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Re: Feeling worse on cpap.
Posted: Sat Mar 02, 2019 1:52 am
by zoocrewphoto
the baker wrote: ↑Fri Mar 01, 2019 3:18 pm
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
You need to understand that nobody cares more about your health than YOU. And most doctors do NOT know how to use a cpap machine. They know nothing about the settings or comfort features. They only know that cpap treats sleep apnea, and ahi under 5 is considered treated. Most doctors, even if they bother to call back, and not going to be able to help you much. If you want real success, YOU need to learn how to read your data and change your settings. We are happy to teach you. But if you sit around waiting for the doctor (any doctor) to get back to you, you will never have success.
The one who did respond told you that your respiratory rate is good. I have NEVER heard anybody on this forum ever care about their respiratory rate. We care about events, the type of events, the length of events, when they happen, leaks, waking up, stuff like that.
Doctors are not all knowing gods, especially with cpap. This is one treatment where you need real experience with the machine to be able to help others use it well.
Re: Feeling worse on cpap.
Posted: Sat Mar 02, 2019 11:15 am
by zonker
zoocrewphoto wrote: ↑Sat Mar 02, 2019 1:52 am
Doctors are not all knowing gods, especially with cpap. This is one treatment where you need real experience with the machine to be able to help others use it well.
THIS-Hands.jpg
Re: Feeling worse on cpap.
Posted: Sat Mar 02, 2019 12:50 pm
by the baker
Heard back from the doctor...but I was driving there was no number in the caller id and it's Saturday..
He left a voicemail telling me to bring the machine in next week to the office and the nurse is going lower the pressure, he feels that is the way to go.
Re: Feeling worse on cpap.
Posted: Sat Mar 02, 2019 12:56 pm
by Julie
I really am curious - why do you write in here looking for help, get lots of replies from really knowledgable experienced people, and then ignore the advice given to you?
Re: Feeling worse on cpap.
Posted: Sat Mar 02, 2019 1:40 pm
by the baker
Julie wrote: ↑Sat Mar 02, 2019 12:56 pm
I really am curious - why do you write in here looking for help, get lots of replies from really knowledgable experienced people, and then ignore all the advice given to you?
Who said I ignored the advice how do you know what I'm doing and what I'm not doing
I go through my day in a terrible fog due to what ever the heck
is wrong with me so this is a lot to digest and process
It was suggested I increase my ramp pressure ( I currently am )
It was suggested I download the sleepyhead program to analyze my data i did but it won't work on my on computer
It was suggested I get my self a laptop etc that the program would run on I'm working on that doing.
It was suggested that I post screenshots of my data as soon as I get that laptop ( I intend to)
The cpap machine I got does not belong to me so I'm not going change much without the doctor orders of go messing around until I have a better idea of what is going on changing things willy nilly aren't helpful,
I'm not one to just do things without thinking them out. A wise person asks for advice then listens then makes the best decision they can based on there body in the end I'll take what people tell me and do what I feel is best for myself....
And I do appreciate all the information and help as I learn to deal with what's happening to me...
Re: Feeling worse on cpap.
Posted: Sat Mar 02, 2019 3:38 pm
by zoocrewphoto
the baker wrote: ↑Sat Mar 02, 2019 12:50 pm
Heard back from the doctor...but I was driving there was no number in the caller id and it's Saturday..
He left a voicemail telling me to bring the machine in next week to the office and the nurse is going lower the pressure, he feels that is the way to go.
Why would lowering your pressure help? That will simply allow more events to happen.
Re: Feeling worse on cpap.
Posted: Sat Mar 02, 2019 3:51 pm
by the baker
zoocrewphoto wrote: ↑Sat Mar 02, 2019 3:38 pm
the baker wrote: ↑Sat Mar 02, 2019 12:50 pm
Heard back from the doctor...but I was driving there was no number in the caller id and it's Saturday..
He left a voicemail telling me to bring the machine in next week to the office and the nurse is going lower the pressure, he feels that is the way to go.
Why would lowering your pressure help? That will simply allow more events to happen.
That's what I'm thinking.. but I didn't think the DR would call on a Saturday...so all I have is what he said on the voicemail
Re: Feeling worse on cpap.
Posted: Sat Mar 02, 2019 4:16 pm
by zoocrewphoto
the baker wrote: ↑Sat Mar 02, 2019 3:51 pm
zoocrewphoto wrote: ↑Sat Mar 02, 2019 3:38 pm
the baker wrote: ↑Sat Mar 02, 2019 12:50 pm
Heard back from the doctor...but I was driving there was no number in the caller id and it's Saturday..
He left a voicemail telling me to bring the machine in next week to the office and the nurse is going lower the pressure, he feels that is the way to go.
Why would lowering your pressure help? That will simply allow more events to happen.
That's what I'm thinking.. but I didn't think the DR would call on a Saturday...so all I have is what he said on the voicemail
I believe this suggestion as well as previous responses have proven that the doctor and the therapist really don't know much about cpap settings. They are just trying to tell you something to make you feel better. Your therapist made no mention of the important data, and the suggestion is to make your therapy worse. If you want to allow them to make changes, you need to have them show you the real data (events, type of events, duration, when they happen, etc) AND explain why they want to make the changes. I doubt they can. They are probably just looking at compliance data and think you are not comfortable, so they figure lowing the pressure will make you more comfortable. Which is actually worse. Most people are not comfortable below 6.
Unfortunately, until you can post your data, we can only guess. We recommended raising the starting pressure because 4 is usually way too low for anybody. But that doesn't mean that we have gotten anywhere near therapeutic. We need to see the data. Perhaps you would be willing to copy the sd card and send the file to Pugsy? Or have a friend who is willing to try the software on their computer? Right now, you are flying blind with a doctor who isn't really helping you.
Re: Feeling worse on cpap.
Posted: Sat Mar 02, 2019 4:52 pm
by Jas_williams
The Baker what happened when you tried to run sleepyhead on your old PC ?
Re: Feeling worse on cpap.
Posted: Sat Mar 02, 2019 5:02 pm
by the baker
zoocrewphoto wrote: ↑Sat Mar 02, 2019 4:16 pm
the baker wrote: ↑Sat Mar 02, 2019 3:51 pm
zoocrewphoto wrote: ↑Sat Mar 02, 2019 3:38 pm
the baker wrote: ↑Sat Mar 02, 2019 12:50 pm
Heard back from the doctor...but I was driving there was no number in the caller id and it's Saturday..
He left a voicemail telling me to bring the machine in next week to the office and the nurse is going lower the pressure, he feels that is the way to go.
Why would lowering your pressure help? That will simply allow more events to happen.
That's what I'm thinking.. but I didn't think the DR would call on a Saturday...so all I have is what he said on the voicemail
I believe this suggestion as well as previous responses have proven that the doctor and the therapist really don't know much about cpap settings. They are just trying to tell you something to make you feel better. Your therapist made no mention of the important data, and the suggestion is to make your therapy worse. If you want to allow them to make changes, you need to have them show you the real data (events, type of events, duration, when they happen, etc) AND explain why they want to make the changes. I doubt they can. They are probably just looking at compliance data and think you are not comfortable, so they figure lowing the pressure will make you more comfortable. Which is actually worse. Most people are not comfortable below 6.
Unfortunately, until you can post your data, we can only guess. We recommended raising the starting pressure because 4 is usually way too low for anybody. But that doesn't mean that we have gotten anywhere near therapeutic. We need to see the data. Perhaps you would be willing to copy the sd card and send the file to Pugsy? Or have a friend who is willing to try the software on their computer? Right now, you are flying blind with a doctor who isn't really helping you.
My insurance company is providing the machine on a 90 day trial, it has lots of strings attached one is i cannot make any changes to the machine unless they are authorized by the sleep doctor or respiratory therapist, and I must follow the doctor orders in regards to usage of the machine. Etc etc...
If I disregard any of the "guidelines" they take the machine back.
I'm hoping to have the information off the machine in a few days, it's hard for me to do anything with the brain fog I'm going through.
I'm am going to ask when I bring the machine in how lowering the pressure is going to help.. But I have no choice at this time if they want the pressure lower... And the doctor is away for 2 weeks.
I appreciate everyone's feedback
Re: Feeling worse on cpap.
Posted: Sat Mar 02, 2019 5:32 pm
by zoocrewphoto
the baker wrote: ↑Sat Mar 02, 2019 5:02 pm
My insurance company is providing the machine on a 90 day trial, it has lots of strings attached one is i cannot make any changes to the machine unless they are authorized by the sleep doctor or respiratory therapist, and I must follow the doctor orders in regards to usage of the machine. Etc etc...
If I disregard any of the "guidelines" they take the machine back.
I'm hoping to have the information off the machine in a few days, it's hard for me to do anything with the brain fog I'm going through.
I'm am going to ask when I bring the machine in how lowering the pressure is going to help.. But I have no choice at this time if they want the pressure lower... And the doctor is away for 2 weeks.
I appreciate everyone's feedback
If you are PAYING for this trial, then YOU do what YOU want. Following their instructions has you feeling WORSE. You are totally wasting time waiting for them while you feel like crap.
If you are not paying, then I guess it is simply a waste of your time, and if you want to feel worse for 90 days, then that is you.
Honestly, if it were me, I would return their machine, buy a used one online or via craigslist, and do what what I need to do in order to get some success. I woudl certainly not pay for the privileged of waiting for somebody to change my settings, especially when they don't know what they are doing.
Keep in mind that this forum gets no benefit from helping you, other then feeling good about helping people. We make no money from this. Your doctor is getting paid whether he is successful or not. And the more you need help, the more he gets paid.
Re: Feeling worse on cpap.
Posted: Sat Mar 02, 2019 5:48 pm
by the baker
zoocrewphoto wrote: ↑Sat Mar 02, 2019 5:32 pm
the baker wrote: ↑Sat Mar 02, 2019 5:02 pm
My insurance company is providing the machine on a 90 day trial, it has lots of strings attached one is i cannot make any changes to the machine unless they are authorized by the sleep doctor or respiratory therapist, and I must follow the doctor orders in regards to usage of the machine. Etc etc...
If I disregard any of the "guidelines" they take the machine back.
I'm hoping to have the information off the machine in a few days, it's hard for me to do anything with the brain fog I'm going through.
I'm am going to ask when I bring the machine in how lowering the pressure is going to help.. But I have no choice at this time if they want the pressure lower... And the doctor is away for 2 weeks.
I appreciate everyone's feedback
If you are PAYING for this trial, then YOU do what YOU want. Following their instructions has you feeling WORSE. You are totally wasting time waiting for them while you feel like crap.
If you are not paying, then I guess it is simply a waste of your time, and if you want to feel worse for 90 days, then that is you.
Honestly, if it were me, I would return their machine, buy a used one online or via craigslist, and do what what I need to do in order to get some success. I woudl certainly not pay for the privileged of waiting for somebody to change my settings, especially when they don't know what they are doing.
Keep in mind that this forum gets no benefit from helping you, other then feeling good about helping people. We make no money from this. Your doctor is getting paid whether he is successful or not. And the more you need help, the more he gets paid.
I'm not paying for this, and I understand what you're saying. I do have someone who is going to give me there old resmed machine (5years old)
But they are on vacation and I have to wait till they get back,
I am working on getting sleepyhead going so we have real numbers to work with.
Thanks for your feedback... I do appreciate all the advice, I just told a person I know who is struggling getting going with their cpap how helpful this forum is ...
Re: Feeling worse on cpap.
Posted: Sat Mar 02, 2019 6:01 pm
by Julie
I would make the pressure change I want to try out, then change it back before I return the machine.
Re: Feeling worse on cpap.
Posted: Mon Mar 04, 2019 3:09 pm
by the baker
So went to the doctors office so the nurse can change the pressure on the machine, turns out they are changing it from a cpap with a set pressure of 10 to an auto cpap with a range of 8-15,
The nurse said my average nightly ahi is 1.8 and I never had a night greater than 3. Which is good since my test showed an AHI of 11
And that I'm doing good and hopefully the change will make me feel better
Still trying to get sleepy head working on my computer
Last night was the first night with 6 straight hours of sleep, and my AHI was 1.2 I do not feel any better but I don't feel as bad as I have since starting
Re: Feeling worse on cpap.
Posted: Mon Mar 04, 2019 4:40 pm
by Julie
Glad to hear about the machine (and settings) change - hopefully you will feel better soon, but if not please let us know.