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Getting the Undiagnosed to the Sleep Lab
We all know that the vast majority of folks who have Sleep Apnea remain undiagnosed. What is the best way to convince people who don't know they have a problem that they might have one, and to get tested?
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Replies to This Discussion
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Permalink Reply by Katrina Levine on
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Ha ha. Easy. Tell women about the correlation between weight gain and untreated OSA. Tell men about the likelihood of Erectile Dysfunction as a symptom of OSA. Works like a charm. No one seems to care as much about little things like heart disease, stroke, diabetes and renal failure. Works for me :)
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Permalink Reply by Kevin Barthelemy on
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My wife probably has sleep apnea, but isn't interested in being tested, or using a CPAP. She's knows at least as much as I do about it, is aware that she may have it, but still won't do it. I'm pretty sure that the problem is that she already has many medical issues, and doesn't want to add another thing to worry about to the pile.
Mary Z said:Maybe a suggestion for a google of sleep apnea and their symptoms might be enough to pique their interest and plant a seed. I guess some folks will be open to the possibility, depending on the level of their symptoms, but others are in complete denial and I know of no way to convince them they ought to get tested. If you could get them to give their PCP an honest list of symptoms maybe the PCP could convince them. This is a good question, Mike, as it's hard to believe that anyone suffering from AM headaches daily, fatigue, falling asleep at work or at the wheel, and waking up not feeling rested would be resistant to the idea of sleep apnea as the cause.
Get them to read this thread.
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Here is how it went with me. (June, Ron's wife). I went to my heart doctor to get a pacemaker check up. He makes sure I do this by sending me up front and having me make an appt. for the next visit BEFORE I leave his office. I mentioned to him while I was there that 'I snore" and cough. So what did he do? He took me to the front, had the front desk schedule me for an appt. with a sleep lab - just like that. Unfortunately, (because I have worked in two doctors offices over the years), not all doctors operate this way and not all front desks are the same. This is called "follow through". This was my heart doctor, but I am sure had I gone to my regular internist and mentioned this, she would have done the same. Why? Because I make sure that the doctors I go to have time to listen to me, and I make sure that when I leave the doctor's office I get a reaction to whatever my problem is- either we talk about it and my doctor makes suggestions or, if he/she deems necessary - we go to further investigation. A good doctor listens and tries to get to the bottom of things. If he doesn't have time - then you need to look for another one.
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Permalink Reply by Richard Neider on
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That's a very good question. I went for at least 15-20 years undiagnosed. I heard about apnea from a friend and treatment was for quiting the snoring. No one ever explained the ramifications of apnea or symptoms other that snoring. Seeing I came from a family of males that snored like there was no tomorrow, I thought nothing of it. About 1.5 years ago, my current doctor, who talks too much, enlightned me to sleep apnea. So I tested and am now getting treatment. My wife no longer pokes me in the ribs and says turn over! So how can someone find out more whether they want to know or not? The only answer I have is education and word of mouth. Hope someone you know has apnea and is willing to enlighten you. Problem being, if you do not want to know, you will never investigate. A good family doctor who will ask the right questions is a blessing. Educate and advertise the symptons and maybe someone will learn and investigate.
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Permalink Reply by Darillyn Patterson on
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As they say, "Seeing is believing." I think if a person with undiagnosed sleep apnea was videotaped while they're sleeping and then had it played back to them, they would come to the realization very quickly that they have a problem which cannot be denied. If they saw themselves stop breathing and then gasp for air, it would at least make them aware that they definitely have a problem. I wish I had a camcorder. I'd like to film my husband while he's sleeping and stops breathing, etc. Talking to him has had no effect. He sees me using the CPAP, but he refuses to even go in for a sleep study. I suspected that I had sleep apnea after he told me I snore somewhat. That, coupled with the fact that I was not feeling refreshed when I'd wake up in the morning, told me something was wrong. I requested a sleep study and told my GP the reason for my request.
We were surprised when my husband was diagnosed with diabetes a few years ago. He's slender and exercises, so we didn't expect that to happen. He doesn't know of any diabetes in his family, either. People with untreated sleep apnea can develop diabetes, right?
I think I'll borrow someone's camcorder so I can try to film him and see what his reaction is when he sees it. I wouldn't even tell him ahead of time what the film is about, or he might refuse to watch it.
Has anyone else tried this approach? If so, how did it work?
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Permalink Reply by Mack D Jones, MD, SAAN on
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This question gets to the crux of the reason I wrote "Deadly Sleep." My thinking was that if a rational person was fully informed about sleep apnea and learned its horrifying consequences, that they would be compelled to seek a sleep study and treatment if needed.
I was naive. First you have to get them to read the book and even after they have, there is no guarantee they will act on it.
Here is a partial list of some of the profiles I've witnessed when discussing the subject (you know of others, I'm sure).
1. The person who cares about his/her health (or that of a loved one), understands the concepts, and takes decisive action (like us sleepguiders).
2. The poorly health-educated person who hasn't a clue about health issues nor how the body functions, is skeptical and hasn't time to read about this foreign subject.
3. The person who could care less about all that stuff and figures you've got to die of something, besides when your time is up, it's up.
4. The educated person in a non-medical field who somehow just cannot grasp the significance of the disorder (those neurons are simply not there) and is perfectly comfortable remaining in denial.
5. The individual who's brain is so beat up from years of apneic episodes that their frontal and prefrontal cortex is no longer intact and it hasn't the capacity to make rational judgements anymore.
6. The elderly individual who has multiple medical problems and doesn't want to hear about another condition that they might have to worry about.
7. The guy/gal who has been in pretty good health all his/her life is essentially asymptomatic and doesn't want to be bothered because he/she feels fine. Besides "snoring with a pause now and then never hurt anybody."
And the list goes on.
The odds of success:
"Have you heard of Sleep Apnea?" If the answer is "no", then the odds are poor. If the answer is "yes my husband/wife/father/brother has it. You are in.
In mixed company, if the subject comes up, you may have an in.
"I've been having...(obvious symptoms of sleep apnea), you are in.
The big guys who look like retired football players are good bets (some have heard of Reggie White).
The big guys or gals with an ashen, stressed look on their faces (like they haven't slept for several nights). Almost all have SA, but they may not be in the mood to talk.
You can sometimes get to those in denial, but for many, you simply have to write them off as lost causes. You have done your best. Maybe they will have a change of attitude of maybe they will have an epiphany, but I wouldn't hold my breath.
I am guessing, but I estimate about a 40% success rate of getting an individual to read the book and of those, about 75% will make an appointment for a sleep study (almost all are positive).
I've come to the conclusion that everyone has sleep apnea, until proven otherwise. I said this several years ago at a sleep meeting and everyone got a big laugh. The point I was trying to make was that if 50% of
undiagnosed sleep apneics are asymptomatic, how can you tell whether they have it or not? You can't without doing a study. Now, with the newest technology and the ability to get a home sleep test or even a free sleep study, it is no longer a joke.
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I mentioned a couple of examples in my book in which two nurses recorded their husbands sleeping and showed them the video the next morning. Both husbands, previously resistant to their wives pleadings, without hesitation made appointments with their PCPs that day. After being placed on their PAP machines, they both exclaimed, "I can't believe it, I have more energy and I can think more clearly."
Darillyn Patterson said:As they say, "Seeing is believing." I think if a person with undiagnosed sleep apnea was videotaped while they're sleeping and then had it played back to them, they would come to the realization very quickly that they have a problem which cannot be denied. If they saw themselves stop breathing and then gasp for air, it would at least make them aware that they definitely have a problem. I wish I had a camcorder. I'd like to film my husband while he's sleeping and stops breathing, etc. Talking to him has had no effect. He sees me using the CPAP, but he refuses to even go in for a sleep study. I suspected that I had sleep apnea after he told me I snore somewhat. That, coupled with the fact that I was not feeling refreshed when I'd wake up in the morning, told me something was wrong. I requested a sleep study and told my GP the reason for my request.
We were surprised when my husband was diagnosed with diabetes a few years ago. He's slender and exercises, so we didn't expect that to happen. He doesn't know of any diabetes in his family, either. People with untreated sleep apnea can develop diabetes, right?
I think I'll borrow someone's camcorder so I can try to film him and see what his reaction is when he sees it. I wouldn't even tell him ahead of time what the film is about, or he might refuse to watch it.
Has anyone else tried this approach? If so, how did it work?
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Permalink Reply by Jeffrey Donaldson on
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My friend who is on c-pap and I when he talked me into going for a study with the same doctor suggested that we record ourselves with a cassette recorder and play it back to our PCP's. That was all it took to get approval for a study.
Darillyn Patterson said:As they say, "Seeing is believing." I think if a person with undiagnosed sleep apnea was videotaped while they're sleeping and then had it played back to them, they would come to the realization very quickly that they have a problem which cannot be denied. If they saw themselves stop breathing and then gasp for air, it would at least make them aware that they definitely have a problem. I wish I had a camcorder. I'd like to film my husband while he's sleeping and stops breathing, etc. Talking to him has had no effect. He sees me using the CPAP, but he refuses to even go in for a sleep study. I suspected that I had sleep apnea after he told me I snore somewhat. That, coupled with the fact that I was not feeling refreshed when I'd wake up in the morning, told me something was wrong. I requested a sleep study and told my GP the reason for my request.
We were surprised when my husband was diagnosed with diabetes a few years ago. He's slender and exercises, so we didn't expect that to happen. He doesn't know of any diabetes in his family, either. People with untreated sleep apnea can develop diabetes, right?
I think I'll borrow someone's camcorder so I can try to film him and see what his reaction is when he sees it. I wouldn't even tell him ahead of time what the film is about, or he might refuse to watch it.
Has anyone else tried this approach? If so, how did it work?
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I think that a good starting place is to help educate people you know about sleep apnea. Some people go undiagnosed because they don't even realize they have symptoms. Or, they might be too embarrassed about their symptoms to tell their doctor. If you ever hear anyone ridicule snoring, educate them to the fact that snoring could be a symptom of a serious medical disorder. Point out to them that whenever they engage in such rude behavior, they could very well be making another person more self-conscious and embarrassed to the point that the other person might not seek the medical attention they need. Anyone who seems to have any of the symptoms needs to be educated about the symptoms and what they could mean. A person who has any sleep disorder and is treated for it is in the perfect person to tell others what it is like to have it and how treatment has helped them lead a better, more healthy life. One on one is a good way to communicate to others how serious this can be. You never know when you might be talking to a person who has an undiagnosed sleep disorder. The unaffected have turned snoring into a social stigma. Since snoring is common among people who have OSA, it may make it uncomfortable for them to bring it up to their PCP since the PCP will ask the embarrassing question, "Do you snore?"
I personally had the misfortune of marrying into a family of snoring ridiculers. I come from a family where snoring is common. Whenever my in-law family has a get-together, they have to ridicule snoring because my father-in-law snored - LOUDLY. He snored, but now he is dead. He had a series of small strokes, followed by a big stroke, and later died of a heart attack. Still my in-laws continued to ridicule his snoring. It might be what killed him. I was self-conscious at those family get-togethers because I snored and I had undiagnosed OSA. Next time they group ridicule snoring, they will be educated.
In addition, we need to educate medical professionals (including sleep doctors) about SA. We need to educate them to stop trying to put people in molds. I went undiagnosed for nearly 55 years because I wasn't an over-weight middle-aged male. My initial cause of OSA was congenital, so I grew up as an extremely underweight female with undiagnosed OSA. Eventually, I made the middle-aged and over-weight categories, but I still went undiagnosed because PCPs apparently major in thyroid in medical school. Then there are nurses who are experts in caffeine rebound and know that that has to be the cause of daytime sleepiness.
Perhaps medical textbook writers should be lobbied until they finally understand that there are two kinds of molds: Good and Bad. Penicillin is a good mold. Black is a bad mold. Ceramic molds are good when you want thousands of identical copies of one thing. People molds make things quick and handy for doctors. However, they are Bad since they harm people who are put into the wrong mold or left out of the correct mold, thereby receiving the wrong treatment or being denied the correct treatment. I wonder how my doctor would feel if I were to tell her that she was stupid. silly, and bubble-headed blonde because that is how blonde females were portrayed in 1950s and 1960s situation comedies. She might be personally offended. She, however, along with all of my previous PCPs put me in the mold of there is nothing wrong with you since your thyroid is fine.
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Permalink Reply by Mary Z on
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June, I sure wish Dr. shopping wasn't so difficult. My internist made me an appointment for a sleep test as soon as I told him about the extent of my daytime sleepiness. He used to have a reputation as a doctor who liked to dig for answers, to get to the bottom of problems. Unfortunately something seems to have changed him to a "if this doesn't help I don't know what else I can do for you" kind of doctor. His affect is flat where he used to be animated. Luckily my insurance allows me to make an apointment with a specialist (as long as the office agrees) without going through my internist anymore.
As far as getting people to be tested, sleep apnea seems to the disease of the season and hopefully this has encouraged more people to come forward and get tested.
Mary Z.
Ron Sowell said:Because I make sure that the doctors I go to have time to listen to me, and I make sure that when I leave the doctor's office I get a reaction to whatever my problem is- either we talk about it and my doctor makes suggestions or, if he/she deems necessary - we go to further investigation. A good doctor listens and tries to get to the bottom of things. If he doesn't have time - then you need to look for another one.
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Gordon,
I am willing to help you. Please contact me at PTWebe@bellin.org.
Thank you,
Pete
Gordon Osmond said:I live in a retirement village. I am sure there are others in my village who suffer from sleep apnoea. I am also the editor of the village newsletter. Would anyone like to send me a short (A4 using Times New Roman size 14 bold) article for my newsletter?
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Bellin Sleep Center: Green Bay, WI (www.bellin.org)
We use Apnea Link as a screening tool. We offer it to the community for free. This started with our Cardiologists looking for the least costly way to evaluate sleep apnea. Questionnaires did not work. Talking stroke, Cardiac disease, ED or weight gain only frustrated people like we were using "scare tactics" to get them into our sleep center.
Offering a free screening that prints out the oxygen de-saturations, snoring and apnea - apneahypopnea is a great way to objectively show customers risk factors.
In hundreds of free screenings, we have had about a 30% rate of convincing patients to get a sleep study. Close to 100% for those with High Risk factors. Our accredited sleep center went from averaging 60 sleep studies (drastically dropped off with economic woes) to averaging 95 sleep studies a month. In April we did 104 sleep studies. We provided 57 people with a free Apnea Link so I suspect May will be a great month too.
When we show people that for zero cost we can rule them in or out for a sleep study, they appreciate our efforts to eliminate unnecessary testing. We have saved this community thousands of dollars in health care while treating those that need it most.
I wish all of you the best in your community education efforts. Starting with Primary Care then moving to Specialists (Cardiology, Neurology.....) and never giving up at keeping the patient in the "center" of your cause will lead to success.
Respectfully,
Pete Weber, BA, RRT, RPSGT
Team Leader - Pulmonary and Sleep Medicine, Bellin Memorial Hospital
President of the Wisconsin Sleep Society, www.wisleep.org
PTWebe@bellin.org
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