truckerdad57

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?

How often do you clean your cpap and how much upper airway infections you deal with might be an interesting outcomes research project.

I use cpap in a sleeper berth equipped semi truck about 300 nights a year. Due to dust and dirt I have to be pretty anal about cleaning or I get bronchitis. When first started cpap I didn't keep it as clean and had more issues.

I now even use a soclean mask hose sterilization unit. No bronchitis problems for a couple of years now.

Again. ..mask hose and humidifier cleaning regimes correlation to complications rates.....

Another factor would be exactly what type of home sleep study was done. There is a big difference between hst and full in lab attended studies. Psg

Only your own doctors who know your whole history and have seen you should make treatment suggestions.

Given witnessed apnea and the low overnight oximetry results I would be asking if a full in lab psg might be appropriate even with the marginal ahi 7 hst.

Then again I drive truck for a living. This advice might be worth exactly what you paid for it.

The new Asaa forums mentioned above are on Facebook.

If you are uncomfortable posting about your medical conditions with your real Facebook identity .. anyone who follows you on facebook would see your post.. apneaboard.com uses a screen name system like this site.

It has a good reputation for technical issues.

Please let us know here how things go. It would be interesting to hear what you think about help from online forums versus other sources.

I can see the value of these forums as a place to discuss the research issues around sleep apnea and the uses of MyApnea.org.

BUT... why reinvent the wheel regarding general questions and issues on sleep apnea treatment that were being effectively handled in a patient to patient forum in the old ASAA support forums.

In posting a response to questions about CPAP camping and battery use I am frustrated as the old ASAA forums had old threads and stickies covering normal questions like those posted. There was an active community of users who would have provided good information much quicker than it took here.

Personally I have gone into the details on batteries for CPAP use, inverters, trade offs of various battery types, where to find battery draw data for models based on pressure, dealing with lack of humidification with sinus irrigation, and other topics many times on the old ASAA forums.

Instead of having to retype answers being able to link to threads where the answers had already been discussed in detail by multiple forum participants makes much more sense than starting over here.

Also, from having been active for over a decade the old ASAA forums had a high ranking in search engine results for sleep apnea related search terms. Using the forums to generate interest in and traffic to myapnea.org would be possible if the server issues with ASAA were given a priority. I can understand the need to address myapnea.org start up issues. But....

Just my personal opinion.