Biguglygremlin

The fact that you are in this forum is a testament to that fact sleeptech and very much appreciated.

Communication seems to be a key issue in the whole equation and not just because of native language or tech-speak.

If my experiences are not totally unique then it seems to me that consultations might not be the most effective way to help sleep deprived patients.

The only way I can make sense of information is over a period of time with multiple views to understand what is being said and to consider the implications.

The only way I can explain what I want or need is essentially in writing because it is too easy to become confused or distracted on the spur of the moment.

I don't believe that I am stupid but I am forgetful and easily confused.

So how do you accommodate confused patients?

Can the patient be given general information in writing?

Can they be given forms in advance to fill out at their leisure?

Can the clinical responses and options be laid out clearly and simply in writing?

Is there a general CPAP Therapy Concerns diagnostic form online that patients could fill out at their convenience whenever a problem presents itself and take or send to the nearest clinic to facilitate more effective communications and better outcomes?

I suppose this would only work properly in a world where compliance was not such a pervasive issue.

Thank you for your response BrainsNeedSleep, there are a lot of good points in there.

It's hard to get a fix on the comprehension of Apnea sufferers because tired is not the same thing as dumb although it may well equate to the same outcomes in many circumstances.

I struggle to know what day it is most of the time and SleepyHead is nice and colourful and has interesting charts but I'll just walk away and have a closer look some other day because I'm definitely not the sharpest tool on the shelf but I do watch and think, when I'm able, and even remember some of the stuff I read, so eventually I get enough of a general impression to enable me to make minor adjustments or decide what I would like to try next in the endless process of hoping to make improvements faster than things are falling apart.

With very severe Apnea I cannot sleep without the CPAP machine and I am often a considerable distance from any trained help, so I need to be able to fix urgent problems myself.

Yes there are risks but in my view they are minor compared to the risks involved in being totally dependent on outside help.

It's true that .5 would make a difference but I know that in general I could change mine from the current setting of 12 up to 14 or back to 10 and still be relatively comfortable.

If I set my pressure above 15 it might invoke a few central events and below 9 there would be more obstructive events but even at those extremes I would still be better off than not having the machine.

The other issue for Apnea sufferers is the apparent failure in communication between patients and professionals that so often seems to cause misunderstandings, delays and unsatisfactory outcomes.

I accept that this is an industry in transition and these views may well be unwarranted in the future.

They are hardly European but the Fisher and Paykel range is worth checking out.

Devilbiss also have a couple of masks that look interesting.

Devilbiss Introduces Two New CPAP Masks

This site has a bunch too although they may not be all CPAP masks.

Löwenstein Medical

What are the reasons for information restrictions and why do we seek to bypass them?

I don't have anyone monitoring my machine or compliance in any form so much of the following is based on impressions gleaned from the experience of others.

Many of the CPAP machines go online daily to send data to the clinic that manages them.

Most machines also have the capacity to save the data to an onboard SD card which can be accessed with the right software.

The clinics don't usually go out of their way to provide data to the patient although I believe there is a simplified summary available online.

Neither do the clinics take the time to provide training or support for patients to understand what any of it means.

Once the patient has access to their data most of it is comprehensible over time with a bit of experience and logic.

So why do the clinics try to restrict access to the data?

The sleep clinics would probably tell you they are reluctant to give information to the patient because they need to set up and manage the therapy for the patient and they are responsible to exercise authority or control on behalf of some or all of the following,

The patients Doctor

The patients Sleep specialist

Their own employers

The marketing companies they represent

Their own legal and medical obligations

Their own insurance company

National medical authorities.

Government authorities

The patients Licensing authorities

The patients employers

The patients insurance company

It's not an envious position to be in, answerable to just about everybody.

None of those on the above list would be likely to encourage patients to be involved in their own therapy so it follows that they wouldn't support distributing information or data that might facilitate that.

This attitude is perfectly understandable and would make sense if the sleep industry were more effective at the essential aspects of diagnosis and therapy but it seems like they have a long way to go and many patients are slipping through the cracks at the moment.

Many CPAP users view the control measures and lack of information as business policies by the sleep industry applied primarily to protect and increase their cash flow.

This would probably be ignored or at least tolerated if the patients felt that they could actually get the kind of services and help that they so desperately need.

I also get the impression that most patients believe their doctors have very little understanding of CPAP details or issues and many Apnea sufferers have serious doubts about the competence of the staff at their sleep clinics.

These factors can provide compelling reasons for CPAP users to want to learn about their equipment and outcomes so that they will be better able to understand and manage their own therapy.

What are the dangers of going down this path?

Should the clinics provide more information and data to CPAP users?

What alternatives are there?

Hi ichoj4

I posted a response regarding data access as a new topic.

I did a lot of exploring in the mountains when I was a kid so I know of quite a few caves including some incredible sandstone caves that have been wind carved with all that beautiful honeycomb structure but most of the other caves are dark and cold and damp and surrounded by dense bush.

The other aspects of that scenario would not apply where I grew up because most of our animals are nocturnal and some of them (like the Tasmanian Devil) are quite noisy and almost nothing is edible in the bush here. (no berries)

I have always loved caves and fires. Just a caveman at heart I guess.

The fanciful cave above was inspired by a book written by Jean M Auel

The Clan Of The Cave Bear

Not a good book for CPAP users in the early hours.

If you want to get back to sleep stick to Pride and Prejudice.

I had never really considered sighing as a symptom until recently and neither had I related it directly to yawning but there are some obvious connections.

In very vague generalities it seems that when we are under stress (which is pretty much all the time in one way or another) some of us respond by suppressing our breathing and the effect is an altered oxygen carbon dioxide balance which sets off a distress signal that can be easily misread but it's this signal that often causes sighing or yawning.

I used to think of yawning and sighing as involuntary actions but it seems that on some level they actually are conscious choices which is why they are so susceptible to the power of suggestion or provocation.

Apparently the alarm can be switched off by resetting the oxygen/carbon dioxide levels and the fastest way to do that is to re-breathe into a paper bag for a few mins.

This article is worth reading for it's coverage of a number of breathing problems.

The Sigh and Meaning of Sighing - Breath Dysregulation: Low CO2

I thought this was a succinct summary.

"Hence, in most cases, frequent or excessive sighing means being under stress."

Dare I question the validity of the overall concept?

Did we really hijack this thread to talk about a webinar involving patients who are generally overweight and sleep deprived?

The reason this forum works so well for me is that I don't have to wash my hair in a futile attempt to get rid of the strap marks and I don't have to find non-existent clothes that make me look good and I don't need to have to rally those barely functional neurons to try t find a quick meaningful response on the spur of the moment.

In this forum I have time to think it through and adapt and adjust my comments and even then I can go back and edit multiple times until it says what I want it to say.

It seems to me that a webinar for CPAP users would convey intensity and emotion which might be entertaining but it would have questionable scientific or medical value compared to well thought out written responses.

Hi LockNeesieMonster

I like the name. :)

I read something about sighing recently.

If I can round up a few neurons and interrogate them I'll get back to you.

Ok I had to resort to drastic measures but eventually one neuron confessed.

SIGHING DYSPNEA : A CLINICAL SYNDROME”+

I'm not saying it's related to your symptoms but it's an interesting read.