Advance techniques

[Sparticus]

This poll is for people to vote on an issue of advance techniques and setting adjustments. For those who beleive that this should be in its own section with warnings then vote yes. If you beleive that giving out advance advise on adjusting your machine without your doctors concent is ok and shouldnt have its own section vote no!

[Fredxx]

So, as "advanced techniques" tend not to be the way a topic is raised, but is usually advice which crops up some way into a discussion, how would you propose to manage it? As soon as an "advanced technique" is mentioned, the thread has to be moved? who decides?

I am not against a section for advanced techniques, I just haven't seen many threads which would have started life in there

[Richard]

I cannot see the point of having a poll where the overwhelming response is most likely to be complete apathy!


Richard

[Sparticus]

We will see, I beleive we should give people a chance to air their opinions on the matter but at the end of the day I cant change anything.

[Tigers Fan]

What are these techniques - advance or advanced - that we are to vote about?

A PAP machine has pretty basic controls, all done by pressing a very few buttons. A games console is far more complex - and easily mastered by most any school child. A computer has far more buttons to press but most everyone can master one.

Advanced from which standpoint? 'Tediously simple' doesn't make it into an advanced anything section from where I stand. Perhaps from a tediously simple standpoint PAPing appears complex and pressing a button other than the 'on' button is an advanced technique?

Not telling newbies what they cannot possibly understand is a tad rich for my taste and more than a little patronising. Who is to judge when a newbie is ready to receive the 'advanced word'? How will one go about preventing newbies from accessing all the information they want on the internet?

More importantly, why on earth should one try to limit the flow of information?

TF

[Sparticus]

Give me strength!

Wheres the brick wall so I can bang my head

A PAP machine has pretty basic controls! - so do you call the hidden menu's basic?

A computer has far more buttons to press but most everyone can master one - A lot of people would stone you for a comment like that?


Advanced from which standpoint? - from the point that other than the "Norm" mask leaks and sore skin, bad tummys etc. Reading charts (Which you are not qualified to do) would be classed as a advance procedure as its normally the techs who deal with this side so we dont have too.

Not telling newbies what they cannot possibly understand is a tad rich for my taste and more than a little patronising - I NEVER said dont tell them you arragant shit! I am talking about moving the topics to their own area, or would you prefer one big area called TF's Do you have a god complex? We could have so much more on here with different sections and groups. I got so fed up waiting I started my own group on facebook where most of the peeps on here are now members.


More importantly, why on earth should one try to limit the flow of information? - who's doing that? did anyone mention dont post? Its simple, all you have to do is open a new area (I can even do that as I have ran many of my own forums) and post away I'm sure most of us on here will gladly read along with who ever wants to post as I beleive you cant have to much information when it comes to an illness.

The question is: should we have a new area for advance topics to do with reading charts and tampering with machines hidden menu's

[Tigers Fan]

My, my - are we ranting again? Such judgements!!

The Clinicians' Menus that I have seen are very basic - which is all they need to be to control the settings of a basic function machine.

Ever watched a child on a computer? Child's play - same as PAP buttons.

How about????

Let's leave the forum as it has functioned for ages except introduce a thread for those who don't or can't understand their therapy and those who slavishly accept the edicts of their consultants and nurses.

Let the thinkers breathe!!!

TF

[jackieb]

I am wondering if you two would stop your arguing and maybe offer some constructive information I am 6 months into my new found sleep aponea and still coming to terms with a lot of small problems leaks,masks,sores, what I want to hear from you all at this time is how to manage to overcome all this and does it get any easier I am still some nights facing demons just thinking about putting on a mask. I would like to hear if this has changed relationships. Maybe sometime in the future I would like to read about changing pressure and yes I agree maybe on a separate link.
As far as I can see this is the only informative forum in the UK but have you ever wondered why it is the same people talking on it maybe you are just frightening off others.

[symmit]

Tweaking is fine, if you're comfortable doing it and are doing it knowing that your own health is at risk if you set it too low, and your sanity if you set it too high.

My machine has loads of settings, three different basic modes, three different flex settings, three APAP profiles, lots of stuff. Given a simple case like mine (snoring, apnea, overweight etc) I'm comfortable with interpreting my own SpO2 graphs and machine data and tweaking to get the numbers looking as good as possible. I wouldn't attempt to diagnose anyone else, but if someone wants to tweak settings I'm happy to help them find their own conclusions.

Reading the number of posts where people are just given CPAP at 10 or APAP wide open then left to it, it's no wonder people want to tweak our settings, let's just be careful not to incur any liabilities and to keep it friendly, civil and safe.

[Berneta]

The everyday problems

Hi Jackieb, Most of us have had the problems with sores, dry mouth and throat, rashes, lines on the face in the morning, etc. A lot of that can be solved with lotions, soft cloth patches, and straps that are a little looser. Leaks --I am afraid we will always have some. It takes a long time to find out what works for you--and you can get tips on many of the threads here. We are all different-- so what works for one, may not work for another. The same thing applies to relationships. Strong ones will survive the wearing of the mask and Cpap Problems. If you are having trouble with your partner then I suggest that you don't make a big deal out of the mask. Make your preparations private if possible --for instance don't leave the hose hanging in the bathroom like a pair of nylon stockings--its not the same thing. Don't walk around with thick lotion plastered to your face. It just takes some common sense as to what your partner might find desireable or not. You can make changes that make dealing with the CPAP experience easier. Don't put your mask on till you are alone, or ready to go to sleep in a dark room. The Mask doesn't have to be right out there "in your face" all the time. Save it for "After" the romance. I don't know if any relationships have broken up because of the OSA equipment--but my guess is some have. I think for those who have broken up, it may be because OSA became your life and got put before everything and everyone else. Its a big part of your life--but not the most important thing in your life. A partner who is having problems dealing with it should receive some consideration. Oh I know that some will say thet they should be more supportive. But sometimes any major health change is difficult to deal with. If that is a problem then keep it out of sight as much as possible-- and don't make it the topic of every conversation. I agree with you--the tech stuff needs a place of its own. As for who decides how technical a post is? That is a decision that should be made by the moderators, and not by the person posting. We need the tech side of it also--just in a place of its own. xx Berneta

[Berneta]

Child's Play?

Sorry TF--I don't agree with you on some tech stuff. I have friends whose " children" have so messed up their computer that it had to go to be fixed. The buttons on the CPAP are not for those who don't know what they are doing. There are life saving results that are controled by the CPAP buttons. You of course and many others have it all figured out. But that is not true of the vast majority of people on CPAP. Your technical advice is essential for some people who have no clinic, or one that isn't informative. To them your advice is much needed. But that doesn't apply to everyone. I am not censoring any tech's thinking--where would we be without those who have the ability to know and understand and teach? But I think all that needs to be put in its proper place-- and the decision about what goes where-- should be made by the Moderators who control this forum. This forum is here to help all people--not just those who need tech advice. Tech advise in the hands of those who are not knowledgeable enough to handle it--can be a very dangerous thing. We don't live in the past where all things were just fine all the time--we live in a changing world, All things OSA are changing-- and this forum should advance with the changes, and provide as much support as we can without doing anyone harm. xx Berneta

[Tigers Fan]

And there is the real question!

How do you have a 'proper place' for tech stuff/advaned techniques?

I can recall three or four people asking the question in this debate.

A newbie will probably not ask a tech stuff question but the reply may well need to be technical. 'My mask leaks' may soon become advanced techniques if the clinic is not supportive and the next appointment a year away. Any discussion may take a technical turn at any time.

Why can't you trust adults to make up their own minds what is and what is not appropriate for them, their level of knowledge and level of confidence and whatever else. They do not need a censor telling them what is good for them and what 'too advanced'.

An overall forum disclaimer about taking advice at your own discretion and risk does everything that may be needed. We already have 'ignore lists' as well as the ability not to read what we don't want to know.

Keep the internet free!

TF

ps Some kids crash computers. Some adults crash cars. So should we then ban kids from computers and adults from driving?

[Berneta]

Crash

In this country kids and adults who crash cars get their license taken away. Those who crash computers have to pay to get them fixed. If you crash someone's life by giving them advice that they cannot understand--what happens to you if they crash their life. This is not about cars or computers or censorship--its about lives. What if someone who believes they don't need the CPAP (Common feelings at first in a lot of us) --turns it so low that it does little good-- and they die in their sleep? I am not ignorant enough to believe that everyone knows everything about their own healthcare--that is exactly why we have DRs and Nurses and Clinics and even CPAPS. And people like you are exactly why we have moderators. Your advice could cost someone their life. At least give them a chance to learn a little about CPAPs before you give them advice on the technical stuff. If they ignore all the regular threads and go to yours first--then at least you will not be guilty of being responsible for a death and neiher will Intus, Why can't you see that such technical advice belongs in a place of its own? If something comes up in a conversation, you can always refer someone to the tech thread. No one is disputing your knowledge--we just want it put in the right place. XX Berneta

[Fredxx]

The problem with that argument is that the choice is between turning it too low, so not having effective treatment, or the pressure being too high and the person giving up, so having no treatment. Which is more dangerous?

Yes, we have doctors, nurses and sleep clinics, but they aren't there at 4am when the pressure on the APAP is running at 20. In my case I have one chance a month to see them if there is an appointment available, so I could go for weeks with ineffective treatment.

In this case, it is a pretty standard condition that an APAP has been supplied "wide open", and as anyone who has a higher pressure knows, anything over 15 and leak problems and discomfort grow substantially, resulting in people, particularly those with little experience, having significant problems with their therapy.

As I put it earlier, the first step is to contact the clinic, but if the clinic can't or won't discuss / deal with the problem, then self-help is a reasonable option, but if you do go down that route, look into it properly before trying it.

Unfortunately, as has been pointed out, resorting to a slanging match and personal abuse means that this person who was after help and support in their treatment will probably now give up coming here and so not gain by our support and knowledge.

[Tigers Fan]

Dear oh! dear

Berneta

People live for years with un-diagnosed OSA - they live without any pressure above atmospheric. They live with a pressure below what CPAP therapy would indicate. They live. We all did!

The power goes off, we don't have pressure from our CPAP, we don't have battery back-up (by choice - most everyone has read the battery threads), we don't have any pressure. We live!

People take their masks off and throw them across the room. They have zero pressure. They live!

All the advice here is about achieving a low AHI; mine is always about creepingly slow pressure alterations whilst monitoring AHI. The people I advise are not daft, they make up their own minds about what I say. They always have their clinics to refer to, anyway - or they come here for advice because they lack that support but need help. If one of us gives daft advice others will soon post a correction.

How to kill someone with a CPAP? Without considerable violence, I can't think of a way.

I sat with a retired paediatrician on my flight this afternoon. It was quickly obvious she has OSA and we were soon comparing notes. Even as a doctor, she had received the same reponses from her clinic as a lot of us have had - you don't need to know because we know best. Consequently, she was profoundly ignorant about her own therapy and thus very interested in things I had to say - what you call tech stuff and others, advanced techniques, as well as the Hose Lift and Huggies end of things, where to get the software for her S9, where to get an oximeter, de dah. Now, this medical professional listened very attentively to my suggestions and advice and never once mentioned my lack of medical qualifications. Will she do anything with my advice and suggestions? All I know is she was appreciative as well as respectful of my knowledge and that I felt good in helping her. I told her of this discussion and she laughed. She wants to monitor her own therapy because, she asserted, medical staff really don't have the time to mess about with such simple things that patients are perfectly capable of doing for themselves. Only one opinion - but a medically trained one. To add to my own, of course!

TF


Sorry about the red face - I don't know how it got there nor how to get rid of it. I'm on my netbook.