I feel better without my CPAP

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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zoocrewphoto
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Re: I feel better without my CPAP

Post by zoocrewphoto » Wed Apr 16, 2014 8:52 pm

Can you post the exact model number of your machine and a copy of that report they gave you? It really doesn't sound right. Most people find that a zero for ago is very rare. To have that every night is not likely by any means.

Lots of doctors have been known to lie. Or not even know how to look at the real data.

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Who would have thought it would be this challenging to sleep and breathe at the same time?

Rklindothan
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Re: I feel better without my CPAP

Post by Rklindothan » Wed Apr 16, 2014 9:08 pm

My husband has no reason to lie to me. He is the one who read the study. I will post tomorrow I like to shut down my iPad before I get ready to get sleepy. Thanks for your help.

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zoocrewphoto
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Re: I feel better without my CPAP

Post by zoocrewphoto » Thu Apr 17, 2014 12:50 am

Rklindothan wrote:My husband has no reason to lie to me. He is the one who read the study. I will post tomorrow I like to shut down my iPad before I get ready to get sleepy. Thanks for your help.

Would it hurt to tell us the model number of the machine and post the data?

Right now, the data does NOT make sense to us, and we can't help you without having some idea of what is going on.

For example, is that report from one night or the last couple weeks? Are you really have ZERO apnea events every night? If that is what your data says, I question whether the machine is working properly or whether you really have sleep apnea. Most people do NOT have an ahi of 0 every night.

We simply aren't going to trust the statement that no events are occurring without some kind of data report that says what is going on.

We need to see a report showing a night of graphs and a report showing average ahi over at least a week or more. It would also be very useful to know what machine you have (actual model number), what pressure settings you have, and what your original sleep study stated.

There are lots of things that could be causing problems with your sleep, but we would be wildly guessing without knowing what pressure settings you have and what the actual results are.

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Mask: Quattro™ FX Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Resmed S9 autoset pressure range 11-17
Who would have thought it would be this challenging to sleep and breathe at the same time?

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kaiasgram
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Re: I feel better without my CPAP

Post by kaiasgram » Thu Apr 17, 2014 2:32 am

Rklindothan, I've had an almost similar experience and I know it's possible to have a 'stellar' AHI and zero leak record:

Image

The .1x AHI numbers you see are because once or at most twice each night my machine flags a "clear airway" apnea, usually just before I wake up in the morning -- these may or may not be real apneas, most likely they're sleep-wake transition breathing irregularities. Once in a blue moon I have a hypopnea and once in an even bluer moon I have an obstructive apnea flagged -- I could count the total number of these in the past two years on just my two hands. I believe it has been over a year since I had a single obstructive apnea event.

At two years into therapy I do feel a little better than when I started, but it has been a long road and at the one year mark I could not have said even that much. I wish I had answers for you because I know how discouraging this situation is. I don't have answers for myself, just some educated guesses that I'm working on.

If you hang around and share more we might be able to brainstorm some possibilities. Are you hypersensitive to the sensations involved in using cpap such that you're having a lot of microarousals in addition to the obvious wake-ups? You said your machine is an APAP -- is it running on a range of pressures or a fixed pressure of 7? I ask because some people are sensitive to the pressure changes during the night. I'm also wondering if there are significant flow limitations and RERAs in your PAP data, which would not be reflected in your AHI.

I have a few other questions/thoughts but I'll wait till you've had a chance to post whatever additional info you decide to share with us. Age, pre-existing health issues, sleep hygiene, etc., the list of possibilities is too big for random guessing. I too would be interested in seeing your sleep study report and the machine output data, even though it sounds like it doesn't hold too many telltale clues about what might be going on.

Welcome to the forum.

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Last edited by kaiasgram on Fri Apr 18, 2014 4:22 pm, edited 2 times in total.

Janknitz
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Re: I feel better without my CPAP

Post by Janknitz » Thu Apr 17, 2014 12:17 pm

Rklindothan wrote:Well I'm still trying to update my eg. But just for a little background I'm a Registered Respiratory therapist, recently retired. My husband is a Pulmonologist with 3 certified Sleep Medicine/pulmonologists in his practice. So there are qualified physicians who looked at my last data. The nasal pillows I'm now using have provided me with no leaks even when sleeping on my side. It's true and pretty phenomenal considering everything else I tried leaked when I moved. I just can't sleep unless I'm knocked out on ambien and that's not keeping me asleep through the night. It's been a year and I just want to start feeling like a human being.
The numbers don't tell the whole story. I had great numbers (low AHI, leaks within acceptable range) but was waking and not feeling great. Looking at my graphs, my pressures were up on the ceiling all the time. A little bump in pressure was all that was needed to smooth things out and help me feel better.

Your husband, the pulmonologist, may not have faith in machine data, but a sleep Study or titration is a snapshot of a single night under very unusual circumstances. The machine data is useful for trending and such. Information beyond the AHI (still skeptical about 0.0!) and leak rate is useful. As a spouse of a pulmonologist/respiratory therapist you might have access to a recording oximeter which might show you what might be happening at night before you wake.
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robysue
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Re: I feel better without my CPAP

Post by robysue » Fri Apr 18, 2014 3:48 pm

Rklindothan wrote:My husband has no reason to lie to me. He is the one who read the study. I will post tomorrow I like to shut down my iPad before I get ready to get sleepy. Thanks for your help.
Rklindothan,

The machine you have chosen for your profile is the PR System One REMStar 60 Series SE CPAP Machine. The SE records NOTHING except usage data. And I mean NOTHING: No leak data, no AHI data. Nada. Zip. Nothing except How Long You Used The Machine.

I have no idea why your hubby would say that this machine records efficacy data. Maybe he doesn't know the specs for your machine. But the fact remains that if you have chosen the correct machine in your profile, then nobody, including hubby, has any idea of what your leaks and AHI actually look like when using this machine.

In the PR family, the lowest end machine that DOES record efficacy data is the PR System One REMStar 60 Series PRO CPAP Machine (model 460).

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chunkyfrog
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Re: I feel better without my CPAP

Post by chunkyfrog » Fri Apr 18, 2014 7:53 pm

---Sadly, even the shoemaker's children may go barefoot. So the pulmonologist's wife gets a brick.
Sad, but not impossible. Sadder still, because it shows the educational gaps are even greater than we feared.
I'm afraid I'm going to have to go punch some pillows until I calm down.

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avi123
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Re: I feel better without my CPAP

Post by avi123 » Fri Apr 18, 2014 8:11 pm

I been taking 5 mg Zolpidem (generic Ambien), nightly, since I started CPAP 3 years ago. If I don't fall asleep within 30 min afterwards I then take another 5 mg in addition. But this happens rarely. Al these let me sleep for 6.5 to 7 hours with two nocturia wakeups. Recently, I have discovered that if I go to sleep let's say at midnight I than can take off the mask, at 3 to 4 a.m. and sleep without it for the rest of the night. But I prefer to sleep without the mask for no more than 3 hours and then put it back on, especially if the time was before 6 a.m. I have no ill affects doing so. With this approach I don't need any emergency power supply b/c I can go a couple of nights without using the CPAP at all. But I would hate to try power stoppages that last longer.

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robysue
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Re: I feel better without my CPAP

Post by robysue » Fri Apr 18, 2014 8:56 pm

chunkyfrog wrote:---Sadly, even the shoemaker's children may go barefoot. So the pulmonologist's wife gets a brick.
Sad, but not impossible. Sadder still, because it shows the educational gaps are even greater than we feared.
I'm afraid I'm going to have to go punch some pillows until I calm down.
I know how you feel chunkyfrog. I really did NOT want to write my post. But the profile is showing an SE. I'm hoping she's just another newbie who picked the wrong machine---but she did chose TEXT not ICON, so presumably she checked the model name.

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Wulfman...

Re: I feel better without my CPAP

Post by Wulfman... » Fri Apr 18, 2014 9:47 pm

Rkl wrote:I'm using Remstar auto, humidifier, FX Nano Nasal Pillows and pressure of 7. Had my chip analyzed and perfection except I'm not getting any sleep. No leg movements detected during sleep study. My Dr. tried me on Trazadone to help me sleep, but no matter how low the dose felt like a zombie the next day. Anyone else out there experiencing headaches? I've adjusted my humidifier up and down and have even removed it. Still headache every morning .
The plot thickens........the mystery deepens........

Is it really the Auto or is it the SE?

Stay tuned for our next cliffhanger episode and keep your Little Orphan Annie decoders handy for clues.


Den

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Wulfman...

Re: I feel better without my CPAP

Post by Wulfman... » Fri Apr 18, 2014 9:54 pm

And, be sure to drink your Ovaltine.


Den

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cflame1
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Re: I feel better without my CPAP

Post by cflame1 » Sun Apr 20, 2014 2:32 pm

And you like that stuff Den? Hot chocolate or chi tea for me thank you

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Lukie
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Re: I feel better without my CPAP

Post by Lukie » Sun Apr 20, 2014 3:44 pm

I'm surprised that you both are so well educated medically and have a brick of a machine and think you can go without your machine for any length of time without consequences. You may well know a CPAP machine is just a splint to allow your body to get enough oxygen during the night if you have been diagnosed with sleep apnea.
CPAP will not cure depression, insomnia or make all your troubles and fatigue etc go away. People have such high expectations for CPAP but the reality is it is there to protect your brain and heart etc from further damage. You may not feel better but isn't your current miserable state better than a stroke, heart attack, or dementia? I was foolish and did not get my Mild sleep apnea treated for many years and now have sleep apnea related heart rhythm problems.

Lukie
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Re: I feel better without my CPAP

Post by Lukie » Sun Apr 20, 2014 3:47 pm

Also, you might try 10 mg of Doxepin, a tricyclic antidepressant that is used for induction of and maintenance of sleep. It works really well for me.

Wulfman...

Re: I feel better without my CPAP

Post by Wulfman... » Sun Apr 20, 2014 5:16 pm

Lukie wrote:I'm surprised that you both are so well educated medically and have a brick of a machine and think you can go without your machine for any length of time without consequences. You may well know a CPAP machine is just a splint to allow your body to get enough oxygen during the night if you have been diagnosed with sleep apnea.
CPAP will not cure depression, insomnia or make all your troubles and fatigue etc go away. People have such high expectations for CPAP but the reality is it is there to protect your brain and heart etc from further damage. You may not feel better but isn't your current miserable state better than a stroke, heart attack, or dementia? I was foolish and did not get my Mild sleep apnea treated for many years and now have sleep apnea related heart rhythm problems.
Actually, in many cases "depression" can be caused by poor sleep, sleep/oxygen deprivation or sleep apnea. Many of the people posting on this forum have told stories of being treated for depression before finally having a sleep study (and discovering they had OSA).
And, "fatigue" usually goes away at some point after (successful) therapy is started.


Den

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