truckerdad57

Please let us know any other comments/thoughts about the new survey reports.

One of the general themes I have been pushing in comments and research suggestions in the potential for this program to provide data on occupational issues that relate to treatment of sleep apnea.

Yet, nowhere in the surveys is any data being collected in if a person completing a survey works in an occupation that has fitness for duty requirements where their treatment for sleep apnea is related to their keeping their job.

The other issue is that for the data collected to be more useful you need to be able to reach out and collect data from patients NOT compliant with treatment. Data on the reasons for non-compliance can be as powerful and useful as current data being collected.

With the current privacy set up for this project no truck driver not in compliance with CPAP therapy should provide data or complete a survey. Doing so has the real potential to land them in jail.

Informal efforts to get other truck drivers to participate have been met with hard resistance due to this issue.

The project needs to look at obtaining a certificate of confidentiality for patients employed in safety sensitive positions to be able to participate and complete surveys without the fear that their answer might be successfully subpoenaed at some time in the future.

I've used the allergen filters in the truck. But with all the dirt and dust in the truck they plugged up quick and didn't work too well.

For allergy season I've found nasal irrigation to help me a lot. It's kind of cleaning your body's natural filter - your nose.

Yes.. I have the travel version that the vendor gave me to try out in the semi.

It works well. I like that the travel version also disinfects the humidification chamber while doing the mask and hose. The home version doesn't.

+2 for apnea board... I like it too.

Just to clarify terms.....

A moderated board - like this one. All posts are reviewed by a moderator before they are visible to other users.

Off the wall or medically incorrect posts never are seen by other users.

apneaboard.com has moderators who work to keep the board civil and posts within the board's guidelines.

But, It is an un-moderated board. Moderators can and do take action such as deleting or removing posts as appropriate. But posts are visible to other users as soon as posted. You don't know if a moderator has seen or reviewed a post like you do here.

I like both kinds of forums. and Daria... you're an experienced and wise forum user. Not everyone is.

I worry about some users taking forum posts as medical advise or ignoring medical advise based on bad postings by some forum user (not you). Not everyone on line is a big girl....

Daria,

Just to expand the discussion.... Do you think it is appropriate (or ethical) for you in participating in a sleep apnea related forum to teach or assist another user (who you only know via the forum) on how to access the clinical menu setting to change their pressure?

One question is... is self-titration ok.... The deeper question might be... Is facilitating self-titration in others ok?

Apneaboard.com. is an active online community that might be helpful.

Just remember this is a moderated forum. All posts get checked by a wonderful caring sleep professional before they are publicly available.

Other forums are more "wild west". Often posters walk close to the line of practicing medicine without a license.

So beware. .....

Self-titration of CPAP pressures... or learning how to access the clinical settings menu of your own CPAP to adjust the pressure (or APAP range) or other settings normally only accessed by a medical professional is a controversial topic among moderators and forum administrators of other online sleep apnea support forums.

One school of thought is that only medical professionals should access the clinical settings menu and posts or information giving directions on how to access clinical settings should be moderated and not made available for public view. Forums and moderators in this school will moderate and remove posts giving direction on how to access clinical menus. The feeling that due to the potential adverse consequences only medical professionals should adjust pap pressures.

Another school of thought is that empowering cpap users to be able to take control of their own treatment is an important part of long term effectiveness of CPAP treatment. Forums and moderators with this school of thought will post exact how to guides and you tube videos of how to access clinical menus. This school of thought feels experienced pap users who know about potential adverse consequences can and should be able to make their own decisions on treatment. As the actual pap user they will know earlier and be able to make corrections quicker to avoid adverse consequences than waiting for and paying for an office visit to a medical professional for a simple settings change they can make themselves.

WHAT IS YOUR OPINION ON CPAP SELF TITRATION?

DO YOU THINK THIS MIGHT BE A GOOD SURVEY QUESTION AS AN OUTCOMES BASED RESEARCH INITIATIVE?

Personally I self-titrated early in my CPAP journey. I was using CPAP in sleeper berth trucks running them on batteries. Often I had issues with a drop in actual pressure due to low input voltages from batteries. Back then pressure settings were a set screw on the side of the CPAP. I would turn it up a little in the truck and turn it back down at home.

I've learned a lot more since then about the issues and problems messing with my own pressure can cause and now am in the moderate self-titration posts school of thought.

Post on this thread your experiences with self-titration and your thoughts on how forums should handle the question. Maybe we can generate a useful discussion here and attract the attention of the researchers.

How about we keep this thread to discussing self-titration of CPAP or APAP only. If you're using a Bi-PAP ASV or other form of assistive ventilator messing with settings opens a whole different can of worms and might warrant a different discussion as the potential adverse consequences are much greater.

Thanks.... Bob (aka truckerdad57)

HM.... just a suggestion....

Have you looked at cloth mask liners? Remzzz's is one brand of disposable liners that I've tried and they work pretty well. Pad-a-Cheek is another vendor that makes thicker washable mask liners and strap pads.

I've also heard of some folks just taking an old sheet and making their own liners.

There are other sleep apnea support forums where you can post a question like yours and get comments and suggestions from a range of other CPAP users. Apneaboard.com is one I find active and supportive.

Good luck... hope this helps.

No... there have been several other potential research projects more specific to sleep apnea suggested in the forums elsewhere.

Some call the frustration you're dealing with part of non medical barriers to treatment.

I can feel your pain.

Online vendors will be very easy to deal with. But they're rarely in network.

Sleep Review just had an article on a new retail outlet for cpap and supplies. ..neat to be able to see and compare. Just visited a retail outlet in Milwaukee. Probably not in network.

For folks coming to the forums that have given up on cpap. ... how much of a factor was the frustration dealing with supplies a factor in your giving up on cpap?