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Re: Pros and Cons of Using CPAP

Posted: Tue Dec 22, 2015 7:31 am
by 49er
Julie wrote:So many patients who make up the negative statistics (those going off Cpap) have had no help in using Cpap properly and doctors being just way too ignorant about that are half the problem. It's not that they don't get the science behind apnea, but that they depend on untrained, but greedy DMEs and techs to deal with the mechanics of setting patients up on Cpap. They keep repeating old myths about weight and 'patients can't understand software' (so therefore should not take control of their therapy) instead of becoming informed. A whole generation (if not more) of patients are losing out because of ignorance, laziness and greed!
When I spoke to an ENT about my surgical options (no comments please), he said it was his experience that 50% of patients diagnosed with sleep apnea fail at pap therapy. Wanted to press him on that but there were just too many issues to cover.

It would be great if someone found a way to do a study to see how effective forums like this one and the apnea board were regarding helping folks who were struggling greatly with pap therapy. Have no idea how this could be done but I sure would like to see someone try.

49er

Re: Pros and Cons of Using CPAP

Posted: Tue Dec 22, 2015 11:12 am
by Heart Jumping
northpine wrote:Specifically I am looking for hard stats on survival rates for untreated OSA.

In many of the clinical studies I am find words like, "less than foolproof", "may" and "confounding variables". Anecdotally if a procedure or program works for an individual then it is certainly the way to go for that particular individual. In my case I am unclear as to the benefits. The results of my sleep tests do not square with the symptoms I present. I was given the sleep test by the neurology department because they are having trouble diagnosing my loss of balance and episodes of slurred speech. I normally sleep soundly, awake refreshed and am alert during the day yet my test results indicate moderate to severe OSA.
Sleeping soundly and waking refreshed are not common apnea complaints , and the other symptoms you report are not common ones I've heard reported for apnea on their own, so I totally understand where you are coming from. It's entirely possible that while investigating the balance and speech issues they've discovered sleep apnea, and that it's unrelated to the issues you presented for. It's actually surprisingly common to discover one health issue when testing to get to the bottom of another. In my opinion if the results are moderate to severe, finding that out while searching for the cause of the other could be a hidden blessing and you can treat it before it causes serious health problems.
In searching for stats on compliance I am finding a tread referring to a "significant" number of those purchasing CPAP machines do not use them long term but the numbers appear to be vague.
I'd be exceptionally surprised if compliance numbers are above 50%. And it wouldn't surprise me if they are lower than 25%. Reasons:
- While it's not that hard after you've adapted and found the right mask, at first it can be extremely difficult, and a ton of people are going to give up before they reach the promised land.
- Support is horrendous, people are given a machine and they go home. Unless people are self-motivated and find a forum like this, most people are lost and on their own.
- Many people who are diagnosed are probably mild to moderate and aren't feeling the full impact yet. In the absence of waking up choking, high blood pressure and other dangerous symptoms, many are going to be hard pressed to find the motivation. We humans are notoriously short sighted and if we can't see it right in front of us, we're less likely to do something about it, especially when it involves something difficult to adapt to.

So for me low compliance is easily understood and not a sign of ineffectiveness in any way. Well, at least not for the cpap therapy per se. Obviously the issue of non-compliance and how it could be improved is a whole other subject.
Please know that I am not here to be demean the benefits so many here are deriving from using CPAP. I really appreciate the input I am receiving.
No worries, totally understand.

Re: Pros and Cons of Using CPAP

Posted: Tue Dec 22, 2015 11:41 am
by grayghost4
altho not a auto ... it is full data machine for $250
and I have shipped to Canadian and other countries around the world

http://sfbay.craigslist.org/eby/hab/5369560031.html

Re: Pros and Cons of Using CPAP

Posted: Tue Dec 22, 2015 11:48 am
by garagelogician
Pro: Not dying
Con: None worth dying for

Re: Pros and Cons of Using CPAP

Posted: Tue Dec 22, 2015 11:56 am
by chunkyfrog
A mask can be used for many months, as long as it uses replaceable cushions/pillows.
Many users have found that the replacement parts can last longer than expected with proper care. (Timely cleaning)
Mail order filters can cost a fraction of local prices. (My hearing aid cost way more than all my cpap stuff.)
Pretty cheap for a good night's sleep.

Re: Pros and Cons of Using CPAP

Posted: Tue Dec 22, 2015 9:58 pm
by WindCpap
25% cost of a full data cap through adp is $215.

Re: Pros and Cons of Using CPAP

Posted: Tue Dec 22, 2015 10:54 pm
by BlackSpinner
It is not the death rate but the living hell rate that makes the difference. What is the point if you feel like crap, have no energy, couldn't care less about things and can't think straight? CPAP therapy clears most of that up for many of us.

Cons: some skin reactions (use of mask liner) and maybe a bit of upset stomach from swallowing air.

Re: Pros and Cons of Using CPAP

Posted: Tue Dec 22, 2015 11:06 pm
by chunkyfrog
My favorite solution for a strap crease: don't look in the #€¥£?%@$ mirror!

Re: Pros and Cons of Using CPAP

Posted: Wed Dec 23, 2015 9:10 am
by WindCpap
BlackSpinner wrote:It is not the death rate but the living hell rate that makes the difference.
A little off topic, but it is interesting that the same can be said for smoking. I have only ever known one person to die from lung cancer, and that was at an old age. I know a lot of people who's live's have been made hell from COPD.

Re: Pros and Cons of Using CPAP

Posted: Wed Dec 23, 2015 12:36 pm
by herefishy
The cost of mask replacement is not formidable. I am wearing the same one I bought for 90 dollars 4 years ago. You might need to replace a part now and then, and the cushions are about $30-40 dollars, but don't let this worry you.

Re: Pros and Cons of Using CPAP

Posted: Wed Dec 23, 2015 2:00 pm
by BlackSpinner
Hereis an article about simple sleep deprivation. Yes it is about new mothers but it shows just how much impact not sleeping can have.
Even acute sleep deprivation has a marked effect on our mental health. In one study by Walker and colleagues, healthy young students were split into two groups. One group were sleep deprived, the other group slept normally. The next day, both groups were shown disturbing, upsetting and gory pictures. The researchers found that there were significant differences in the brain activity of the two groups, as measured by MRI scans. The sleep deprived group showed reactions similar to anxiety reactions. Their amygdala lit up like an alarm bell to the disturbing images, firing off stress hormones, whilst the normal group’s brain showed a more balanced reaction, with the parts of the brain that “panic and worry” being balanced by the part of the brain that “reasons and rationalises”. In the sleep deprived group, their ability to process and mediate the anxiety was damaged.

Re: Pros and Cons of Using CPAP

Posted: Wed Dec 30, 2015 8:19 am
by mariejeanne
WindCpap wrote:A little off topic, but it is interesting that the same can be said for smoking. I have only ever known one person to die from lung cancer, and that was at an old age. I know a lot of people who's live's have been made hell from COPD.
I smoked when I was younger. Never got COPD (thank God) but when I finally quit realized how sick I had been making myself. Ugh.

Re: Pros and Cons of Using CPAP

Posted: Wed Dec 30, 2015 8:50 am
by thecpapguy!
For me, the deciding factor was my fatigue. By not using CPAP therapy you increase your chances of stroke, heart disease and a long list of other diagnosis that apnea can influence greatly. I will tell you entirely that I am 29 years old and wearing a CPAP machine that is most likely influenced, because of my weight. However, my family history has a high risk of heart disease and diabetes. I just recently had children with my wife and I want to see them graduate school and hold my grandchildren someday. I weighed what I wanted out of life versus what I could do to make it happen and a sleep study and CPAP therapy were number one in that effort. Not to mention I needed more energy to work harder for my family.
I am happy to say that since initiating the therapy my energy level is back to where it should be for a man in my prime and hopefuly I am avoiding problems I may encounter in life if not annihalting them entirely.

Here is my advice - find a good provider and research as you are with the online forums. It is hard to find a sleep specialist or pulmonologist that cares and undestands CPAP therapy. It is also hard to find a DME provider that does the same. I work within this industry and it is a stain upon what I do although we work to remedy this issue it is a substantial problem. So be careful and be patient. I hope this helps!

Re: Pros and Cons of Using CPAP

Posted: Wed Dec 30, 2015 9:44 am
by GettingBetter
northpine wrote:Hello everyone. I am new to this Group and am seeking advice. Recently I was diagnosed with moderate to severe OSA and have been advised to purchase a CPAP machine.
I would like to explore the pros and cons through what I read here. I have always researched any drug prescribed and feel it prudent to do so with equipment like this.
Any advice both positive and negative will be very much appreciated.
Hi NorthPine, I'm new as well - diagnosed in November 2015 with severe Mixed, Complex Apnea (both Obstructive and Central) My sleep study AHI was 134.8. This morning, 40+ days in to therapy, my AHI was 2.39. For some that wouldn't be so hot, for me it is like a miracle.

The Biggest CON I see with CPAP is the attitude of the User and Failure to Incorporate the CPAP into an Overall Therapy Plan.

The CPAP or ASV or BiPap or whatever setup/brand isn't as important as how it fits into YOUR therapy plan. I wish I could say I had a good therapy plan when I started, but I didn't, don't think many of us do - but the folks that seem to prevail and thrive have incorporated the CPAP into a plan that addresses therapy as a whole - nutrition, good sleep hygiene, exercise, medication interactions and impact on apnea events, treatment of other medical issues and so forth.

The folks that seem to fall off the wagon have a one an' done attitude that the CPAP will just fix it and it should be easy. After fighting apnea for so long before diagnosis, it isn't very hard to see how a person might embrace that idea. After the first night on CPAP, I cut the AHI in half from the sleep study, but I still felt like like bleh. I have to say I was not a CPAP fan at that point, but I knew there had to be more I needed to do.

Chicago Granny posted this list on another thread. I think it is a great start in developing a personal therapy plan, which would include your support group.
ChicagoGranny wrote:It's not all about CPAP. How do you do with this checklist?
- Practice good sleep hygiene (Google it and read several sources)
- Eat a good diet
- Have a regular, moderate exercise program
- Try to avoid daytime naps.
- Practice total abstinence of caffeine including sources like chocolate (sigh)
- Review all medicines, vitamins and supplements you are taking to make sure none are interfering with sleep
- Use the bedroom for sleeping (and sex) only, and make sure the bedroom and bed are comfortable.
- Optimize emotional stress in your life
- Use CPAP software to make sure your therapy is optimized
- If you still don't feel or sleep well, make sure you have regular medical checkups to confirm there are no other medical problems.

Re: Pros and Cons of Using CPAP

Posted: Wed Dec 30, 2015 11:59 am
by northpine
49er wrote:
Julie wrote:So many patients who make up the negative statistics (those going off Cpap) have had no help in using Cpap properly and doctors being just way too ignorant about that are half the problem. It's not that they don't get the science behind apnea, but that they depend on untrained, but greedy DMEs and techs to deal with the mechanics of setting patients up on Cpap. They keep repeating old myths about weight and 'patients can't understand software' (so therefore should not take control of their therapy) instead of becoming informed. A whole generation (if not more) of patients are losing out because of ignorance, laziness and greed!
When I spoke to an ENT about my surgical options (no comments please), he said it was his experience that 50% of patients diagnosed with sleep apnea fail at pap therapy. Wanted to press him on that but there were just too many issues to cover.

It would be great if someone found a way to do a study to see how effective forums like this one and the apnea board were regarding helping folks who were struggling greatly with pap therapy. Have no idea how this could be done but I sure would like to see someone try.

49er
Just being able to speak to others is a helpful first step but yes it would be most useful to be able to measure the effectiveness of advice from professionals in the field as well as other folks struggling with pap therapy.