I Have Severe Obstructive Sleep Apnea

I haven’t posted in a while as I’ve been doing Dan Neuffer’s ANS Rewire program and decided to focus on just doing that rather than providing updates on my progress. He even suggests not blogging about the illness as part of the program and I’ve been following his advice.

However, something significant happened part-way through the program: I did a sleep study in hospital during November last year and the results showed that I have severe obstructive sleep apnea (OSA). The sleep specialist believes this would explain why I’m tired all the time.

I had put off doing a comprehensive sleep study because an overnight sleep oximetry test I did at home shortly after falling ill over 10 years ago showed no abnormality in my blood oxygen level. The test involved sleeping with a machine which measures blood oxygen via a sensor clipped on my finger. In someone with sleep apnea, you would normally expect their blood oxygen level to dip significantly each time they experience a blocking of their airway, called an apnea. In my case the result was sufficiently normal that my doctor at the time didn’t recommend any further action.

I’m also not in a high risk group for sleep apnea since I’m not overweight, I don’t drink and don’t smoke. However I have noticed that when I lie on my back I wake up choking, and a partner recently noticed that I wake up in the middle of the night wheezing. On this basis, the sleep specialist I saw in November suggested doing a full sleep study.

The report he wrote on the study result was as follows:

The patient reported that the quality of his sleep was worse than usual. Sleep latency was 39 minutes and sleep efficiency 75%. Sleep was severely fragmented (arousal index 52/hr) and both stage N3 slow wave sleep and REM sleep were reduced. Occasional soft snoring was reported by the overnight technologist. Runs of repetitive obstructive hypopnoeas and isolated apnoeas occurred at a rate 49/hr and caused mild oxygen desaturations and arousals (minimum SaO₂ 89%). There were no significant periodic leg movements. The ECG showed normal sinus rhythm (mean HR 56bpm).

“Worse than usual” was an understatement; I had a really lousy night sleep during the study and felt terrible the next day. Apparently I don’t sleep well while wired up to a zillion electrodes in a hospital. But what it showed when I finally did get to sleep, was that I wasn’t sleeping deeply due to the hypopnoeas. My apnea-hypopnea index (AHI) of 49 being over 30 per hour puts me in the severe category. That’s like half-waking up almost every minute. Yikes.

The study showed that I am primarily experiencing hypopneas, which are partial constrictions of the airway that arouse the brain and prevent deep restorative sleep. My blood oxygen level was only falling to 89%, which is only just below the 90% threshold for identifying any problem if that was the only thing being measured. So I’m guessing this is why the overnight sleep oximetry test I did years ago didn’t show a problem.

Based on my experience, I definitely don’t recommend using an overnight sleep oximetry test to rule out sleep apnea.

However the more recent study result is great news because it’s something that’s actually treatable by conventional medicine. The first line treatment is using a Continuous Positive Air Pressure (CPAP) machine which pumps air into your airways via a mask. It’s not a cure, but apparently when used consistently with the right settings it does eliminate the symptoms.

My CPAP Trial Machine. This should ensure that no woman ever wants to sleep with me again.

I’ve been trialling a machine since early December last year and after about 5 weeks I have to say it’s taking a while to get used to sleeping with a mask on. I’m not thrilled about it as a permanent solution since I’d have to use one for the rest of my life. They are expensive, need ongoing care and maintenance, and at the moment I’m having a lot of trouble just getting to sleep with it. I’m going to persist though, because I want to see what impact the improved sleep that I do get has on my fatigue during the day.

Another mainstream alternative is a mandibular advancement device which is like a mouthguard that holds the bottom jaw forward to prevent the tongue collapsing the airway. I have a friend who has recovered from CFS and uses one of these and he seems very happy with it. A more radical option is surgery but the success rate is low and I don’t like pain, so it’s a last resort. There is also an implantable medical device available now to stimulate the pharyngeal muscles during sleep, but I’ll consider that an even laster last resort.

Meanwhile I’m exploring slightly alternative treatments, albeit ones verified by solid research.

One study published in the British Medical Journal found that learning to play the didgeridoo reduced symptoms of sleep apnea. Another study in the Journal of Clinical Sleep Medicine showed that playing a double reed musical instrument was associated with a lower risk of obstructive sleep apnea.

Given that I’m studying music, the idea of learning to play another musical instrument is quite appealing. The didgeridoo study noted that the compliance rate of the participants was high because it’s inherently enjoyable; something you can’t say about using a CPAP machine. So I’ve enrolled in a course to learn to play the didgeridoo at a local community college and started practising circular breathing each day, which I believe is what makes the didgeridoo effective at treating sleep apnea.

Another study published in The American Journal of Respiratory and Critical Care Medicine found that speech-language pathology exercises significantly reduce obstructive sleep apnea severity and symptoms. The oropharyngeal exercises they describe sound pretty boring though so I’m unlikely to comply with them for the three months the study ran for.

However another study published in The International Journal of Otolaryngology and Head & Neck Surgery showed that singing exercises improve symptoms of mild to moderate sleep apnoea. Again this is something that appeals to me given that I’m studying music and I can sing; although I haven’t taking singing very seriously. That’s all changed now though and I am now spending at least 30 minutes a day practising with Yousician Voice during my college holidays.

I am a little suspicious as to why I would have developed sleep apnea given I have none of the risk factors except for being a middle-aged man who currently doesn’t exercise. I certainly exercised a lot before falling ill, and was slightly less middle-aged at the time. The sleep specialist says it’s genetic but nobody else in my immediate family has sleep apnea and they’re all way more overweight than I am.

I’m suspicious of a possible link between mononucleosis, CFS and sleep apnea.

According to the WikiPedia page on Obstructive Sleep Apnea: “The Epstein-Barr virus is known to be able to dramatically increase the size of lymphoid tissue during acute infection, and OSA is fairly common in acute cases of severe infectious mononucleosis”. It would be nice to have an actual medical research reference for this, although I did see a doctor last year who appeared to use WikiPedia in an attempt to diagnose me. Nevertheless, the Epstein-Barr virus has also been implicated as a trigger for CFS, and according to The US Centre For Disease Control Epstein Barr Virus can reactivate. If it can also induce sleep apnea perhaps my body has got stuck in a permanently run-down state where poor quality sleep leads to viral reactivation that perpetuates the sleep apnea, leading to poor quality sleep.

This could explain why resting alone doesn’t cure the illness: my body isn’t actually resting when I’m asleep. It may also explain the flu-like symptoms that aren’t typically part of regular sleep apnea, and the fact that the nurse who conducted my sleep study said I had a mildly elevated temperature consistent with an infection. It could even mean that once the CFS is gone, the sleep apnea may reduce without me needing ongoing treatment for it. Especially if I become a didgeridoo-playing rock star who sings regularly.

There are lots of videos on YouTube by chiropractors claiming the title “Doctor” talking about the impact of diet on sleep apnea, and while they never cite any actual scientific research the diet they recommend is a relatively healthy one consistent with what I’m currently eating anyway: lots of green leafy vegetables, quality protein, nuts, seeds and fibrous fruit while avoiding carbohydrate, dairy and grains.

A study in the Brazilian Jornal Brasileiro de Pneumologia showed that exercise reduces the severity of sleep apnea and daytime sleepiness regardless of weight loss. With any luck the CPAP machine, didgeridoo and singing practise will break the cycle long enough for my body to recover to the point where I can exercise properly again. I have started doing some gentle daily yoga or Qi Gong as part of ANS Rewire, which I’ll write about another time when I’m further down the track with it.

I’m cautiously optimistic that I might finally be getting somewhere with this whole thing.