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Mary Z posted a discussion

Sleep apnea increases risk of osteoporosis

Sleep apnea/osteoporosis study finds “increased” health riskA recently published study may have found a connection between obstructive sleep apnea (OSA) and osteoporosis, marking yet another health…See More
Saturday
Mary Z replied to ZolliStar's discussion Non-invasion approach that can relieve mild sleep apnea
"Hi ZolliStar, I've heard before that speech therapy, or singing lessons can help sleep apnea.  The problem at that time was there was no way to determine which exercises help.  Getting research done, rather than anecdotal would be…"
Jul 28
ZolliStar posted a discussion

Non-invasion approach that can relieve mild sleep apnea

Some people report that singing -- singing! -- really helps their sleep apnea. Dr. Stephen Park said that myology (which are exercises to strengthen muscles around the inside of one's mouth area) helps some. I think singing would be better.  If you read all the FAQs on this (click below), I think you'll agree that it makes sense for some. Maybe you.http://www.singingforsnorers.com/index.htmSee More
Jul 28
ZolliStar posted a discussion
Jul 20
liz4cps commented on liz4cps's group Prince William Co, VA support group
"I talked to Kimberlie at the Novant Sleep lab last week (at Prince William Hospital) and she said they would not be holding any meetings this year but are planning to start holding meetings again next year.  I'll let you know when we have…"
Jul 14
richard graham posted a status
"I just have mask called the Wisp. Hope it works. Anybody have experience with it. I have an ultra mirage nasal mask and get leaks at brid"
Jul 9
Andy posted a discussion

Resmed S8 AutoSet II - No Longer Collecting Data??

Hi All,First off, my apologies for not checking in for a long time.I've been using my Resmed S8 AutoSet II for almost 3 years! I feel great, have lost almost 30 lbs, am no longer sleepy during the day, sleep through the night, and have my short-term memory back.Yay!I've told my doctors that I'm the "poster child" for Sleep Apnea and CPAPs! It's been, and continues to be, such an amazing experience that I want everyone to know!Everything has been going well in CPAP-land, but in the last few…See More
Jul 7
hifay replied to richard graham's discussion mouth breathing
"What type of chin straps?"
Jul 6
Ginny Edmundson replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"No real improvement in sleep study.  Just not having to use cervical neck color.  What a bummer. Surgeon wants another sleep study in about a month or so (home one) Not sure if will do or not. "
Jun 22
Mary Z replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"Ginny, how are you doing after the tongue procedure?"
Jun 22
Mary Z posted a discussion

AHI finally under five.

I have been on CPAP since March 2008 and had a good AHI when I started therapy (under 5).Then my AHI started getting worse- for a while it stayed in the 20's, then we got it to the high teens.  Nothing we did would help.  My doctor said it was due to the meds I take.  For a couple of years I just tolerated the high AHI.  I did another sleep study and changed to an ASV machine.  For two years I still had a AHI around 11-13.  Then all of a sudden - a month ago I noticed my AHI was running five or…See More
Jun 22
ZolliStar replied to richard graham's discussion mouth breathing
"FWIW, I've been alternating between my mouth device and my APAP. I haven't used humidity at all when I use the APAP -- and don't miss it, either. "
Jun 14
richard graham replied to richard graham's discussion mouth breathing
"I still use humidity but less of it. It seems to be working OK.."
Jun 14
ZolliStar replied to richard graham's discussion mouth breathing
"I rarely use the humidifier. I think it's less necessary during the summer when there is humidity.   I also switch between my mouth device and the APAP.  I like each for different reasons. Not sure with which I sleep better, though.…"
May 21
Mary Z replied to richard graham's discussion sick again
"I've been doing well.  I think you were going to try the cpap without humidity- did that help at all?  I haven't had a cold for a couple of years."
May 14
Ginny Edmundson replied to richard graham's discussion sick again
"CPAP seems to cause stuffiness in many of us.  ANother reason I hate it so much!Do you rinse your nose with saline once a day…maybe before you go to bed for the night? "
May 5
richard graham replied to richard graham's discussion sick again
"I do wake up stuffed up most days"
May 5
richard graham replied to richard graham's discussion sick again
"I do have non allergic rhinitis. Now I'm thinking that's probably it because I only feel that way for a day or 2. Thank you"
May 4
Ginny Edmundson replied to richard graham's discussion sick again
"I have been lucky.  Not one cold past three years. Could some of your problem be allergies?"
May 4
richard graham posted a discussion

sick again

It seems like I am sick with colds more often when I'm on the CPAP. Anybody experience that.
Apr 30

7 Habits of Highly Successful Sleep Apnea Patients

from Dr. Park: Some patients with sleep apnea do remarkably well, despite all the hurdles and obstacles that arise. Then there are others that procrastinate, or refuse to take any action at all. I've noticed 7 commonalities amongst the ones that do succeed in the end:

1. They take responsibility for their own health, and not rely on doctors alone. They surround themselves with a team of medical professionals, constantly reading and learning, asking questions, and staying up to date on the latest in new sleep apnea treatments and research. They are willing to make major changes their lives, daily habits and diets to achieve set goals.

There are some people who are unwilling to make any changes, such as with eating late or going out 2-3 times per week and drinking alcohol. These are the same type of people who say they don't have time to read an important book to help them along. These are the people who want only a quick fix. They are unwilling to commit to a life change.

2. They are willing to pay extra. Unfortunately, insurance will typically cover only the bare essentials for sleep apnea treatment. Most durable medical goods vendors will give a basic model, and typically won't cover any additional add-ons or extras or a more full-featured CPAP machine. Depending solely on insurance to cover for everything will lessen your chances for achieving success. Sometimes, you have to pay for a new mask, or a dental device. Yes, you should maximize your insurance benefits, but you should also not hesitate to go outside of medical insurance to invest in your health.

Successful people also are willing to invest in gym memberships, yoga classes, books and information products that complement standard sleep apnea treatments.

3. They take action. The people that succeed typically have tried multiple different options and have failed more often than once. But because they are persistent and take massive action, eventually, they find something that works for them.

There are many patients research everything but can't make up their mind. This is called paralysis by analysis.

4. They do everything possible to breathe well through the nose. Being able to breathe well through the nose, although not a cure for sleep apnea, helps every other form of treatment option. Whether it's with CPAP, dental devices or surgery, not being able to breathe well through your nose will ultimately diminish the quality of your results. Through trial and error or by working with your doctor, you can usually figure out what's causing your stuffy nose, and take care of it in one way or another.

Many successful CPAP patients get into the habit of irrigating their noses with nasal saline. There are various ways of getting saline into your nose, so you'll have to try different options to see which one you like.

5. They set aside time for regular exercise or relaxation. Paradoxically, exercise is a great form of relaxation. When you take the time to exercise, you have to focus on your exercise activities, which forces you not to stress about work, life and other distracting things. Not to mention the cardiovascular benefits. The more advanced people discover that active forms of relaxation or meditation helps to calm the overstimulated stress part of the nervous system, or the sympathetic nervous system. They routinely practice yoga, meditation, tai chi, which are all disciplines where proper breathing techniques are stressed.

6. They join a community of other sleep apnea patients. There's a saying in business, "Teamwork makes the dream work." Surrounding yourself with other successful people's perspectives will help you to grow, learn. There are live groups such as AWAKE, or various internet forums and support groups.

7. They accept sleep apnea rather than fight it. At a certain point, all these habits will be a regular part of your life. If you're constantly resisting it and fighting it, always looking for a "cure," you're in for a long and frustrating battle. Unless you undergo a tracheotomy, you'll never be cured. Your ultimate goal should be to reach a point where you're able to function normally, gain satisfaction from the work that you do, and ultimately, to be able to enjoy life.

(excerpted from http://ezinearticles.com/?id=2528115)

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Replies to This Discussion

I think that numbers three and seven are the most important things for people with sleep apnea to accept.

Number one is important, but I take exception to "They surround themselves with a team of medical professionals". I am not sure that number six is all that important, although it may help some people.
I agree with most of what Dr Park says, but I would say never accept sleep apnea, not even an AHI of one. Continue to fight it until it is conquered. For most, it's APAP (or Auto CPAP) with a smart card. If you are truly APAP resistant then the question is: can ENT make you an APAP success? If so, have a tracheostomy first, then undergo whatever ENT surgical procedure (e.g.removing nasal polyps, etc) that will resolve your nasal problem. Now that your nasal problem is resolved, go back to APAP and if it is successful, close the tracheostomy.

But you might say, "a tracheostomy, are you kidding? Why a tracheostomy?" The reason is simple.You are continuing to obstruct your airway nightly while you are experimenting with ENT surgery which can go on for months. Apneas are not good, they are bad for you. They will kill you. Stop the Apneas.
j n k,

I think everyone has different experiences in different parts of the country. There are some insurance carriers that contract with only one DME vendor. If you have a choice between different DME vendors, then by all means do your research and look around. But for most people, they go with whichever one the sleep doctor sends them to. As you may know, there's wide variability in the quality of the DME vendors. Most are honest, but there are some that do practice less than ethical tactics. The entire system is so complicated that even if you've educated yourself about these issues, you'll still come across many frustrating situations. Maybe all the bright minds on this forum can come up with a CPAP/DME checklist and questions to ask before selecting a DME vendor. I'm also talking about paying for non-covered accessories, such as CPAP cheek pads, sleep position positioners, extra machines for travel, all within reason. Any other option to improve or optimize your sleep apnea treatment experience. Yes, different people have various levels of financial resources, but some people refuse to shell out even $10 if insurance doesn't cover for it.

Tim,

I'm just speaking from my experience with patients that I deal with. I'm sure there are plenty of people who do fine with minimal physician involvement.

Mack,

Conceptually, I totally agree with you that even one apnea per hour is not a good thing, but to try to reach that goal for everyone with sleep apnea is unrealistic. Due to the law of diminishing returns, we'd had to spend enormous time and resources to get everyone with sleep apnea under one. I'm willing to bet that many people on CPAP or aPAP at their best are hovering above one. Most CPAP titration studies I see end up being over one at the final pressure.

Tracheotomy is a great option for some people, but most won't ever consider it for obvious reasons.

As I point out in my book, most modern humans are susceptible (to various degrees) to sleep-breathing problems due to our smaller jaw anatomy. It's just a fact of life. I know I have some it as well. We all are prone to upper airway narrowing from the tip of the nose down to the voice box. It only gets worse as we get older.

Also, different people react differently to different levels of apnea. Some people are very sensitive to apnea indexes of even one, whereas I know some people who have numbers in the 60s who feel just fine.

Lastly what about all those people who have AHIs of 0, but wake up due to short breathing pauses anywhere from 5 to 25 times per hour and are miderable? What do you do with these people with upper airway resistance syndrome?

This is why I don't have a blanket recommendation for everyone. Yes, there are some basic medical guidelines that you must follow, but everyone has to have an individualized treatment approach.
Dr Park, I agree with everything you have said about sleep apnea and the need for patient compliance. However, as said before, not all cpap patients are internet savy as we are! and not all patients are comfortable enough to discuss anything with their doctor - they rely on the doctor telling them the info rather than getting it themselves - these are mostly older adults who, because of being raised in a different generation, where their doctor was the one with all the answers or they felt the doctors were much smarter, or whatever the reason - relied on the doctor to have the expertise. If a doctor wrote them a prescription to "go join a gym or yoga class or tai chi" they would fill it like a prescription for a drug - knowing that the doctor knew best. Today, many of us are more than capable of being our own advocate, however we are not privy to the information
that is most helpful to us. Sleep apnea is a fairly new "disease" so we are all learning as we go along. Thank goodness for websites like this one - where we can all interact and find some solutions.

I would like to know more about MY sleep apnea which as of today is determined to be both obstructive and central but mostly central. This is a SERIOUS diagnosis and I take it seriously. Unfortunately, I have to sleep my day away because my nights are spent waking up and adjusting a mask, readjusting a mask when I turn over, just plain waking up and not knowing why, etc. etc. I have a wonderful machine with all the latest for central sleep apnea, however because my BRAIN is not getting the signal to tell me to BREATHE I feel that this is only a somewhat helpful device, although as far as I know there is nothing else for me.

Does anyone know of a trial or program I could become involved in that would address CENTRAL sleep apnea. I'll go to
Alaska if I have to, but I doubt there is such as program or trial. You see, doctors haven't gotten to the point of having the answers yet. Doctors are just like us, except they have gone through 8 years of highly intensive training to be MDs - they are taught to diagnose and treat. Right? Doctors don't know everything! They are human beings just like us -ONLY WITH TRAINING. Yes, I know I sound frustrated - because I am. I know there is nothing more I can do except follow the doctors advice - do everything they say and hope for the best. Sitting back and doing nothing is not an option. Ron
Steve, One explanation for the seemingly contradictory symptoms can be attributed to the unseen white matter infarcts demonstrated by Paul Macey and collegues in their report in the Journal Sleep July, 1 2008 (http://www.journalsleep.org/ViewAbstract.aspx?pid=27202). Click on Full Report to see the MRI- DTI colored images. All 41 OSA patients (ages 32 to 52) had multiple white matter strokes scattered through out their brains. It's no wonder that some of these patients don't feel better right away after going on PAP. These areas of brain damage may take weeks, months or years to recover, if at all. Denial of symptoms, as you well know, is common in OSA, the assumption being that haven't experienced one of these lesions yet (or if he has it hasn't occurred in an area of the brain that manifests itself in feeling like crap).

Notice I said "yet." The point I wanted to stress is that the way you feel after going on PAP may not necessarily be a true indication of how well the machine is actually working. (The smart card is going is going to come to the rescue here). The guy who feels like crap with an AHI of less than 5 may have a brain loaded with infarcts, whereas, the guy with an AHI of 60 may have few or none (yet). Or the ones he has are in a relatively silent area of the brain thus far. Oh, by the way, you probably wouldn't be far off if you guessed that most of your OSA patients, at least in the age group mentioned in the study, have similar lesions. At 73, I wouldn't be surprised if my brain lit up like Christmas tree on an MRI-DTI scan.
Ron,

Part of the issue is the generic "doctors" term. The avergage primary care physician has little or no training on sleep medicine during medical school, probably no more than 2-3 hours according to research. I've educated my primary physician to a point, but while he has asked me about other apnea patients of his, he has never really asked me about my own apnea. That may be because he knows I see a sleep specialist, though, since my primary doc does dialogue with me on other health issues.

I always recommend that a person with moderate to severe sleep apnea see a sleep specialist at least once a year, just like you would see a cardiologist if you have a heart problem. Unfortunately, most people I talk to say "what's a sleep specialist?" because they've never been referred to anyone to discuss their sleep apnea diagnosis.

Dave

Ron Sowell said:
Dr Park, I agree with everything you have said about sleep apnea and the need for patient compliance. However, as said before, not all cpap patients are internet savy as we are! and not all patients are comfortable enough to discuss anything with their doctor - they rely on the doctor telling them the info rather than getting it themselves - these are mostly older adults who, because of being raised in a different generation, where their doctor was the one with all the answers or they felt the doctors were much smarter, or whatever the reason - relied on the doctor to have the expertise. If a doctor wrote them a prescription to "go join a gym or yoga class or tai chi" they would fill it like a prescription for a drug - knowing that the doctor knew best. Today, many of us are more than capable of being our own advocate, however we are not privy to the information
that is most helpful to us. Sleep apnea is a fairly new "disease" so we are all learning as we go along. Thank goodness for websites like this one - where we can all interact and find some solutions.

I would like to know more about MY sleep apnea which as of today is determined to be both obstructive and central but mostly central. This is a SERIOUS diagnosis and I take it seriously. Unfortunately, I have to sleep my day away because my nights are spent waking up and adjusting a mask, readjusting a mask when I turn over, just plain waking up and not knowing why, etc. etc. I have a wonderful machine with all the latest for central sleep apnea, however because my BRAIN is not getting the signal to tell me to BREATHE I feel that this is only a somewhat helpful device, although as far as I know there is nothing else for me.

Does anyone know of a trial or program I could become involved in that would address CENTRAL sleep apnea. I'll go to
Alaska if I have to, but I doubt there is such as program or trial. You see, doctors haven't gotten to the point of having the answers yet. Doctors are just like us, except they have gone through 8 years of highly intensive training to be MDs - they are taught to diagnose and treat. Right? Doctors don't know everything! They are human beings just like us -ONLY WITH TRAINING. Yes, I know I sound frustrated - because I am. I know there is nothing more I can do except follow the doctors advice - do everything they say and hope for the best. Sitting back and doing nothing is not an option. Ron
I like # 6, particularly the mention of A.W.A.K.E. groups. I've led two A.W.A.K.E. groups for years and am the Past Chairman of the American Sleep Apnea Association which fosters the A.W.A.K.E. Network. This is a good place for those who are not internet savvy to go, to get information in person, that they are not receiving from their DME or physician.

I do agree with #7. When someone asks "do you really have to use that machine and mask the rest of your life?" my quick response is " Yes, but with that mask and machine I actually have a 'rest of my life' and the quality of that life is very good compared to what I had before I was treated." CPAP reduces my 82 events per hour down to about 1-2 events per hour and I feel good because of it. Sleep apnea IS a chronic disease, like diabetes or COPD, or even heart disease, and you have to learn how to accept your diagnosis, find the best treatment for yourself, and then stay compliant with that therapy, whether it's wearing eyeglasses, using CPAP, or taking your medications.
Great points as a apnea client I always find KNOWLEDGE IS POWER and also enpowering ourselves is the ticket to our success. i find that I do my machine a sleep at a time I agree we must wear ur machines eac sleep even if for 1/ 2 hour. The consistency is and will always be the key to our progression. Thanks for your 7 tips I loved the article look forward to the next.... Nurse lori
Wish all doctors were as enlightened as Dr. Park about the plight of the apnea patient.
My primary care physician has absolutely no interest in my sleep apnea or my CPAP usage. At physicals I tell my PCP that I am still on CPAP and tell him my average AHI for the past week -- and he totally ignores it. The last time I saw a sleep specialist was about 14 years ago when he performed what is now called an MMA.

My most recent sleep study was about three years ago -- I told a PA in my doctor's office that I have sleep apnea, that I use a CPAP, and I needed a new sleep study; she then ordered the blood tests and a sleep study. Other than the blood tests, she didn't do any sort of exam or ask me any questions.

I never saw or talked to a doctor at the sleep clinic; a clerk called me and asked me which DME she should fax my script and sleep study too. The clerk also faxed me a copy of my script and sleep study. The sleep study techs gave me CDs of my polysomnograms the morning after each study. If I hadn't been on CPAP for the previous several years, I would have been totally lost.

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