Who gave up?

[Sluggish]

It makes sense that folks who gave up on Cpap wouldn't still be hanging around this forum. But I was just curious about the number of people who are not successful on CPAP and what happens with them?? Are they all just dead or so miserable that they wish they were??

Are there are ANY (even one) success stories of a person with apnea being healthy without a CPAP machine?

I know there are surgeries that have a terrible success rate. I've also heard about the implants that don't really work. I'm years into my "treatment" with no success. It's hard to remain positive about CPAP or just positive in general anymore. I'm wondering if I should just accept that I will have a short(er) and difficult life riddled with health issues and try to make the best of it before I go. I'm guessing that's easier said than done.

[milboltnut]

the CPAP is a starting point to diagnose. You might need a different PAP machine to suite your needs.

A pulmonary Dr told me it takes time for the machine to narrow down sleep patterns of an individual.

[DreamDiver]

It makes sense that folks who gave up on Cpap wouldn't still be hanging around this forum. But I was just curious about the number of people who are not successful on CPAP and what happens with them?? Are they all just dead or so miserable that they wish they were??

Are there are ANY (even one) success stories of a person with apnea being healthy without a CPAP machine?

I know there are surgeries that have a terrible success rate. I've also heard about the implants that don't really work. I'm years into my "treatment" with no success. It's hard to remain positive about CPAP or just positive in general anymore. I'm wondering if I should just accept that I will have a short(er) and difficult life riddled with health issues and try to make the best of it before I go. I'm guessing that's easier said than done.

There are several ways to treat a patient. We're on line C. We can only treat. We can't cure this mostly congenital condition.
This is the state of modern medicine. We have no cures for most things. Most of what we do is aid.
As people, we tend to think if we pretend it doesn't exist, well, it doesn't. Unfortunately, this is a choice we cannot force on others. We can only make choices for ourselves. Those who make choices not to address their health will unfortunately leave our company earlier than the rest of us.

1. Preventive care. An apple a day keeps the doctor away.
   • Exercise, education, good diet, etc.
2. Cure the patient. Fix what's broken and send them on their way.
   • Broken leg in a cast -> wait to heal -> remove cast -> done.
   • Syphilis -> Antibiotics -> Give the patient advice on how to prevent.
3. Aid the patient. Give them a wheelchair/crutch
   • Remove thyroid gland due to thyroid cancer. Put on thyroid meds for the rest of their life
   • Prescription contact lenses or glasses, dentures, etc.
   • Diabetes meds, CPAP
4. Paliative Care. Remove as much pain and suffering as possible until the patient passes away.
   • Patient with stage four cancer only has two weeks to live. Rest and meds.

[Sluggish]

the CPAP is a starting point to diagnose. You might need a different PAP machine to suite your needs.

A pulmonary Dr told me it takes time for the machine to narrow down sleep patterns of an individual.

Thanks. But it's been years. My machine is auto adjusting. I've tried about 80% of the masks.

[joeljjk11]

To be honest I have had horrible luck with CPAP being able to alleviate my sleep apnea. I am close to going to a dental specialist to get some sort of a dental device and see how that works.

[milboltnut]

To be honest I have had horrible luck with CPAP being able to alleviate my sleep apnea. I am close to going to a dental specialist to get some sort of a dental device and see how that works.

try a chin strap?

[palerider]

A pulmonary Dr told me it takes time for the machine to narrow down sleep patterns of an individual.

Machines don't self adjust.
This just an example of how so many doctors don't understand these machines. (and no, 'auto' machines don't adjust, every time they're turned on it starts back and whatever it's set to.)

[milboltnut]

A pulmonary Dr told me it takes time for the machine to narrow down sleep patterns of an individual.

Machines don't self adjust.
This just an example of how so many doctors don't understand these machines. (and no, 'auto' machines don't adjust, every time they're turned on it starts back and whatever it's set to.)

If I start at 6 and it climbs to 9 for the night .. sounds like it self adjusting to me.

[palerider]

A pulmonary Dr told me it takes time for the machine to narrow down sleep patterns of an individual.

Machines don't self adjust.
This just an example of how so many doctors don't understand these machines. (and no, 'auto' machines don't adjust, every time they're turned on it starts back and whatever it's set to.)

If I start at 6 and it climbs to 9 for the night .. sounds like it self adjusting to me.

Can't help what it sounds like to you. Read the parenthetical comment.

To make it simpler, "adjustment" is what one does when one goes into the clinical menu and changes the minimum setting.

[DreamDiver]

If I start at 6 and it climbs to 9 for the night .. sounds like it self adjusting to me.

It's an autotitrating machine. It's not the same as a machine that learns and remembers what your particular settings should be, which is the statement implied by the doctor or the DME or the therapist.

An auto CPAP has a simple algorithm that says:

• Keep continuous pressure between these this min and max limit.
• Keep exhale relief at that limit.
• If there is obstruction, flow limitation, hypopnea, etc, raise the pressure if possible within the specified limit by x cm.
• If the obstruction, flow limitation resolve, back off the pressure by x cm.

It's automatic only in that respect. It only remembers preset limits and works from there.

If the preset min is set too low, it can never on its own figure out that it should change to a new higher setting. Every night remaining at the too-low min setting is an extra night with minutes of extra suffering as the CPAP user goes through a period where their pressure is too low. The same can happen for a pressure set too high with regards to aerophagia. In each case, it's a wake trigger that could have been avoided, if the machine were capable of recognizing the repetition of the incident. It can't. We have to make the changes for the machine to perform its function properly.

From the resulting graphs, current settings and knowing what the 95% pressure and median pressure are, along with indicators in the event flags, we can try manipulating the min and max settings and EPR settings to give optimum pressure for a particular individual.

The next generation of machines will likely rely on artificial intelligence to help determine what someone's settings would be optimum, remembering your settings and data regardless of the machine you're using. We're not there yet. Until then we continue to self titrate using the auto machines and OSCAR to help us determine our best path forward.

Chris

[milboltnut]

sounds like the people who gave me the machine set it up at those pressures... max 9ish?

my prescription is 5-20 cm

"auto" max is 20, I have the minimum at 6.5

[Janknitz]

Not everyone has success, that's true. Many people give up too soon, but some people try very hard (it sounds like that's what you are doing, Sluggish) and very long and still don't have success.

I participated in the American Sleep Apnea Association conference last fall. One of the things they highlighted was the importance of a team approach for cases where CPAP therapy wasn't fully successful. Stanford Hospital has a multidisciplinary team with (I think) 7 specialists who all examine the patient and then meet with the patient to try to resolve issues. I remember the following were on the team: pulmonary specialist, ENT, orthodontist, speech and language pathologist, psychiatrist. I think there were two more, but don't remember off the top of my head. You can view the video of that session here: https://youtu.be/cCPh4SWhQps

I also get the reality that this approach sounds great, but the truth is that many of us don't have either the financial/insurance resources to get treated in a program like this or the proximity to such a program.

It's not always as simple as using your CPAP. Sometimes there are other factors that must be identified and managed for CPAP to work, and some people are truly not able to use CPAP. But the important thing is not to give up on yourself. If you can't go into a multi-disciplinary program, assemble your own "team" and keep pushing for them to do their best for you. Fire the ones who don't actively engage in trying to help you find relief. Look far and wide.

Keep in mind that there can be many confounding factors. Some are very obvious but some seem really obscure. That doesn't mean you shouldn't make some educated exploration of options. Don't be reckless and try things that sound obviously dangerous (don't drink the Lysol!), but be open to trying something like an elimination diet or a particular exercise to see if it works. It may take a combination of things.

[DreamDiver]

...
If you can't go into a multi-disciplinary program, assemble your own "team" and keep pushing for them to do their best for you. Fire the ones who don't actively engage in trying to help you find relief. Look far and wide.

Keep in mind that there can be many confounding factors. Some are very obvious but some seem really obscure. That doesn't mean you shouldn't make some educated exploration of options. Don't be reckless and try things that sound obviously dangerous (don't drink the Lysol!), but be open to trying something like an elimination diet or a particular exercise to see if it works. It may take a combination of things.

Janknitz hit it on the nose!

Plus, if a doctor gives you a prescription of min 5, max 20, it means either you didn't get a titration night, or they're expecting you to get titrated with your DME therapist. It's a round-robin system that is full of inadequacies and inefficiency. It leaves the patient at the hands of someone else for their therapy, totally in the dark about why changes are being made. This is your life, right?

Here, we're learning we can take control of our own therapy. Your DME therapist can't change your prescription without getting permission from the sleep doc. That takes time. But you are not restricted. You can make changes as you please.

By posting OSCAR graphs here, we can help you determine for yourself what the right course of action should be for yourself -- not waiting for a nebulous reading change via 4G modem without your knowledge or understanding.

It's a lot to learn, but it's better to get restful sleep above ground rather than six feet under ground.

Chris

[chunkyfrog]

. . .
my prescription is 5-20 cm . . .

Ummmm, that is not a "prescription"--I call it LAZINESS.
Cpap, apap, or any other---none of these machines have AI.
(Artificial intelligence) Maybe some day--IF anybody can AFFORD it!

[milboltnut]

Chris...

It's a lot to learn, but it's better to get restful sleep above ground rather than six feet under ground.

the first sounds great, but the second is the best !

Thanks for all your input !