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[Treatment] Would you ever want other treatment options for OSA? Share your story!
#11
RE: Would you ever want other treatment options for OSA? Share your story!
PAP treatment is absolutely horrible and comes with limitations/side effects that - I believe - are not sufficiently acknowledged by the 'sleep industry'.

While PAP does indeed appear to 'fix' apnea in terms of AHI, my experience is that it does NOT provide restful, refreshing sleep for many users, maybe even the majority. Just take a little time to delve into this excellent forum looking for stories from users who complain their apnea is apparently under control, yet they are still dog-tired. There's an awful lot of us.

Does sleep while using PAP even count as real sleep as far as our bodies are concerned?

For sure, I would not persist with PAP were it not for the fact that I have heart disease and so have a real medical need to get my apnea under control. I am 100% compliant, by the way.

But most mornings, I wake feeling like I just took a long-haul flight through ten time zones, during which I supposedly 'slept' - though we all know sleep in a noisy, pressurised airplane doesn't count as real sleep. That crappy feeling as you stagger bleary-eyed across the airbridge, ears ringing, mouth tasting like cr@p and eyes unable to focus, is how I feel - every morning.

But my AHI is low, so that's good. Right?

Oh and then there's the gas, phhrrrrp Unsure 

Please, please, PLEASE develop a minimally-invasive, reliable and long-lasting surgical fix. I'll punch, scratch and wrestle my way to the front of the queue!
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#12
RE: Would you ever want other treatment options for OSA? Share your story!
One of the issues of sleep disordered breathing that gets nearly no attention from the medical community and insurance industry is flow limitation, generally associated with upper airway restriction. This is actually the root of all obstructive breathing and is the foundation of RERA, hypopnea and obstructive apnea. Flow limitation is rarely measured in diagnostic sleep studies, in part because otolaryngologists have persuaded the medical community it requires an invasive manometer to diagnose it, yet we can easily see it and Resmed quantifies it mathematically based on the respiratory flow rate. The flattening of the peak inspiratory flow causes a chronic increased respiratory effort and results in poor sleep quality and often low SpO2 saturation during sleep. Flow limitation is frequently associated with more acute obstructive sleep apnea events, yet CPAP is not very effective in treating it.

Bilevel PAP does a good job of providing pressure support to overcome the increased effort of respiration in the presence of flow limitation, but modern bilevel machines use pressure support algorithms that follow spontaneous effort, so when flow is limited by airway restriction, pressure support usually does not reach intended set goals. For example a person using pressure support with a setting of 5.0 cm above EPAP, will often see only a weak response of 2-3 cm pressure support in the presence of flow limitation. As a result of this problem, some of the more progressive physicians specializing in treating flow limitation like Dr. Krakow, are now using ASV other machines that adjust pressure support to maintain a target minute vent or tidal volume, rather than just follow spontaneous effort.

As you probably know, treatable sleep disordered breathing is what insurance providers have defined in conjunction with some physician committees. Many people are told their OSA is not severe enough for treatment. For the others, everyone is diagnosed with obstructive sleep apnea, regardless of the real clinical presentation, which may range from flow limitation, to central or complex apnea and untold variations of pulmonary or neurological dysfunction. This is done because insurance insists that everyone that "qualifies" for therapy begin by using CPAP, and must fail CPAP before moving on to more advanced bilevel and respiratory assist devices. The high failure rate of CPAP is in large part due to dispensing of untitrated machines, and machines completely inappropriate in therapeutic intent to treat more complex cases. There are thousands of individuals that arrive at this forum essentially untreated, and most of them go on to be successfully treated with their CPAP, or learn enough to self-advocate or self-fund the more advanced therapy they need. The vast majority of sleep doctors seem uncaring of the problems their patients encounter, and many have no apparent expertise to do much more than sign the reports of the technician at a sleep center. Hang around the forum for a while and keep an open mind. You'll be amazed at how easy this stuff is, and how many people are simply neglected by the medical community.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#13
RE: Would you ever want other treatment options for OSA? Share your story!
(10-05-2020, 04:36 AM)StevesSp Wrote: . . .
But most mornings, I wake feeling like I just took a long-haul flight through ten time zones, during which I supposedly 'slept' - though we all know sleep in a noisy, pressurised airplane doesn't count as real sleep. That crappy feeling as you stagger bleary-eyed across the airbridge, ears ringing, mouth tasting like cr@p and eyes unable to focus, is how I feel - every morning.

But my AHI is low, so that's good. Right?

Oh and then there's the gas, phhrrrrp Unsure 

Please, please, PLEASE develop a minimally-invasive, reliable and long-lasting surgical fix. I'll punch, scratch and wrestle my way to the front of the queue!

SteveSp doesn't speak for me.  I was fortunate enough to find this forum early in my CPAP experience, and I have adapted to CPAP therapy very well.  I did well with my 1st machine, and I'm doing even better with my 2nd.  I actually look forward to bedtime and putting on the mask.  The downside of all other treatments I am aware of is that they produce no data to monitor what is happening on a continuing basis.  This is critical, as our bodies are in constant change, not the least because of aging, medication changes, illness, etc.  Only CPAP treatment lets you know if treatment is being effective, or needs to be adjusted.  The Sleep doctors and other sleep "Professionals" who rely on the Autoset machines to adjust to the patients nightly needs are just ignorant.  Read this forum for a while and you will see.
A.Becker
PAPing in NE Ohio, with a pack of Cairn terriers
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#14
RE: Would you ever want other treatment options for OSA? Share your story!
Well, to answer your question "Would you ever want other treatment options for OSA"?


My answer:  YES--  I would like a single pill to swallow that would make all sleep apnea problems go away.  And I don't want it to cost more than $10, nor to have any side effects.

Well, you did ask, didn't you?   Bigwink Too-funny


Seriously, the last thing I would want is to be subjected to a doctor cutting away at me in hopes that such surgery would be like that mythical "pill" I joked about above.  Surgery is such a permanent thing - too many risks and really, far too many unsuccessful results for my taste.

The one thing you have to realize is that for the vast majority of patients who have no success with CPAP, it's due to the very thing that Sleeprider and others have pointed out - a complete lack of patient follow-up and coaching on the part of sleep professionals, including patient feedback and continual monitoring and analysis of their CPAP data.  They're just too busy for that sort of thing.  But that sort of thing is exactly what is needed to ensure successful treatment.

If it weren't for those issues, this forum would not be necessary.

But until that follow-up, coaching, feedback, monitoring and analysis is adopted by all health care professionals in the sleep apnea industry, Apnea Board will be here-- and our members will be helping those who aren't being helped by the medical professionals, many of whom seem to have the "set up the CPAP and send them home" mindset, where they're only interested in the data to record compliance for insurance purposes.

You want the truth?  The TRUTH is that if health care professionals REALLY want to serve the patient, they should EITHER come here to get a REAL education on fine-tuning and optimizing CPAP therapy, rather than ridiculing places like this in their all-too-often haughty superior attitude that "I'm the trained professional here, you should rely upon me rather than some goofball on an internet forum", OR-- at least send their patients here so they can receive the follow-up, coaching, feedback, and  monitoring using the OSCAR software and get real help to analyze their data and individual therapy issues.

Either way, I'm not holding my breath for either one of those things to happen - at least not for the vast majority of sleep apnea professionals.

So I think Apnea Board will be around for a long, long time.

Coffee
SuperSleeper
Apnea Board Administrator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.




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#15
RE: Would you ever want other treatment options for OSA? Share your story!
Short answer: To paraphrase Winston Churchill, CPAP is the worst form of therapy except for all those others that have been tried.


Longer answer:
I HATE (hate!, hate!! hate!!!) having to strap that mask on my face every night (someone on YouTube actually modified his mask to look like the creature from the movie Alien ;-)
Among the MANY issues:
- puts a barrier between my wife and I

- it's uncomfortable and leaves marks on face.

- mask adjustment / leak management can be difficult.

- Ongoing care/cleaning/maintaining supplies is a HUGE pain (and expense)!

- I hate to drag that case around when traveling.  Not even going to bring up the various difficulties in airports, and while hotels have gotten better (due to charging phones), many do not have reachable outlets next to the bed.

BUT, PAP therapy is giving me my life back!  For the first time in years I'm sleeping for more than 1-2 hours without getting up to use bathroom.  Just last week hit a new milestone, I slept for 7 hours straight!!  I can go to a movie with my wife, and not fall asleep.  Still don't feel "great", I have years of sleep-debt / apneic sleep to reverse, but it's getting better.

I would LOVE a one-and-done surgical solution, but for me, it would have to have a proven track record of ELIMINATING PAP therapy, before I'd be willing to go "under-the-knife".

I'm a relative newbie here, and don't have any sage / practical advice on changes.  But there does need to be a recognition that the medical community is failing in this area!!  It amazes me that on the one hand we're told that CPAP therapy is so mysterious and dangerous that users aren't suppose to see their own sleep data or touch the clinical settings on their machines.  And yet after one night in hell (sleep study), we're handed a machine and a mask and told to go home, and use it every night.  

And, when you call your doctor or DME, the answer to every question is NOT, "you have to give CPAP a chance, just be patient."
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#16
RE: Would you ever want other treatment options for OSA? Share your story!
Thank you all for your insights and for sharing your stories. It's clear that a lot of the current "solutions" have ignored what bothers/affects patients the most and we're starting to get why so many are unable to tolerate the current devices!
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#17
RE: Would you ever want other treatment options for OSA? Share your story!
I developed atrial fibrillation some years ago--happily solved for now due to an ablation. Needless to say I don't want to go there again so I take my cpap seriously, beyond just wanting to have a good night's sleep. (And no, it's not a sure thing that my apnea 'caused' my afib but there's a strong association and I don't want to play around.)

I don't really mind using a mask that much. Of course I'd prefer to not have to wear one. But I'm a bachelor so it's not that big of a deal in a way. Sleeping with a new partner...I might forgo the cpap for some nights in order to not freak them out. So there's that. In the end I'd prefer a good night's sleep to a good...partner. Sad that we have to make these choices.

Treating apnea is incredibly important. Some new, less hardware oriented therapy that was actually effective would be a game changer. It would replace masks entirely--if it was effective, non obtrusive, and easy to use. Good luck! Hard to imagine that therapy.
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#18
RE: Would you ever want other treatment options for OSA? Share your story!
It would seem (to me) that the medical and insurance fields aren't caring that patients actually feel better.  I've been at this for well over 5 years and I can count on one hand the nights of truly refreshing sleep.  The insurance companies use AHI = 5.  I can tell you that if I have a 2.5 evening, things are not going to go well the next day.  At > 3.0 I am a total wreck, just about incapacitated.  Even if my AHI is 1.X it does not mean that I am refreshed.  Unfortunately, the two sleep doctors I have seen march to the 5.0 mantra, even though I have explained that my sleep is not refreshing.  

Furthermore, they have refused to look in any detail at the years worth of actual data.  My sleep studies were horrible, with strange and uncomfortable beds, weird crap on your head and hands, covered in cables, bad pillows, wrong temperature, etc.  How any normal person could sleep there is beyond me.  It defies logic to think that these horrible episodes were representative of what actually happens in a normal evening, yet the medical profession seems to think its adequate.  The doctors I have used have no idea even how to use or adjust these APAP machines, they have never suggested any thing other than a base pressure from the sleep lab.  They seem to know nothing about flow limits.  No suggestions on how to increase REM sleep, which was noticeably lacking on my sleep reports.

Do I like wearing a full face mask?  NO!  It's horrible.  But it's marginally better than no mask, so I use it.  The normal masks that one gets are not custom fit so they leak, unless you cinch them down too tight.  (Then they hurt!) I have puffed up eye bags s every morning, and I suspect my use of a mask has caused and is continuing me to suffer from dry eye.  Oh, and the darned mask has rearranged my lower teeth, actually pushing them in.  I hate the mask.

Does this mean I'd consider surgery?  Maybe, but I'd like it to be done 1000 times by someone and know what the success rate was.  It would have to be in the 99% success rate for me to even consider it.  Getting cut up for a low probability outcome is not in the cards.  Insurance wouldn't cover it, and neither would I.

I consider this forum to be an oasis of knowledge.  There are a lot of good people here that have helped may people in their sleep journey.  Here you can get actual interpretation of YOUR data and help on settings that might work.  This forum is a national treasure that served not only this nation but others from all over the world.  You can get advise on when to actually believe your doctor, your DME, or your insurance company.  I'm proud to be a member here.  The senior staff here are amazing in their breadth of knowledge.  They are pretty effective in getting good results - and more importantly, they care.  Which counts for a whole lot.

So, if you can facilitate masks that actually fit, and machines that are adjustable enough to suit sufferers like me, or find something better than the above, and help lower the AHI threshold for cured, it would be great!  It would also be nice not to have to jump through countless hoops to satisfy our insurance overlords that would cause us to suffer for years before spending a nickle on effective treatment.  Then we (in general) wouldn't have to abandon treatment or self pay to get effective relief.

In my opinion, many people abandon PAP therapy because it's not effective for them.  Effectivity is not the same as lowering AHI!  If one still feels like crap, why bother with PAP?  If PAP did make one feel better, I'd bet there would be higher retention rates.  (And a lot more effective and productive people!)  My two cents.
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