The Undiagnosed Millions

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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JQLewis
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The Undiagnosed Millions

Post by JQLewis » Mon Sep 22, 2014 10:40 am

I've posted before about the figures I've seen regarding the prevalence of OSA in the United States. Estimates for the number of undiagnosed OSA sufferers range from 18-30 million people. What do you think should be done about this? Do you think there are any worthwhile efforts to address this problem?

A thread was started here regarding the mistakes that are commonly made with regards to diagnosing insomnia patients. The attitude seems to be that patients are to blame for their own misdiagnosis, that they are "steering" doctors away from consideration of breathing problems as a cause of their insomnia. Is this fair?

As far as I can tell, no one seems to care, either in the medical profession or in the general population. Or am I the one who's being unfair?

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Janknitz
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Re: The Undiagnosed Millions

Post by Janknitz » Mon Sep 22, 2014 11:01 am

Most people would rather die the slow and painful death rather than face a lifetime of sleeping in a cpap mask, so the manufacturers have to continue to work toward the least obtrusive mask and machine possible.

Meanwhile, doctors need better education on who to refer for sleep studies. They erroneously assume too many people don't "fit the profile" of a middle aged obese male with a big neck.

And testing has to be streamlined. Expensive, time consuming, and low volume sleep lab testing will not work. I truly believe home testing with a simple unit and home titration with adequate support is the only way to address this on a large scale.
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jnk...
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Re: The Undiagnosed Millions

Post by jnk... » Mon Sep 22, 2014 11:37 am

Since CPAP machines are much less dangerous than a bottle of aspirin, the true solution is for CPAP to be sold OTC without Rx so that then the price would come down to less than your average microwave.
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delshadow
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Re: The Undiagnosed Millions

Post by delshadow » Mon Sep 22, 2014 12:00 pm

I would tend to agree with the original poster after being misdiagnosed for the last 20 years. GP's threw sleeping pills at me, then anti-depressants. Referred me to a psychiatrist who just changed up the cocktail a bit. I wound up developing restless legs, high blood pressure, and am now obese, as well.
Finally went to a neurologist for the restless legs and he recommended a sleep test, which I did resist but wound up doing, thanks to a relentless wife. I've had my CPAP for about 4 weeks and it's like having a new best friend. I'm sleeping some. It's been tough getting used to the CPAP. But I am dreaming, so I know the quality of my sleep is better. Also, my blood pressure has started going down.
There's a lot more to the story but I am no typist. When I was in school guys took shop and the girls took typing. (Not trying to offend anyone).

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jnk...
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Re: The Undiagnosed Millions

Post by jnk... » Mon Sep 22, 2014 12:15 pm

You type fine. Tell us the rest of the story.
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delshadow
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Re: The Undiagnosed Millions

Post by delshadow » Mon Sep 22, 2014 12:56 pm

Oh my gosh. I just spent the last 30 minutes typing "my story" and when I submitted it it didn't show up! Good grief!

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jnk...
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Re: The Undiagnosed Millions

Post by jnk... » Mon Sep 22, 2014 12:58 pm

That was to make you practice your typing.
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delshadow
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Re: The Undiagnosed Millions

Post by delshadow » Mon Sep 22, 2014 1:35 pm

When my insomnia first started I went to my GP and was given Ambien. It made me stupider but couldn’t put me to sleep.
Several years pass.
After we moved to another city I went to my GP there and he, also, gave me Ambien. Taking 1 did the same as before, so I tried two. I would wake up falling over the coffee table or, on a couple of occasions; I split my head open walking into a wall. Still not what you’d call quality sleep. When I told my GP I’d been taking two ambient he cancelled my Rx. Which, I’m sure, was the correct thing to do. He then tried a bunch of different anti-depressants. None worked.
I then developed restless legs. Up all night walking around the house because I couldn’t stay still. Then my feet starting burning, too.
About 12 years one of my coworkers recommended I go to his sleep doctor. He was THE sleep doctor in Houston. Well, the doctor decided not to come in and that his nurse could handle the appointment. At the appointment the nurse asked a lot of questions and decided I needed a sleep study. I asked her a lot of questions as I had an interest in the sleep lab. (I had set up some sleep labs a few years before in a different city and I had a different career.) I asked her what they could give me so I could sleep during the study, that was scheduled for six weeks later. She told me she was sure I would be sleeping by then and it wouldn’t be a problem! I didn’t go to the study.
I then decided maybe a psychiatrist could help. She gave me Requip and Mirapex for the restless legs and tried a bunch of different ant-depressants. Some of the anti-depressants made the restless legs much, much worse. So I was sleepy and up walking around totally miserable. I was so miserable I contemplated suicide but was aware enough to know that it had to wear off. I think we settled on Seroquel. I had to go to her office once a month and dreaded those visits. I swear , her staff must have been patients! It was awful.
After about a year I got tired of being in a fog all the time and decided to stop taking the Seroquel but keep taking the Requip and Mirapex.I went cold turkey. My wife and kids say they don’t ever want to have to deal with that again!
I talked my GP into continuing the Requip and Mirapex as it did help. I’ve been taking them for several years now.
Some ladies from church told my wife I needed to go to their neurologist for my restless legs. After several months of resisting I relented. I was immediately impressed. He said he wanted to do a sleep study but also wanted to check for peripheral neuropathy. The results showed no neuropathy and he prescribed Lyrica for my burning feet. Lyrica was the best thing to happen to me in a long time.
His staff scheduled the sleep study but actually scheduled a 2nd sleep study first. What a mess that caused. Then, with Aetna, I had to do a home sleep study. After calling for three weeks to get the results the receptionist said my record showed 49 apnea events per hour and I needed a 2nd study but they’d have to resubmit my insurance to get that approved. It took another six weeks before I got in for the study. I’d swear I didn’t sleep a wink that night. We started out with a nasal masked and then changed to the nasal pillows. I scheduled an appointment to go over my results when I left that morning.
At the appointment for the results I was informed I need to pay another $450 as I had not met my deductible yet. I paid and went back to see the doctor. I was met by his nurse who showed me my new CPAP machine and how to use it! She didn’t have the results. She gave me the nasal mask and when I told her that wasn’t what he had settled on in the test she said the tech hadn’t made note of it. All they had were the nasal masks. I ordered the Swift FX and Airfit P10 off of eBay.
Things are finally starting to get better. I have slept pretty well the last few nights.
(I typed this one in Word first)

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jnk...
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Re: The Undiagnosed Millions

Post by jnk... » Mon Sep 22, 2014 1:46 pm

delshadow wrote:. . . (I typed this one in Word first)
You, sir, are a natural-born problem solver. And I have a feeling you are going to find a lot at this board to be helpful to you in the coming months and years.

Sorry you had to go through that. Hopefully we fellow patients here will be of further help to you making your PAP therapy as successful as possible.

Feel free to start topics, friend. It ain't just for the lady-folk to do the typing around here, you know. In fact, I do believe that some of the females here are more than decent woodworkers and carpenters.

Just sayin'.
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JQLewis
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Re: The Undiagnosed Millions

Post by JQLewis » Mon Sep 22, 2014 4:45 pm

Janknitz wrote:Meanwhile, doctors need better education on who to refer for sleep studies. They erroneously assume too many people don't "fit the profile" of a middle aged obese male with a big neck.
The video which accompanies the article about doctor's failures to recognize OSA says that this tendency to prescribe pills when the real culprit is OSA was first noted in a study from 1973. 1973! CPAP didn't even exist then. That's a long time to keep getting it wrong.

I went to at least a dozen doctors over a twenty year period, complaining about my insomnia, and not one of the doctors I consulted even suggested OSA to me as a possible culprit. Do doctors learn anything about sleep disorders in medical school? The NIH estimates 20% of the populace has OSA, and 90% of them are undiagnosed. It's a pretty massive failure on the part of the medical establishment. The country as a whole and especially the undiagnosed are paying for this ignorance. And what excuse do the authors of this study use to explain this failure? That doctors are getting "steered" away from OSA as a possible diagnosis by their patients? 1973 to 2014, forty years of failure, and that's the best they can come up with?

Like I said, I think the real problem is that no one cares, not doctors and not even patients. I find that hard to understand. These are pretty amazing facts and figures, but no one seems upset by them.

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Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Sleepyhead, Sleep Studies done 3/14, AHI 85.6
Sleep Study-Titration Study
Help find the undiagnosed. Send me a PM if you'd like to help (http://osaaction.org)

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Julie
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Re: The Undiagnosed Millions

Post by Julie » Mon Sep 22, 2014 4:51 pm

"Do doctors learn anything about sleep disorders in medical school?"

No actually - well, maybe these days they do, but as far as I know, it's really quite a new thing... neurologists 'knew' about OSA for years, but the equipment was archaic, if not barbaric, never mind questionably ineffective, and there was no such thing as personal software. It's similar I think to nutrition - doctors are/were clueless and left it all up to people who studied it, and only a very few really knew (or cared?) much at all until so recently.

I don't think it's about not caring, but being focused on their own specialties, being generally busy and having had it drummed into them that such problems were either minor, the fault of the patient in some way (just as psychiatry used to blame everything on mothers ), and being geared to using their 'hammers' on more traditional nails.

Duffy08
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Re: The Undiagnosed Millions

Post by Duffy08 » Mon Sep 22, 2014 5:27 pm

I think there are problems on both sides. I think that a lot of GP's aren't great at screening for OSA. I had told two doctors previously about being tired all of the time and my lack of libido. They both suggested exercise and weight loss as a resolution. It wasn't until I made another appointment and specifically asked for a referral to a pulmonologist that I finally got the ball rolling.

On the flip-side, I have a friend who's husband flat out refuses to get tested for OSA, even though she has told him multiple times that he stops breathing at night. I am terrified for her--her husband has all the same symptoms that my husband had before his diagnosis in 2002. When my husband was diagnosed, his doctor told him that had he not gotten help when he did, he would have died from a massive heart attack within a year.

So what can be done? Better training on screening for OSA, I suppose. I wish, for my friend, that there was a way she could communicate her concerns to her husband's doctor, but I don't know if this is possible with HIPPA. I think patient education is a big one, too. I think it can be a scary thing for people who aren't familiar with OSA therapy. I was lucky--I watched my husband quickly and easily adapt to life with a CPAP and I really think this helped me to be open to the CPAP. I think if people knew that there were more symptoms than just snoring or stopping breathing, and if they knew what the implications of leaving OSA untreated are, maybe more people would seek help.

All I really know is I am SO HAPPY that I finally realized that I had OSA and that I got treatment for it. I honestly don't know how much longer I could have gone on without treatment--I was near my breaking point.

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Re: The Undiagnosed Millions

Post by Guest » Mon Sep 22, 2014 6:11 pm

Duffy08 wrote:I wish, for my friend, that there was a way she could communicate her concerns to her husband's doctor, but I don't know if this is possible with HIPPA.
She can go with him to his dr. appt to mention her concern. She could also have him appoint her his Healthcare Representative which is a great thing to have if/when he becomes sick.

Let's face it we all will be sick at some point in life and this Representative thing should be taken care of beforehand while you have a clear head.

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Rose3130
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Re: The Undiagnosed Millions

Post by Rose3130 » Mon Sep 22, 2014 6:21 pm

I wish I had been diagnosed sooner than I was. I was getting treated for reflux for quite a while before a doc said I needed a sleep study. I've been on bipap about 4.5 years and doing well. I do have fibromyalgia, which causes some of my sleep cycles to be reversed time wise, but otherwise sleep well most of the time. (In my original sleep study printout, I can see where my sleep cycles don't match up with what is normal cycle lengths)

I think there needs to be more public awareness and patient education with this disease. My dad had it I'm sure, but never was worked up for it. That was the 80's and early 90's. He had an HMO, and the snoring and gasping was never addressed. He was not overweight, but had a short neck. During the last few years of his life he had CHF, A-Fib, pulmonary hypertension, had bypass surgery with 5 jumps in '93, and PVD. His Ejection Fraction the last year of his life was 10%. When I tried to get him to go to the (new at the time) Heart Failure Clinic at Temple University, his HMO doc told him he didn't need to go there. He died in '95 of complications following successful gall bladder surgery. He had an MI and then a stroke.

So I think that yes, even now, there are docs out there that don't pursue the Sleep Apnea issue. I'm a retired nurse, and I was surprised by many coworkers who thought they had the symptoms, but won't get a sleep study because they 'don't want to wear a mask to sleep' ! Why? Yes it take some time getting use to, but hey, do you want the last few years of your life to be miserable? Many people don't die in their sleep....they die like my dad!

I don't hide the fact that I have SA, and I talk to as many people I can about it...patients, friends, family....

GP/Primary docs need to address this issue with their patients...esp. those who have symptoms, have the body shape (short necks), etc....
Mild sleep apnea people need treatment too!

Duffy08
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Re: The Undiagnosed Millions

Post by Duffy08 » Mon Sep 22, 2014 6:39 pm

Guest wrote:
Duffy08 wrote:I wish, for my friend, that there was a way she could communicate her concerns to her husband's doctor, but I don't know if this is possible with HIPPA.
She can go with him to his dr. appt to mention her concern. She could also have him appoint her his Healthcare Representative which is a great thing to have if/when he becomes sick.
I have suggested that she go to the doctor with him. I will mention the healthcare representative to her as well.

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