 15 or greater – see Sleep Jargon.

Make sure to learn about your coverage before you go in to see your doctor. Complaining about anxiety and depression isn’t going to get you a script for a sleep study. On the other hand, if you go in with a Epworth Sleep Test with a score of 16 or higher, complain of sleepiness, fatigue, and brain fog along with letting it slip that you have a hard time staying awake while driving, then there’s a damn good chance a sleep study will be prescribed.

In addition, making sure you mention several sleep related symptoms means you’ll only need an AHI score of 5 to qualify for PAP therapy. For those with obstructive sleep, it makes good sense to sleep on your back during the diagnostic study as a way of providing proof that you have sleep issues that merit insurance coverage. For most, sleeping supine (on your back) greatly increase the number and severity of apneas and hypopneas. Having said this, you may elect to spend a short period on your side just so you have some data for comparison.

Sometimes, labs will do a “Split Study”. When it’s clear that there are some serious issues early on, the Technician will set up the patient with a PAP machine about halfway through the night. This saves insurance money. As such, you should have already looked over mask and machine types. It is possible to “fail” on CPAP and other machines due to your subjective input – regardless of how good the data looks. I’m not sure, but you may be able to “fail” CPAP and other lesser machines right off by simply indicating that the high constant pressure totally freaks you out.

Whatever machine you’re “qualified” for, know that there is a generally a 90-day trial period. You need to use the machine at least 4 hours a night for 5 out of 7 days each week. Otherwise, insurance may simply take the machine away. Also, if you comment about the mask not fitting, or that the pressures are uncomfortable, this will result in the doctor making changes to the mask and machine without getting you one step closer to qualifying for a better machine. Personally, I’d worry about mask fit after I found the right machine.

I want to remind you that people that have had the chance to use state-of-the-art ASV Auto machines all comment on how much better they are. As such, unless a person really loves one of the lesser machines, it is important to indicate that you’re not seeing any improvement in symptoms. If you’re a nice person and make some conciliatory comment about how the machine sort of works, your doctor may interpret this as the machine is helping and consequently you may be denied insurance coverage on a better machine. Of course, I’d never tell you to scam insurance; instead, I’m trying to simply inform you of the types of guidelines that are used as I understand them.

Professional Treatment

Professional Care

  • PAP Machines – considered to be the “gold standard” because of their ability to normalize breathing.
  • Tongue Retaining Device (TRD) – a silicone bulb that looks like a pacifier as it holds the tongue forward. A TRD may be helpful if you have obstructed breathing indicated by snoring, a big tongue or tonsils, a tongue that drops back during sleep, or increased fat deposits in the tissues of the upper airway due to hypothyroidism. Obviously, a TRD will not help those whose main issue is central apneas. Side effects include tongue soreness and drooling. The cost is $300-$500 from a dentist or $30 on Amazon. Caution: Given what we know about significance of tongue placement on oral structure, I believe it’s wise to watch for shifting teeth and changes in facial structure.
  • AveoTSD Tongue Retaining Device

  • Mandibular Advancement Device (MAD) – just like with a tongue retaining device (TRD), a mandibulr advancement device (MAD) helps those with obstructed breathing indicated by snoring, narrow airway, large tongue, and the like. A MAD will not help those that suffer from central apneas. Dr. Mark Burhenne DDS from Ask the Dentist was able to dramatically reduces his AHI score to zero. On the other hand, in Efficacy of Mandibular Advancement Device , MAD only reduced the apnea-hypopnea index (AHI) from about 15 to 12. In Dental Device versus PAP Therapy, Dr. Krakow suggests that MAD can be helpful but often falls short compared to PAP therapy. This is not impressive especially in light of Dr. Barbara Phillips from U.W. of Kentucky and former President of the National Sleep Foundation maintaining that even an AHI of 1 is “deadly” – due to increased cardiovascular risk. Make sure to check out if you’re a good candidate.
  • Medicare Approved MAD Devices

      Dental Appliance SUAD SomnoDent

    • Herbst by Dynaflex
    • Herbst by Gergen’s Orthodontic Lab
    • TAP by Airway Management
    • TAP 3 Elite by Airway Management
    • Telescopic Herbst by Great Lakes Orthodontics
    • SUAD by Strong Dental LTD
    • SUAD Elite by Strong Dental LTD
    • UCLA Modified Herbst by Space Maintainers Laboratory
    • Medicare OAT Devices

    Good Mandibular Advancement Device Candidates

    • Those with lower PAP therapy pressure requirements.
    • When sleeping on your side improves the AHI sleep score.
    • When there are more hypopneas than apneas.
    • When oxygen desaturation is high relative to AHI.
    • Those that have a high AHI but are thin.
    • When apneas don’t last much longer than 10 seconds.
    • The 8-Hour Sleep Paradox

    DNA Appliance

  • Frenectomy – surgery to release the tongue so that is has full movement can help with everything from posture to oral structure.
  • Palette Expanding Appliances – rather than simply pulling the lower jaw forwad as in a MAD device, palette expanding appliances actually stimulates the upper and lower jaw to widen and grow larger. Looks promising.
  • Surgery
    • Uvulopalatopharyngoplasty (UPPP) – removal of excess soft palette tissue – not recommended.
    • Tongue Reduction Surgery – trimming down the size of the tongue – not recommended.
    • Pillar Implants – stiff strips are implanted into the soft palette to stiffen it.
    • Deviated Septum & Other Nasal Obstruction Surgery – these types of surgeries are generally helpful. However, although they may significantly lower AHI, usually they don’t drop AHI to zero.
    • Other surgeries – It’s important to understand that symptoms will often return after surgery as the surgeon’s approach of “making the hole bigger” completely ignores the dynamic interplay between the brain and muscles in the mouth. Make sure to find out what the long-term success rate is.
    • In addition to the issue of regression over time, it’s important to note that a surgery is considered a “success” when AHI is reduced 50% and AHI is less than 20. This is not a very compelling standard in light of Dr. Barbara Phillips, the President of the National Sleep Foundation, maintaining that even an AHI of 1 is a problem.

DIY Treatment

Throat Muscles

Sean’s Notes

A reader, Sean got me pointed in the right directions regarding sleep. Below is some of the information he sent me.

If you are indeed positive for a sleep breathing disorder (you already know that you choke when you sleep supine) then you need to determine where its happening. It can happen anywhere in the airway form the tip of the nose to the base of the tongue. Here are some things to consider:

  • Bilateral Nasal Valve Collapse
    This is when your nostrils flex inward when you inhale deeply. This restriction causes an increase in pressure which sucks your tongue into the airway. Try this test. Plug one nostril and inhale deeply. Does your open nostril suction closed into a snoring sound? I suspect it does and that’s why the nasal valves help you at night. Your nostrils are closing when you breathe deeply in later stages of sleep and that sets in motion a cascade of pressure changes. You know when you draw air through a straw awhile slightly crimping it, it can suction shut? Same thing happens in the airway.
  • Deviated Septum
    Most men have suffered a broken nose at some point in their life. Yours looks pretty straight but if you have asymmetrical air flow in your nose that could point to an anatomical obstruction in the septum. Again the nasal valves help this.
  • Enlarged Turbinates
    These are the humidifiers in your sinuses that warm air as you inhale. If you have allergies these can swell up and decrease airflow. They actually swell on their own at night naturally alternating from one side to the other. That swelling combined with nasal valve collapse can cause significant breathing issues.
  • Enlarged Tonsils
    While important to immunity, being able to breath is critical.
  • High Dental Arch
    This decreases the amount of space in your sinus and increases the space in your mouth. You want / need to breath through your nose so a high arch can reduce potential airflow.
  • Soft Flexible Palette
    Ehlers Danlos Syndrome (EDS) type 3 patients and multisuceptible HLA folks often have hypermobile soft tissue. This means that the palette can suction shut more easily. You mentioned your tongue occluding your airway when you sleep on your back but it could be the palette instead. Breathe in through your nose while squeezing your nose shut and you will feel the soft palette collapse.
  • Tongue
    The tongue is often the most obvious soft tissue that obstructs the airway. Particularly if it only happens on your back. It happens due to gravity when you reach sleep paralysis.
  • Brain
    It can also be brain based. You brain can forget to tell your body to breath. That’s called central apnea. Obstructive apnea can lead to central apneas as you repeatedly kill brain cells by choking for years at night.

Once you figure out where it’s happening then you have a whole variety of potential solutions. Here are some simple things to experiment with.

  • Tape
    Tape your mouth shut at night. By doing so you keep a good lip seal and suction can keep the tongue from falling back when you are asleep. Breathing through the mouth at night is bad for many reasons. It leads to the jaw dropping open, tongue swelling and retraction, dry mouth, dental issues and the air you breath is not humidified by the turbinates. You can read up on Buteyko breathing technique to learn why it’s so critical to only breathe through the nose.
  • Breathe Rite Nasal Strips (three bar extra strength)
    These do the same thing as your nasal vents but its on the exterior which increases the air volume inside. Plus you won’t reintroduce MARCoNS by sticking something inside your nose. The trick to using them is getting them in the right location and wiping your noise with rubbing alcohol to make sure it’s not greasy before sticking it on. If your nose is an issue this will feel like truly breathing for the first time.
  • Sleep Position
    Sleeping on your back is bad as you have already noted. Gravity is working against you. Sleeping on your belly however gravity is working with you to open the airway. Sometimes that’s uncomfortable so side sleeping is often recommended. It’s hard to control your position at night so many sew tennis balls in the back of the night shirt. Or wear a backpack filled with bubble wrap. Anything to keep you from rolling onto your back. I’m sure you can come up with a creative way to manage your sleep position.
  • Airway Exercise
    If you can strengthen the muscles in the airway it remains toned when sleeping. Many suggest taking up the digeridoo or a wind instrument. Even singing helps tone the airway. Curiously there are less sleep disorders in places like Holland where they use deeper guttural sounds in their everyday language.
  • Videotape Yourself Sleeping
    There is nothing better than watching exactly what happens when you choke or start to snore, wheeze or pause in breathing. What position you are in, how long does it happen, etc. A sleep study measures brain activity, oxygen, paradoxical breathing, airflow, carbon dioxide, and a whole mess of other data but simply observing your sleep can tell you a lot.
  • Sleep on an Incline
    Raise your head up with a wedge or if you have an adjustable bed raise up the head 10 degrees. Often that decreases blood pooling in the soft tissues and keeps airways more open. This is particularly helpful if you experience GERD at night. Acid reflux often happens when the tongue occludes the airway. The body increases inhalation to overcome the resistance but there is no air coming so the lungs draw up acid from stomach. Some even have to sleep in a chair to avoid chronic GERD.
  • Theravent / Provent Nasal Valves
    These are little stickers that go over your nose opening that let a normal amount of air in on the inhale and then block some air on the exhale. This creates pressure when exhaling keeping the airway open. It’s like C-pap but without having to wear the mask. The Provents require a prescription but the Theravents do not. Some people swear by them.
  • Allergy Medication
    With your sleep sanctuary, IQ Air and hepa vacuuming and diligent mold avoidance I do not suspect you have any allergens left in your house!? But if you do experience allergies treating that can vastly improve your airway at night. I’m not a fan of any medications but claritin redi tabs are relatively safe. And they can help a lot with stuffiness that comes at night from dust mites or whatever.

There are a lot of other options but these are all good DIY experiments to at least start with. Of course an official sleep study in a lab is the gold standard to figure things out but you seem like a hands-on kind of guy that can figure most of your issues if you understand what you are looking for.

Dr. Steven Park Podcasts

Dr. Robson Capasso of Stanford University on Sleep Apnea Surgery

Dr. Park

  • Podcast
  • The more overweight and older a patient is the lower the surgery success rates. A Body Mass Index (BMI) over 33 is problematic, as well as, being over 60 years old.
  • MMA surgery will lower the AHI to 10 or less 70-80% of the time if the patient has a BMI under 33 and is 60 years old or less. In 20-30% of the time, there is permanent numbness in the lips.
  • Sleep study results while helpful are dependent on the patient’s various conditions.
  • UARS is when a person wakes up more than 5 times per hour due to a narrow airway.
  • Although nasal obstruction surgery doesn’t improve AHI scores, sleep quality is improved.
  • Nasal obstruction surgery can help with C-PAP outcomes and possibly oral appliances.
  • If you use a wind instrument, you have to practice on a regular basis. In one study, participants practiced 25 minutes 6 times a week.
  • UPPP surgery should focus on restructuring the back of the palette opposed to resecting a lot of material. In 20% of the modern method, people feel like there is something stuck in the back of their throat.
  • There are serious risks with any surgery and Dr. Guilleminaulton discusses these.

Buteyko Breathing with Patrick Mckeown

  • Podcast
  • Yogic, Buteyko, and Feldenkrais breathing techniques are helpful.
  • Buteyko breathing is used to treat asthma and sleep apnea.
  • Asthma is often associated with CIRS. Since Buteyko breathing dramatically helps asthma, the suggestion is that it may also address CIRS.
  • Fatigue and poor concentration are associated with poor sleep.
  • Snoring and asthma often go together. Personally, I definitely snore more after being exposed to biotoxins.
  • The goal of the Buteyko method is to normalize breathing volume. Large chest and stomach movement, lack of a pause between breaths, and easily becoming breathless upon minor excursion are indicative of poor breath regulation – over breathing. Likewise, breathing through the mouth, taking at least one sigh every 7-10 minutes, constant sniffling, and irregular breathing are also signs of excessive breathing. Yawning with big breaths, taking large breaths in the pausing between talking, and other noticeable breathing movements. You have to observe this when the person is unaware.
  • There are many papers that show a link between nasal congestion (rhinitis), mouth breathing, snoring, and sleep apnea. If you can’t breathe through the nose, you’re going to mouth breath, snore, and have sleep apnea.
  • Dr. Buteyko found that by reducing, quieting, and relaxing his breathing lowered blood pressure and pain. This method has been shown to be effective for treating asthma in 6 clinical trials and is recognized by the British Thoracic Society.
  • In fact, rapid deep breathing causes health conditions including asthma to worsen. Over time, rapid deep breathing becomes habitual. The respiratory center of the brain maintains this excessively high flow rate even during sleep. Poor food, over eating, little exercise, and stress can cause a person to breathe too much – more than is required for metabolic function. This can recalibrate breath rates to higher levels.
  • A common misconception is that taking big breaths is good for a person.
  • With excessive breathing, the airway and blood vessels constrict and hemoglobin tends to hang onto the oxygen they’re carrying instead of releasing it into tissue. This is due to a lack of carbon dioxide (CO2) that causes oxygen to stick to red blood cells. This affect alone can result in feeling tired upon waking from sleep even without sleep apneas. A lack of CO2 over excites the brain.
  • Snoring is a result of passing a lot of air through a narrow opening. Often the approach is to force in more air or open up the airway either surgically or with a dental appliance. No one ever looks at reducing the amount of air to appropriate levels.
  • The first step of the Buteyko method is to unblock the nose if necessary. This is done by holding the breath. This increases CO2 levels that then triggers the body to open up nasal passageways. Specifically, take a breath through your nose and then hold it while swaying in your chair or move about until you’re rather air short. You then take calming breathes through your nose for 30-60 seconds before repeating the process. After about 4-5 times in a minute, the nasal passages will open almost without exception. This includes people with polyps and other nasal obstructions.
  • The second step is to breath through the nose. The Buteyko method helps individuals deal with the sensation of suffocating when they switch to nasal breathing. The method deliberately induces air shortage. The buildup of CO2 resets the body’s respiratory center.
  • Other steps deal with food, exercise, life style, stress, and sleep.
  • People with high blood pressure or heart issue should work with a professional.
  • An open mouth elongates the airways making them more prone to collapse during sleep.
  • Rhinitis that includes a blocked and runny nose with post-nasal drip leads to snoring regardless of apnea events. The Buteyko method reduces rhinitis by 80%.
  • Mouth breathing elongates the face. The tip of the lower jaw should be in line with the nostrils.
  • Even when the lips are sealed, if the teeth are more than 5mm (3/16”) apart, this will create problems.
  • Nasal congesting leading to mouth breathing may be the underlying cause to sleep breathing disorders.
  • I keep my mouth closed but drop my tongue and lower my jaw to elongate the airway at the back of my throat due to excessive post-nasal drip. Post nasal drip seems to be worse after meals. Also, it seems that my jaw is too small for my tongue.
  • Nitrous oxide (NO) is produced in the para-nasal sinuses. Breathing soft and slow through the nose produces the most nitrous oxide.
  • Breathing through the nose increases oxygenation by 5-15%.
  • Asthma and sleep disorders tend to go hand-in-hand.
  • Heavy breathing tends to cause the airway to collapse. Sleep apnea is a result of a too narrow airway in combination with taking large breaths. Like sucking through a straw, if you try to pull too much air, the straw will collapse. By re-training breathing, sleep disorders may be dramatically reduced.
  • Watch a video of your sleeping. If you observe chest or belly movement or hear breathing, these are signs of over-breathing.
  • Sleeping on the left side reduces acid reflux because the stomach valves are in a more close position.
  • Sleep apnea events are about twice as high sleeping on the back compared to the side. In part, this is because there is less breathing resistance on your back so you breath heavier and also because the lower jaw drops back.
  • Post nasal drip is a result of inflammation of the airway. Nasal breathing and controlling the breath can help to reduce post nasal drip. Over breathing (hyperventilation) reduces CO2 that then causes the nasal blood vessels to expand resulting in congestion.
  • Even during exercise, breathing should be in and out through the nose.
  • Just after waking, see how long you can comfortably hold your breath without feeling the need to inhale. Ideally, it will be 20 seconds or longer.
  • It takes 3-6 sessions with a trainer to get a good foothold.
  • ADHD and ADD like symptoms are common with sleep and breathing disorders.
  • http://buteykoclinic.com or http://buteykoeducators.org for lists of practitioners.

Orofacial Myology

  • Podcast
  • Joy Moeller
    Academy of Orofacial Myofunctional Therapy
    910 Via de la Paz, Suite 106 Pacific Palisades, CA 90272 (2 hours & 15 minutes from Morongo)
    291 S. La Cienega Blvd #409 Beverly Hills, California 90211
    310 454-9444 – office
    310 454-4044 – Joy Moeller cell
  • Find a Therapist
  • Myofuntional Therapy Exercises for Sleep-Disorder Breathing – by Sarah Hornsby RDH, Myofunctional Therapist
  • Myofunctional Therapy to Treat Obstructive Sleep Apnea: A Systematic Review and Meta-analysis”Current literature demonstrates that myofunctional therapy decreases AHI by approximately 50% in adults and 62% in children. Lowest oxygen saturation, snoring, and sleepiness outcomes improve in adults. Myofunctional therapy could serve as an adjunct to other OSA treatments. “
  • Myofunctional Therapy or Oral Facial Myology or Orofacial Myology Therapy (OMT) are synonymous.
  • OMT teaches how to breath and eat properly through muscle exercises. The exercises re-pattern the facial muscles. To begin, people learn to keep the tongue on the roof of the mouth and the lips sealed. Other muscles are trained and swallowing in taught.
  • Swallowing is a process of chewing properly and positioning food on the tongue before lifting the tip and sides of the tongue to push the food up and back instead of down and forward.
  • The teeth and bone can be moved by the tongue and muscles.
  • Training starts at once a week for 2 months, then every other week for 2 months, then every third week for 2 months, then once a month for a year. It takes time to make a permanent change.
  • Babies that bottle feed, use pacifiers, or Sippy cups pump their jaws to move milk while breast feeding is a suction action that moves the milk up and back.
  • A high and narrow mouth roof leads to sleep apnea.
  • The frenulum can interfere with breast feeding. It’s important to do exercises after a frenectomy.
  • People swallow between 500-1,000 times a day. Proper tongue action works to make a wide jaw.
  • OMT has been shown to reduce AHI events 40% along with snoring frequency and intensity.
  • Playing the didgeridoo 20 minutes exercises all the muscles lining the mouth and teaches circular breathing. Alternatively, the “Sports Breather” from http://pnmedical.com developed by Pam Nicholes.
  • Breathing Exercises
  • Obstructive sleep apnea events are caused by physical blockages while central sleep apnea is due to brain signaling.
  • Nail biting or chewing gum on one side causes an imbalance in facial muscles.
  • Children should be held during the first few months while the skull is very soft with the head cradled in the palm of the hand. Otherwise, putting children in hard furniture can lead to a malformed head.
  • Children that learn breathing and undergo OMT can completely reverse asthma and sleep disorders. Could it be that toxins inflame the nasal cavity leading to mouth breathing and subsequent issues?
  • Holding the head down and forward is indicative of breathing and facial issues.
  • Eating with the head up and back while watching TV leads to improper swallowing.
  • Raising the head of the bed by a few inches can help if a person sleeps on their back.
  • Tilting the head back slightly can open up the airway a lot.
  • Pillows should support the neck when sleeping on the back.
  • Dr. Park: Heightened sensitivity and chronic fatigue are commonly associated with UARS due to a small oral cavities. They never go into deep sleep and the brain is over-excited due to waking up all the time.
  • Extracting wisdom teeth (bicuspids) leads to a mouth too small for the tongue and muscle deformity.
  • When the teeth become crooked after orthodontic treatment is a sign of oral facial issues.
  • Mallampatti Score or Friedman Classification – stick the tongue out and say “ah”. There should be a clear opening.
  • IAOM to find an OMT
  • A neck diameter around the “Adam’s apple” larger than 17” for men and 16” for women should get a sleep study.
  • Tongue scalloping can be a sign of a TMJ issue wherein the tongue is acting as a “splint”. Simply getting the tongue out of the way may make the TMJ issue worse. The whole facial anatomy needs to be looked at.
  • If you use a dental appliance, it’s important to put your jaw back into alignment. Joy feels that the long term affect may not be good.
  • Some mouth breathers swallow a lot of air when they eat. Bloating after eating is a sign of this.

Dr. Krakow Videos

  • If you wake up with a headache, wake up with a dry mouth, or wake up in the night to urinate, then the chances of having a sleep disorder is about 90%.
  • Disrupted sleep increases the likelihood of airway collapse.
  • The compliance monitoring function on CPAP machines allow insurance companies to remove it with less than 70% usage (4 hours a night for 5 nights a week).
  • Need to select a sleep clinic that frequently works with “flow limitations”, or UARS (also called Respiratory Effort Related Arousals – RERA)
  • Not all insurance companies cover UARS (Medicare). In these cases, the doctor needs to write an appeal to the insurance company.
  • UARS patients tend to either use Bi-PAP or Adaptive-Servo Ventilation due to underlying anxiety that can trigger central apneas. It’s best if the sleep lab tries all these devices in a single night of a sleep study because insurance companies often don’t allow a person to try various machines.
  • Dr. Krakow likes to use Adaptive Servo Ventilation (ASV) on “complex” sleep apnea patients. These are patients that have some obstructive and some central sleep apneas that when put on C-PAP then have more central apneas. Dr. Krakow says ASV helps these “complex” patients a lot while other studies report patients don’t experience any additional symptom relief over C-PAP. Dr. Krakow also says ASV is an option for patients that have issues with other PAP machines like Aerophagia (swallow too much air), have too much arousal activity because they don’t adapt such as in Cyclic Alternating Pattern (CAP), get claustrophobic or panic attacks wearing the mask, or have Expiratory Pressure Intolerance (EPI). EPI prevents the patient from breathing out and this may result in them unconsciously pulling off the mask in the middle of the night. EPI can happen due to the higher pressures required in those with UARS also known as Respiratory Effort Related Arousals (RERA). The American Academy of Sleep Medicine (AASM) mandates all breathing events including UARS be eliminated. In addition, Dr. Krakow says that C-PAP therapy tends to cause patients to have more central apneas over time possibly due to lower carbon dioxide levels and as a result he likes ASV. My Note: Mouth-breathers have lower CO2 levels, maybe mouth-breathing contributes to central apneas?
  • Adaptive Servo Ventilation – What’s next? by Anita K. Simonds
  • A Missing Link: Dr Barry Krakow’s Research on Insomnia and SDB
  • Second Opinions and the Rise of REPAP: Part V

Creating an Interdisciplinary Dental Airway Team

  • Podcast 6
  • Dr. Mark Cruz – dentist and chiropractor – Dana Point, CA near Laguna Beach
  • Airway Course– airway training for physicians
  • An ENT needs to ensure the upper airway is working well before using a dental appliance, C-PAP, or any other therapy.
  • Sleep Team: Sleep Physician, ENT, dentist
  • The Uvulopalatopharyngplasty (UPPP) procedure harms the patient long term with lukewarm outcomes. UPPP is when soft tissue at the back of the throat and roof of the mouth is removed. Dr. Park: Surgeons are often too conservative and this leads to poorer results. The concern over food and liquids entering the nose when eating after this type of surgery is small and most often gets better with time.
  • A dental appliance is only a temporary fix to stabilize the patient and then an ENT or Orofacial Myologist or some other discipline needs to solve the underlying issue. Long term, dental appliances may make the problem worse.
  • MAD devices require the use of a morning repositioner that looks like a small retainer. Alternatively, rest your chin on your hand while sitting on the toilet as in the “thinker” pose.
  • Start MAD at 50-60% and work up slowly. Initial pain should decrease over time as the jaw learns to let go.
  • A good MAD allows your teeth to be very close together.
  • Mallampatti and Friedman Scoring – p. 57
  • Ask your dentist if you grind your teeth.
  • Ask your dentist if you have “lingual erosion of the upper (maxillary) teeth” – from GERD.
  • During deep sleep, ADH (anti-diuretic hormone) is secreted thereby reducing the need to urinate. If you have disrupted sleep, ADH will be low and you will have to urinate. (Others discuss heart stress raising the diuretic hormone ANP.) In CIRS, ADH is low even though salt concentration (osmolality) is high. Maybe this is due to poor sleep.

8 thoughts on “Sleep Disorders – Testing & Treating

  1. Did you end up purchasing an ASV machine on your own? I priced them once and they were insanely expensive as compared to even the best APAP or BiPAP machines

    • There is a big difference between APAP/BiPAP and ASV. Given the importance of quality sleep along with the fact that PAP therapy is the “gold standard”, I want to give my body the best possible chance. As such, I will be purchasing an ASV. If the possible benefits were less clear, I probably wouldn’t pay the roughly $2,000 for a machine. For those that simply don’t have the cash, my understanding of insurance is that a person should be able to eventually be qualified for ABPAP.

  2. Sorry for all the continued comments. But I’m also struggling with a sleep disorder in addition to (or as a contributing factor of) CIRS. In my case, my symptoms seem mostly neurological. I have been diagnosed with milld to moderate OSA (Obstructive Sleep Apnea) which I was treating with APAP. This didn’t work out very well because I seem to be among the small percentage of people with aerophagia (air in my stomach). So I switched to using a dental appliance which brought my AHI (Apnea-Hypopnea Index) to under 5 (at least according to the sleep study). My problem is that I have a very difficult time sleeping through a sleep study. I’ve had 4 of them now. I think the pressure/anxiety of knowing that I need to sleep to provide sufficient data coupled with the environment makes it difficult for me. It amazes me that the sleep study labs I’ve been in don’t take greater measures to ensure a good sleep environment. Low to no light, sound insulation, etc. At the last lab, I heard everything going on in the room next door to me (even though I was wearing ear plugs) where the patient was obviously having a split sleep study.

    Anyway, in my case I suffer from multiple spontaneous awakenings which don’t appear to be apnea-related. At least according to the monitoring equipment. The sleep technicians and doctors seem to be a lot more interested in the apnea events even though the spontaneous waking events are actually the bigger problem for me. It is also my “impression” that these are not apnea events–or at least not *obstructive* apnea events. For the longest time I was convinced that these were central apnea events, but the events were still not recorded as such during the sleep study. Still the events feel like what I would expect CSA (Central Sleep Apnea) events to feel like. That or some other effect that causes some sort of paralysis of the diaphragm during a certain sleep stage. I also suffer from what I’ll call “sleep vibrations” or “sleep tremors” in which I wake up feeling like a cell phone is buzzing inside my chest. You can put your hand on my chest at this point and feel nothing so this is clearly neurological. This is a symptom I see mentioned a lot in various Lyme, CIRS, and other forums. Doctors I’ve spoken with about this either shrug or tell me it’s “just anxiety” for which they’re willing to prescribe benzodiazepines which I won’t take. Through various experiments over the years, I’ve been able to confirm that “vibrations” are not the cause of the waking events, but a reaction to whatever is actually waking me up.

    So I had also been wondering if an ASV machine might address this even if it’s not by definition CSA or complex sleep apnea. But I’d want a better idea of whether this might work before I spend $4k on a machine. Unfortunately, I doubt my insurance (which is pretty good) will pay for another sleep study. The last sleep neurologist I saw was able to finagle this for my last sleep study by asserting that I had developed a sleep-related seizure disorder, but I doubt there’s any more room for finagling. So now we’re talking close to $3k for the sleep study if I chose to pay for it myself. Although my last sleep study was at one of the top hospitals in the Boston area, one thing I have not done (yet) is contact one of the sleep labs you’ve mentioned. Maybe that’s my next step.

    Maybe you covered this in your post, but I’m wondering. How will you obtain a prescription so that you can buy your own ASV machine? When you get your ASV machine, do you intend to configure it yourself have a provider do it? My understanding is that there’s a lot more to getting the settings correct on an ASV machine than on an APAP or BiPAP. Although you seem to be pretty adept at getting the information you need to do-it-yourself.

    • I don’t mind taking on-topic questions from time-to-time particularly when they’re just after writing an article and help to round out the article or include a personal account that can help others. Yours “fits the bill” so here’s my take on what you’ve written.

      Yeah, don’t take benzodiazepines. They’re wicked to get off.

      Your story is one large piece of why I felt compelled to write on sleep. It really sounds like you’re suffering from RERAs and other “sucking air through a straw” like breathing events. I wake up shaking and used to think it was CIRS related but now realize that this is an adrenaline rush as my body is responding to choking. I’m guessing this is the “vibrating” you’re feeling.

      As noted, this sort of throttled breathing really trashes health. If anyone doubts this, ask them if it would be OK if you tied them down, taped their mouth shut, and then stuffed tissue up their nose so they could still breathe but had to really struggle to get air. Assure them that you’d watch their blood oxygen levels so they never got much below 90%.

      This is exactly what’s happening with RERA and similar choked breathing that occurs during REM sleep. You can’t move because your body naturally goes into paralysis to prevent you from harming yourself in the dream state. At the same time, you’re sympathetic nervous system is on high alert because it knows deep (S3/S4) and REM sleep are when you start choking due to muscle relaxation – particularly in the throat that then causes an obstruction. Don’t ask me how it all works but your unconscious mind and body will wake you up when the breathing gets bad enough to cause drops in oxygen concentration. This goes on over and over and over all night long.

      So you went to a “top hospital” in Boston for your sleep study. Here’s what I think about “top hospitals”. My Mom has CIRS so bad that it would make most of us look like a bunch of whining babies in comparison. She goes to Mayo all the time. I wrote a concise note explaining CIRS years back to the experts at Mayo and we even got them to do a couple CIRS blood labs. And yet, when the labs came back hundreds of percents higher than normal, they just shrugged and said they don’t know anything about this. Even more telling, they made it clear that they weren’t interested in learning about a treatable highly inflammatory state that crushes the lives of untold millions.

      Regarding sleep studies, Sean has told me that good sleep centers are few and far between and I believe him as he seems very “buttoned up” and participates in sleep forums. As such, if it’s not one of the three sleep clinics I listed, then my guess is you got the usual treatment. As you noted, they focus on apneas and hypopneas because that’s the way they’ve always done it and that’s all that insurance is willing to be financially responsible for. Yes, they have to score RERAs nowadays, but my impression is that they do a poor job of it and then go about ignoring the results for the most part anyway.

      Regarding your study, you should be able to get your raw data and insist on software to view it as part of HIPAA but this may be a real challenge to accomplish. I have a pit-bull like personality wherein I think people know that if I don’t get what is fair that I’m just going to keep coming back at them until they do what’s right. It’s an edginess I think that’s a result of CIRS that says I’m just a bit crazy and also smart enough to make your life hell if you don’t either come up with a convincing argument for your position or give me what is fair and proper.

      But then I’ve digressed. Regarding PAP machines and costs, I paid $900 for a titration study at Maimonides – not covered by insurance. Given this, $3,000 sounds way off for a sleep study. You may want to take a look a Type II HST (Home Sleep Test) from AXG.

      In terms of APAP, this is a “suckie” machine – non-adaptive that blasts you with higher pressures. My guess is aerophagia (air in my stomach) happens for the most part with these “stone age” devices – CPAP, APAP, BPAP. On the other hand, I just got done with my ASV Auto titration sleep study and there is no comparison even with the fairly advanced ABPAP machines. ASV Auto is so much gentler. It took me all of 5 seconds to figure this out after donning the mask. The fact that it’s constantly monitoring flow rate and adjusting to your natural breathing levels really helps.

      • A few more questions to get the details right:

        – Did you convince someone at Maimonides to give you prescription for an ASV machine? Even though insurance won’t cover it, it’s my understanding that you’d still need a prescription to order one yourself.
        – Did you go back to Maimonides for the titration sleep study after purchasing your ASV machine? Was that an additional $900
        – Would you mind stating which ASV machine you got?

        Thanks again.

        • Yes, a person definitely needs to have a sleep study for whatever machine they intend to use as it’s important to know the proper pressure settings. Given the mix-up at the first titration study, I had to go back and be “qualified” for ASV for an additional $900. Ugh. To his credit, Dr. Krakow cared enough to actually be there during the start of the study at 8:30pm to make sure everything was right this time and he set me up with their senior Sleep Technician.

          Again, I don’t necessarily fault Maimonides for the mix-up during the initial titration study as I’m a really unusual case wherein I’m seeking to use ASV from the start. This is way outside the norm. The main take-away should be that it’s important to understand the differences in machines and insurance coverage prior to going in for a consultation or sleep study so that you are very clear on the type of machine you would like to be qualified on.

          Normally, sleep centers would only qualify a new client with C-PAP. At the typical sleep center, I’m guessing you’d really have to make your case for anything better well ahead of your study to the extent that you should probably have a note from your sleep doctor in hand when you show up for the study. The fact that Dr. Krakow understands the importance of properly treating RERAs with more advanced machines and they make the effort to put patients on the best PAP machine that is generally covered by insurance (ABPAP) is way above what is typical.

          During the night, I was able to be titrated on both ResMed and Respironics ASV machines. Often, its only possible to be qualified on one machine as the Technician needs to see you in lighter and deeper stages (especially REM) in order to make sure the machine is working well. Happily, I was really tired from driving all day so I got into deeper stages quickly. After only three hours, they had enough data for the ResMed machine and subsequently woke me up to switch to the Respironics unit for the remainder of the night.

          Ultimately, I liked the ResMed AirCurve 10 ASV (Auto mode) better and will be getting that machine most likely used for around $2,000. Given that Dr. Krakow can not write a PAP machine prescription for patients that are from out-of-state (AZ), I will be asking my local doctor to look over the titration study and write the requisite script.

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