Opinions about self treating sleep apnea please.

You're most welcome! Let us know how you're doing when things get underway.

MrPresident wrote: The Question:
What do you all think of someone skipping the apparently untrustworthy DME and just tweaking my CPAP machine until I get good AHI numbers and stop falling asleep at stoplights? Aside from finding a mask that I can tolerate this CPAP thing seems pretty easy to get the hang of. Am I missing something? Do I really need a DME so that I can post here about all the dumb things they are telling me?

Your all smart, experienced and pretty nice to noobies making dumb mistakes. So I value your input. Thanks.

PS....I am sure there are some very competent DME's out there that could be a big help so I don't want to paint them all with the same brush. But obviously a lot of people here have had problems with some of the DMEs.

Comment,

Check this thread to see that Professor robysue was not happy with several of her sleep studies and decided to to do her own titration:


viewtopic.php?f=1&t=80191&st=0&sk=t&sd=a

When i did my first study 2 years ago the technitians there goofed and gave me the wrog prescription for settning my CPAP. They gave a pressure of 5 to 7 cm to set on my CPAP at a that time. Later I found myself that it was too low and it should have been 12 to 13 cm.

To start titrating yourself you first need to get a Clinician Manual or look in some videos to learn how to set the S9 Autoset by the knobs and switches. Next, you set the machine in CPAP mode and test yourself from a pressure of 6 cm up to a pressure of 10 cm while raising the pressure 1 cm per night (three nights for same pressure) and keep a log of the results by reading them from the screen on the machine and also add remarks how do you feel in the morning. Here is the way that I did it two years ago by using my S9 Elite which is a CPAP only machine. Later I crossed off (discarded) all the tests in which the 95% pressure leek was above 24 liter/per min, this 95% leek I also read from the screen on the machine.

Later, From the log I could estimate the pressure and also EPR number to set on the S9 Autuset and run it in APAP mode. BUT, you need to pay attention that APAPs are contraindicated for persons with underlying medical conditions such as congestive heart failure, chronic obstructive pulmonary disease (COPD = a past heavy smokers), or significant amounts of central apnea.

See my log here:

(done in 2011)

avi123 wrote:.....Next, you set the machine in CPAP mode and test yourself from a pressure of 6 cm up to a pressure of 10 cm while raising the pressure 1 cm per night (three nights for same pressure) and keep a log of the results by reading them from the screen on the machine and also add remarks how do you feel in the morning......

avi123

A number of other responses suggest setting the range from 4-20 and see the high and low range from that. It seems easier. Why do you suggest manually bracketing to getting to a proper range?

I'll have to study your result some to get the trends.

Thanks for your help.

PS to avi123

I'll check that link to Professor robysue tomorrow. Right now I am going to plug my nose in and may get some REM and approach the threshold of a dream.

Peace.

It's pretty common for an APAP to be set to start with a range of 4-20, but leaving it there ongoing is not likely to give optimum therapy. I'm one who feels like I'm suffocating at 4. Some are fine with it. The machines respond to certain criteria in a very methodical manner in increments so as to supply only the pressure needed to resolve the situation and no more. Unfortunately, that leaves of lot of time for one to be having trouble before the machine reaches an effective pressure. Once you get an idea of what pressure it is taking to keep your airways open, you can tighten your lower range to where it doesn't take so long to work for you. Also, there's the saying "an ounce of prevention is worth a pound of cure". It's just more efficient to start your range closer to where you'll need it to be. Some even switch to CPAP mode then. It's personal preference. The top of the range shouldn't matter, but there can be exceptions. Some have reported their machine going higher than necessary - it's a wonderful science for us, but not a perfect one. Experience will guide you on what's gonna work best for you.

The wonderful members of this forum have a wealth of experience and information. I also have found another great free resource on the web that you might want to check out: freecpapadvice.com. This forum is run by a certified sleep technician who is generous enough to answer questions from anyone who joins and posts. I've got a lot of very valuable advice from him, and specific coaching on equipment, questions to ask the doctor, masks, etc.

I think it's great that you recognize how serious this problem is and are trying to do what you can to minimize your health risks. Good luck!

MrPresident wrote:Question: When you "screwed mine up...", how did you screw it up and in what way did you get really sick? That might help me from screwing up too.

Well, there's a lot more to the story, but the gist is:

I got another CPAP machine from someone else, and I thought I had set it to 8-20 auto pressure, when in fact it was on 8 manual. My old, dumb manual CPAP was set to my prescribed pressure of 10. I had quit seeing my CPAP doctor years before.

I was almost bedridden for a while at the time by knee problems, and had a lot of other things going on, and I didn't make the connection between the different CPAP machine and my problems. I had probably been suffering mildly from some of the same problems because my pressure needs had increased over the years. With the 20% pressure drop, over time, I started having lots of stomach discomfort, nausea, heartburn, tiredness, difficulty sleeping, extreme tiredness, and coughing. I began to dread going to sleep.

The symptoms were a bit like heart trouble, but they weren't really right for heart symptoms. I would still get panicky about heart problems in the middle of the night when it kept me awake. I did work with my GP doctor and finally a cardiologist, who agreed I wasn't showing the right symptoms for heart trouble.

Luckily, I finally woke up and figured out to check the CPAP machine and set it correctly to do auto pressure. I had an overnight "miracle cure" for the worst of my symptoms.

I and my doctors were suffering from tunnel vision of "he's doing CPAP, he doesn't have apnea." Sometimes, doctors suffer from the other form of tunnel vision of "he has apnea, that's probably the cause of all of his problems."

I probably wouldn't have been so bad if I hadn't switched CPAP machines and ended up with the wrong pressure, but I was probably suffering some problems even at my original 10 cm dumb manual CPAP pressure.

If I had been going back to the CPAP doctor all the time, he MIGHT have figured things out, but he is the one who originally prescribed me a dataless CPAP machine, so I don't know if he would have figured it out.

I now have data capable CPAP and monitor my results with software. I haven't gone back to my CPAP doctor.

kteague wrote:It's pretty common for an APAP to be set to start with a range of 4-20, but leaving it there ongoing is not likely to give optimum therapy.

Hi,

That is exactly right. The reason is that it takes the machine time to ramp up from 4 to a useful treatment level when you have breathing events. It might take so long for that ramp up to happen that the machine is unable to treat the event leaving you still having an apnea event. So, the 4 to 20 is really only good to get an initial estimate of where you need to be. Once you run that way a few nights, your machine will tell you a first estimate of the 90% or 95% level. Once you get that, you go into a cycle of narrowing down the pressure range.

For example, if your 90% or 95% pressure comes out to be 9, then you want to tweak to a range of 8 to 20. Then run a few more nights, and you may find that 90% or 95% level moved up to 11. That would suggest a range of 10 to 20. After you get the bottom number dialed in, then look at the top number. If you find that your max pressure when running 10 to 20 is 13, then you can tweak it back to 10 to 15.

Your numbers will vary, so you want to end up with a pretty tight bracket that is 1 to 2 below your 90% or 95% pressure, and the upper number a little higher than your typical max pressure. The tighter range will allow the machine to adjust up very quickly and knock down some of the tougher apnea events, yet still allow it to run much of the time at a little lower pressure.

Another setting to look at is Exhale Pressure Relief. That allows the machine to throttle back just a tiny bit on exhale, making it much easier to breathe out. EPR (or Flex on some machines) is normally a number from 1 to 3. Try it at 2, and see how it goes. If you don't notice a difference, then set it back to 1 or turn it off. If you notice a big difference, then try it on 3.

-john-

MrPresident wrote:

avi123 wrote:.....Next, you set the machine in CPAP mode and test yourself from a pressure of 6 cm up to a pressure of 10 cm while raising the pressure 1 cm per night (three nights for same pressure) and keep a log of the results by reading them from the screen on the machine and also add remarks how do you feel in the morning......

avi123

A number of other responses suggest setting the range from 4-20 and see the high and low range from that. It seems easier. Why do you suggest manually bracketing to getting to a proper range?

I'll have to study your result some to get the trends.

Thanks for your help.

Reply,

I did it first in CPAP to exclude my having a Central Sleep Apnea Syndrome (CSAS). If I saw in my log, CAIs higher than OAIs or CAIs higher than 50% of the AHIs then it could be an indication that I suffered from CSAS, in which case an APAP is not recommended. But this was not the case. So I proceeded in APAP mode by setting the maximum pressure on 10 cm and the minimum on 9 cm, and EPR = 3, full time, with No ramp. I did not set the APAP on 20 cm b/c it was not needed (by my log) and also I did not want to take a chance that my flow limitation or snore would raise the pressure to higher levels. Hi pressures are bad for the heart and blood pressure, and also raise the leaks.
As to the min pressure set on 9 cm notice that the EPR set on 3 would have reduced my exhale pressure to below 7 cm (10 cm less 3 cm).

But the final pressures adjustments I did by looking at the pressure graph in ResScan. You can see in the following graphs that the pressure
graph was not allowed to "kiss" the maximum pressure limit. If it did then I would raise the set maximum pressure on the APAP by 0.5 cm at a time untill it stopped kissing:

I ended with the following set- ups:

(Note that the pressure graph is confined between the max and min limits. I can't do it [yet] with SleepyHead software)





And my recent ResScan 60 days Stats were these:

(All the values in the following Stats table, including the 95% Percentiles, Medians, and Maximums, are Medians of the sixty nights Stats results)

avi123

Thanks for the very detailed information. By this time tomorrow I should have some data from my S9 Autoset.

avi123

I got my S9 Autoset tonight and I am excited to give it a spin. After reading your advice I plan to use your method for titration. I already know that anything less than 12 and I feel like I am suffocating. So I plan to set it at 12 - 14 and see what the graphs look like.

I'll let you know how it goes in about a week.

Thanks again.

MrPresident wrote:A number of other responses suggest setting the range from 4-20 and see the high and low range from that. It seems easier. Why do you suggest manually bracketing to getting to a proper range?

I'll have to study your result some to get the trends.

Thanks for your help.

In your situation the popular recommendation would be to set the range wide open for a week(if tolerated) to more easily arrive at your 95% pressure but sometimes newbies have mask issues which creates large leaks which in turn may cause runaway pressures trying to accomodate the leaking. And some people are very sensitive to changing pressures which causes arousals. So it's really not the ideal setup but you can arrive at your "sweet spot" more easily. Of course If there are concerns about high pressures causing centrals or the wide range is too uncomfortable, going the manual cpap route can be done also. It's been said that a pressure of 10cms is a good starting place and is usually sufficient to keep the airway open in most cases but you could try a bit lower pressure as well. Most people feel they're not getting enough air at very low pressures. Edit- I just noticed your post about your preferred setting. Keep us posted.

pats wrote:

MrPresident wrote:The Question:
What do you all think of someone skipping the apparently untrustworthy DME and just tweaking my CPAP machine until I get good AHI numbers and stop falling asleep at stoplights? Aside from finding a mask that I can tolerate this CPAP thing seems pretty easy to get the hang of. Am I missing something? Do I really need a DME so that I can post here about all the dumb things they are telling me?

Although I don't have DME insurance, I do have enough money that I could have easily bought a machine from a DME if I had felt using one would have been a significant benefit. I decided not to do so, based partly on poor responses to e-mail attempts to get quotes on the APAP I intended to buy. Only one DME responded within a few days with a dollar quote, and that quote was totally out of range. For several hundred dollars I could take a few minutes to read the instructions and set up the equipment myself.

I did start out with the advantage of a sleep doctor's prescription giving an APAP range which has worked well for me so far.

So far, I am glad I bought my APAP over the Internet, rather than from a DME. I think a DME might be helpful if the user has difficulty setting up equipment, following written directions, and analyzing results.

Your post adds to my conviction that the DME path is not doing it for OSA treatment. I think we should move toward, as we kind of are here, doing the drop ship thing and attending PAP University!

Keep on posting!

Todzo

DME= Do Make Errors.

MrPresident wrote:avi123

I got my S9 Autoset tonight and I am excited to give it a spin. After reading your advice I plan to use your method for titration. I already know that anything less than 12 and I feel like I am suffocating. So I plan to set it at 12 - 14 and see what the graphs look like.

I'll let you know how it goes in about a week.

Thanks again.

Comment,

It's not my advice but the way I did it! IMO, 14/12 is too narrow. Why not 14/ 9 cm, and make sure that the Ramp is off. I like EPR = 3, full time, to help me with exhale. What mask are you using?