All I Want For Christmas Is A Good Nights Sleep

It’s exactly ten years to the day since I started this blog. Oh my god, that’s a fucking long time to feel like shit every minute of every day. I’m so angry about the whole thing, there aren’t even words to describe it.

Fortunately, there is some hope on the horizon for me, so I channel that anger into action that will hopefully restore my health. It’s also just over 12 months since I was diagnosed with severe obstructive sleep apnea (OSA), which I now suspect is the cause of my malaise. It turns out that getting a really good nights sleep is incredibly important for your long-term health. The symptoms of CFS and sleep apnea are both like an extreme version of what athletes experience when they overtrain, the common link being that the body isn’t getting sufficient chance to repair itself.

I had no idea that I had sleep apnea because it happens when I’m asleep and I have no regular bed partner to notice the signs. In hindsight I can see some indications were present all along, like my inability to stay asleep on my back and waking up drooling with my mouth open. I realise now that I was occasionally waking up gasping for air because I simply couldn’t breathe and it was all gradually getting worse over time as I aged.

Sleep apnea could also explain, or at least have contributed to, the anxiety and depression that I experienced before I had CFS-like symptoms. It’s quite possible that the burn-out I experienced in my biomedical engineering career a few years before falling ill physically was actually caused, or exacerbated by, undiagnosed sleep apnea. This disease has ruined much my adult life and literally cost me millions in lost income. No wonder I’m pissed off.

Ironically, the last contract job I did as a freelance consulting biomedical engineer was for a company developing a device for home diagnosis of sleep apnea. They paid me a fortune but I was too depressed to want to do the work and my motivation kept slipping, so it was the last contract I took. I wish I had trialled the damn thing, but I spent much of that contract wishing I was down at the beach and not hanging out in an engineering office.

When I developed CFS symptoms, I dismissed the possibility of having sleep apnea after an overnight sleep oximetry test early on which showed no significant oxygen desaturation. That false negative led to 10 extra years of suffering before I finally wised up and had a proper sleep study done.

If you have CFS and haven’t had a polysomnograph to rule out sleep apnea, I highly highly highly recommend that you go and get one.

I’m a middle-aged man but I’m not overweight so I didn’t think I was at risk. This devastating illness can strike anyone, and up to 80% of individuals with moderate or severe OSA remain undiagnosed; let alone mild cases.

Since finishing my music studies at college a couple of weeks ago, I’ve been devoting most of my time to seeking a more effective treatment than the Mandibular Advancement Device (MAD) that I’ve been using since July. Using a biomedical engineering style root cause analysis approach, I’ve asked myself: If sleep apnea is causing my CFS symptoms, than what is causing the sleep apnea? The textbook answer is that the muscles in the nose and throat collapse during sleep, blocking the airway; and this gets worse with age as muscles lose tone.

But a proper root cause analysis wouldn’t stop there. That just leads to the question: What causes the airway to be too small to cope with the loss of muscle tone? My sleep specialist dismissed this question as just genetics and didn’t seem too interested in exploring further; he just wanted me to use a CPAP machine for the rest of my life. I’m not so keen, since I found it intolerable when I did a 2 month trial at the beginning of the year and don’t really want to have to sleep with a machine for the rest of my life. So I’ve been investigating other options, while coming to accept that I will probably need some kind of surgery or orthodontic treatment.

From a risk mitigation point of view, identifying and addressing (possibly by reversing) the cause is likely to be the most effective treatment with the least potential adverse side-effects. While I can’t prove anything, my best guess is that my sleep apnea was caused, or at least exacerbated by, the extraction-based orthodontic treatment that I had when I was 13 to correct what I thought was some pretty mild overcrowding and crooked teeth. I had my four premolars extracted along with an infant tooth which was blocking one of my adult teeth coming down. I had the braces for about 3 years while waiting for that adult tooth to fully erupt and it was very painful much of the time.

Going a step further with the root cause analysis, the next question is: What caused the overcrowding and crooked teeth? My best guess is that the overly soft western diet is responsible for the epidemic of overcrowded teeth in childhood as described by Sandra Kahn and Paul R. Ehrlich in their book Jaws: The Story of A Hidden Epidemic. Insufficient chewing leads to a lack of jaw growth, leading to overcrowded teeth. I can’t go back and change my childhood diet, so that’s as far as the analysis can usefully go.

I’m not an orthodontist, but if you extract teeth that nature thought were important enough to grow, retract the teeth in front of them and stick metal wires restricting all the remaining teeth during the period of rapid growth called adolescence, it seems logical that you’re going to impede the growth of the jaws. You’ll end up with an adult mouth that is too small for the adult tongue, and with nowhere else to go, the tongue can only move backwards, blocking the airway; especially during sleep. Hence obstructive sleep apnea.

This seems blindingly obvious to me; and yet many orthodontists disagree and often cite this scientific study: Evidence Supports No Relationship between Obstructive Sleep Apnea and Premolar Extraction: An Electronic Health Records Review. Some dental surgeons see a relationship however and there is research showing that the extraction orthodontic treatment reduces the size of the airway, so I’m going with the theory as a starting point and have been researching the impact of reversing orthodontic extraction work and expanding the upper palate on curing sleep apnea.

A couple of weeks ago Dr Dave Singh, the inventor of the DNA Appliance, came to Sydney to give a presentation to recruit local dentists seeking to treat sleep apnea, which I gatecrashed. The mRNA variant is particularly interesting to me because it combines mandibular advancement with palatal expansion, so I could potentially replace my current MAD with it and over time my sleep apnea would disappear. They claim it relies on biomimetics and epigenetics to grow the jaws naturally using latent adult stem cells without any pain, and have published a paper showing that it is effective in cases of severe sleep apnea. It sounds too good to be true; except that it’s not available in Australia yet. I invited the dentist who fitted my MAD to the presentation and I’m waiting to hear back from her and/or the company to see if any local providers are going to be offering it soon. The presentation was also valuable because it gave me the opportunity to meet a bunch of leading orthodontic and ENT specialists knowledgeable in treating sleep apnea.

Two weeks ago I also visited an orthodontist who specialises in non-extraction orthodontics, which is based on the idea that tooth crowding happens because the jaws are too small and need expanding, rather than the teeth being too large and needing extraction. It’s obvious that this is the better approach in hindsight, yet conventional orthodontists still don’t get it. He told me I had a small upper and lower jaw, and recommended I see an Ear Nose and Throat specialist to get Maxillomandibular Advancement (MMA) surgery. Ouch! That scared the shit out of me because it is the most radical surgery I know of for sleep apnea, albeit with a relatively high success rate. However I did already have an appointment with the specific ENT he recommended booked, so it showed I’m at least on the right track.

The MMA surgery would require 12 months of orthodontic treatment beforehand, during which time I would need to be on CPAP or my health is likely to continue to deteriorate. I may also need to have a palate expander fitted to open the suture in my upper palate and expand my jaw to make enough space for my tongue. It sounds painful but since my sleep apnea is severe, I’m likely to need to attack it from several angles.

I’ve been seeking a lot of second opinions, and finding a lot of helpful medical professionals. It’s costing a lot of money, but I’ve got to the point where I don’t care any more. I just want to get my health/life back and at least now I have a path forward. In hindsight I wish I’d adopted this attitude earlier and been more persistent and more willing to spend my and Medicare’s money on doctors and specialists sooner. It just seemed so pointless when nobody could tell me what was wrong and all doctors wanted to do was offer me antidepressants or tell me to exercise.

I have learned through painful personal experience that the awareness of sleep apnea and the impact it can have on a person’s life is pitifully poor, even in the medical profession. It’s way more serious than just not getting a good night’s sleep and feeling a little tired; chronic deep sleep deprivation can literally kill you.

The Christmas Present I desperately needed, but didn’t really want.

Given that everyone I see keeps telling me I need to be on CPAP, I finally relented and purchased a Resmed Airsense 10 Autoset CPAP machine last week. I feel some comfort in the idea that I may only need it for a year or two, and that using it in conjunction with my Mandibular Advancement Device will require less pressure, making the mask easier to tolerate. I’ve been using it now for just over a week and my nose is really sore a lot of the time. I’m using a Resmed AirFit P30i nasal pillow mask, since I found nasal pillows the least invasive and hence least disruptive to my sleep during the trial I had 12 months ago. On the up side, this mask has the air inlet on the top of the head meaning that nothing is resting on the upper lip, which may be important later when my teeth are sensitive due to the orthodontic work and/or upper jaw surgery. It was even on special at the company I did my CPAP trial through.

During the first week of CPAP, my nose got really sore to the point where it started to bleed. I got some really helpful advice from a guy who specialises in custom CPAP masks and decided I would tough it out in the hope that my nose will get stronger and stop hurting so much. So far it seems promising and I think my nose is starting to heal despite the nightly irritation, which will bode well for my future CPAP tolerance. The pressure required when used in conjunction with my MAD is much lower and more tolerable than what I experienced in my trail. If I don’t end up getting used to the stock mask, I know who to see to get a custom nasal mask fitted.

This week I saw an ENT surgeon who specialises in the N part of ENT, the nose. He put a camera down my nose and said I have a deviated septum and narrow airway passages, which he can fix with surgery. This should make CPAP easier to tolerate, although it won’t do anything for obstructions lower in my airway like behind my tongue. I’m still waiting for his surgery quote/proposal to get all the details and I will get a second opinion from the ENT who does the MMA surgery. Weirdly enough, he seemed unconvinced that palate expansion will do anything for the nasal airway, but I have since found research confirming that palate expansion does reduce nasal airway resistance which I will ask him about before proceeding. If doing palate expansion improves my nasal airway, I might not need the nasal surgery after all.

I’ve been spending a lot of my time this year, and in the last few weeks particularly researching sleep apnea, orthodontics, airway surgery and CPAP. This isn’t my preferred way to spend my time, but it’s vital to my health so I can move forward with my life. I’ve also just completed 3 years studying music performance full-time at a local TAFE college, and have been accepted into university next year to continue studying music. I’ve been playing a few gigs with a friend from college in an acoustic duo, but we’ve been limited by my health constraints since most music gigs are at night and I’m still just too exhausted much of the time. I hope the regular use of CPAP will change that next year so I can feel like a normal human being again instead of a zombie, and that orthodontic treatment and/or surgery will eliminate the need for the CPAP machine in the long term. It’s likely to be a long and painful road, but at least there is a light at the end of the tunnel.

For those of you with CFS who have had sleep apnea ruled out via a polysomnograph, I apologise that what started out as a CFS treatment blog has veered off course to focus on sleep apnea. For the time being my energy and effort has to be directed towards what makes me well, and that means sleep apnea rather than Chronic Fatigue Syndrome. I still recommend either ANS Rewire or The Gupta Program to anyone with CFS who has exhausted conventional medical treatments; but just be sure that you really have left no stone unturned. I feel angry that I wasted so much time on these programs rather than relentlessly pursuing conventional medical treatment until I found an answer, but that’s my fault not theirs. Unfortunately I can’t say either of them made me well because they couldn’t possibly address an airway obstruction with meditation, thought-stopping and lifestyle changes, especially since I wasn’t overweight. One thing I’ve learned that applies to both CFS and sleep apnea is to always put yourself and your own health first regardless of other people’s opinions; even if exactly how to do this isn’t easy to discern.

Happy Anniversary, Merry Christmas, and I wish you a Happy and Healthy New Year in 2020!