You Are Not Alone.
Don't Give Up
Co-founder of Alliance of Sleep Apnea Partners
About 15 years ago, I underwent a sleep study for Restless Leg Syndrome. When the study was over, I expected to hear something back in a week or two. Instead, the sleep doctor was waiting for me very concerned that my oxygen levels had dropped to 86%. Although, this didn’t sound bad or alarmingly to me, but my doctor was adamant that I start Continuous Positive Airway Pressure (CPAP) therapy immediately. I went to a local sleep doctor who explained why 86% was not good and that I did need a CPAP therapy. He sent me to a medical supplier who sat me down, showed me a machine, put a mask on my face, told me how to turn the machine on and sent me home.
I didn’t use it. I was embarrassed to wear it in front of my husband. Who wanted to sleep with Darth Vader? The mask leaked loudly with a very rude sound. Again, embarrassing. The hose was always in the wrong place. I do a lot of traveling and it was (and is) a real pain to take along. Honestly, I saw no reason to wear it because I didn’t feel any better and actually was getting less sleep than before.
Why didn’t I talk to my doctor about these problems? I tried. I explained that it just wasn’t working for me. He used a CPAP himself and proceeded to tell me that he washed his mask every night with lavender scented dish soap. “And I just drift off to sleep”—that was the extent of his help.
So, I went on-line looking for information on sleep apnea and CPAP therapy. Luckily, I found reputable websites and learned how untreated sleep apnea can affect your over-all health in detrimental ways. I discovered there were many different masks to try. I educated myself to the best of my ability and insisted on more information before finally finding a mask that works for me. And I did NOT go back to that doctor.
I also got involved in a sleep apnea group that has now evolved into Alliance of Sleep Apnea Partners. It has not been easy to come to terms with sleep apnea in my life. I found that I had to push for doctors and medical equipment suppliers to listen to me. I suffer from other health issues that might have been caused by being undiagnosed for so long. I still struggle at times, especially when it comes to traveling. I found out that my husband was fine sleeping with a masked wife. I found I had to be educated and vocal about sleep apnea. These two things give me better control over my sleep apnea.
I encourage anyone who suspects they have sleep apnea to talk to their doctor about it. If you have sleep apnea, do all you can to improve your situation. Don’t give up. You are not alone.
I Don't Take Sleep Apnea Lightly Anymore
U.S. Air Force veteran and teacher
I was diagnosed with sleep apnea about seven years ago. But I've only been in recovery about eight months now. Like a lot of people, I didn’t really take sleep apnea seriously for a while, because the effects don’t seem tangible until you have brain damage. So I pushed it off, thinking, “Oh, come on, that can’t be a real thing. Whether they say I've got it or not, it can't really be that big of a deal.”
Well, time went by, and I got to the point where I was showing signs of dementia. I would just be doing regular operations through the day, and I would just be missing things, there would be gaps of time for me. Then one day I went to take something out of the cabinet and then all of a sudden I was just standing there with my arm in the air and I can't figure out why. Was I reaching up? Reaching down? Do I have a cup? Did I put a cup away? What am I doing? Wow. And then I was like, “Okay, this is not good. There's something really, really wrong happening here.”
So I went to all these doctors, and they looked everything over.
I was having other health issues going on. I had post-traumatic stress disorder (PTSD), and I had an addiction, too. But I was going to the gym, I was eating right, I was trying to do absolutely everything I could to get my health in order, and it just wasn't cooperating with me. I wondered, “Why can’t I get healthy?”
I finally went to an endocrinologist. I mentioned to him that the Veterans Administration had diagnosed me with sleep apnea years ago but that I've got severe claustrophobia, so the devices they were offering wouldn't have worked for me. They would have put me into a tailspin, because I'd already had depression and anxiety for so long.
And he said, “Well, quite frankly, sleep apnea is your problem.” I was like, “What do you mean? It’s just sleep apnea.” And he said, “Yes, but sleep apnea affects literally every cell of your body.”
I was very fortunate that he recognized that I had mentioned sleep apnea and that he put it together, because he is the first physician I've seen that has pieced anything together. Most of them have been like, “Yeah, you have a thyroid dysfunction. Yeah, here's some pills. Yes, you have chronic depression. Here are more pills.”
Because it had been so long since the VA had tested me, he arranged a new test. Sure enough, I was off the charts. Never in a million years did I connect the dots—because, obviously, my brain wasn’t working right.
My husband had always said I snored a lot. From the time I was a kid, my family always said, “You just snore.” And as a child, I’d had to have a deviated septum repaired.
I guess my subconscious had been screaming for help, and I had become addicted to alcohol as one of my coping mechanisms. Once I started to heal a little, I discovered much of my life was shattered. My husband and I were fighting, blaming my addiction, my kids were going off the deep end, everything in my reality was dysfunctional. By this point, I weighed about 289 pounds. I'd always been very athletic. I'd always been very outgoing. I'd always been very “Let's get the job done.” I joined the military right out of high school because of that mentality. But there I was, sitting on the sofa, staring at a wall thinking, “I can't figure out why I can't move.”
Prior to completely losing my marbles, I ran my own interior design business. I did that because it allowed me time to rest. Because I would get so tired so quickly. But I could pick jobs up when I wanted to, and I would work through them at my own pace. My clients knew I had health issues. But it still frustrated people, because they’d think, “it’s been three months and the project still isn’t complete.”
And then my husband packed up and left. That finally hit whatever chord my brain needed to hit to say, “Okay. We have to fix this.”
Once I started recovery from addiction, the BiPap machine was able to start healing the rest. since I've started healing 80% of the disorders that I was diagnosed with for over 30 years of my life, have healed. We know what was causing things now.
The BiPap machine is still extremely uncomfortable for me. But now that I'm able to get out of that limbic brain, it's not as threatening to me. I can talk myself through the anxiety, whereas before the machine, there's no way. I remember doing the in-home sleep study, and I would rip the thing off of me and throw it as far away from me as I could, because I would be in a panic. When I started using it, I would do as long as I could, and then I would just take it off. I did that very slowly, progressing to where I could do two to four hours at night. Now I can do six to seven hours a night. It's still extremely uncomfortable and I still want to rip it off, but I can adjust myself and say, “Okay, this is far more valuable on you than off of you.”
I started looking to see why the VA flagged me for sleep apnea testing in the first place. Well, the VA has recognized obstructive sleep apnea as directly linked to PTSD. So anyone that has PTSD is automatically flagged and automatically tested. I remember through a few of my medical appointments, I'd say yeah, I've got terrible sleep, but I always thought that was associated directly to my PTSD.
I'm on a full-body recovery path now. There are so many issues that are interweaved. But I would say that, first and foremost, being able to use my logical reasoning brain has been by far the most healing property that I've had out of all of it. Being able to get my oxygen flowing again.
I don't take sleep apnea lightly anymore. I can't sit by idly and watch other people go through the struggles that I've gone through when I know that there are solutions. I’m in this state of mind now where I just want to reach out and help as many other people as I can, especially people with sleep apnea, because it's just not it's not something to take lightly.
Patients and Clinicians Need to Work Together
Patient advocate and co-founder of Alliance of Sleep Apnea Partners
I was at a movie theater with my wife. And I turned to her and said, “Marjorie, when is the movie starting?”
Can you guess what her reply was? “Two hours ago.”
It wasn’t a memory gap; I had been asleep. I was knocked out, lost consciousness. My wife reminded me that once when we were at a friend’s house, I had been sitting in a chair and just fell asleep. She said I would fall asleep at dinner.
So I went to my primary care physician and said, “I don't know what this is. But I'm sick and tired of it, because it's happening to me pretty regularly now.”
She set me up to have a sleep test.
I got all wired up. I had no idea—no one briefed me on what was going to happen in this test.
But that's pretty common, from what we've discovered.
I showed up for an overnight sleep study, put on my jammies, they wired me up with all the stuff for the device, put me in the room, and told me to go to sleep. I can usually go to sleep pretty quickly. And within less than an hour, they woke me up and said they wanted to make sure that I didn't die, because I had stopped breathing so often. They said, “We're going to put you on a mask right now.”
I’d never heard of a mask. I didn't know what CPAP was. I didn't know what any of this was. All I knew was that there was going to be this evaluation if I had some sleep disorder. So they put that on me. And then they let me go back to sleep.
They won't tell you what the result was. But they said that they stopped the initial test because I had stopped breathing so often. I think the number that finally got recorded was I had stopped breathing 54 times in an hour.
I got assigned to a sleep doctor, Dr. Suzanne Bertisch, which has turned out to be one of the best things in my life.
I had obstructive sleep apnea, and it was a severe case.
Once you sit with a sleep doctor and they interview you, you realize things. I realized that my father almost certainly had it. He would fall asleep at the wheel of the car. And both of my living brothers have sleep apnea. So obviously something was going on in the family.
I suspect my sleep apnea wasn’t all that pronounced, if it even existed, when I was younger. I always had a very active life. Obstructive sleep apnea mostly happens as your palate gets softer and weaker as you age, and it flops down—and that’s when something that was a latent condition becomes an active condition.
I got a CPAP, which was very matter-of-factly fitted by a DME, and got no other coaching. I’m one of those people who didn’t struggle with it.
About a year after my diagnosis, I told my doctor, “I really wish there were something I could do to help.” She said, “There’s a paper I’m writing, can you help me edit it?”
She also mentioned my name to Dr. Susan Redline, who later invited me to participate in several projects that related to sleep, and I also became a counselor for some people who have sleep apnea.
I’ve learned two things. One is that almost every doctor is trying to do the best he or she can with you, and therefore you have to participate in your own treatment as completely and as honestly as you possibly can. That also means you have to be prepared to take responsibility as a patient. You as a patient need to know your medications, you need to be following the prescription, you need to be providing feedback.
The other thing—I guess the big thing—is that I always ask doctors, “Have you had this experience yourself? Do you have this condition?” Almost invariably, except for dentists, the answer is no. Therefore, they need to develop a sense of empathy, not just sympathy, for people who are usually struggling with the condition.
There's an awful lot that we don't know. My colleagues are telling me—and I use the word “colleague” to embrace the scientists, the clinicians, the research statisticians, and the patients and caregivers—we’re discovering that as patients often we're providing important feedback to doctors. But they just don't want to hear things like, “This is uncomfortable for me” or “I’m drying out” or “This mask doesn't fit” or “I can't tolerate the mask.”
A big part of it is that clinicians need to listen to their patients.
If you look back at the history of sleep apnea and its diagnosis, we essentially have gotten it more or less wrong all the time. It isn't only overweight men with 17-inch necks who are over 50. I've met people as young as 17 who have sleep apnea. I know someone whose daughter has sleep apnea at seven. So it's a matter of this is a much more complex condition. I have one colleague who kept going to doctors who kept on saying she was being treated fine, but it turned out she wasn't. She has both complex and obstructive sleep apnea, and as a result she has to go to a doctor in Boston who has to tune her mask, tubing, and CPAP combination to get the right level of CO2 into her system.
When you’re breathing, whether you are asleep or awake, there are a lot of things happening in your mouth, your nose, and your throat—they’re all related. Therefore, your dentist, your primary care physician, they all need to know about each other’s work with you and that you have been diagnosed with sleep apnea.
I’ve trained to be a “buddy” to help people who are newly involved with CPAP, someone they can call or send emails to, and you can reach out on a regular basis to see how they’re doing. That can be important, because if you're all alone in the middle of the night, even if you've got a bed partner, you can really feel that you're completely unsupported and unattended. It’s good to be able to have someplace or someone you can reach out to.
We’ve discovered there’s a lot that needs to be done and patients and clinicians all need to work together. People have opinions and want to share them. It’s been said that this is something that is emerging as part of the medical community that didn’t exist for a long time. In the past, you just did what the doctor told you to do. But, unfortunately, often the doctors weren’t listening to you; they were just telling you what they thought, based on the limited information they took in when they weren’t listening to you. More patient voices need to be heard, and more people need to be engaged.