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Sleep Apnea issues

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Ruby +0 points · 4 months ago Original Poster Sleep Commentator

Once people finally get diagnosed and start sleep apnea treatment, what are the issues that make it hard to stick with it? For me, it was the whole idea of having to wear the mask. I hated the feel of it, the look of it, feeling like I was tied to it, traveling with it....everything about it. I'm in a love/hate relationship with it now after several years of use. Not having anyone to really talk to about it didn't help either. It was a "here is the thing that you have to have, now go away and use it".

I guess that if you are on this forum, you are using your CPAP machine or other treatment options at least part of the time. Would you answer some questions for me? 1. What would make it easier to use it more?
2. What are ways you are coping with it?
3. What would be on your wish list for better treatment and/or machine? 4. Who or what has helped you the most with your diagnosis and treatment? 5. What have you tried? What worked? 6. Add any comments that pertain to this topic.

There is a big issue with people not adhering to treatment options. There seems to be some forward movement in using home software to know what is going on while you sleep but many people don't get to that stage. They quit before they see any benefit from treatment. This forum is great in helping with actual readings of reports but it seems like there are a lot of people who are slipping through the cracks. I'm just looking to see if there is a way to help more people. Thanks!

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bonjour +0 points · 4 months ago Sleep Commentator

The issue is, and there are exceptions, that the Medical Community typically does not offer the schooling, the information, the support groups to help the patients get started with their treatment. The best current is with online forums, where there are successful users who have collectively experienced pretty much anything that a patient is likely, or unlikely, to encounter. Masks are a big problem because our faces are all different. We can all use the same machines, but the interface, masks, must conform to each individual. Few DME's have beds so their patients can lie down in a sleeping position to try the masks on. Our faces change shape because gravity pulls our face into different shapes depending on if you are standing or sitting in a chair, on your back, left side, right side, or even on your belly.

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jeffez +0 points · 4 months ago

Maybe try walking around the house, watch TV with just your mask on(no hose), getting used to "the thing" on your face.

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Biguglygremlin +0 points · 4 months ago Sleep Commentator

This is an important subject and deserves to be treated with all seriousness.

  1. What would make it easier to use it more?

I couldn't use it more than I do at the moment.

  1. What are ways you are coping with it?

Endurance, compulsion, necessity. What choice do I have?

  1. What would be on your wish list for better treatment and/or machine?

(See final comments)

  1. Who or what has helped you the most with your diagnosis and treatment?

My thanks go first and foremost to Mr Google and also the the brave members of this forum with a special mention of Sierra (even if he did shortchange me on my chart readings)

  1. What have you tried? What worked?

There are still a few things I haven't tried. Very few things worked.

  1. Add any comments that pertain to this topic.

I think there should be bells and whistles, bows and ribbons, free steak knives and bonus prizes and, of course, dancing girls. A trained masseuse along with chocolate masks and accessories would be nice too.

Even then my attitude towards the mask and machine would be less than civil.

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jeffez +0 points · 4 months ago

If you were a Texan, you'd probably try TEQUILA! Not pronounced "to kill ya". ;-)

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Sierra +0 points · 4 months ago Sleep Innovater

Easily the mask comfort and leaks was my biggest issue. Took me close to a year to solve it.

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KangarooTailStew +0 points · 4 months ago

Me too for sure.

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thegreatgrampa +0 points · 4 months ago

Ruby asks: There is a big issue with people not adhering to treatment options. There seems to be some forward movement in using home software to know what is going on while you sleep but many people don't get to that stage. They quit before they see any benefit from treatment. This forum is great in helping with actual readings of reports but it seems like there are a lot of people who are slipping through the cracks. I'm just looking to see if there is a way to help more people. Thanks!


My biggest concern is the very fact that people do quit before ever reaching out to a forum. It's important for them to have someone to reach out to, as nothing is natural about a CPAP machine or OSA. As Sierra said, the masks can be the biggest issue and obstacle and at a very high cost. BonJour said it best. The medical doctors in my experience offer very little help, and seem to think if you are <5.00, everything is fantastic. The DME's, just like the doctor, have so many clients and rarely can answer an intelligent answer about your problem. One actually told me they had over 1000 patients and she just don't have the time to look at charts. After 4 DME's with that type of thinking I chose to fly solo. Thank God the forums were there and I seen hope every day from people having problems just like me. If I wouldn't have the forums there is no doubt I would be one of the 50% who would have given up.

The question is, how do we reach out to these people and bring them in to a forum before they quit and possibly suffer major diseases attributed from sleep apnea?

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Biguglygremlin +0 points · 4 months ago Sleep Commentator

It's a good question thegreatgrampa with few workable answers.

I don't intend to derail this thread but I think it's important to understand that research seems to indicate that the major diseases you speak of are caused by the same things that cause Apnea but not by Apnea itself so in a way CPAP simply masks the real dangers that can still kill us.

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thegreatgrampa +0 points · 4 months ago

The major issues I speak of are heart disease, high blood pressure, A-fib, diabetes etc. I don't believe any of those causes Apnea, but can lead to them if Apnea is untreated. The countless stopping of breathing with untreated Apnea can take a huge toll on your body. At the present I do not believe there are any cures for Apnea. A better word for masking Apnea IMHO is "treating" Apnea. Just like taking a pill for high blood pressure may control it, but it sure doesn't cure it. Quit taking the pill and you still have it. Stop Cpap and you still have Apnea. My question to you is since I already have all those diseases I mentioned due to not being diagnosed 30 years previously, what will Cpap prevent? Maybe an early death? I'm 72 and between the diseases I still posses including arthritis, glaucoma and living through prostate cancer, I certainly don't fear death. Maybe my message is for younger Cpap users who haven't experienced all the pain and suffering all the described diseases cause, and to keep that mask on no matter how much it inconveniences you. I know all people with Apnea are not overweight, but losing weight if you are, will also greatly help.

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Biguglygremlin +0 points · 4 months ago Sleep Commentator

Yes that is what we have all been led to understand, (Apnea leads to Cardio Vascular Disease) and it does seem logical, but the facts do not seem to support that theory.

Treating Sleep Apnea

I suspect that the most harm that untreated Apnea does is kill brain cells.

Cardio Vascular Disease may be caused by the same conditions that cause Apnea, which are predominantly age and weight, but it's a mistake to believe that Apnea is the cause.

It seems that, despite many claims to the contrary, Apnea treatment will not reduce the risk of Cardio Vascular Disease.

CPAP has benefits obviously but, if we want to prevent Cardio Vascular Disease, we have to do something about the real causes.

We can't get younger but we can get fitter and healthier.

Who knows, if we understand the real dangers, and do something about them, we may be able to park the CPAP back in the cupboard!

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SleepDent +0 points · 4 months ago Sleep Commentator

I am a dentist working in dental sleep medicine. There has been much speculation on the forum as to what treatment of obstructive sleep apnea will or will not accomplish. Opinions vary. But let's cut right to the bottom line-- total life expectancy. Several long-term, large sample cohort studies have concluded that untreated moderate to severe obstructive sleep apnea will, on average, reduce a person's life span by TEN YEARS. And after all, leading a longer, healthier life is the ultimate goal. End of story. Arthur B. Luisi, Jr., D.M.D., The Naples Center For Dental Sleep Medicine.

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Biguglygremlin +0 points · 4 months ago Sleep Commentator

In the world of chaos bottom lines are always negotiable.

In the world of chaos simplifications and statistics are always misleading.

In the world of chaos I have dared to challenge some long standing assumptions because static assumptions are something we can't afford at the pace we are now moving.

However I am not advising Apnea sufferers to discontinue treatment.

Therapy is certainly beneficial, especially because it comes with a bonus.

There are powerful reasons for the prolonged life spans.

Reasons that go above and beyond the current inept treatments for Apnea.

If you have the knowledge, determination and means to access and use Apnea therapy you can also apply those same advantages to your health, fitness, diet and lifestyle.

That's the message we should be promoting!

If you have the support and means to access Apnea therapy you likely have the support and means to get medical advice, early intervention and the best treatment for a whole range of life threatening diseases.

Use those resources, get regular check-ups, follow up on symptoms, get referrals. Use the advantages you have and yes, if you have the means, support research.

It's likely that the circumstances that enable you to use Apnea therapy will have a far greater effect on your life span than the therapy itself.

Things are rarely what they seem.

The story is far from ended.

This book is still being written.

Let's hope the next chapter is better than the last one. :)

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SleepDent +0 points · 4 months ago Sleep Commentator

I think that your over-all approach has merit. And I would agree that, compared to other conditions, the treatment of apnea is relatively unsatisfactory in that you are asking people to endure comparatively unpleasant situations like compressed air blowing through their nose and intra-oral trays pulling their jaws forward when they need peace and quiet to sleep. Remember that the treatment of apnea is in its relative infancy, having started only in the 1980's. Being an honest person, I readily acknowledge that people have every right to be less than enthusiastic about their present options. It is unfair for health care professionals to pretend that the apnea patients's situation is good and that what is asked of them is easy and routine. It is not. If a person is very symptomatic and non-functional with the apnea, and the treatment makes them feel much better, at least that is reinforcing. When a person is not symptomatic or mildly so, asking them to endure the treatment for a theoretically better health outcome becomes harder. I get that. Arthur B. Luisi, Jr., D.M.D.

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KangarooTailStew +0 points · 4 months ago

If it feels good do it?

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itsdrew93 +0 points · 4 months ago

Whats all this talk about life span what does sleep apnea decrease your life span

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Biguglygremlin +0 points · 4 months ago Sleep Commentator

Hi again itsdrew93

I presume this is more of a personal question than a statistical debate and in either case I can only make a very vague guess based purely on my own prejudices and opinions.

I suspect that you have a mild case of Apnea but a serious case of anxiety, which we all have to some degree. It's essential to life.

As for the Apnea it is unlikely that lack of therapy would make much difference to your lifespan if it's only mild, but you are still quite young and likely to have fitness or health issues that will impact on your life span in the long run even if they don't get worse.

This is where my discussions above come in.

If you ignore your general health and it deteriorates the impact on your life could be really bad.

That is the worst case scenario.

If you persist with your Apnea therapy and view it as a protection your health will still deteriorate but with some awareness on your part and access to good health services you can avoid or delay some of the major health issues.

That is probably where most of us CPAP users hang out.

If you embrace Apnea therapy but also do something about your lifestyle and deteriorating health you will have the threefold benefit of improved lifestyle, improved health and good health services.

That is where we need to be!

There isn't really a credible answer to your original question itsdrew93 but SleepDent used a nice round number above. (ten years) It's as good a number as any for this discussion although I believe it applies to the circumstances that cause Apnea, and the circumstances that prevent or delay treatment of serious diseases, rather than to Apnea itself.

.

Anxiety, which is a natural response to life, can get stuck in overdrive and cause serious stress to the whole body, so perhaps that is something we all should find a way to manage.

Sometimes, (but not always) a clearer picture can be reassuring, so have you considered buying a fitbit type wrist or finger device so you can sleep confidently, knowing that your sleep is being monitored and that any truly dangerous patterns would be evident in the first few nights?

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itsdrew93 +0 points · 4 months ago

Yh nice one mate and yh suffer with anxiety have done for years and yh thanks could do with some mask fitting tips. I didnt realise how dangerous sleep apnea can be well is

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itsdrew93 +0 points · 4 months ago

So if i keep fit it will do my apnea good

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Biguglygremlin +0 points · 4 months ago Sleep Commentator

I am not a doctor nor have much information about your circumstances itsdrew93 but at your age, if you could improve your overall health, fitness and lifestyle you could kiss that CPAP goodbye and enjoy decades of fun and freedom without having to worry endlessly about the next problem.

I'm in my 60s now and everything just kind of snuck up on me so by the time I realised how much trouble I was in it was a very long crawl back out of this hole, especially with worn out joints and a lifetime of bad habits.

Turn it around while you are still young. Yes sort out the medical stuff but then move on and focus on your goals and interests and hobbies.

You took the time and effort to look for answers.

You have what it takes to turn this around and really live!

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SleepDent +0 points · 4 months ago Sleep Commentator

As far as we know, at this time, mild sleep apnea does not seem to impose the serious average decrease in life span that untreated moderate and severe apnea does. Physicians tacitly acknowledge this in that they generally push harder to get people with moderate and severe cases into effective treatment than they do with the mild people. One caveat though, I have been in this business fourteen years, and the tendency has been to push the concerning symptoms lower and lower into the AHI range as the research unfolds, so I wouldn't be totally complacent in the mild range. Also, some milds tend to be quite symptomatic. Arthur B. Luisi, Jr., D.M.D.

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