April 2015 Discover Magazine Article - Getting Enough Sleep Can Be a Matter of Life and Death

Read about the latest research on sleep medicine and one patient's (yours truly) success story.

Joe Borelli, MD

Thanks Joe. Your story is one similar to so many in the MyApnea network. Why does it take so long to recognize sleep apnea AND realize fixing it can change one's life (even among members of the medical community)? Here is a link to the magazine site where there is an intro to the article: http://discovermagazine.com/2015/april/17-wake-up-call

Sleep is jumping squarely into the public health realm this month with an article in Reader's Digest too. Sounding the Alarm on SLEEP. Check it out: http://www.rd.com/health/conditions/america-sleep-crisis/

The first physician that evaluated me, on first meeting me, said "You don't have sleep apnea." I didn't fit the stereotype of an obese, middle-aged male. I had a sleep study in his accredited lab and the results were "normal." In his subsequent letter to me, he said "Joe, you need to get a good night's sleep..." and prescribed a controversial (80% of sleep medicine physicians do not recommend its use) anti-depressant. As a physician, I knew this was a typical response to placate a patient. It's the same reason antibiotics are over-prescribed. Otherwise, patients feel that their physician did nothing to help them. I never fill the prescription.

Next, I went to a local university medical center, after two more years of suffering and progressive cognitive decline. When the sleep specialist examined me, she was certain that I had REM-sleep-related OSA and guaranteed my sleep study would bear this out. Unfortunately, this study showed my AHI was only 4.8 (which doesn't meet the arbitrary diagnostic criterion of 5.0). Yet she still ordered a titration study, showing I needed a CPAP pressure of 5.0 cm of water. The latter treatment made me worse!

What both of these sleep medicine institutions failed to due was properly evaluate me for AROUSALS via the EEG. This takes a great deal of skill and very careful, time-consuming review of the PSM (polysomnogram) data. The hypopneas and associated arousals are subtle but very real and devastating to the patient. Once I finally traveled across the country to Stanford (after contemplating suicide – I had literally become a basket case, unable to dress myself or remember any recent events), I was ultimately diagnosed with UARS (upper airway resistance syndrome) with an AHI of 28 and a titration pressure of 13 cm of water. Thus, the first two sleep studies were falsely negative. At least the second sleep physician was convinced I had OSA based on my history, but her treatment (with an inadequate pressure) was intolerable. Imagine air blowing into your airway at a pressure too low to open it. That worsened my sleep and exacerbated my symptoms. They blew me off as non-compliant and refused to see me again!

What I have learned from my experiences is the following:

1. There are no valid gender or body habitus stereotypes – ANYONE can have sleep disordered breathing, including young, thin females (as well as children). It's more a matter of upper airway structural geometry than body type.
2. UARS (hypopnea and arousals without complete obstruction) is equally damaging clinically, may be MORE COMMON than classic OSA and is under-diagnosed at alarming levels. Most labs are either ignorant or fail to take the time to study the PSM adequately to detect UARS.
3. It is VERY EASY to diagnose OSA/UARS from history alone. I have diagnosed dozens of friends, acquaintances and patients in less than 5 minutes by asking a few key questions. I have encouraged all of them to seek formal diagnosis at Stanford. Others I have place on APAP (auto-titrating CPAP) empirically with excellent results. In one example of the latter, a 25-year-old, thin female slept 12 hours on APAP on the first night and felt refreshed for the first time in memory. A week later she stopped taking her prescription hypnotic. She's been 100% compliant for over 6 months now and is a changed woman.
4. We now know that up to 90% of people with chronic insomnia have un-diagnosed OSA/UARS. We need to identify these folks early (in their 20's, 30's and 40's) and get them on CPAP/APAP before any damage (to the brain, autonomic nervous system, cardiovascular system, endocrine organs, etc.) is done. Mass screening is likely where we will end up in 5 years, once the cost of detecting UARS comes down.
5. Children present differently (as did I) with SDB. They may have "essential" hypertension (as in my case at age 10), learning disorders, behavioral disorders or ADD. All children with any of these presentations should be evaluated for OSA/UARS.

Thanks Joe. As I read your story I was thinking many sleep professionals site similar concerns about their patients because even if they recognize, study and report a high AHI based on respiratory event related arousals (UARS) there hasn't been enough evidence to enable the medical community to formulate treatment protocols or the third party payers to reimburse for treatment. This is where an outcomes network like MyApnea can help. If there are many, many "Joes" out there, their stories can attract the attention of researchers to survey them for more information and provide the evidence needed.

I challenge all forum readers to actively encourage their friends, relatives and acquaintances to join MyApnea so your voice gets heard. Encourage your doctors to help their patients learn about it too. As more and more people join, the doctors will eventually be able to get the education, protocols and reimbursement needed to better serve their patients. And patients won't have to struggle so long. That's what I call a WIN-WIN !

It sure would be nice if I didn't need a subscription to read the DISCOVER article. Perhaps Partners would be able to get article reprint rights for this forum.

Here's a follow up story on Advisory Council Co-Chair Joe Borelli and his story.

http://www.thestate.com/2015/03/15/4048447/bluffton-doctor-overcomes-memory.html

Thanks for posting, Darrel!

The thrust of the article is:

Sleep apnea/UARS is very effectively treated by CPAP, but first the disorder must be suspected and ultimately diagnosed. Until cost-effective, population-based screening is available we must profoundly raise the awareness of the prevalence of this disorder in the public, among healthcare professionals and policy-makers. That's why I'm here!

@JoeBorelli - I can't even begin to express to you how important this information is to me. I've been going through a tremendous cognitive / neurological decline for the past 5 years all while on a CPAP with no improvement. Looking back over my sleep studies I see that I only had 1 apnea (central), 0 obstructive, and 154 RERAs (the same after titration at 8 cm).

This is a brilliant star of hope in a very dark journey so thank you, thank you, thank you!!!

Are there any sleep centers on the East Coast that will treat for RERA / UARS?

Bob

Bob,

I am not in the know regarding sleep centers. Even accreditation is no assurance of quality (having developed the national MRI accreditation standards enforced by Medicare!). I have only had experience at Stanford after false negative studies at accredited labs near me. In general, facilities run by recent sleep medicine trainees from Stanford should do a good job. I would suggest calling Stanford or searching on-line. There is one in Texas (e.g. see the Huffington Post article from February). I strongly suggest your pressure is too low at 8cm. I've seen pressures usually at 10+ in most adults. You need to eliminate or greatly reduce those RERA's. If you have a newer auto-titrating machine (e.g. Resmed S9 or Airsense 10), you could try setting the pressure range from 9-13 for a few days, ideally with the approval of your physician. Meanwhile, find a sleep center that will work on eliminating those RERA's!

I'm glad my efforts have given you hope. I'm confident that you will feel much better with fewer RERA's!

See this article...

http://www.islandpacket.com/2015/03/15/3647356_bluffton-doctor-overcomes-memory.html?rh=1

Joe,

Thanks for posting your story.

I am an RN with a MS in med-surg nursing.

I started snoring loudly around age 40. At the time I weighed 110lbs.

It is just this year @ age 64, that the thought occured to me that I might possibly have a sleep disorder.

I had a sleep study in January and was very surprised to find out that I had OSA.

I agree that there needs to be an awareness that anyone can have sleep apnea. I have picked up extra weight in recent years, but I surely did not fit the profile for sleep apnea when I first started snoring, having excessive daytime sleepiness, and memory problems 20+ years ago.

Thank you for speaking out about your difficulty with getting a correct disgnosis, despite your medical background. I was able to get a diagnosis OSA on the first try, but adjusting to CPAP and getting results (nl range AHI) has been a huge daily challenge for me.

I agree that recognition of the problem is a big challenge for both health professionals and the general public. This experience has been a literal "wake up call" for me. I thought I was in very good health and had no idea what was going on with hypoxemia and sleep apnea during my sleeping hours.

I look forward to the day when screening is commonplace and there is general public awareness of sleep apnea and the associated risks.

Again, thanks for posting ablut your experience.

2sleepy...I look forward to the day when I can change my screen name to Was2Sleepy

Joe, Did you know if oral appliances can be as effective as CPAP when treating UARS? My dentist is suggesting that I am suffering from UARS and would like to have an appliance made for me. I have told her about my symptoms. I have had one sleep study performed - negative results.

Lisa