Jamie’s Story – Sleep Hygiene


We are often reminded in life about the importance of a good night’s sleep. I absolutely love being snuggled up in bed, but I was unaware my health was being placed at risk every time I drifted off into my slumbers.

I was soon to learn that I had a condition called sleep apnea. This diagnosis basically encapsulated that I would pause or stop breathing whilst sleeping and often take shallow breaths that were not deep enough to fully oxygenate my body.

It sounds rather dramatic at first but it’s important to understand that everyone experiences this to some degree as our brain powers down and our muscles relax. The body will often compensate so it only becomes clinically significant if this occurs at an abnormal rate per hour or our oxygen levels drop so low that it’s deemed dangerous.

Those with Osteogenesis Imperfecta (OI) are no strangers to appreciating that our respiratory health is an important aspect of our care. We believe my sleep apnea is due to the excessive curvature of my spine (kyphoscoliosis). This restricts the lungs from fully expanding (RLD: restrictive lung disease) which is compounded by chest wall deformities from muscle weakness and previous rib fractures.

I was diagnosed following a lengthy admission to hospital for severe pneumonia. The nurse noticed that my oxygen levels and breathing pattern changed whilst asleep.

I mentioned to my respiratory consultant concerns regarding excessive daytime sleepiness during my clinical follow-up. They then decided to conduct some formal diagnostics by arranging a home sleep study.

The test required me to visit hospital one afternoon and be fitted with a special kit. It involved a wearable device around my chest and abdomen that would monitor how well my chest wall expanded. They fitted a small nasal cannula alongside asking me to wear a watch with a pulse oximeter that attached to my finger.

I left the hospital for home looking like a cyborg but it was great knowing that I would sleep in my own bed. The device was calibrated to begin remotely recording at 10 PM and stop at 6 AM. I was asked to remove the device the next day and return it to the respiratory department so they could analyse the results. It wasn’t the most natural sleep, but I did get a few hours which was enough for them to gather some data.

The device recorded various aspects such as my respiratory rate, pulse, oxygen levels and also identified noise that would indicate possible grunting or snoring.

The results did take several weeks to analyse but I tested positive for mild to moderate sleep apnea. This is usually scored using the Apnea-Hypopnea Index (AHI) to determine severity and inform if treatment is recommended. They suggested I would maybe benefit from a subjective trial of a Non-Invasive Ventilation (NIV) machine called a BiPAP.

The diagnosis did hit me hard as I was now expected to wear this mask connected to a machine every night throughout my entire life.

My adherence to wearing the mask at night was initially poor. I had become frustrated and would often take it off. It wasn’t until another hospitalisation due to my respiratory difficulties that I realised this machine could prolong my life and ultimately reduce long-term risks associated with sleep apnea so I persevered.

One interesting fact I discovered whilst researching was that fighter jet pilots also use a machine similar to BiPAP. They receive oxygen whilst flying over 10,000 ft but the G-force exerted during manoeuvres is so extreme that it restricts their chest muscles resulting in positive pressure being used to assist with breathing. I now go to bed feeling like Maverick from Top Gun.

It’s important to communicate with your allocated nurse over any difficulties with the treatment. I found online resources such as forums very useful as it was a great way to connect with other patients and share experiences. The start of any new medical treatment can make you feel isolated, so it was helpful to be reminded that you are not alone and most challenges were not unique.

There will always be an element of trial and error until you find what works best for your individual needs.

It’s difficult to state exactly when I specifically became comfortable wearing this mask but now it’s strange to sleep without it. The sound produced is almost rhythmic but somehow rather soothing.

I didn’t fully appreciate I was suffering from symptoms of sleep apnea until it started to be effectively treated. I would often awake in the morning feeling unrefreshed with a headache that was similar to a hangover. I believed this to be normal for everyone and was just a sign that I needed to reach for the coffeepot. These headaches were a result of dysfunctional breathing patterns. My lungs were not effectively expelling carbon dioxide (CO2) upon exhale so it would accumulate in my system. Another key indicator was the need to sleep during quiet times. It was easy to blame this on general fatigue from working 36 hrs per week rather than a medical issue.

My apneas have improved using the BiPAP but it was identified that I continued to experience regular desaturations, so the latest addition was a small amount of supplemental oxygen at 0.5 L whilst sleeping.

I use an oxygen concentrator which is around the size of a small suitcase. It takes room air and separates the particles to deliver oxygen so it mitigates any need for cylinders.

We know through independent studies that those with disabilities often incur extra costs which has certainly worsened under the current cost of living crisis. I was surprised to learn that you receive a reimbursement for the electricity costs of running an O2 concentrator under NHS Scotland.

Another great feature is the O2 service provider will also deliver a machine or cylinder to any location in the UK such as hotels so you can make provisions for travel such as holidays. They will also assist in developing solutions for air travel or trips abroad to ensure you continue to maintain as much independence as possible.

The small amount of O2 at night has made a massive difference to my health. I’ve an improved tolerance for exercise and I no longer desaturate especially upon exertion. My baseline oxygen sats at rest have drastically improved to be within normal range of a healthy adult.

I’m fortunate that it was identified in my situation. I would highly recommend if a bed partner complains of excessive snoring or notes any pauses in breathing that you seek further advice. Anyone that experiences excessive daytime sleepiness or morning headaches should definitely speak with their clinician.

The key to a goodnight was ensuring that I was breathing right!

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