Results From My First Seven Months on CPAP

I’ve just passed seven months using CPAP, so here’s an update. It took a while for my nose to stop hurting when I first started using it, and fortunately Chris Kelly from AER Healthcare recommended I try paw paw ointment, which turned out to be a lifesaver. As a result, my compliance over the period has been over 98%. Here’s my AHI overview during that time as reported by OSCAR:

My AHI results using CPAP for 7 months

This graph shows the average AHI each night, and it ranges from about 1 to about 21. The overall average is about 8, which is still considered mild sleep apnea. My obstructive apneas and hypopneas are under control, generally averaging under 2 per hour, but I have central apneas that I didn’t have in my sleep studies, shown on the chart in pink. While an AHI of 8 might not seem too bad, the peak AHI on any given night can be up to 4 times as high as the average and that still adds up to a significant amount of disrupted sleep.

Symptom-wise, I still feel like I have a mild cold with a runny nose and the occasional sneezing, and feel tired all the time. My headache still persists, although not nearly as bad as before my sleep apnea was being treated, and it’s better on CPAP than when I was using the Mandibular Advancement Device. The pain is only occasionally strong enough for me to need to reach for painkillers. Still, it’s not totally gone either. I often need a lie down in the afternoon and will sometimes fall asleep briefly. I used to [intlink id=”166″ type=”post”]wake up feeling terrible after afternoon naps[/intlink]; now I feel slightly more refreshed that when I lay down. I rarely go out at night since I don’t really have the energy to socialise; and I got used to being homebound during lockdown when there was nowhere to go anyway.

Over the last six month I’ve completed my first semester of a Bachelor of Arts/Bachelor of Advanced Studies majoring in Music and Psychology at The University of Sydney, and I got excellent results. COVID lockdown definitely helped since I could rest rather than having to travel to lectures and tutorials all the time, and the final exams were all open-book meaning I didn’t have to rely on memory for everything. The disability unit gave me an academic plan with two week extensions on all my significant assignments, which ended up being essential or I just wouldn’t have had time to get everything in on time. However, it was a pretty miserable experience since the workload was intense and I spent all my time either studying, resting, eating or hunting for about 4 months straight. The day before the Psychology 1001 exam, I went back to bed to rest 4 times in between my final bouts of study.

So I’m somewhat better, but still not as well as I would like. I suspect one complicating factor is that my father died in February, and I found his death very traumatic. It also brought up some emotional issues in our relationship that I wasn’t complete with, and I’ve had pretty bad insomnia ever since. It’s possible that I’d be getting a better result from CPAP if it wasn’t for the insomnia. I don’t think it’s just the machine and mask keeping me awake because I lie in bed at night feeling exhausted, but not sleepy. I generally get up and watch Rage on ABC TV until the early hours, which is relevant to my musical studies, but lately I’ve been reviewing ANS Rewire and it reminded me that reading a book is better sleep hygiene. I’m increasingly aware of the health benefits of good sleep when I’m not getting it so I’ve been trying to break any bad habits like watching TV late at night, to maximise the refreshment that I get from the sleep I do have.

Last time I saw my sleep specialist he told me my case was “too complex” for him because I was exploring other treatment modalities he wasn’t familiar with such as palate expansion. He suggested I visit The Woolcock Institute and get their multidisciplinary team to have a look at me. I went back to my doctor to get a referral, and found she was on maternity leave. However, her replacement is young and seems enthusiastic to help me; she even asked if she could go through my red manilla folder of medical test reports that I take to doctors appointments, which I was more than happy for her to do. By contrast, another doctor I saw a few years ago mocked me for coming to my appointment with a file full of previous test results. He was just way to cynical to look into what was going on for me and this highlighted the importance of finding a doctor who is motivated to actually help you. You would think that the more experience a doctor has, the more likely they are to be able to help you; but it can work the other way if you encounter a doctor who is burnt out or cynical after years of medical practice.

Around the time my father died in February, my shoulders started hurting tremendously when I moved my arms, severely restricting my range of movement. He spent the last week of his life in palliative care unable to get comfortable in bed with nowhere to put his arms, and I couldn’t help but notice the parallel with my own inability to put my arms in a comfortable position in bed. While I clearly wasn’t dying, I felt as though all the muscles in my body were tense and it was an extremely stressful time for me emotionally. Maybe I’ve watched too many Gabor Mate videos, but there seems to be a real link between emotional stress and physical illness.

My new doctor sent me for an ultrasound on my shoulders and diagnosed me with adhesive capsulitis, also known as frozen shoulder. It restricts any kind of arm movement, and putting clothes on and off is very painful. Putting my backpack on to go to uni every day was a killer, but fortunately that only lasted 4 weeks before everything got locked down and all classes went online. Some nights I just slept nude and didn’t get dressed at all during the day while studying, relying on the heater to keep warm so I didn’t have to put clothes on over my shoulders; but this is only practical when I’m not required to leave the house.

I’m now seeing a physiotherapist who has given me a set of daily exercises which seem to be helping. It’s likely to take 12 months or more to fully recover my range of movement, and for the time being I’m unable to play guitar or bass because I just can’t get my right hand in the necessary position. The physiotherapy program could possibly evolve into some kind of graded exercise program; I’m hopeful that the CPAP is effective enough that exercise no longer wipes me out like it used to. Based on the management plan my new doctor wrote for me, she seems to understand that overdoing things isn’t good for me, and it’s a refreshing change to have a doctor whose eyes don’t glaze over when I mention chronic fatigue.

Meanwhile, I’ve been continuing my search for a treatment that actually addresses the cause of obstructive sleep apnea, hoping that it’s the underlying cause of my chronic fatigue. It’s been quite a journey so far and I’ll write more about it when I’ve got clearer on the answers I’ve found, but sleep apnea is a modern lifestyle illness with massive societal implications. Several dental practitioners have noted my underdeveloped jaws and suggested that the four bicuspid extractions and retractive orthodontics I had when I was 13 were the cause. I’ve considered many options to deal with this, and recently found that the Vivos DNA appliance which I started exploring last year is now available here in Sydney. I visited a dentist last week and had another CBCT scan and model of my teeth taken digitally to see whether I would be suitable for me. He thought I would make a great candidate but now I’m waiting to hear back from the company to see what they think.

While waiting for that I’ve been watching all the videos on Vivos’s Vimeo channel, and I’m finding it pretty compelling. Even if it doesn’t cure me completely, I think I’d regret not at least giving it a go before trying one of the more invasive options like AGGA, MSE with facemask, or MMA surgery. I’ve been studying all these approaches while on break from university, and will let you know what I conclude when I know exactly what my next step is.