Learning to live (and sleep) with severe Sleep Apnea | CPAP help and tips
I didn't know I wasn't breathing
I didn't know it, but for many years I was struggling every night to breathe. It turns out my body was jerking awake over 100 times an hour, my brain thinking I was suffocating. The problem is, Sleep Apnea doesn't wake you up fully so you don't remember waking up.
Sleep Apnea Overview
Sleep Apnea is a breathing disorder that happens when the breathing is disturbed while a person is sleeping. The person either stops breathing entirely or breathes very shallowly for a time quite a bit longer than normal pauses between breaths, from a few seconds up to minutes. These breathing incidents are called apneas.
There are three main classifications of apnea: Central, Obstructive and Mixed.
Central apneas happen when the signal from the brain to breathe is disturbed.
Obstructive apneas happen when the person’s airway is physically blocked, limiting the flow of air. When people with sleep apnea relax during sleep, the soft tissue of their throat can collapse and obstruct the windpipe. This can result in the complete restriction of breathing, or it can result in a partial blockage, making the person’s breathing very shallow for a time. The partially-obstructed apneas resulting in very shallow breathing are called Hypopneas.
Mixed or Complex sleep apnea combines central apneas and obstructive apneas.
Not every overweight person with sleep apnea has it because they are overweight. The sleep apnea may have started them on the road to weight gain. And this also doesn't mean if you're not overweight you can't have sleep apnea. Even skinny people can suffer from sleep apnea.
Sleep apnea symptoms and effects
Those who have untreated sleep apnea can suffer from a series of symptoms. Snoring is common, though not necessarily everyone who snores has sleep apnea and not everyone who has sleep apnea snores.
The constant interruptions to sleep and breathing can create low blood oxygen levels, disturb REM sleep and ultimately end up leading to depression, anxiety and concentration problems. Physically, it can disturb your hormone balance, cause weight gain, daytime sleepiness and lethargy. Sleep apnea left untreated can also contribute towards strokes, heart disease and even diabetes/abnormal blood sugar.
Sleep apnea and weight can be a viscous circle. It’s still debatable about which comes first, the apnea or the weight. Other physical characteristics besides being overweight can add to the likelihood of developing sleep apnea, such as having a small lower jaw (so the tongue has nowhere to go during sleep than collapsing into the airway.
But once you’re living with undiagnosed sleep apnea, the hormone changes can adversely affect your liver and your blood sugar levels, adding to the likelihood of gaining weight. And the more weight you gain, the more it contributes towards your worsening sleep apnea. This doesn’t mean that every overweight person with sleep apnea has it because they are overweight; rather, the sleep apnea may have started them on the road to weight gain. And this also doesn’t mean if you’re not overweight you can’t have sleep apnea. Even skinny people can suffer from sleep apnea.
This machine may save my life.
Sleep apnea diagnosis and treatment
Most people who have sleep apnea don’t even know they have it. After all, it happens when they’re asleep! It’s their friends and family who notice. It can be very scary to be sleeping next to someone you love and have them stop breathing, then jerk awake enough only to begin breathing again. And then sometimes it can be hard to believe. Don’t you think if you were waking up over and over all night you’d remember it?
The only real way to know that you have sleep apnea is for it to be observed and diagnosed through a sleep study, usually done at a local clinic and supervised by a specially trained technician. The data they collect from that study is sent to your doctor (generally a pulmonologist), who will prescribe the necessary treatment for you based on the sleep study.
If your apnea is more severe, you will commonly be prescribed with a CPAP or Continuous Positive Airway Pressure machine. Using this machine requires you to strap an airtight mask on your face, which is attached by a hose to the machine. The machine delivers air pressure into your lungs to help keep your airway open. Unfortunately, many people struggle with using their CPAP and neglect their apnea treatment.
If it is determined that you have sleep apnea, treatment depends on the severity of your apnea. If they’re not too bad (5 or less per hour), usually they will counsel you to avoid alcohol, sleeping pills (they can relax your throat muscles a lot), and try sleeping in a more upright position or learning to sleep on your side rather than your back.
Need help fitting your full face mask? This is the one I use.
Do you have sleep apnea?
Tips and tricks
Sleep is precious. Try it.
I love the way I feel after a night's sleep now rather than how I remember feeling before I started using my CPAP, and have a few little tips and tricks I've developed over time to help keep me motivated to use it.
• -Support helps a lot. My favorite forum for sleep apnea is CPAP Talk. There are a lot of newbies here asking many questions you may be wondering, and a lot of experienced CPAP users who can help. I highly recommend it if you're struggling.
• -If you have an animal or a small child, you may want to introduce them to your mask and machine so you don't scare them.
• -If you have a pet prone to shedding, like my cat, keeping fur out of your mask, hose and machine is very important. I keep my mask covered with a washcloth when I'm not using it to help keep it clean. Remember, anything that gets into that hose or machine may potentially end up in your mouth or lungs, yuck!
• -Some kitties love to chew on plastic. Mine sure does. I caught him making tons of little teeth marks on my hose one day while I was taking a nap. I didn't have a backup hose, and had to end up covering the holes in duct tape while I waited for my new hose. You'll notice in the pictures my hose has a cover on it. Once I covered the plastic, Franklin Cat wasn't interested any more. I also keep the hose looped over our headboard so he doesn't sit or lie on it while I'm sleeping.
• -If you have a humidifier, try it out with different settings. I'm a mouth breather and found that I had to set the humidity pretty high to avoid getting a mouth so dry it was painful and would wake me up! Some people prefer their humidifier to be set very low or even off.
• -Use distilled water in your humidifier. You can usually get this easily at the grocery store in one or five gallon jugs. The distilled water doesn't have any minerals in it, so as it evaporates in your humidifier it won't leave a mineral deposit behind.
• -Clean your mask, hose, humidifier, headgear, etc. regularly. I wash the snap-off silicone mask cushion at least every other night and usually every night. I use my own handmade liquid soap for this; I make myself a special batch with no scent. Keeping everything clean helps cut down on any kind of weird smell, and a clean mask always feels better on my face.
• -Wash any makeup, lotion or moisturizer off your face before going to bed. Having anything on your face can interfere with your mask making the proper seal and can cause leaks.
• -When you're getting fitted for your mask, don't be afraid to lie down and ask for a machine to test with it. Remember, your face and the mask will shift when you go from upright to lying down, and the mask that fit perfectly in the supplier's office won't necessarily be the one you ultimately end up with.
Isn't it normal to be tired?
I always thought I was an insomniac. I’d lie down for hours, doze off, get up and go pee five times, read my book for a while, get a little more sleep and finally drag myself out of bed feeling bleh when it was time to get up for the day. What I didn’t know is that I was dragging around with severe undiagnosed sleep apnea for who knows how long. I’m sure I had it when I was a teenager and through my 20s; I always looked at the bright energetic faces of my peers and wondered what it was like to have so much energy!
Some other signs I had apnea that I now recognize but didn’t know at the time were my preferred sleep position and the need to pee a lot during the night. I preferred to sleep on my stomach, which is common in those who have apnea, as it helps the airway not fall shut quite as much. Having to pee so much during the night was also a strong indicator something was wrong.
Each time my body jerked awake enough to clear the apnea, it would release cortisol and raise my blood pressure, thinking I was suffocating and I had to fight or run away to fix the problem. To deal with the raised blood pressure, my body would then produce urine, trying to release what it perceived as extra liquid in my body. So not only was I tossing and turning, struggling to breathe, I also had to get up and pee 4-6 times every night.
After living alone for nearly twelve years, my fiancé moved in and we got married shortly after. At this point, his sleep started suffering. I thought it was because I was so bad at sleeping and was disturbing him, but it was actually because I snored so loudly that even if he went into the living room, shut the door and turned on the TV, he could still hear me!
He’d been disturbed by my snoring before but always just used to go home and take a long nap after he stayed over on the weekends. Now he had nowhere else to go, and brought it up so we could try to come up with some solutions.
I’d been having health problems for years; I’d never been skinny, but when I was 18 I suddenly gained 65 pounds in three months, and no matter what I tried or which dr. I saw, I couldn’t seem to get rid of it. I tried all kinds of diets, exercises, living a very active lifestyle, and even being too poor to eat as a student (that’s the least fun way), and I was still very obese.
From ages 18 to 30, I visited more than a dozen doctors to see what caused this and if they could help me. I commonly heard the attitude that I was just fat and should lose weight and that was it. So imagine my surprise when I went in to see a new doctor recommended to me by a family friend. Within the first five minutes of meeting me and actually listening to me rather than dismissing me outright, she measured my neck with her hands, felt my lower jaw and told me she thought I had sleep apnea. She sent me for a sleep study that week.
Some more CPAP accessories
My sleep study
The study was actually not that bad. I didn’t know much of what to expect, except to be worried I wouldn’t sleep enough to make it worth their while to study me. For a sleep study, you show up in the evening to a clinic at about 8PM. The sleep clinic I went to was very nice; there were only three rooms and I was able to chose mine. The rooms were like fairly nice hotel rooms, except I hope the next hotel I stay in doesn’t have the night-vision cameras the sleep clinic has!
Once at the clinic, you change into your PJs and the technician wires you up. You wear wires literally pasted all over your scalp (with paste that’s not too difficult to wash out the next day), a strap around your chest to monitor respiration, a sensor under your nostrils to monitor air flow, and an oximeter on your finger. The oximeter was actually the part that annoyed me the most!
The way my study was structured, the first night would just be for a baseline study. Then if the dr thought I needed it, I would be sent back for another night to be titrated, or have the pressure levels tested while I was sleeping for a CPAP machine. The tech assured me they would only put a CPAP on me the first night if they thought it was an emergency.
I was actually able to sleep fairly quickly that night. The bed was comfortable, the tech was very nice and I was very, very tired. Imagine my surpise when the technician woke me up only an hour later, a worried expression on her face, and proceeded to fit the CPAP mask over my face! I had suffered 121 hypopneas in that first hour…essentially, I was breathing so shallowly that my blood oxygen level was in the mid-70s (i.e., not good). I didn’t learn that part until later, though.
At the point when she placed the mask on my face, my main feeling was relief. They had finally found what was wrong with me. When the tech work me up four hours later, apart from a couple sleepy adjustments to the mask, I hadn’t moved! They wake you up at five AM to leave the clinic, so I’d only had about five hours of sleep, four of which were on the CPAP machine. Despite that, I had SO MUCH ENERGY that day! It was incredible!
I had my second sleep study and titration about a week later, and three days after that I went to see the pulmonologist. I literally only saw him for about three minutes while he took a quick glance through my sleep study results and wrote me a prescription for my very own CPAP machine. There was an office connected to him that could fill the prescription and provide me with my mask, hoses, CPAP, carry bag, instructions, etc.
Since I am a mouth breather I ended up with the most common type of mask that covers both the nose and mouth. I find it fairly comfortable, through I did have to fiddle with it quite a bit at first. The worst part about it for me is that I am between sizes. As you can see from the photo, it comes very close to my eyes and if I don’t have it settled perfectly I can get leaks there that irritate my eyes. But overall that is a small price to pay for the luxury of a good night’s sleep! I never knew what I was missing until I had it.