JoeBorelli

See this article...

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

Your body adjusts to the pressure in a few hours, such that you don't even notice it when you awaken. For a long time, I was insistent on getting my CPAP checked for malfunction! I didn't feel any air pressure when I awoke. Now I know that's normal.

I am concerned you are feeling worse. You should have the data from your machine analyzed. The pressure may be too low or high. Also, you CAN have central apneas for the first few weeks on CPAP, but they generally resolve. The data from the machine will show that as well. I've found that automatic CPAP (or APAP) with a range of +/- 2 cm water works really well, rather than a fixed pressure setting. So, if your doctor has you on a fixed CPAP setting, you could ask him or her to set a range, alternatively. Our physiology changes with body position, nasal stuffiness, level of hydration, etc., which will all affect the pressure needed to splint the airway.

Stay on course with your CPAP. It took me months to get it right and you are way ahead of where I was when I started. You WILL feel better!

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!

Hi Susan, It is imperative that children with OSA/UARS be evaluated for and fitted with an OA to enlarge the volume of the mouth. This will give the tongue the room it needs to avoid obstructing the airway. The back of the tongue is responsible for 90% of OSA and likely a large proportion of UARS. IMO, it is important to widen the maxilla and mandible prior to suture closure (i.e. in children and adolescents). The majority of adult patients with OA/UARS could have benefited by an OA and likely avoided the development of their illness if so treated.

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!

This is a great article, posted 2-13-15, that diffuses stereotypes. Dr. Meskill (who trained at Stanford) describes a 29-year-old woman misdiagnosed at two sleep labs and ultimately diagnosed with UARS. Her story is eerily similar to mine. Tongue scalloping, false negative sleep studies x 2, etc.

http://www.huffingtonpost.com/stanford-center-for-sleep-sciences-and-medicine/upper-airway-resistance_b_6649766.html

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.

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

Joe Borelli, MD