Can patients safely alter the settings to come up with good results

[Pugsy]

Some heated discussion going on about patients altering settings. This is a better place to continue the discussion instead of hijacking newbie helping threads with the arguments.

I know there have been some studies done about it but this is the only one I have a link to.
http://www.tnlc.com/Lara/laura/osa/CanP ... wnCPAP.pdf
so I know it is quite old and there are probably newer studies...anyone have something newer?

And another presentation from a well known sleep doctor herself about people self treating for whatever reason.
http://www.tnlc.com/Lara/laura/osa/Barb ... t_0830.pdf

I haven't kept up with more current stuff because there has been no need and I simply haven't had the time so if any of you guys have something more current...please share.

[Pugsy]

If you are someone who feel that patients might harm themselves making alterations to any settings on their own...can you explain why or how they can actually hurt themselves and provide proper documentation as to the damage that could maybe be done?

[jimbud]

I have something current. Me.
When I started therapy I had severe APNEA.
I bought my own machine and used this forum to line out my therapy.
I got the clinicians manual and changed my own settings using the knowledge I received here.
I am now essentially at <1 AHI every night.
My pressure line is almost flat.

Thanks to the good people on here and my taking charge of my therapy I am a happy camper.

We are our own best advocates.

We do (or should) care about ourselves more than anyone else on this planet.

JPB

[Pugsy]

I changed my minimum pressure on my own...long story there but I did have a formal in lab sleep titration study that was less than ideal and came away with a prescribed setting of 8 cm fixed. It couldn't deal with my REM worse events.

Long story short...after a bit of tweaking it was determined that I needed a minimum of 10 cm to give the machine ample head start to deal with the REM stuff where it often went to 18 cm.

I did go back to my sleep doctor about 3 months after starting therapy for that mandatory follow up...and 2 months after I had ended up with 10 minimum and 20 maximum and I explained why I did what I did....and all my doctor said was "good job, well done"....you see you later if you run across a problem you can't handle...sounds like you know what you are doing"....
I haven't seen him since...over 10 years now. Haven't needed to.

I did lose a bit of weight and changed brands of machines....so the combination has let me reduce the minimum a bit.
Always nice to be able to use a bit lower pressure but the default factory settings still aren't adequate. The machine still has to deal with the REM stuff.

[LSAT]

Since almost all of us will be using CPAP for the rest of our lives, it makes sense to understand the function of our machines. You can't always run to the doctor when you may need an adjustment...it often takes weeks or months to get an appointment and it costs hundreds of $$$$. Many doctors don't really understand the CPAP machine anyway. Take control of your therapy.

[Dog Slobber]

I will add my anecdotal evidence, as a result of taking the advice from Pugsy, palerider and a few others from this board.

increasing_minimum.png

Originally my pressure was 8-13, at the time I was also prone to aerophagia so I capped the maximum.

As I started increasing my minimum my AHI clearly started dropping, and there was less of a need for my machine to use higher pressure. The graph also clearly shows my machine routinely being capped, and as the minimum was increased it was not going as high.

dropping_ahi.png

The decrease in AHI is also clearly seen on the OSCAR statistics page. When I was at 8-14 my AHI was approximately 2.5, as I increased my minimum pressure my AHI steadily decreased.

I now enjoy an AHI of 0.16, almost 20 times less.

I attribute it to:

• The machines always try to revert to the minimum pressure
• It takes less pressure to maintain an open airway, than to actually open a collapsed airway.
• When an airway is collapsing, it takes less time to get to an appropriate pressure when the minimum is set higher

[ragtopcircus]

Many doctors don't really understand the CPAP machine anyway.

That is a crucial point. Medicine and embedded control (ie, how the machine actually works) are PROFOUNDLY different fields of expertise. Complicating that, the engineering specs in the back of the manuals (the part nobody reads) sometimes contradicts the marketing-driven info provided to doctors and techs. I am no doctor, but most doctors are not engineers.

Also, to paraphase Larry, the process needed to really home in on the most effective settings is simply incompatible with the insurance-driven process (at least in the US).

Another issue. I barely slept at all during my home sleep study. That seems to be a common experience. I don't sleep well in hotel rooms either. Combine the sleep-monitoring equipment with sleeping in a strange room on the wrong mattress, and a sleep study just doesn't represent reality for many of us. Yes, it may be an important step in diagnosis, but the data quality is simply not representative for some people.

[nanwilson]

ME TOO! I have been at this for 10 years with great success thanks to all the folks that put in their 2 cents to get me started and helped along the way..
I was given a F&P brick which I paid for and a mask with a setting of 11 for $1500. Within 6 months with the help of Pugsy, I bought a slightly used PR M series auto for $60, and have never looked back. When that died I bought a PR60 series and am now in need of a new unit. My 60 series is still working but getting "miled" out, so am kinda looking for a new unit. I have slept every night with my machine along with many changes of masks...… every time a new one comes out, I have to try it out . My ahi has never faltered. so must be doing something right...…...……….THANKS CREW YOU ARE THE BEST!!!!!!

Cheers and happy sleeping
Nan

[Janknitz]

I spoke to a doctor at the recent American Sleep Apnea Association meeting. She said that there ARE concerns with certain conditions, most notably Congestive Heart Failure (CHF). Aggressively high pressures can cause problems with overloading the heart. This is usually in someone with severe lower extremity edema and not well controlled on medications. If you have CHF or a serious heart/lung condition you might want to consult with your physician about pressure changes. But for most of us, there is no danger.

[palerider]

If you are someone who feel that patients might harm themselves making alterations to any settings on their own...can you explain why or how they can actually hurt themselves and provide proper documentation as to the damage that could maybe be done?

I'd prefer they just GTFO and go drool over themselves elsewhere.

Given that diabetic patients self monitor and self treat *daily* with something far deadlier than CPAP (which isn't dangerous at all), there's no rational basis for the allegation that people shouldn't self treat with CPAP.

[babydinosnoreless]

I did a sleep study where I basically didn't sleep much was given a fixed pressure of 18-23 or 19-24.

I got my machine a year later at a much lower elevation. They stuck me with the higher fixed pressure for over a week even with constant daily phone calls. Finally I just flat quit using it and told them I wouldn't use it again till they changed the pressure. They finally changed it to a wide open 8-24. What bozos. I came here and with much help and hand holding from Pugsy and PR I learned how to do it myself. And now I am 100% compliant and rarely have a night that is over 1 ahi.

If I had to trust the medical establishment I would be dead.
Now they are effing with my thyroid medicine. I just dumped that doctor and have an appointment with my primary care to take over thyroid care. So sick of the god complex some doctors have and I will no longer put up with it. Answer my questions or I will find someone new.

[Pugsy]

If you are someone who feel that patients might harm themselves making alterations to any settings on their own...can you explain why or how they can actually hurt themselves and provide proper documentation as to the damage that could maybe be done?

I'd prefer they just GTFO and go drool over themselves elsewhere.

I know that is what you prefer (and probably a lot of the others here as well) but you know how I work....I prefer to educate and debunk with knowledge any not so good ideas that people might have.
That way everyone learns something...and I am trying to keep the helping threads from being derailed.

Everyone knows what I think about helping threads and derailing. I have decided as one of my New Year's resolutions to try to stop potential derailing when I see it instead of after the train wreck has already happened. Train wrecks are ugly. I don't like ugly.

[zonker]

Some heated discussion going on about patients altering settings. This is a better place to continue the discussion instead of hijacking newbie helping threads with the arguments.

odd. one member of the "heated discussions" hasn't shown up here to carry on the conversation.

i can't add much to what others have said. i'm too lazy to post the statistics page out of oscar. it says over the last year my ahi is averaging 0.98, last 6 months 0.91. it would be even better, but the last 3.5 months have been spent in a strange bed, which will straighten out when the new house is built and i get my bed back.

i have NO doubt that had i keep seeing a doctor and NOT ever have visited this forum, my ahi would be much worse. or i would've quit the machine many years ago.

but, i still would like to read here why changing our own pressure could be construed as bad for us. janknitz was good enough to give us a heads up about congestive heart failure and the perils involved there. would like to read any other cases where it would be detrimental.

[babydinosnoreless]

If you are someone who feel that patients might harm themselves making alterations to any settings on their own...can you explain why or how they can actually hurt themselves and provide proper documentation as to the damage that could maybe be done?

I'd prefer they just GTFO and go drool over themselves elsewhere.

I will listen and if they have proper peer reviewed documentation I will take it under advisement and do what I want anyway.

I've really had it with most doctors. My endo told me she was cutting my thyroid meds because I had lost weight even tho t3-t4 levels were both in the normal range. She said if I was 30 years younger she would leave it alone ?! Wtf?!

[harrywr2]

Lets review -
The state allows me to smoke cigarettes and marijuana(if i wanted to),drink alcohol, operate a vehicle up to 20 000 pounds, use a nail gun, jump out of a perfectly good airplane and use a 500 psi pressure washer. If I wanted to try heroin I could go to a safe injection site. If I was diabetic I could adjust my own insulin.

In my youth the state compelled me to go to a place where I had a chance of being shot at or blown to bits.

But someone in the medical community thinks its not safe for me to use an air compressor that cant even blow up a ballon. 1/3 of a psi is somehow dangerous?