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Pressures higher than titration damaging to my lungs?
#1
Question 
I had a follow up with my sleep doc yesterday. I admit that I was already less than happy with her following my initial follow up with her. Her comment that I shouldn't be checking my data shocked me, but I dutifully scheduled my next appointment as I paid for that visit. Wrote it into my medical calendar at the window so I wouldn't forget to do so later.

The doc didn't show up for that appointment. I was able to reschedule my appointment for yesterday about six weeks after her vacation. During the weeks just prior to the "missed" appointment I had been working on self titrating with my autoset trying to improve my sleep. With the help of several of you here I have been using the Auto mode with pressures set from 11-14 and EPR set at 2. This has been working great for me.

The doc on the other hand is very upset that I dared to change the settings, and that I am using pressures "that are way to high" for my tritrated pressure of 6 (which she previously reluctantly allowed to be raised to 7 since her sleep tech did that). I was told yesterday that I am going to damage my lungs by using using pressures so much higher than my tritrated pressure. Has anyone heard of that happening? I have done a lot of reading since being diagnosed here and elsewhere, but I do not remember any such claim in anything I have read.

So any thoughts on this?
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#2
(11-07-2014, 04:12 PM)SleepyDreamCatcher Wrote: So any thoughts on this?

Have you got some kind of lung disease?

Many people use pressures up to 20, or even 25 with a bilevel machine with no lung damage. Why can they get away with it when you can't? If the titration came back saying you need 20 cmH2O pressure, would she say not to use it ?

Get a drinking glass and a straw. Fill the glass with 20 cm of water. (8 inches for those of us in the uncivilized world.) Put the straw in the water and very gently blow air bubbles into the water at the bottom of the glass. That's how much pressure the CPAP creates at 20 cmH2O of pressure. If that much pressure hurts your lungs, what's going to happen when you sneeze or blow up a balloon?

[Image: auntmargemovie.jpg]

However, you can mess up your therapy by tinkering with your settings. If the pressure is wrong, it doesn't matter whether it's the doctor or you who set it wrong. You can also cause central apnea and make your apnea worse by increasing the pressure.
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If it's midnight and a DME tells you it's dark outside, go and check it yourself.
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#3
(11-07-2014, 04:12 PM)SleepyDreamCatcher Wrote: . . .
I had a follow up with my sleep doc yesterday. I admit that I was already less than happy with her following my initial follow up with her. Her comment that I shouldn't be checking my data shocked me, but I dutifully scheduled my next appointment . . .
. . .
During the weeks just prior to the "missed" appointment I had been working on self titrating with my autoset trying to improve my sleep. With the help of several of you here I have been using the Auto mode with pressures set from 11-14 and EPR set at 2. This has been working great for me.

The doc on the other hand is very upset that I dared to change the settings, and that I am using pressures "that are way to high" for my tritrated pressure of 6 (which she previously reluctantly allowed to be raised to 7 since her sleep tech did that). I was told yesterday that I am going to damage my lungs by using using pressures so much higher than my tritrated pressure. Has anyone heard of that happening? I have done a lot of reading since being diagnosed here and elsewhere, but I do not remember any such claim in anything I have read.

So any thoughts on this?

Hi SleepyDreamCatcher,
If the claim of lung damage were really true, it seems to me that there would be many lawsuits filed against ResMed, Phillips, and any other manufacturer of CPAP equipment capable of delivering pressure in the range you have been using.

I think this Doc is using scare tactics to frighten you away from what she views as her "turf", and nothing more. She may be intimidated at the thought of patients checking their own data. I would look for another Doc.

Good Luck.
A.Becker
PAPing in NE Ohio, with a pack of Cairn terriers
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#4
(11-07-2014, 04:56 PM)archangle Wrote:
(11-07-2014, 04:12 PM)SleepyDreamCatcher Wrote: So any thoughts on this?

Have you got some kind of lung disease?

Many people use pressures up to 20, or even 25 with a bilevel machine with no lung damage. Why can they get away with it when you can't? If the titration came back saying you need 20 cmH2O pressure, would she say not to use it ?

Get a drinking glass and a straw. Fill the glass with 20 cm of water. (8 inches for those of us in the uncivilized world.) Put the straw in the water and very gently blow air bubbles into the water at the bottom of the glass. That's how much pressure the CPAP creates at 20 cmH2O of pressure. If that much pressure hurts your lungs, what's going to happen when you sneeze or blow up a balloon?

However, you can mess up your therapy by tinkering with your settings. If the pressure is wrong, it doesn't matter whether it's the doctor or you who set it wrong. You can also cause central apnea and make your apnea worse by increasing the pressure.

No, I don't have any lung disease. My AHI is generally 0.0. I have had a few central apneas since starting therapy, but these are generally while I'm awake, or waking up.

Prior to switching to auto mode AHI was: June: 0.44, July: 0.27, Aug: 0.22

Started adjusting pressures to improve how I felt and to decrease snoring 8-18-14, settled on current settings 9-8-14.
SEPTEMBER: AHI: 0.05
Obstructive: 0.02
Hypo: 0.02
Clear Airway:0.02
OCTOBER : AHI: 0.09
Obstructive: 0.02
Hypo: 0.02
Clear Airway: 0.03
NOVEMBER: AHI: 0.00
Obstructive: 0.00
Hypo: 0.00
Clear Airway: 0.00

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#5
(11-07-2014, 05:27 PM)becker44a Wrote: Hi SleepyDreamCatcher,
If the claim of lung damage were really true, it seems to me that there would be many lawsuits filed against ResMed, Phillips, and any other manufacturer of CPAP equipment capable of delivering pressure in the range you have been using.

I think this Doc is using scare tactics to frighten you away from what she views as her "turf", and nothing more. She may be intimidated at the thought of patients checking their own data. I would look for another Doc.

Good Luck.

That is what I thought too, but I figured that it wouldn't hurt to ask. I see my PCP later this month and wii be talking to her about other options in the area.

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#6
(11-07-2014, 06:08 PM)SleepyDreamCatcher Wrote: . . .
Prior to switching to auto mode AHI was: June: 0.44, July: 0.27, Aug: 0.22

Started adjusting pressures to improve how I felt and to decrease snoring 8-18-14, settled on current settings 9-8-14.
SEPTEMBER: AHI: 0.05
Obstructive: 0.02
Hypo: 0.02
Clear Airway:0.02
OCTOBER : AHI: 0.09
Obstructive: 0.02
Hypo: 0.02
Clear Airway: 0.03
NOVEMBER: AHI: 0.00
Obstructive: 0.00
Hypo: 0.00
Clear Airway: 0.00

Hi Sleepy,
Those are GREAT looking numbers! If you are feeling better also, I would call it a Job Well Done. Just my 2cents.
A.Becker
PAPing in NE Ohio, with a pack of Cairn terriers
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#7
My suggestion would be to set the pressure range from 5 to 15 and let the machine, since it is an Auto type, titrate itself - it is pretty good at finding the correct range for you. I think your set range may be too narrow in that respect. Other than that, it seems fine. And no, unless you have a lung problem already, the worst you can do at those pressures in give yourself a form of mild asthma that CPAPers sometimes get (and it resolves itself upon stopping treatment). So, don't worry about that. But I am pretty sure your doc felt the toes were tread on, and that is never a nice feeling. Your numbers are what counts, unless there are other factors I am not aware of, and you have not given your full history here, so based on what you have shown us, I would suggest you present your doc with a before and after picture - the readings at the original setting and the readings since then. There may be an insurance issue of non-compliance if you messed with the settings that early on in the treatment procedure, but I cannot be sure.
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#8
SleepyDreamCatcher, You have at least three options:

1. Pay her lip service and then do as you think is best based on your own research.

2. Educate her as to the basics of CPAP treatment and the potential for any dangers it presents as well as the safety record it has.

3. Ditch her and fine a doctor well versed in CPAP that is reliable at keeping appointments and reasonably available.

IMHO, I would do option #2 and then immediately thereafter do option #3. You followed her advice and it didn't work and to top it off, she wasn't available as scheduled and needed. The only "No show" fee you can charge her is to not give her the opportunity to do any further disservice to you.

One important thing to keep in mind is that your doctor is basing her advice on a single night's sleep study as versus your ability to monitor several nights using the software that you have.

Unless you're mentally challenged, I'd put more stock in your analysis (and the competent advice you've gotten here) than the doctor's. It likely won't do any good for you to explain that to her - if she's ignorant of these facts, she may not be capable of understanding the explanation.

If she has ulterior motives, such as protecting her income stream, she won't be receptive of any explanation. That'll be the surest tip off to find a better doctor.

Bottom line: Do what you think is best since you're the best judge of how CPAP is working. This isn't rocket science and it isn't dangerous. I have never heard of a single case of CPAP lung damage or of any other bodily organ being damaged by using a CPAP machine with any setting whatsoever.

The biggest danger is to not use CPAP when it is indicated and recommended or using it at a level insufficient to provide the necessary therapy.

EDIT: I just read your post that you made while I was typing. It looks like you were getting excellent AHI results with the doctor's initial settings:

"Prior to switching to auto mode AHI was: June: 0.44, July: 0.27, Aug: 0.22"

Those are excellent numbers!

Perhaps she deserves more credit than she has been given. If you agree, then give her a chance to look over the results you have achieved and see if she agrees that you are doing a great job of shepherding your own treatment although it wasn't all that necessary. Giving her some credit, it is admirable that she is concerned that you may be setting the pressure higher than necessary and perhaps making the therapy more uncomfortable than need be. You may save the relationship yet but the "No Show" is still bothersome and the scare tactic of lung damage was perhaps a bit over the top.
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#9
Quite seriously, years ago after I had my tonsils removed on ENT advice, my CPAP pressure of 10 suddenly seemed to be inflating my lungs like a damn balloon. It was horrible.

You armchair "experts" may say no damage is done but I disagree.

I had to schedule an urgent appointment to get a revised script with a pressure of 8 then take it with the machine to a clinician for adjustment.
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#10
If pressure above 14 will damage lungs then I need to sue my sleep doc. My original titration by him and the lab was 6 to 15.

Now its 8 to 18 though have no ideal why the upper pressure was raised since it didnt need to be.
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