Changing Pressue? A no-no?

[sleepyred]

Okay, I might have done a major no-no. But here I go.

My doc ordered a pressure of 6 for my UARS and said to come back in 6 months. I was still waking up, etc.

My DME left the clinicians manual so I upped my pressure to 7. After two months, I was sleeping better - but still waking up.

I just changed it (got nervous as you know what doing it) and stopped at 7.8. I slept the ENTIRE night two nights in a row! I've never done that EVER (at least since I was a teenager)! My hubby said I was "dead to the world".

Is this a major no-no in the cpap world? I don't have an auto and when I had my 5 night study - my highest pressure was 13 (guess when I was in REM sleep which I was not getting at all before), several times during the night. I do not have an auto cpap, but might get one at sometime.

Any words of wisdom - from you wonderful experienced cpapers?

[NightHawkeye]

Congratulations, sleepyred. It's great that you're sleeping better now.

Regards,
Bill

[reval]

I think that 8 cm is a pretty safe pressure.

Since you have Resmed S7 CPAP, did you already check what happened to your AHI when you raised the pressure?

[oldgearhead]

A piece of info you may or may not know is, DME's sell the tech manuals
for most machines on eBay. Average cost is $6.00 for a download. Of
course, you can usually find this information, for free, if you are good, or lucky, with search engines.....

[wading thru the muck!]

So if I have this right, you have changed the pressure from a start of 6cm up incrementaly to your current pressure of 7.8cm and along the way you have been monitoring how you felt and you husband has been monitoring your sleep to confirm your conclusions?

If so, what you are doing sounds fine to me.

[sleepyred]

[quote="reval"]I think that 8 cm is a pretty safe pressure.

Since you have Resmed S7 CPAP, did you already check what happened to your AHI when you raised the pressure?

[sleepsearcher]

I'm in the same situation as you are. I found out how to change the pressure and am benefitting from it but I'm not sure if I want to tell my doctor that I've changed it. I don't want to make him mad. Also, I worry that he might lock the settings although I don't know if that's possible or not.

Personally, I feel as long as the we know what we're doing and are careful, we should be allowed to make changes to the settings. We are the ones that have to live our lives and if we don't get the sleep we need, we are the ones who have to suffer.

[ozij]

I slept the ENTIRE night two nights in a row! I've never done that EVER (at least since I was a teenager)! My hubby said I was "dead to the world".

It seem to me you can trust the wisdom of you body.

O.

[Amigo]

sleepyred, quite frankly, it appears that changing one's pressure is fairly common among those on this Forum, and has certainly done them no harm. Hmmm, although what has happened to those we haven't heard from in so long...just kidding!

Most, however, do have software that allows them to monitor the results of pressure changes. I'm not familiar with your machine, so perhaps others here can provide guidance on what to do.

From what I understand, the alleged danger of setting your pressure too high is inducing a central apnea. In very basic terms this means that your brain thinks you're getting more than enough air, and stops the breathing reflex.

Based on the small, incremental changes you've made, I doubt there is any danger to your health. Quite the contrary, since you seem to be sleeping better, you've probably adjusted the flow to what your body needs to keep your airway open.

Don't feel guilty about what you've done, but continue to take a cautious and slow, incremental approach to any further increases in pressure...assuming they're needed.

[Doovid]

I just upgraded my machine to the Remstar Pro 2. I casually asked the lady if I could have the clinician's manual. It was like I had asked for a top secret (!) document. She hemmed and hawed and ultimately, told me that she could" lose her license " if she gave it to me. But, she did say that, if my Dr. called her, she would release it!

I know through this forum and others that its relatively easy to change the cpap settings, and I just smiled at her, not wanting her to jeopardize her license!!! The Pro 2 allows one to prepare prescriptions and make changes to the machine through the smart card, so no big deal. And I'm not inclined to casually change my cpap setting anyway....


It just drove home the necessity of changing companies. I presently use Apria as their name was given to me as the place I had to go to to get all my cpap equipment. Being a newbie, I didn't resist...at first! Unfortunately, they make it all difficult, are hard to deal with and really aren't that friendly. They appear to always push certain equipment (high profit?), but if firmly disagreed with, will always get specific equipment that I ask for. At least that's a plus for them, although I don't like being pushed to purchase unheard of equipment, etc.

They, as many companies, should realize that it is very easy to go to another similar company!!

Sorry, didn't mean to get on the "soap box"!

[NightHawkeye]

I found out how to change the pressure and am benefitting from it but I'm not sure if I want to tell my doctor that I've changed it. I don't want to make him mad. Also, I worry that he might lock the settings although I don't know if that's possible or not.

Oh, sleepsearcher . . ., why does it matter if a physician gets mad? If he does, it's just his problem to deal with, not yours. He works for you, after all, because you are paying his bills. It needs to be a cooperative relationship, and you probably should advise him that your pressure change works better for you. If he does get mad, then that's your opening to request an APAP. Maybe he'll get you one for a "home study" for a couple of weeks to see if he agrees with the pressure change, or maybe your machine's new enough that the DME will just swap it out. Can't hurt to ask.

And in answer to your question on "locking the settings" . . . You've already defeated the only "lock" on the machine's settings that's available.

Regards,
Bill

[sleepsearcher]

Thanks Bill for putting my fears at ease that I don't have to worry that he could lock the settings on my machine. I am still intimidated by doctors not liking me taking control of my medical care. Most of them just want dumb patients that do whatever they say without question but I give them a run for their money. But sometimes I want to avoid conflicts, but I don't like lying either. I should probably tell him I reduced the pressure because if I don't, it will probably come out later.

Thanks for helping me decide how to handle this.

[Wulfman]

Thanks Bill for putting my fears at ease that I don't have to worry that he could lock the settings on my machine. I am still intimidated by doctors not liking me taking control of my medical care. Most of them just want dumb patients that do whatever they say without question but I give them a run for their money. But sometimes I want to avoid conflicts, but I don't like lying either. I should probably tell him I reduced the pressure because if I don't, it will probably come out later.

Thanks for helping me decide how to handle this.

I initially changed my pressure, too. I was prescribed 18 cm, which was the way my machine came. But, after about 45 minutes, I decided that was WAY to much to sleep comfortably. My logic was: "Any pressure is better than what I was getting before." So, I reset my machine to 10 cm. Within about a day or two, my software was showing me at an AHI average of between 1.0 and 1.5. SO, the next time I went in to see the (sleep) doctor, I went in "armed" with printouts from Encore Pro and MyEncore and informed him that I had changed the machine to 10 cm. He didn't seem none too happy about it, but had a difficult time arguing with success.....other than to try to say that the machine and results (printouts) must be wrong. We parted company shortly therafter.
I had continued with the pressure of 10 until this March 17th when I decided to up it to 12 cm. For some reason, during the last 3 months, I've been having higher spikes in my AHI and especially in March I was seeing more apneas. April seems to be starting off pretty well and I seem to be back in the sub 1.0 range more consistently (it was 0.3 last night and only one night over 1.0 in the last week). I'm hoping that this continues.

You CAN successfully monitor your own therapy! (and change your pressure)

Best wishes,

Den

[Guest]

when I informed my doctor that I have purchased a auto machine and the card reader and the software to monitor results,
his reply was that he wished that all of his paitents that needed insulin that they would be that proactive in monitoring their levels, and that he didn't see much difference between that and my monitoring/changing of my pressure levels, but by being armed with the reports he was also able to see that I did not go about changing pressures willy-nilley and was only making changes based on "how I felt" and what was working, He then suggested that raise my lower pressure level,
I only slept 2 hours for my sleep study so they were not able to get much data and I'm not about to go through that again, the sleep doc had to guess at a recomended pressure(no titration study) and now after 4 months I still don't have it perfect but I've seen the light as it were enough times that I'm not going back to pre-cpap, I'm just wanting to sleep through an entire night again and feel rested in the morning again. Its tough changing(at least for me)or training your subconsious to do what you know it needs.

Brian

[Goofproof]

[quote="Anonymous"]when I informed my doctor that I have purchased a auto machine and the card reader and the software to monitor results,
his reply was that he wished that all of his paitents that needed insulin that they would be that proactive in monitoring their levels, and that he didn't see much difference between that and my monitoring/changing of my pressure levels, but by being armed with the reports he was also able to see that I did not go about changing pressures willy-nilley and was only making changes based on "how I felt" and what was working, He then suggested that raise my lower pressure level,
I only slept 2 hours for my sleep study so they were not able to get much data and I'm not about to go through that again, the sleep doc had to guess at a recomended pressure(no titration study) and now after 4 months I still don't have it perfect but I've seen the light as it were enough times that I'm not going back to pre-cpap, I'm just wanting to sleep through an entire night again and feel rested in the morning again. Its tough changing(at least for me)or training your subconsious to do what you know it needs.

Brian