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resetting ResMed pressure range above 95% pressure
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ekim Offline

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Post: #11
RE: resetting ResMed pressure range above 95% pressure
(11-05-2013 04:33 PM)ekim Wrote:  
(11-05-2013 03:16 PM)PaulaO2 Wrote:  Let me see if I understand this correctly.

Your 95% is 11.2 and she set the minimum number on the APAP to be HIGHER than that?

If that is true, then she is nuts.

The 95% means you were at or LOWER than 11.2 most of the night. Typically, the maximum number is set slightly higher than the 95% and the minimum number is set based on other bits of the data, like where it sat after it settled once you fell asleep or where you feel the most comfortable as you fall asleep.

By setting the minimum that high, she's setting you up to fail. And, quite possibly, inducing central events.

And, since you also think this may be medication related, my suggestion would be to go back to the setting that worked for you then speak to whoever about the medication. You are changing too many variables at once. Get the medication settled first then mess with the CPAP.

.............

As for the medicine issue. I had an allergic reaction to my thyroid medication (levothyroxide - swelling). One of my blood pressure medicines (diltiazem 360mg) was too high according to the heart specialist and discontinued - replaced by lisinopril 10mg. I do not take any thyroid medication currently, but waiting to see a specialist as to whether or not I should take natural replacement thyroid medication.

..............

Saw an Endocrinologist yesterday and he stated that I have Hashimoto's disease - a common cause of hypothyroidism. He referred me to an allergist to try to determine what's in the medicines I've been taking that is causing my allergic reactions. I don't have any of the symptoms associated with the Hashimoto's disease, so no push to treat with any medication at this point.

ResMed APAP settings are still showing me running aro. 1.5 ~ 4.0 AHI and 95% pressure aro. 11.2. I'm sleeping much better than I was at the higher pressure suggested by the Pulmonologist - going to be an interesting doctor visit (with another Pulmonologist) in 6 mos. when I have to return for a check-up....
11-08-2013 09:11 AM
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me50 Offline

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Post: #12
RE: resetting ResMed pressure range above 95% pressure
This brings up a question of whether those that are still following up with a doctor. What kind of doctor are you seeing.....a sleep doctor, pcp, pulmonologist?
11-08-2013 09:44 AM
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ekim Offline

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Machine: ResMed S9 AutoSet
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Post: #13
RE: resetting ResMed pressure range above 95% pressure
(11-08-2013 09:44 AM)me50 Wrote:  This brings up a question of whether those that are still following up with a doctor. What kind of doctor are you seeing.....a sleep doctor, pcp, pulmonologist?

The Pulmonologist scenario is because I utilize the VA and the Clinic doesn't handle sleep disorders (or any specific medical situation requiring a specialist). They refer you to the main hospital for a specialist. I place the VA in the same category as a Healthcare HMO - hurdles and delays, but most people in the VA are very friendly, and you do eventually get things resolved. My current Pulmonologist is my first real VA dissappointment, and I've probably let this go on too long (you may request another VA doctor if you're not happy).

As mentioned - I am very interested in how others here handle going against the recommendation of their Sleep disorder doctor, after they've found this website and taken control of their CPAP machine and tweaked it for personal sleep comfort.

It would have cost me a lot of time and money (I live almost an hour from the VA hospital) getting things "right' on the machines I've used currently. As mentioned, they did screw up the recommended settings on my original machine once. When the replacement machine "DeVilbiss Intellipap" was set to the straight CPAP (which I could not tolerate) - I had already found this website and was able to change it back to APAP myself so I could sleep. When I got the ResMed replacement for it (which I've also tweaked for personal sleep comfort) I have not followed the recommendation last given by the Pulmonologist as it made for an intolerable night's sleep. I'm going to have to face my new Pulmonologist at my next check-up and defend my settings.
11-08-2013 10:52 AM
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vsheline Online

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Post: #14
RE: resetting ResMed pressure range above 95% pressure
(11-08-2013 10:52 AM)ekim Wrote:  When I got the ResMed replacement for it (which I've also tweaked for personal sleep comfort) I have not followed the recommendation last given by the Pulmonologist as it made for an intolerable night's sleep. I'm going to have to face my new Pulmonologist at my next check-up and defend my settings.

Hi ekim,

The doc may be concerned primarily about compliance hours and AHI.

Maybe if those are good, I would think the doc will not want to argue with success.

Take care,
--- Vaughn

Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
(This post was last modified: 11-10-2013 05:15 AM by vsheline.)
11-10-2013 05:11 AM
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DeepBreathing Offline
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Post: #15
RE: resetting ResMed pressure range above 95% pressure
(11-08-2013 10:52 AM)ekim Wrote:  As mentioned - I am very interested in how others here handle going against the recommendation of their Sleep disorder doctor, after they've found this website and taken control of their CPAP machine and tweaked it for personal sleep comfort.

I haven't gone against their recommendations but after about the third weekly session I walked in with a bunch of SleepyHead printouts and said "I think we should try this..." She agreed with me and said to adjust things within an agreed range to see what worked best. (Actually nothing worked very well until we changed machines but that's another story).

I think if you demonstrate that you're being responsible, and getting reasonable outcomes, they can't argue. Health care is supposed to be a partnership, and if your therapist doesn't recognise this, it's time to try another one.

DeepBreathing
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11-10-2013 05:26 AM
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ekim Offline

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Posts: 13
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Machine: ResMed S9 AutoSet
Mask Type: Full face mask
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Post: #16
RE: resetting ResMed pressure range above 95% pressure
(11-10-2013 05:11 AM)vsheline Wrote:  
(11-08-2013 10:52 AM)ekim Wrote:  When I got the ResMed replacement for it (which I've also tweaked for personal sleep comfort) I have not followed the recommendation last given by the Pulmonologist as it made for an intolerable night's sleep. I'm going to have to face my new Pulmonologist at my next check-up and defend my settings.

Hi ekim,

The doc may be concerned primarily about compliance hours and AHI.

Maybe if those are good, I would think the doc will not want to argue with success.

Take care,
--- Vaughn

As I understand it - compliance is basically a tattler scenario, and insurance companies use it substantiate (or deny) rental payments. The VA doesn't rent them and I've never had an issue with using it for the entire sleep period (which compliance substantiates).

My AHI numbers have been running 1.5 to 4 with the new RewsMed in APAP, with pressure settings of 10-15 and a ramp-up at 8. I have had on rare occasions, a night of up to 5-6, but it is rare and I write it off as restlessness (AHI is now averaging 3.0 for entire ResMed usage). Isn't an AHI under 5 considered good? If 1.5 - 4 nightly (@ a 95% pressure of +/-11) gives a much better night's sleep than a minimum APAP pressure setting of 12 - I have to question why I would want to have an uncomfortable night's sleep pushing for a lower AHI.
11-10-2013 09:58 AM
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ekim Offline

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Posts: 13
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Machine: ResMed S9 AutoSet
Mask Type: Full face mask
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CPAP Software: ResScan SleepyHead

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Post: #17
RE: resetting ResMed pressure range above 95% pressure
(11-10-2013 05:26 AM)DeepBreathing Wrote:  
(11-08-2013 10:52 AM)ekim Wrote:  As mentioned - I am very interested in how others here handle going against the recommendation of their Sleep disorder doctor, after they've found this website and taken control of their CPAP machine and tweaked it for personal sleep comfort.

I haven't gone against their recommendations but after about the third weekly session I walked in with a bunch of SleepyHead printouts and said "I think we should try this..." She agreed with me and said to adjust things within an agreed range to see what worked best. (Actually nothing worked very well until we changed machines but that's another story).

I think if you demonstrate that you're being responsible, and getting reasonable outcomes, they can't argue. Health care is supposed to be a partnership, and if your therapist doesn't recognise this, it's time to try another one.

I haven't been seeing the Pulmonologist I have now for too long appointment-wise, but to me (and my wife, who's gone with me once) the Pulmonologist comes off like I'm talking to a brick wall - doesn't appear to listen to my side of the conversation at the appointment. Maybe most people utilizing CPAP machines are unaware of how to manage their machines/data and they're somewhat conditioned to deal with that scenario. But if one goes in with specific complaints about sleep quality due to higher recommended pressure, it comes off as uncaring and negative to me to be ignored and not address my concerns. I'm going to request a different Pulmonologist for my next visit in 6mos.

I would like to know how others here approached the subject (with their APNEA medical specialist) of admitting to having knowledge of how to set their machines (and have done it) and possibly have the software to read the actual data off the machine...
(This post was last modified: 11-10-2013 10:36 AM by ekim.)
11-10-2013 10:34 AM
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me50 Offline

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Post: #18
RE: resetting ResMed pressure range above 95% pressure
my first visit with the sleep doc, I took detailed data in from the DME and sleepy head. he said that I needed to ignore sleepy head data and use data from Resmed. Okay, I gave you that information as well.

After my sleep study I discovered he obviously did not listen to anything I told him about my poor sleep quality, how I was utilizing maximum pressure most of the time and was concerned that the machine was not able to do more for me as I was using it at the max pressure. I also told him that I was sleepy during the day and almost always took a nap. He told me that he would order a titration study and if I got to pressure 15 that they would try me on BIPAP. I read an article from AASM and they said that once a person reaches pressure 15, they should be tried on BIPAP. (I am waiting confirmation from AASM to make sure I understood this guideline properly).

Well, that didn't happen. And the tech didn't put the belts on me either. I had requested that I be provided the tech information about what time my pressure was changed during this sleep study and was refused that information.

So, my follow-up appointment with the sleep doctor was worse than the first one (remember he told me in the 1st appointment not to rely on any software but ResScan). This time, I had my report from the DME and also I had printed out the reports from ResScan for dates after I had been at the DME's office up to the day before my follow-up appointment. This time the sleep doctor told me that we can't rely on those reports because we don't know how they gather the information!! I also told him that I knew how to change the pressure settings on my machine.

He still did not listen. I told him, very politely, that if we couldn't rely on the ResScan data, then I needed him to know that my sleep quality is poor and I am most often taking naps during the day and I thought that it is important for him to know this as well as how often I wake up at night.

He didn't care and just stated that we don't know how the machines calculate the data. Well, I don't either but it is all there is to go on other than LISTENING to the patient talk about sleep quality and sleepiness, frequently waking up, etc.

I am looking for a new doctor now. He has been fired.
(This post was last modified: 11-10-2013 11:05 AM by me50.)
11-10-2013 11:03 AM
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ekim Offline

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Post: #19
RE: resetting ResMed pressure range above 95% pressure
(11-10-2013 11:03 AM)me50 Wrote:  my first visit with the sleep doc, I took detailed data in from the DME and sleepy head. he said that I needed to ignore sleepy head data and use data from Resmed. Okay, I gave you that information as well.

After my sleep study I discovered he obviously did not listen to anything I told him about my poor sleep quality, how I was utilizing maximum pressure most of the time and was concerned that the machine was not able to do more for me as I was using it at the max pressure. I also told him that I was sleepy during the day and almost always took a nap. He told me that he would order a titration study and if I got to pressure 15 that they would try me on BIPAP. I read an article from AASM and they said that once a person reaches pressure 15, they should be tried on BIPAP. (I am waiting confirmation from AASM to make sure I understood this guideline properly).

Well, that didn't happen. And the tech didn't put the belts on me either. I had requested that I be provided the tech information about what time my pressure was changed during this sleep study and was refused that information.

So, my follow-up appointment with the sleep doctor was worse than the first one (remember he told me in the 1st appointment not to rely on any software but ResScan). This time, I had my report from the DME and also I had printed out the reports from ResScan for dates after I had been at the DME's office up to the day before my follow-up appointment. This time the sleep doctor told me that we can't rely on those reports because we don't know how they gather the information!! I also told him that I knew how to change the pressure settings on my machine.

He still did not listen. I told him, very politely, that if we couldn't rely on the ResScan data, then I needed him to know that my sleep quality is poor and I am most often taking naps during the day and I thought that it is important for him to know this as well as how often I wake up at night.

He didn't care and just stated that we don't know how the machines calculate the data. Well, I don't either but it is all there is to go on other than LISTENING to the patient talk about sleep quality and sleepiness, frequently waking up, etc.

I am looking for a new doctor now. He has been fired.

Thanks for sharing your experience. Sounds like your brick wall was tougher than mine. As mentioned - I asked for another sleep study as my present symptoms only occur while sleeping at night utilizing my CPAP machine. I wanted someone else to observe them while they are occurring, and help me understand what's causing them. But no, the Pulmonologist pushed me elsewhere. I have been to a cardiologist, an endocrinologist, and will be going to an allergist in the near future (unrelated issue). The bills for the cardiologist and testing alone cost the VA almost $10k (nuclear stress test was almost $6k itself - all came out healthy and no follow-up required).

Still think another sleep study would uncover why my palpitations and leg tremblings are occurring while I sleep, and waking me up. It has significantly diminished - having changed to the ResMed C9 Auto, but haven't completely gone away.
11-10-2013 12:20 PM
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me50 Offline

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Post: #20
RE: resetting ResMed pressure range above 95% pressure
Oh and I forgot to mention that when I asked the sleep study doc about my O2, he ignored that too. So, he was paid to ignore my concerns.
11-10-2013 02:57 PM
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