Opinions about self treating sleep apnea please.

[Todzo]

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.

Hi again,

I have been reading this thread with intense interest - I did not have time until today but now I am there.

The interest comes from even my own situation. I have been using CPAP for nine years now - first titration too low - pressure bump ok for a time - pressure bump and adding feedback (read data a couple of times a week) ok for a couple of years. Moved to a more healthy enviornment, at higher altitude, and lost weight and struggled to keep the breathing stable (the other side of the coin from AHI). My honest efforts to find a doctor who could work with me to reduce pressure failed.

So I reduced pressure.

In my case the titration that they wanted to do seemed to me to be an exercise in most probable failure. It was to be done in lab and my nerves already are rather frayed by an assault and robbery upon my person a couple of years ago. Simply I know from reviewing my own data that I am quite physically differant every night so I really do believe that most likely a prescription developed in a single night would most likely be wrong for the majority of the rest of the nights.

Indeed I think our whole concept of titration needs to change. It should always be a constant unending process - really - really - absolutely!!!!

I think it is likey that you will have a better experiance on your path the way you are going.

Carry on!

Todzo

[chunkyfrog]

When I got my Autoset, I had been using my Elite for over 9 months at 14cm.
I set my Autoset for 12-16 at first; observing after a few days that my pressure was pegged at 12.
I dropped my lower limit 0.5cm at a time to 10, where my pressure was consistently reported a shade above that.
After being awakened by runaway pressure a couple of times, I moved the upper limit down to 14,
which is beyond nearly all demands for peak pressure.
All my pressure reports are between 10 and 12 now.
Titration was of far less value than assumed by the lab/doctor.
Your mileage may vary.

[jnk]

. . . I have a baseline sleep study report that shows AHI, RDI sleep stages etc. . . .

Have you posted a link to that info yet? I forget.

. . . I do have a family practice doctor who is willing to review my data when I get it out of my S9. She is very bright and not too proud to consult when she doesn't know. She is willing to help me out because she knows I don't have insurance for this. . . .

Then you have gold. Your family doc should be able to say whether you have any conditions that contraindicate APAP. Make her look it up. Once she says APAP is OK to try, you have the green light to explore, as I see it.

. . . It also seems that everyone on this forum who has been at it awhile is tweaking their own treatment considerably while ignoring bad DME advice. . . .

Many of us got here because we were not pleased with the results we were getting from CPAP at one time. If we had been pleased with it from the start, we wouldn't have had any reason to go looking for help from a forum. So the members of this forum do not necessarily represent the norm for PAP patients. But here it has been discovered that keeping the minimum on an APAP set at, or as much as two cm below, the pressure needed during a PSG to prevent apneas is one way some get excellent results from APAP if wide open settings aren't working well. Here it has also been discovered that some end up feeling more refreshed in the mornings if they eventually find one pressure for straight CPAP that takes care of the majority of events, then only use their machine in APAP mode once in a while for a mini titration study. Others do fine either way. Others don't do so well either way and end up using something other than PAP therapy. I, myself, happened to get good therapy rather quickly once I set up my autobilevel. Now I just hang around here to irritate people, mostly.

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? . . .

DMEs just hand you equipment. They don't give pressure advice. If you have a better way to get equipment, you don't need a DME. It would be unethical for a DME to help you find a good pressure. They don't have as much freedom as we fellow patients do!

If you have diagnostic sleep study results that have been signed off on by a sleep doc saying that all you have is OSA and that PAP is OK for you, all ya gotta do is use your auto for a personal mini titration for finding a good starting pressure. Then you use the data from the machine to find the best pressure(s) for you over time if you still have problems, which you may not, since many don't. All this stuff is easy for many, hard for a few who are sensitive to the pressure, and impossible for others with complicating factors beyond OSA. The most significant disadvantage in not having a lab titration is that sleep issues beyond OSA will not get found--such as pressure-induced centrals or limb movements that don't go away, etc. But treating OSA, and OSA alone, is often easy enough without a real lab titration if you skillfully use the trending data your home machine gives you.

As I understand it. In my opinion. YMMV. And all that jazz.

[dhudiburg]

Wow. I'm impressed by your motivation and willingness to take matters into your own hands. I'm also amazed by the quality of the advice you've gotten. Kudos to all. I'm not new to the forum, but haven't posted much since I left DeVilbiss. It's very cool to see the level of support here. You are doing good work folks!

[Paulrp]

Often I see people advising to "Tighten" the setting for apap machines, but I have been on cpap 4.5 years, and have left my machines at 5-20 cm h20. My ahi is typically under 1 (2.5 is a bad night). We are all different, and the biggest problem I ever had was with the low starting pressure and some congestion which made it difficult to breath when starting. Now, the starting pressure is fine and i rarely exceed 10 cm h2o. I used to monitor my therapy often, But switched to a 64 bit computer and did not like encore pro, and just could not get encore viewer to work right (Even in windows xp mode). My advise would be to set the machine to 5-20 cm h20 and then follow your Doctor's advice about changing it.

[MrPresident]

dhudiburg
Thanks for the encouragement. And I agree, the help here is first rate.

jnk

Have you posted a link to that info yet? I forget.

Not yet but I can do that tomorrow night. Busy day today. I also want to put up a couple of Sleepyhead graphs that I have questions about.

Then you have gold. Your family doc should be able to say whether you have any conditions that contraindicate APAP. Make her look it up. Once she says APAP is OK to try, you have the green light to explore, as I see it.

I will ask her about that. I was not aware that there could be that much different between CPAP and APAP in terms of risk. And yes my family doc is awesome.

Thanks for your comments.

avi123

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?

Good distinction there between "advice" and "comment (or how I did it). Not my intention to shift any responsibility for my decision to you or anyone here on the forum. We must be careful what we say when the whole world is able to listen in. I will remember that distinction in the future.

However, I did set my S9 at 12-14 and yes it was too narrow. I have widened it out to 10 to 16 and it seems to stay within that range, close but not crossing the limits. My results are a little skewed because I am still trying to decide between 2 mask. One of them is a Sleepweaver Soft Nasal mask and I'm experimenting with a few things there too. The other is a Quatro FX Full Face. That probably effects my results somewhat. When I get that settled I'll be comparing apples to apples.

Thanks for sharing your experience.

I saw a thread about people with nasal mask that use inexpensive athletic mouth guards to control mouth leakage rather than taping the mouth shut (not sounding like an option I could live with and not without it risk, it seems to me). For some reason having the mouth guard in helps some people (but not all) control mouth leaks. I have tried it once and had some success. Will post updates as I go along with that. I am trying to make my Sleepweaver Soft Nasal Mask work. Have tried a Quatro FX full face and I could probably make that work but would rather get the Sleepweaver to work. I really like it and the mouth guard seems doable if it is effective.

Thanks to everyone.

[avi123]

avi123

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?

Good distinction there between "advice" and "comment (or how I did it). Not my intention to shift any responsibility for my decision to you or anyone here on the forum. We must be careful what we say when the whole world is able to listen in. I will remember that distinction in the future.

However, I did set my S9 at 12-14 and yes it was too narrow. I have widened it out to 10 to 16 and it seems to stay within that range, close but not crossing the limits. My results are a little skewed because I am still trying to decide between 2 mask. One of them is a Sleepweaver Soft Nasal mask and I'm experimenting with a few things there too. The other is a Quatro FX Full Face. That probably effects my results somewhat. When I get that settled I'll be comparing apples to apples.

Thanks for sharing your experience.

I saw a thread about people with nasal mask that use inexpensive athletic mouth guards to control mouth leakage rather than taping the mouth shut (not sounding like an option I could live with and not without it risk, it seems to me). For some reason having the mouth guard in helps some people (but not all) control mouth leaks. I have tried it once and had some success. Will post updates as I go along with that. I am trying to make my Sleepweaver Soft Nasal Mask work. Have tried a Quatro FX full face and I could probably make that work but would rather get the Sleepweaver to work. I really like it and the mouth guard seems doable if it is effective.

Thanks to everyone.

Comment,

Can you post Stats and/or pressure graphs instead of filling your posts with text?
Use a nasal mask like my which comes in different names like Resmed Mirage Sogtgel or Activa, or Respitonivs blue, etc. The Quattro FX is dlicate and crept all over my face when I tried id. . Sleepweaver I an not faimiliar with. I keep the mask straps completely loose. O yes you need to use a Chinstrap (under the masks straps) with those masks that I mentioned.

Here are my Stats and graphs from same night. Can you show youres?

[MrPresident]

I don't have images of my original sleep study but here is the short version of the results.
0 Centrals
0 OA
25 AHI
38 RDI
Snore up to 70 db

I am not sure what the difference is between "EPAP" and "Pressure" is on the Pressure Graph.
What is "Flow Rate" and Mask Pressure" indicative of?
I always sleep through the first 2 to 3 hours with no events except maybe 1 or 2 right before I wake up. Then clusters of events.






What does "Tidal Volume" mean?



Events consist of Centrals and Hypopneas





Link to SleepWeaver Advance Soft Nasal Mask.
https://www.cpap.com/productpage/sleepw ... -cpap.html

[wilsonintexas]

I am glad that you are working with your doctor, It is important. SO is looking at your own data and understanding it.

You asked what can go wrong. Incorrect settings can induce the very thing you are trying to correct. I was given a new machine which was suppose to be set for Auto Bipap with a minimum of 10 and a max of 18. In the auto mode, that machine could adjust. The machine was incorrectly set to straight BIPAP with minimum of 10 and a max of 18. That is WAY to much of a difference. short version, My AHI jumped to 56, all induced "centrals". It was over the weekend, and with the help of this forum, I re-set the machine until I could talk to the DME.

I have had the same S9 autoset. Look at your data, and adjust things slowly. Your body takes time to adjust to things.

It has been 2 weeks, and my AHI is slowly coming down, so it may take time.

Many of us also bought a recording o2 meter. If your apneas do not seem to be under control, consider one. It will tell you if your o2 levels are getting low. It should be on your sleep study. during my sleep study my o2 went down to 74%... It should be above 90. A common one is about $75 and is the CMS50e. I picked one up because I was still having an AHI that was a little high. If I did not have insurance, I certainly do this if I had low oxygen to begin with, or you are having apneas that are not coming under control. The data can be integrated with Sleepy head. many times it things are borderline the DRs ask for an overnight 02 study.

Good luck, and take your time with it.

[Pugsy]

You are using a ResMed machine and the exhale relief EPR. EPR drops the pressure during exhale.
EPAP...is the pressure that is delivered when EPR drops the pressure during exhale.
IPAP is the pressure delivered during inhale.
If you weren't using EPR your EPAP would equal your IPAP because there is no drop in pressure.

Mask pressure is just the pressure inside the mask and will mimic the pressure line and really isn't all that important item to watch.

The flow rate is just a record of all your breathing with the events flagged. If you zoom in real close you can see individual breaths. So that black fuzzy line is just a scrunched up recording of your individual breaths and if you zoom in on an individual event you can see it up close.
Go to that events tab...find a single event with a time by it...click on that single event and the graphs will change so you can see the actual breath by breath of that event up close. The flow changes from a fuzzy line to single breaths.

[avi123]

I don't have images of my original sleep study but here is the short version of the results.
0 Centrals
0 OA
25 AHI
38 RDI
Snore up to 70 db

I am not sure what the difference is between "EPAP" and "Pressure" is on the Pressure Graph.
What is "Flow Rate" and Mask Pressure" indicative of?
I always sleep through the first 2 to 3 hours with no events except maybe 1 or 2 right before I wake up. Then clusters of events.

From when are those above numbers, is it a short version of your sleep study?

From when are those SleepyHead graphs?

SleepyHead has Glossary. See here:

http://sourceforge.net/apps/mediawiki/s ... e=Glossary

I thought that you'll show your present nights on ResScan:

http://www.resmed.com/int/assets/html/s ... ister.html

(you could fill the form with any name)

ResScan Video Tutorial:

http://montfordhouse.com/cpap/resscan_tutorial/

[Pugsy]

You can take on screen shot of the entire SleepyHead graph so that it includes the date/calendar, AHI bars and breakdown and graphs.
It may appear to be too large for viewing but most of the time we can right click on the image and see the right side of the graph.
There is no need to crop so close.
Here is an example of one of mine. I have turned off the pie chart so the lower numbers are in view.
I assume your most recent image above is from last night. Looks great. Points to things working well for you.
Please ignore the ugly leak line. Long story that there no need to go into right now.

[gertrude]

Pugsy,

I tried the right click trick, but couldn't seem to get a full picture. What should I select on the menu that comes up after a right click?

Thanks!

[Pugsy]

I tried the right click trick, but couldn't seem to get a full picture. What should I select on the menu that comes up after a right click?

choose "View Image" and see if it changes to full view. Let me know either way because I might need to change something in my photobucket account if it doesn't show the entire image.

[Todzo]

I don't have images of my original sleep study but here is the short version of the results.
0 Centrals
0 OA
25 AHI
38 RDI
Snore up to 70 db

I am not sure what the difference is between "EPAP" and "Pressure" is on the Pressure Graph.
What is "Flow Rate" and Mask Pressure" indicative of?
I always sleep through the first 2 to 3 hours with no events except maybe 1 or 2 right before I wake up. Then clusters of events.

Congratulations! Your nightly dance with PAP has begun.

Some things to keep in mind:

This is very new to all of your systems. Your breathing reflexes, in particular, are in the process of a major learning process!!! This takes time and means that things - from your end - will be "moving" very fast for the first couple of weeks - then - a bit slower in the next few months - then following your circumstances, lifestyle and the seasons more or less from then on. I do recommend spending some quality time awake on the machine during the day. Learn to breath quietly at times and use pleasant distraction to let the learned reflexes set in your systems as you enjoy the distraction.

With PAP pressure, in general, more pressure means more power to prevent AHI – YET – if it causes you to breath too much the result will be irritation of the airway passage, likely contribution to “rostral shift” where your fluids move toward your nose and cause swelling and AHI, and reductions in circulation and oxygen transport to hungry cells.

Your lifestyle will, in part, determine the tendencies to have AHI and/or to breath too much (have unstable breathing). Stress, for example, tends toward inflammation (more AHI) and less breathing stability (more of a tendency to over breath). To a great extent I have come to believe that reducing stress, doing things you love, taking exercise, eating well, and otherwise living well are better controls for making PAP work than are the actual PAP parameters.

I was happy to see your decision to lower the auto high pressure. Indeed, now that I see some of your data I think that you do have a tendency to over breath. For example, at my 200 pounds I like to see a Minute Ventilation (amount of air breathed in liters per minute (lpm)) at 6 lpm or less with the 95% under 8 lpm. To move toward that I do what I can to reduce stress, do aerobic exercise with interval training, eat anti-apnea, and train with a pulse oximeter to breath for lowest heart rate with exertion held constant.

I find myself a bit jealous. I really wish I had been where you are now starting CPAP. I do rejoice at your possibilities.

May we avenge our apneas well!

Todzo