Shadab is a friend whom I have known for several years now. He was one of the first people who came to mind when I started working with Share Your Sleep Story, and luckily enough, he was enthusiastic to tell me more about his experiences with sleep.
DEALING WITH SLEEP PARALYSIS
One night in 2015, as a first-year undergraduate student, Shadab found that he was unable to move as he was waking up from sleep. He had just experienced a sleep paralysis episode. He describes this scary experience, where he is even unable to vocalize, as“I was feeling that I was awake, but I couldn’t move my body. Sometimes it feels suffocating.”
Upon diving deeper into his sleep paralysis experiences, Shadab mentions how the sleep paralysis episodes would occur when he did not sleep enough. There seemed to be no other pattern to them; they were neither recurring nor related to anxiety. They also had no relation to when they would happen. “Sometimes I’ve even fallen asleep in the daytime when I’m taking a nap, and it still happens. It doesn’t matter at what point in time. It has happened just 5 minutes after falling asleep,” he describes insightfully. Sleep paralysis is often associated with nightmares or hallucinations, but not in his case. However, he does add that his dreams might transition into sleep paralysis.
Despite the nature of his dreams, when you are unaware of what is happening to you, a sleep paralysis episode can be quite scary. “I realized that panic is good. The more you panic, the shorter it lasts. When I first started getting [them], I would panic so hard, would be awake in 5 seconds or so”, he recalls. “I would assume maybe it’s not so serious for me,” due to the short duration of his episodes. Looking back, he makes an interesting observation, “I don’t panic anymore, and now [the sleep paralysis attacks] last longer, like 10-15 seconds.”
But he is much better prepared now. He knows that he will wake up within a few seconds of the episode. In addition, the feeling of suffocation that used to once be present is no longer there. He shares,
I just [take deep breaths] and wait to wake up. I’m already awake, but I wait until I can move.
Shadab mentions that this breathing technique was something he developed himself, “because I could not do anything else other than breathing in that moment. I think everyone wakes up eventually, you just have to calm down during that phase.” He says that he found others online following a similar technique. “The goal is to not panic because I think it’s not very dangerous,” he shares.
Interestingly, he still experiences sleep paralysis when overworked or underslept. “During undergrad, I didn’t really care about sleep that much. That’s when I started experiencing these issues,” he reflects.
When Shadab first experienced sleep paralysis, he was in India, where he was able to consult a doctor about his experience. The doctor’s advice for Shadab leaned more heavily towards sleep hygiene rather than medication, and anticipated that this approach would be able to alleviate some of the stress for him. “[The doctor] referred me to a neurologist, but I never went because it was not super frequent,” he adds. However, the doctor’s advice worked like a charm. Indeed, as he started sleeping on time and sleeping “enough,” Shadab’s sleep paralysis did not haunt him as much.
SLEEP HYGIENE PRACTICES
Through his lived experience, Shadab has found what prevents him from falling asleep. He finds that he is sensitive to caffeine and tries not to have any caffeinated beverages very late in the day. “If I’m working very late, it’s hard to sleep because I’ve been on my computer for a while.” likely due to his sensitivity to blue light, a common occurrence in a world with ever-increasing screen time.
On the other hand, he has also found what works for him, such as dimming room lights, not eating just before bedtime, and reading before bed. He mentions how online sources have helped find what works. “I try to do all of them whenever I can, and I don’t know how much each of them helps. But I think all of them together do help. I know they help,” he shares.
“Even now, I don’t think I have [a] strict routine. But what I do have is the number of hours I sleep. So if I go to bed [at], say, 2 a.m. at night, I make sure I sleep for a little longer in the morning instead of waking up early. I think that that itself solves my problem,” he nuances.
A NEW DIAGNOSIS
After his undergraduate degree, Shadab came to Canada for graduate school at the University of British Columbia. His sleep was uneventful for the most part, till he started waking up at night several times. He adds that “I was [waking] up and I was feeling short of breath.” He did have sleep paralysis, but this seemed to be more frequent than his sleep paralysis. “Almost every day or every other day, I was waking up gasping for air,” he mentions.
He did some research about the potential causes of his shortness of breath and stumbled upon obstructive sleep apnea (OSA). He found that people who snore might also have OSA, but he wasn’t sure if he was snoring too. “I felt like I could also be snoring, so I put an audio recorder on my phone, which recorded me snoring sometimes during the night.” His audio recordings revealed intermittent snoring throughout the night.
He decided to consult with a general practitioner at the UBC Student Health Service. He explained that he had dry mouth and choking during sleep which caused him to wake up. He also mentioned that he was snoring, using the audio recording he had collected. The physician thought that his symptoms pointed to OSA, but did not seem to think it was an extremely urgent matter. Nevertheless, he was referred to a sleep clinic off-campus.
Shadab was able to go to the off-campus clinic within a month. He was given a Home Sleep Apnea Test (HSAT). “They gave me a device which I could bring home, and I would have to wear it and sleep for a day,” he explains. The HSAT also measures heart rate, breathing, and oxygen saturation levels. In addition, he says, “I also had to write how many times I woke up during a six-hour sleep.”
The HSAT is used to measure the Apnea-Hypopnea Index (AHI), which indicates the sum of apneas (pauses in breathing) and hypopneas (airflow blocks) lasting at least 10 seconds, experienced per hour of sleep.
In about a month, he had another appointment, this time with a respiratory therapist. “They showed me how many times I woke up during that study night. I had an AHI of 21.” This means he experienced 21 breathing interruptions per hour of sleep, indicative of moderate levels of OSA. But this did not translate to his conscious experience. “Throughout the 6-7 hours of sleep, I felt I woke up 4 times. But my AHI was 21, which means I was waking up more than that.”
So in spring 2023, halfway through his PhD, Shadab was diagnosed with OSA. The clinician at the sleep clinic explained his results and diagnosis. “It was a long discussion, probably an hour.” This is where he learnt that “waking up doesn’t mean you’re fully awake, but kind of awake. You go back to sleep very quickly, so you don’t realize you were awake.”
His diagnosis also meant that he could receive a Continuous Positive Air Pressure (CPAP) machine from the health authorities. A CPAP machine uses steady air pressure to keep airways open during sleep, alleviating OSA. “They taught me how to use it. They also told me how to take care of the machine because it needs to be washed very regularly.” The CPAP machine is, unfortunately, something he says that you need to use “throughout the rest of your life.” That being said, the CPAP machine has helped Shadab considerably, “[with the machine], my AHI now is around 1-2.”
GROWING AWARENESS OF SLEEP ISSUES
When Shadab shared his experience with OSA with his family, this led to thought-provoking conversations around sleep quality.
Lots of people have [OSA], but they don’t realize it because it happens during their sleep.
He has hit the nail on the head; indeed, around 28% of Canadian adults between 45 and 85 years old have OSA, and almost 93% of the people at high risk of sleep apnea have not been tested and do not have a diagnosis. In light of these statistics, Shadab brought awareness of a global problem to his family back in India.“They (his family) were feeling more aware, and they [said that] maybe they too should get a [sleep] test. Many of them shared their own experiences that sometimes they also wake up with dry mouth or that they sleep for 9 hours, but still feel sleep-deprived all the time. All these are symptoms of OSA,”he remarks.
Shadab adds that most people don’t realize how bad OSA is. “Maybe you’re not waking up every day feeling short of breath, but if you have OSA, you have less oxygen concentration in your blood while you’re sleeping,” making it more detrimental to health than it is on the surface.
ACCESS TO HEALTHCARE
Being new to Canada, Shadab said his experience was positive overall, largely because he was a student. “I didn’t have to really look for anything. I was informed about [the Student Health Service] when I joined [the university].” However, wait times for his various health issues remained a challenge. “Sometimes I was able to procure an appointment within the same week. Sometimes it was like a month later or a couple of months later.” He claims that none of his problems were urgent, so it was not a big source of stress, and goes on to explain that there is an emergency department for pressing cases.
Shadab mentions that the entire process from seeing the general practitioner to receiving his diagnosis took him a month and a half. This is in stark contrast to the people we have spoken to previously. For example, Sofia describes trying to contact clinics for 6 months to do a sleep test, Emily waited 4 years for a diagnosis, and Rebecca waited 6 years. Further, Emily and Rebecca’s clinicians were reluctant to attribute their varied symptoms to sleep issues, which contributed to them not receiving a timely diagnosis. On the other hand, Shadab’s symptoms were comparatively more specific to sleep, which led his clinician to believe that he truly had a sleep disorder.
In addition, Shadab’s experience was quite affordable due to the university’s health insurance. He tries to put together the details, “I think the device plus the consultation with the sleep clinic and everything was around $2,500. But I just had to pay around $30-$35.” The process of maintenance also seemed pretty straightforward. He explains, “You don’t have to do subsequent payments for anything. The machine has some pipes and filters which need to be changed every year (free of charge). My sleep clinic also said that I can get a free device every five years.”
INTERACTION OF OSA WITH SLEEP PARALYSIS
On some occasions, Shadab’s OSA interacts with his sleep paralysis, leaving him extremely helpless. During sleep paralysis, he is unable to move, while OSA is related to breathing difficulties. “The technique which I’ve developed for myself for dealing with sleep paralysis is deep breathing. But sometimes I’m not able to do that because I have a choking feeling because of the OSA. That’s when it gets a little more panicky, where I’m trying to breathe and trying to calm myself down in order to [wake] up, but I’m not able to do that,” he explains. Fortunately for Shadab, this experience is quite rare. “[It] has maybe happened [a] few times in [the] last few years, maybe 2-3 times,” he shares.
He adds, “This only happens when I’m not using the CPAP machine, usually when I’m travelling. Sometimes, I don’t like travelling with it.” Despite being a life-changing device, Shadab explains its limitations. “You have to take it around everywhere you go. And it’s] extra luggage on your flight. [It’s] not a very small device. It needs a separate bag of its own.” Sleeping while travelling is also an unforeseen challenge. He explains, “When I’m sleeping on a plane, I cannot use [the CPAP machine] because there’s no way to connect it to power most of the time.” This has led to him not taking the machine with him on short-duration travels on several occasions.
A NEED FOR CHANGE
After listening to Shadab’s story, I realized how fortunate he had been to get the correct diagnosis on both occasions, as well as timely treatment. Some of the things that went right in this story serve as important lessons that can further inform policy on sleep issues.
- Sleep education for primary healthcare providers: A key aspect of Shadab’s story is getting the correct diagnosis early on, which enabled him to take preventative measures. He managed to alleviate his sleep paralysis episodes without an official diagnosis from a specialist. Even without specialized knowledge and being unable to prescribe medication, the physician was able to suggest changes revolving around sleep hygiene, which, in Shadab’s case, worked well enough to resolve his issues. Similarly, during his OSA episodes, the physician’s timely referral was crucial. Overall, Shadab’s account highlights the importance of sleep education for primary healthcare providers and timely treatment.
- BC’s healthcare model as a pioneer for sleep issues: Several aspects of the BC healthcare system stood out to me from Shadab’s account. He vividly mentions, “In Vancouver, you see many sleep clinics in almost every locality.” In addition, the system in BC allows students to access provincial coverage via the BC Medical Services Plan (MSP) after 3 months, simplifying paperwork and minimizing “out-of-network” issues. Moreover, in January 2022, BC became the first province to offer select private clinics to bill the MSP for HSAT. This means that one can walk into a private clinic, and professional fees for the test would be billed to MSP. In most other provinces, this is an out-of-pocket expense. Further, BC has expanded access to HSAT, allowing equipment to be mailed to patients in rural and remote areas with instructions provided virtually. This is a service that many other provinces offer only via private, paid plans. Therefore, the healthcare ecosystem in BC enabled Shadab to get the treatment he needed without long delays.
On one hand, BC’s policy benefits people with sleep disorders; on the other hand, the province has made headlines for another policy change affecting sleep and health. Only time will tell how BC’s adoption of permanent daylight saving time (DST) will change people’s lives, given that science shows that standard time is more beneficial for health and safety. In fact, countries have tried permanent DST before, only for it to be repealed.
- Raising awareness around sleep issues: Shadab advocates for improving self-awareness around potential symptoms that may appear normal. He explains, “Sometimes, people don’t take snoring very seriously, even when they know they snore.” He’s quick to add that not every person who snores has OSA, but it is indeed the most noticeable warning sign. He elaborates with his experience,
I think lots of people could have OSA, but they just don’t know about it. It’s very hard to know, especially if you’re not sleeping close to someone else. You wouldn’t know you’re snoring or falling short of breath at night. I don’t think I knew the first day I had [OSA]. Probably knew a few years after I had it.
Through a combination of the right diagnosis, support, and self-awareness within BC’s healthcare system, Shadab is now able to manage his sleep issues quite effectively. This story highlights how provincial policies that enable timely, appropriate, and affordable access to sleep health treatments can meaningfully change people’s lives, because sleep affects every aspect of one’s life and should be treated as such!
