Change In Pressure feeling better

[Randy32]

I have learned how to change the pressure on my machine it was originally set on auto from 5cmH2O to 12cmH2O
i have been feeling tired still during my titration in the sleep center the sleep study showed that between the change from
5 and 7 i desaturated down to 84% so i was asking my dr to change the pressure out of the 5 and 6 range well no one wanted help me so i found out how to do it myself and i feel so much better right now my 90% pressure 7 day Average is at 10.0 i changed to 7cmH2O to 15cmH2O and i really feel like i am getting a much better night sleep. my machine says my AHI is 2.9 i am happy and feel more energetic. large leaks 0%.periodic breathing 0% sometimes i gues you have to take things into your own hands. my reg Dr wanted to about 2 months ago put me on O2 at night but io am still young i am only 32 but 350lbs with an 18 1/2 inch neck but i don't think i am ready to have to depend on O2 for the rest of my life i am still active for someone
of my size

[Sheriff Buford]

Randy: I was like you. I was getting great results since starting therapy last July, but it seems that last month, I started getting sleepy during the day. I changed my setting from 13 cmH2O to 14 cmH2O. The results were great! Also, I'm a "whole lotta man" as you are!

Of course I got blasted here for breaking the law (In Texas) by changing my setting myself. My response was
- I didn't do it, it wasn't me...
- I didn't know what I was doing...
- I don't know how to change the setting...
- what machine?
- what does that machine do?
- I've never seen that machine in my life...
- I bought that machine to inflated my bicycle tires...

Sheriff

[Randy32]

i feel that if no one wants help me i'll do it myself sometimes i do know what is best for me.The DR does always listen sometimes i feel like they don't give a crap so like i said i did what i did to make myself feels better and so far it has worked

[DoriC]

Randy, good that you are taking your therapy into your own hands. You're doing great. If you read here you'll find that most tweak pressures and also monitor our own data. It seems the medical community is not up to speed on the treatment of OSA.

[DocWeezy]

i feel that if no one wants help me i'll do it myself sometimes i do know what is best for me.The DR does always listen sometimes i feel like they don't give a crap so like i said i did what i did to make myself feels better and so far it has worked

You've got that one figured out, Randy! Nobody cares about your therapy as much as you do, and it doesn't always pay to wait for the doctors to tweak something. My doctor's philosophy was that he was thrilled I was trying different things to see what worked best--his exact words were: YOU CAN'T HURT YOURSELF WITH THIS...GO FOR IT.

Try different pressures, different ranges, auto to cpap, whatever. Make one very small change at a time and wait a few nights to see what happens. Only make one change at a time so that you know what is causing any change in how you feel. If something isn't working and doesn't feel right--change it the next night; you don't have to wait. If a change seems OK or good, give it a week and see how your numbers are over the week and see how you feel.

Keep it up!

Weezy

[Randy32]

i wanted to point out that over the last 3 nights my 90% has gone up from 8 something to almost 11 and my AHI has gone from 3.6 to 1.7 and feel good in the morning like i want to get out of bed i feel it is because i took it out of that 5-7 Range of pressure

[tschultz]

Good for you getting things under control. I had similar problems when I first started my CPAP trial, my orinigal pressure yielded AHI numbers between 17 and 43, enough to still be considered as severe OSA, and resulting in a number of oxygen desats. Then after waiting a full week for the sleep doctor to decide what to do, I switched to auto and over the next 4 days found that my pressure did not need to be 14, but rather 18. When I finally heard back from the sleep doctor he wanted a pressure of 15, which I already knew was not enough. I won't go into more detail here, you can see my other threads for that if you want.

Knowing I was going to have a bit of a battle I kept a detailed spreadsheet of my settings and my readings from each night, and also kept track of my oxygen levels nights I wore my oximiter, but more importantly detailed how I felt upon awakening. Armed with this information I then explained that I could prove that the numbers did not tell the whole story, because if you looked carefully at the snoring and flow limitation information that actually correlated to how I felt better then just the index numbers did. Once I got the pressure to levels to better reduce the snoring and flow limitation I felt more alert when I woke up.

I have told all my health care people that I have a major problem with a system that can send a newly diagnosed diabetic kid home with an insulin needle, a glucose meter, and some basic supplies and instructions and then fully trust that they won't kill themselves. But if you give CPAP to someone they are not supposed to even see if it working for them at all (data not visible and settings locked out), they are supposed to have complete faith in the prescribed settings based entirely on an "educated wild ass guess" pressure setting derived from a single night's sleep in an unfamiliar situation (the lab).

I truly believe that you need to look at things over 4-7 days as a minimum, and take into account how you feel, before knowing if those particular settings actually work better or worse and adjust accordingly. Of course when you simply feel better waking up in the morning you really don't need the numbers to show you there has been an improvement, but the data and logs are helpful to beat the medical professionals over the head with (in a hard binder helps ).

With a little bit of basic understanding, which is easily obtained, and making adjustments based on the way you feel and the numbers, this is no different than the approach that would be used by a diabetic to help control their blood sugar levels. No one is going to take the time to do what is best for you, if you are lucky they may help find something that seems ok, but only you can, over time, optimize your treatment.

I think it should be mandatory to provide a fully data capable machine, ideally a full auto-titrating machine.
Also what good is the hours used for compliance if the treatment is not effective! This is what should be illegal.

I am glad to hear that you are doing better.

[Randy32]

wow thank you for your reply i also have had issues with bring tired during the day and now it's not as bad but getting better seen here viewtopic/t60305/Apap-To-Bilevel.html now i received a copy yesterday and i see the Dr Tuesday hopefully she will not change much accept the machine because they recommend a bi-level machine. 2 months ago she was thinking about putting me on oxygen at night but has not made up her mind yet hopefully this test will make up her mind and i won't need it

[pbach]

Randy, You rock!

I did the same thing. My AHI was hanging around 6-7 with my titrated pressure.

Upped it a bit and now I am between 1-2.

The kicker that made me feel really good was when my doctor added night time oxygen therapy. So much morning fatigue left. My saturation levels dropped also while sleeping. This wasn't noted during my titration. It was later with a pulse ox test. My husband has noted my skin looks better.