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sja
Unread post  Post subject: A rant about the reality of Sleep Apnea treatment  |  Posted: Tue Feb 20, 2018 1:05 pm

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Is anyone else appalled that in this era of hyper advanced technology that the processes of diagnosing and Sleep Apnea are such a nightmare?
The sleep studies are a true abomination, and seem highly questionable in a number of ways.
The designs of masks are improving, that's true, that is an area of visible improvement. But I was told there have been SO MANY technological advances over the years. That may be the case (?) but how many of them actually impact the patient experience in a positive way?
The entire process is fraught with difficulties that lead to low compliance rates, that lead ultimately to low success rates. This entire area of medicine seems archaic, somewhat bogus, and objectively not very successful.

However, because I am desperate, I am willing to give this treatment my best effort. Despite my negativity, I do respect and appreciate those professionals who are genuinely invested and want to help- Thank you LankyLefty for all you do- you offer the tools that allow for advocacy and make successful treatment seem possible.


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LSAT
Unread post  Post subject: Re: A rant about the reality of Sleep Apnea treatment  |  Posted: Tue Feb 20, 2018 1:24 pm

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Negative attitudes are a common reason for CPAP therapy failure


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WanderLit
Unread post  Post subject: Re: A rant about the reality of Sleep Apnea treatment  |  Posted: Tue Feb 20, 2018 5:29 pm
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Let's be honest. There is a significant problem with non-non-adherance to CPAP therapy. I don't think it can *all* be chalked up to a "poor attitude".

In my own case, I'm taking the fact that so many people never start or discontinue CPAP therapy seriously. I want to be a success story. I want to be one of those people who LOVE their CPAP. And I want to be one of those people as soon as possible.

To that end, I take the FACT that it is challenging to get a good mask fit seriously. I've watched and read all of the mask reviews here so I can go to my DME provider with an idea of what I want to try. I'm not ashamed to embrace the attitude that I can be as much a little diva about fit and feel as I want because so much is riding on finding the best mask for me.

To that end, I take the FACT that people find it challenging to get used to feeling air pushed into their lungs and having to exhale against the current seriously. I'm researching the auto pap machines to find the one that will stay as low as safely possible and adjust as subtly as safely possible until I can successfully make that adjustment and set it to remain steady at my therapeutic pressure.

I also take the FACT that so many people feel less attractive, less natural, less themselves on CPAP seriously. Sure, that's all "attitude", but it's a common one and I think one that is easily understandable to a compassionate observer. So I got a new bed side table to be my "night spa" I have a special shelf just below the level of my bed for the machine, an essential oil diffuser I can position strategically to my CPAP fan intake for relaxing aromatherapy, I have a cooling lavender eye mask to block light, I have I statue of the sleeping Buddha, I have lovely floral hat boxes for my masks and hoses. I have a crystal cruet with a glass stopper for my distilled water. I have silk scarves I can wrap my hair in to protect it from breakage. I'm doing everything I can to make using CPAP seem like a spa treatment rather than a medical intervention.

I also understand the FACT that successful CPAP users often come to LOVE their CPAP treatment for the difference a good night's sleep makes in their health and yes, in their attitude. The trick is to get through the challenges so we can join the successful ones.

I would not have known to do any of this, if I didn't take the harsh realities of CPAP treatment into consideration.

Kudos to you sja! Sometimes a positive attitude doesn't come naturally and has to be carefully crafted. I'm taking the challenges seriously with you. We'll get through the trial together and once we are no longer sleep deprived, I'm sure both our "attitudes" will improve enough to please even LSAT. :-)

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TheLankyLefty
Unread post  Post subject: Re: A rant about the reality of Sleep Apnea treatment  |  Posted: Tue Feb 20, 2018 9:47 pm
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I feel my own rant coming. :shock:

sja wrote:
Is anyone else appalled that in this era of hyper advanced technology that the processes of diagnosing and Sleep Apnea are such a nightmare?
To me, diagnosing doesn't seem as bad as the treatment segment. I can understand that from a patients perspective the diagnosis can be horrible, but a lot has to do with the lab you're tested in and the skill of the technologist....in my humble opinion.

sja wrote:
The sleep studies are a true abomination, and seem highly questionable in a number of ways.
Curious in what way you feel sleep studies are questionable? Not a loaded question, truly curious. :)

sja wrote:
The entire process is fraught with difficulties that lead to low compliance rates, that lead ultimately to low success rates. This entire area of medicine seems archaic, somewhat bogus, and objectively not very successful.
Agreed. My opinion (and reason for starting this "project") has always been that people with sleep apnea want to get better but aren't given the tools to do this. They are tired. They often wait months to be tested. Often the testing "situation" isn't great. Purpose and process aren't explained. There are some REALLY good techs, but some are just plain bad. Then you have to wait some more for the study to be scored and then the results go through a couple weeks to a month to get the finalized report with recommendations and even more time for the follow up appointment. Patient is still TIRED, and now frustrated....

Physician either doesn't know or share any details about what makes a successful treatment. Explanation of the diagnosis is bare bones if there is any explanation at all. (Some physician are excellent at this, but some are really bad). The patient is then told you need to wear this mask...go to "Bobs CPAP Hut" and get your crap. Wear it or else....blah blah compliance. The DME throws a mask and machine at you and say that "everyone love it", which is often code for, "we have a ton of these crap masks in stock and I need to get rid of them."

Throughout this entire process there is one common denominator which is educating the patient about all of this. It really doesn't take that long. I do blame some of this on reimbursement by Medicare as companies have to flex how they do things to keep the brick and mortar in place and the lights on, but it can be done much better and more efficiently.

Back to it. Patient education is CRITICAL to compliance. If I am being honest I hate the word compliance and all that it implies. I cringe when I hear it. Compliance in the industry just means that you are wearing it for at least 4 hours. It could be completely ineffective and a complete waste of 4 hours, but you had it on so "yippee". Keep it up and see you in 90 days. But you're often still tired. Compliance is a completely worthless metric to me.

"How do you feel" is a much better metric. That's the whole point of the sleep study in the first place. "I'm tired" got you there in the first place, so "I'm no longer tired" should be the metric if we're really going to boil this whole thing down.

Dude.....I'm totally on a Soapbox....someone push me off!!!! :?

I will stand by it all day, the success rate of CPAP can be 80% easy with some proper follow up and education. The other 20% are full of people that have deviated septum and need it to be repaired before CPAP can be effective, along with people that have COPD or CHF and need a different mode of therapy. Then a smattering of people so pissed off at the process that they back out of the room pumping two middle fingers the the doctor.

sja wrote:
Thank you LankyLefty for all you do- you offer the tools that allow for advocacy and make successful treatment seem possible.

You are very welcome. There is also a very nice sized group of people that offer advice and tips on this website/forum that are worth their weight in gold. They have helped countless people get to the "other side" when they are feeling like you are right now.

LSAT wrote:
Negative attitudes are a common reason for CPAP therapy failure
I agree. I do think that this becomes somewhat of a chicken and egg scenario though. Tired patients and no information and direction is going to lead to failure more often than not. The people who persevere more often than not wind up on online forums seeking help and information. There are people I work with in the "real world" that are more difficult to get to a happy place of successful treatment.

Someone just pushed me off the soapbox....probably diamaunt.... :lol:

Keep your head up sja! :) You've got a group of people willing to back you and help you out. It's not easy for everyone. You really do have to be your own advocate. My entire goal with all this is to provide you with the tools to be your own advocate. I want you to speak with techs, respiratory therapists, and sleep doctors and make them uncomfortable because of what you know. I want them to be accountable to you to explain why and how things work and fess up when they don't know what the "F" they're talking about.

Apparently I just jumped back on the soapbox.

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sja
Unread post  Post subject: Re: A rant about the reality of Sleep Apnea treatment  |  Posted: Wed Feb 21, 2018 1:44 pm

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Uh oh!I didn't mean to stir things up! Lol!

WanderLit, Thanks for your support! I can envision your New Age Sleep Alter!!!

Jason-
Today the Resmed MyAir app gave me a score of 91, and yet I woke with a killer migraine. So yes, I agree- it seems numbers outweigh actual physical outcome.

Okay--
If my ResMed machine can inform as to how many apneas I have, and if the SleepyHead app apparently provides detailed information as to what occurs durning sleep, why on earth do they still insist on hooking us up to eighty million freaking wires and bands in the sleep studies? Not only does it make it almost impossible to sleep, but the fact that there's no control or baseline study makes no sense to me. I did see a comment you made on another post about this, and I get your point that they want to have you supine immediately, etc. But if you look at the big picture, especially in terms of developing effective treatment, it seems superficial and unscientific. If you sleep only a couple of atypical hours at the study, and are booted out before deep REM, when the worst apneas happen, when you do not record the individuals actual sleep habits regarding sleep cycles and positions, when all you really are interested in (for the insurance?) is finding out whether or not the person experiences more than five apneas an hour, what is the point of all the god awful equipment and restrictive conditions of the sleep studies that have not changed or improved in the past ten or more years?
It's true that the labs and techs are all different. I have had a ton of sleep studies. But they are alike in these respects. It seems very very crazy to me.


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WanderLit
Unread post  Post subject: Re: A rant about the reality of Sleep Apnea treatment  |  Posted: Wed Feb 21, 2018 4:15 pm
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TheLankyLefty wrote:
I feel my own rant coming. :shock:


Rants like yours are why message boards need a "like" button!

You aren't kidding about how long it takes to get treated. I joined this forum just before Thanksgiving and right after I got my referral to to a sleep doc from my PCP. Now it's almost Easter and I'm finally reaching the starting gate. My Loooooong awaited intake appointment in in two weeks.

PS - And all that stuff from my post that I take seriously? I learned about it here; and here is where I devised my plan for confronting the obstacles. Thank you for helping me make good use of my wait.

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TheLankyLefty
Unread post  Post subject: Re: A rant about the reality of Sleep Apnea treatment  |  Posted: Wed Feb 21, 2018 5:54 pm
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WanderLit wrote:
You aren't kidding about how long it takes to get treated. I joined this forum just before Thanksgiving and right after I got my referral to to a sleep doc from my PCP.
Holy smokes!!!! You're even later than the normally extremely long waiting period. :shock: I'm so sorry Wanderlit.

sja wrote:
Uh oh!I didn't mean to stir things up! Lol!
No. Stir things up all day long!! :) I just responded to your message about why people "twisted off" on the guy with the survey. I like being questionned on things. Helps sharpen my own arguments, or find out that I'm wrong, or find out that I'm just being a dick. I'm okay with any of those being the answer. ;)

Alright...on to the good stuff.

sja wrote:
If my ResMed machine can inform as to how many apneas I have, and if the SleepyHead app apparently provides detailed information as to what occurs durning sleep, why on earth do they still insist on hooking us up to eighty million freaking wires and bands in the sleep studies?
Several reasons for this: 1.) The machine reported AHI (same numbers imported into SleepyHead) are okay at best. Still important to look through it on your own and decide what is real and what is likely in need of being thrown out as a false positive....and even some false negatives being flagged.

2.) You are being treated when using a CPAP machine. This wouldn't be diagnostic information.

3.) Machine information and phone apps, fitbits...etc don't report anything of great value on their own. Okay for ballpark information, but not what really is going on. Sleep Studies look at EEG which is critical for an accurate AHI. The they utilize a thoracic and abdominal belt along with the naso-oral cannula to accurately determine if it's Obstructive Apneas, Central Apneas, or likely Complex Sleep Apnea.

The wires are needed to collect all that information, though half of them are redundant because people with OSA get a little squirrelly when sleeping and often pull electrodes out. Redundancy keeps the tech out of the room so the patient isn't interupted as much. (Spamming my own forum) AXG Sleep Diagnostics collects all this AMAZING data in the comfort of ones own home with less wires. Why? Glad you asked!!! ;) Because we tried to make a crappy situation a little better.

Why not wireless electrodes? It's been tried, but there are a host of serious problems with this.

sja wrote:
Not only does it make it almost impossible to sleep, but the fact that there's no control or baseline study makes no sense to me.
Not sure what you mean by "not control or baseline study". Are you questionning that sleep is different with wires on vs. sleep without wires on? I don't think I can argue that since it can't be argued. All I can say is that I had no idea I was being tested once I was asleep. I can't see how my airway would react any differently with vs. without wires/testing equipment on me. I can see how Sleep Onset and Sleep efficiency can be altered from the norm, but not respiratory data. I could be wrong, but I don't see how this can be proven either way.

sja wrote:
I did see a comment you made on another post about this, and I get your point that they want to have you supine immediately, etc. But if you look at the big picture, especially in terms of developing effective treatment, it seems superficial and unscientific.
I don't see it as superficial. It's the testing environment. I don't really stress having people sleep supine because even the people that say they never sleep supine always seem to roll to their back on their own. It's all about getting as many data points as possible for more treatment options. Example (and another shameless plug for AXG Sleep Diagnostics): we have had several people that have sleep apnea only while on their back. The Federal Aviation Administration (most of my patients are pilots) says that positional therapy (fancy for: "stay off your back when you sleep") is okay. These people are very happy to do this and avoid using CPAP if possible.

sja wrote:
If you sleep only a couple of atypical hours at the study, and are booted out before deep REM, when the worst apneas happen, when you do not record the individuals actual sleep habits regarding sleep cycles and positions, when all you really are interested in (for the insurance?) is finding out whether or not the person experiences more than five apneas an hour, what is the point of all the god awful equipment and restrictive conditions of the sleep studies that have not changed or improved in the past ten or more years?
I see what you're trying to say, but that's way lower than the actual threshold for diagnosis. In my lab we don't start people on CPAP unless they have an AHI over 10 per hour and 30 or more events. We also always try to get a REM cycle. The reality is that people with severe OSA often have very little REM sleep. They also do sleep in whatever position makes them the most comfortable (aside from Nazi techs or physicians that insist on supine all night).

I have to get to going now, but I think that some of what you are saying is misrepresented. Hopefully I did an adequate job explaining why some of the crappy things are in a sleep study. Electrodes should be attached with the equipment out of the way so that patients can move freely. We really stress this at my lab. They can barrel roll and it's all good. We still hear this complaint about restrictive equipment, but it's usually because the tech didn't tell them not to worry about dislodging equipment because X, Y, and Z.

Don't get me wrong....it's a LOT of crap that's on you during a study. It IS crazy, but all the sensors are necessary for a complete picture that can't be obtained from anything wireless or "easy". From experience I know this very well. I've had about 20 studies on myself....more if you include home sleep tests. Let me know if I missed anything or if you're just not buying it. Curious to know your thoughts.

Take care.

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diamaunt
Unread post  Post subject: Re: A rant about the reality of Sleep Apnea treatment  |  Posted: Thu Feb 22, 2018 1:23 am
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TheLankyLefty wrote:
Someone just pushed me off the soapbox....probably diamaunt.... :lol: .

Why, I NEVER *hides pointy stick*, *looks innocent*

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TheLankyLefty
Unread post  Post subject: Re: A rant about the reality of Sleep Apnea treatment  |  Posted: Thu Feb 22, 2018 9:02 am
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diamaunt wrote:
Why, I NEVER *hides pointy stick*, *looks innocent*
:lol:

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sja
Unread post  Post subject: Re: A rant about the reality of Sleep Apnea treatment  |  Posted: Thu Feb 22, 2018 10:37 am

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Hi LL,

Thank you so much for your thorough response. It helps. I get it.

But yes, I did find the equipment highly restrictive and also tangly.

Some of the things you say make me wonder about my situation:
I never saw a full report, but was told that I had an apnea every seven minutes, or nine per hour. No REM sleep was recorded during the study, as I was awakened and the study ended before that happened. I was told only that the apneas would likely increase during that time.

In your studies do you look for under ten during deep REM?

I did have a physician a few years ago who recommended the tennis ball solution, but I never followed through. I have no idea in what position my apneas are most likely to occur.

Another random thing- when I tried the home sleep study twice recently and did have it confirmed that I inserted the nasal canula properly, the respirations were not recorded either time. They had no idea why. Weird, right?


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audihere
Unread post  Post subject: Re: A rant about the reality of Sleep Apnea treatment  |  Posted: Fri Feb 23, 2018 4:37 pm

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It does take some getting used to but I was one of those first night and 1000% feeling better the next day so no turning back people.

All my life I'd never been able to fall asleep on my back which I always sort of wondered about, I have some hypotheses now but anyways, my most recent update is I fall asleep on my back (raised on very large wedge pillow to swallow less air) with full face mask (because I just couldn't keep my mouth shut) wearing the Dakota neck thing (to finally keep my mouth shut) AND I WAKE UP IN THE MORNING IN THE EXACT SAME POSITION AS I WENT TO SLEEP. Totall amazing. My Fitbit is also showing much higher REM stage times. Dreaming is way up. So, everyone is different and it takes some effort to find out what can work for yourself.

As for taking too long to get the hardware, been there done that. I would have paid cash up front had I realized it would actually work. But instead I leave everyone with one piece of advice. Stay the hell away from Apria Healthcare as a DME. https://www.bbb.org/sdoc/business-revie ... complaints

I'm out.


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sja
Unread post  Post subject: Re: A rant about the reality of Sleep Apnea treatment  |  Posted: Sat Feb 24, 2018 11:03 am

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From what I’m reading on this forum, the experiences and results are all over the map. I’m glad to hear you say you sleep propped up. I feel I can tolerate the CPap better if I do that. I tend to sometimes start out the night propped up anyway. I suspect apnea’s are fewer in that position? It’s later on, when I can’t deal any longer with the mask that I take it off, and revert to lying down flat on my side. Trying to increase the hours I do the CPap. The most I’ve gotten so far is 6. And that was only once. Mostly 5- ish. I suspect I won’t start feeling better till I can wear it for 8 hours every night.


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sja
Unread post  Post subject: Re: A rant about the reality of Sleep Apnea treatment  |  Posted: Sat Feb 24, 2018 12:08 pm

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Right now I think I may be wearing the mask during the hours when my episodes are lowest. I need SleepyHead.


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diamaunt
Unread post  Post subject: Re: A rant about the reality of Sleep Apnea treatment  |  Posted: Sat Feb 24, 2018 12:17 pm
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sja wrote:
Right now I think I may be wearing the mask during the hours when my episodes are lowest. I need SleepyHead.

and so?

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sja
Unread post  Post subject: Re: A rant about the reality of Sleep Apnea treatment  |  Posted: Sat Feb 24, 2018 1:29 pm

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And so that seems therapeutically less than optimally effective. It seems I’d benefit more by wearing it later rather than earlier.


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diamaunt
Unread post  Post subject: Re: A rant about the reality of Sleep Apnea treatment  |  Posted: Sat Feb 24, 2018 1:37 pm
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sja wrote:
And so that seems therapeutically less than optimally effective. It seems I’d benefit more by wearing it later rather than earlier.

Your episodes are always going to be lower when you're wearing the mask than when you're not.

Wear it all the time.
Period.
End of story.

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sja
Unread post  Post subject: Re: A rant about the reality of Sleep Apnea treatment  |  Posted: Sat Feb 24, 2018 2:08 pm

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I’m working on it. Not disputing that needs to happen. I’m just not there yet.


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JennieBee
Unread post  Post subject: Re: A rant about the reality of Sleep Apnea treatment  |  Posted: Sat Feb 24, 2018 2:37 pm

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sja wrote:
I’m working on it. Not disputing that needs to happen. I’m just not there yet.

The important thing is that you're working on it, not walking away. Hang in there.


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sja
Unread post  Post subject: Re: A rant about the reality of Sleep Apnea treatment  |  Posted: Sat Feb 24, 2018 4:39 pm

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Thank you!


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TheLankyLefty
Unread post  Post subject: Re: A rant about the reality of Sleep Apnea treatment  |  Posted: Sat Feb 24, 2018 7:07 pm
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sja wrote:
In your studies do you look for under ten during deep REM?
I'm not sure what you're asking here. :(

sja wrote:
I have no idea in what position my apneas are most likely to occur.
It's always good to get a copy of your report. Then you have it for reference or if you want to get another set of eyes on it.

sja wrote:
Another random thing- when I tried the home sleep study twice recently and did have it confirmed that I inserted the nasal canula properly, the respirations were not recorded either time. They had no idea why. Weird, right?
Could be two reasons.

1. Cannula was put in correctly to start, but they were dislodged early. Happens all the time. (I have people put tape on either side for my home sleep studies to prevent this)

2. Your mouth was open during sleep and you were mouth breathing (very common if nasal congestion is present). Prevented with oral thermistor and/or nasal-oral pressure transducer. Home studies often don't have an oral sensor that would catch this if congestion is really bad. Usually "enough" air gets through for a signal.

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