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New to this - I'm not getting enough air
#1

Hello board. I am new to this. But I'm technical, an engineer with many patents. I have been diagnosed with RLS (Restless Leg Syndrome) which wakes me up with painful arms and legs after as little as 10 minutes sleep. I have developed a hypothesis that this condition is due to oxygen deprivation and my hypothesis has been endorsed by leading physicians in this field.

I've found that if I drowse, partially awake, I do not develop the pain. So, despite my not having apnea, I decided to try CPAP. I purchased a DSX500 DreamStation Auto CPAP and 3 nasal masks (DreamWear, Nuance Pro, Wisp).

The DreamWear was uncomfortably tight and is not adjustable. It gave me a sore nose in 2 hours. During that time pressure went very slowly from 4 to 11 (ramp was not activated). It wasn't until pressure reached about 10 that I felt I was getting enough air.

Next I tried Nuance Pro mask. It's very comfortable. But pressure only rose from 4 to 6, then drifted back down to 4.1 over a one hour session. At no time did I feel I was getting sufficient air.

I am a patient of the Kaiser Permanente system, so I will soon consult with a provider. But I'll bet some of you members know more than providers. So I've joined here, seeking your expertise.

I've already learned from this board how to access the provider menu, so I can program the machine to start higher. But prior to that I'd like to learn more.

Thank you for your help and suggestions
.

Alan
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#2
Hi Alan Adler,
It seems your Apap is set wide open with a minimum of 4 and max setting of 20. Just guessing!

A minimum pressure of 4 is simply too low for most folk. You will feel "air starved".
I would move that up to 7cm and set a max at 15. Give this a few days, and see how you feel.

Download the SleepyHead software and start looking at your data. We can help with that, but look for your 90% pressure reading and also your total AHI number and breakdown of the AHI. Once you have a few days data, we can help you determine a more optimal pressure range based on what we see.

Request the providers menu for your machine.
http://www.apneaboard.com/adjust-cpap-pr...tup-manual

MASKS: Wear the mask that you are most comfortable with. You will also want to monitor your leak rate.

If you mouth breath, that will also show up as leaks. You may need a chin strap.

Good Luck!
OpalRose
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.




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#3
G'day Alan, welcome to Apnea Board.

The fact that the machine is not raising the pressure much seems to indicate that you don't have apnea - it's possibly responding to apnea precursors like snoring or flow limitations. As OpalRose said above, you need to set the machine to start at a higher pressure if you're feeling starved of air.

Have you undergone a full sleep test (polysomnography) to confirm your RLS? If so, this should record apneas and precursors. More importantly in your case it should also record your oxygen saturations throughout the night. If you haven't done this, get hold of a recording oximeter and determine what your saturations are, with and without the CPAP. There are quite a few threads about oximeters here at Apnea Board.
DeepBreathing
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#4
I have a slow heart rate which results in chronic oxygen deprivation after about 1.5 hours. I only have apnea events during REM and NEAR REM. My starting pressure was 8 not to prevent apnea but to increase my oxygen level which it does. After I got used to cpap, I raised the starting pressure to 9 and that helped a lot more.

I personally think that there are multiple causes of RLS. But, it's a good theory to work with, so I'm all for it. Unfortunately, my RLS worsened after 6 months of CPAP. I do not blame the cpap, I blame worsening diabetes. I have my A1C back to where it was 2 years ago using insulin, and the level of RLS has diminished for me.

As to the Dreamwear mask, you either are making it too tight or you don't have the right frame to fit your face. I struggled with the Dreamwear when I first tried it and then went back to my pillows. A couple of months later I tried it again and it went much better.
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#5
Many thanks for your responses thus far. You've confirmed my intent to raise the starting pressure. I'll be happy to post my RLS / Oxygen Hypothesis, if requested to. It's one page long.

Nobody has suggested setting my machine to manual (non-automatic). I presume that if I do that, I can just turn the knob to vary the pressure. If so, that would seem to be an easy way to explore different pressures.

Sincerely yours,
Alan Adler

PS We are not permitted to post clickable links in this forum. But if you search my name in wikipedia or gizmodo, you'll find me there.
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#6
Hi Alan Adler and welcome to the forum! Glad you found us and it sounds like we may be able to learn some things from you also. Good luck getting things fine tuned.
APNEABOARD - A great place to be if you're a hosehead!! Rolleyes

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EVERY ACCOMPLISHMENT BEGINS WITH THE DECISION TO TRY!
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#7
(12-04-2016, 12:21 AM)DeepBreathing Wrote: G'day Alan, welcome to Apnea Board.

The fact that the machine is not raising the pressure much seems to indicate that you don't have apnea
Not necessarily. The amount of pressure needed to maintain an open airway does not necessarily depend on the severity of the OSA. There are people with mild-to-moderate apnea that need a lot of pressure and there are people with moderate-to-severe apnea that need only a small amount of pressure to keep the airway open.

To Alan Adler,

You say that you are in the Kaiser Permanente system. Kaiser usually does a formal test (sometimes in-home, sometimes in the lab) to diagnose OSA, but then often sets people up with an APAP set wide open to do the "titration---i.e. to figure out the appropriate pressure setting for the machine.

Since you are not comfortable breathing at very low pressures, I would suggest setting the minimum pressure on your APAP up to somewhere around 8, 9, or 10---in other words, just barely below where you know you are comfortable breathing with the machine.
Questions about SleepyHead?
See my Guide to SleepyHead
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#8
(12-04-2016, 08:55 AM)robysue Wrote:
(12-04-2016, 12:21 AM)DeepBreathing Wrote: G'day Alan, welcome to Apnea Board.

The fact that the machine is not raising the pressure much seems to indicate that you don't have apnea
Not necessarily. The amount of pressure needed to maintain an open airway does not necessarily depend on the severity of the OSA. There are people with mild-to-moderate apnea that need a lot of pressure and there are people with moderate-to-severe apnea that need only a small amount of pressure to keep the airway open.

Which is why I said is seems to indicate... Perhaps I should have said tends to indicate... Nobody said anything about the amount of pressure needed to maintain an open airway necessarily depending on the severity of the OSA.

And while it's true that a very low pressure may be sufficient to treat apnea this is not generally the case. In Alan's case the pressure is not even getting high enough to overcome his feeling of air starvation - I find it hard to imagine a situation where the pressure is sufficient to overcome an apnea but not being sufficient to breathe.
DeepBreathing
Apnea Board Moderator
www.ApneaBoard.com


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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#9
I think my machine's auto-adjustment up to 11 when wearing the DreamWear mask may have been due to the mask design. The exit slit of that mask can close when it's pressed against my face and block the flow. I experienced that when seeking the proper position of the mask on my face.
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#10
Alan, you machine has a mask resistance setting for Phillips Respironics masks. The DreamWear setting should be on the mask package. I'm thinking it is 1x. Maybe someone can confirm what setting. For non PR masks, set it to 0.
This setting may make a difference in the flow, and be the reason for the difference in pressure.

To answer your question on a manual setting:
If you can determine your 90% pressure, that is a good place to start if you wish to use a straight cpap pressure instead of the auto setting.



OpalRose
Apnea Board Moderator
www.ApneaBoard.com

How to Organize and Post ScreenShots

http://sleep.tnet.com/resources/sleepyhead/shorganize
https://sleep.tnet.com/reference/tips/imgur

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.




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