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Re: Feeling worse on cpap.
Posted: Wed Feb 27, 2019 8:17 am
by zoocrewphoto
You can change the epr settings yourself (actually, you can change ANY of the settings. You just need to know the correct buttons to push to get the clinician manual.
Also, what are your current pressure settings? Did you change the minimum to 7? I see that it was mentioned, but not sure if that was changed.
And keep in mind that when a doctor looks at your data, they may not be looking at ALL of the data. Some look at the details, but some only look at hours of sleep and ahi. And they will consider anything under 5 to be good even though most of us need to be under 2 to feel really good. Many people here were told by their doctor that they were doing well despite having clusters of events, some of them really long, and waking up a lot.
Re: Feeling worse on cpap.
Posted: Wed Feb 27, 2019 12:38 pm
by the baker
zoocrewphoto wrote: ↑Wed Feb 27, 2019 8:17 am
You can change the epr settings yourself (actually, you can change ANY of the settings. You just need to know the correct buttons to push to get the clinician manual.
Also, what are your current pressure settings? Did you change the minimum to 7? I see that it was mentioned, but not sure if that was changed.
And keep in mind that when a doctor looks at your data, they may not be looking at ALL of the data. Some look at the details, but some only look at hours of sleep and ahi. And they will consider anything under 5 to be good even though most of us need to be under 2 to feel really good. Many people here were told by their doctor that they were doing well despite having clusters of events, some of them really long, and waking up a lot.
I have started increasing my ramp pressure.
My respiratory therapist said my data looked good not just my AHI, which i say are flawed since the machine does not know when I'm asleep,
Last night I slept 5 hours but was on my machine for 8+ hours with a AHI of 2.1 but thats for 8hours on the machine which means I had 16 or so events but useing hours slept mean I had 3.3 ahi.... If that makes sense.
Re: Feeling worse on cpap.
Posted: Wed Feb 27, 2019 1:26 pm
by Julie
Hi - you may be confusing the Ramp feature with pressure settings... many, if not most don't use the ramp at all - it's got it's own timing settings, etc. and is meant to be used with e.g. high prescribed min. settings (above 10 or 15) that make it hard for some to 'take' the initial blast when starting out... so at increases to your min. setting slowly, but as I said most don't otherwise bother setting it at all, but the scripted pressure (e.g. 7 or 9) is still set properly and you 'go' to it immediately when putting on the mask... the max. setting (often left at 20 altogether) is not involved at all. So while your 'regular' min. pressure starts out at e.g. 7, you don't 'ramp up' to it as such UNless you HAVE enabled the Ramp feature to do that.
Re: Feeling worse on cpap.
Posted: Wed Feb 27, 2019 2:05 pm
by Dog Slobber
the baker wrote: ↑Wed Feb 27, 2019 12:38 pm
My respiratory therapist said my data looked good not just my AHI, which i say are flawed since the machine does not know when I'm asleep,
Last night I slept 5 hours but was on my machine for 8+ hours with a AHI of 2.1 but thats for 8hours on the machine which means I had 16 or so events but useing hours slept mean I had 3.3 ahi.... If that makes sense.
You can't make that assumption.
These devices often flag events while we are awake, or drifting between sleep and awake.
Some of my worst (device measured) AHI sessions occurred while I was awake.
Re: Feeling worse on cpap.
Posted: Wed Feb 27, 2019 2:57 pm
by nicholasjh1
Also to consider is that with more "sleep" my body would often rouse right when an apnea was starting... which ended up LOWERING the AHI, and this worked even at a 7 minimum pressure for me. After some hard work and looking at the arousals I actually found that a 19 pressure was more appropriate. even though I have the same general AHI at 19 as I do at 7, but I sleep a heck of a lot better and fell tons better. Not to say that you should raise it, but showing us the numbers with sleepy head would go a long well to allowing us to help you.
Re: Feeling worse on cpap.
Posted: Wed Feb 27, 2019 5:51 pm
by the baker
nicholasjh1 wrote: ↑Wed Feb 27, 2019 2:57 pm
Also to consider is that with more "sleep" my body would often rouse right when an apnea was starting... which ended up LOWERING the AHI, and this worked even at a 7 minimum pressure for me. After some hard work and looking at the arousals I actually found that a 19 pressure was more appropriate. even though I have the same general AHI at 19 as I do at 7, but I sleep a heck of a lot better and fell tons better. Not to say that you should raise it, but showing us the numbers with sleepy head would go a long well to allowing us to help you.
I loaded the sleepyhead software into my desktop but.....it's 15 years old and the sleepy head is not loading right...
Hoping to get my sister's laptop running the program so I can use it to see my data.
Re: Feeling worse on cpap.
Posted: Wed Feb 27, 2019 6:24 pm
by zonker
the baker wrote: ↑Wed Feb 27, 2019 5:51 pm
I loaded the sleepyhead software into my desktop but.....it's 15 years old and the sleepy head is not loading right...
Hoping to get my sister's laptop running the program so I can use it to see my data.
that would be GREAT. each of us is unique in the actual way we sleep. so in order to tailor their advice to you, the experts here will need to see the charts that sleepyhead produces. it's a long journey of learning, or at least it was for me. but soon you'll know enough to start improving your sleep!
btw, what laptop system? win or mac?
Re: Feeling worse on cpap.
Posted: Thu Feb 28, 2019 1:30 am
by yourbrokenoven
I remember that "sore lungs" feeling. I stopped having that and stopped waking up with severe back pain after my pressures were lowered. Also, the pressure feels much less intense with my nasal mask than any full face mask I used.
Hopefully this gets solved.
Re: Feeling worse on cpap.
Posted: Thu Feb 28, 2019 1:52 am
by zoocrewphoto
the baker wrote: ↑Wed Feb 27, 2019 12:38 pm
My respiratory therapist said my data looked good not just my AHI, which i say are flawed since the machine does not know when I'm asleep,
Did the therapist state WHICH data. or just say data in general? Did they mention what type of events, how long they were, etc?
Many will say your data looks good when they really just mean hours of use and ahi below 5.
Re: Feeling worse on cpap.
Posted: Fri Mar 01, 2019 6:30 am
by the baker
zoocrewphoto wrote: ↑Thu Feb 28, 2019 1:52 am
the baker wrote: ↑Wed Feb 27, 2019 12:38 pm
My respiratory therapist said my data looked good not just my AHI, which i say are flawed since the machine does not know when I'm asleep,
Did the therapist state WHICH data. or just say data in general? Did they mention what type of events, how long they were, etc?
Many will say your data looks good when they really just mean hours of use and ahi below 5.
My RT is hard to understand, I usually have him repeat things but he said my respiratory rate was very good between 15-18
I still have not heard back from the doctor and the office told me he was starting vacation on Friday and would be gone for 2 weeks...I got rather upset I called on Monday what the hell is going on they said they would resend my message and see what happens
Re: Feeling worse on cpap.
Posted: Fri Mar 01, 2019 7:15 am
by the baker
zonker wrote: ↑Wed Feb 27, 2019 6:24 pm
the baker wrote: ↑Wed Feb 27, 2019 5:51 pm
I loaded the sleepyhead software into my desktop but.....it's 15 years old and the sleepy head is not loading right...
Hoping to get my sister's laptop running the program so I can use it to see my data.
that would be GREAT. each of us is unique in the actual way we sleep. so in order to tailor their advice to you, the experts here will need to see the charts that sleepyhead produces. it's a long journey of learning, or at least it was for me. but soon you'll know enough to start improving your sleep!
btw, what laptop system? win or mac?
Windows
Re: Feeling worse on cpap.
Posted: Fri Mar 01, 2019 7:22 am
by the baker
kteague wrote: ↑Tue Feb 26, 2019 4:08 pm
Whether it is the ramp pressure or your treatment pressure, starting too low is a common problem. You don't want your machine to be so low as to allow events. Getting one's pressure dialed in can make a big difference in feeling rested as it results in less arousals. Again, your mahine data could spot if settings are optimized for your best treatment. Beware of hitting the ramp too many times during the night.
As far as pressure the doctor told me that at my titration i had no events with the machine set at ten.
But now at home on my own machine in having them. If the DR would call back i would ask if it needs to be increased...
Re: Feeling worse on cpap.
Posted: Fri Mar 01, 2019 9:56 am
by Dog Slobber
You've stated multiple times you're waiting for your Dr. to call you back and he doesn't.
He's about to go on vacation.
We've pretty well established he's unable or unwilling to provide the attention you need to improve your therapy.
The good news is; there are people here who are able and willing to help.
- Make getting a lap top reliable (sleepyhead compatible) computer a priority
- Post your graphs
- Take the advice of the expertise that exists here
- Start managing your own therapy
Re: Feeling worse on cpap.
Posted: Fri Mar 01, 2019 12:09 pm
by palerider
the baker wrote: ↑Fri Mar 01, 2019 6:30 am
zoocrewphoto wrote: ↑Thu Feb 28, 2019 1:52 am
the baker wrote: ↑Wed Feb 27, 2019 12:38 pm
My respiratory therapist said my data looked good not just my AHI, which i say are flawed since the machine does not know when I'm asleep,
Did the therapist state WHICH data. or just say data in general? Did they mention what type of events, how long they were, etc?
Many will say your data looks good when they really just mean hours of use and ahi below 5.
My RT is hard to understand, I usually have him repeat things but he said my respiratory rate was very good between 15-18
That doesn't matter.
Re: Feeling worse on cpap.
Posted: Fri Mar 01, 2019 3:18 pm
by the baker
Dog Slobber wrote: ↑Fri Mar 01, 2019 9:56 am
You've stated multiple times you're waiting for your Dr. to call you back and he doesn't.
He's about to go on vacation.
We've pretty well established he's unable or unwilling to provide the attention you need to improve your therapy.
The good news is; there are people here who are able and willing to help.
- Make getting a lap top reliable (sleepyhead compatible) computer a priority
- Post your graphs
- Take the advice of the expertise that exists here
- Start managing your own therapy
Called the office he is on vacation, I spoke to the practice administrator told her what was going on, they will have one of the other doctors get back to me if not tonight then by monday..
And I will to the best of my abilities get on the advice you posted above.
I'm moving out of the area and of month so I'm going to need new doctors anyway.
Thanks