Opinions about self treating sleep apnea please.

[munkyBeatz]

The most important thing that I want every patient to understand with these PAP devices, is the AHI that is recorded and shown on the software is ONLY a Residual AHI. The machine will count events based on flow-reduction alone, plus the AHI is averaged using the entire period the machine was on per night. A true AHI/RDI can only be defined with EEG's in place to denote the actual total sleep time. The AHI that the machine gives only serves to give a clinician an idea/range of about how effective the current therapy is. A new research paper published in the AASM clinicians magazine, shows that a patients therapy should only be adjusted if the residual AHI is >10/hr. This is because the PAP device doesn't know when you're asleep, it records reductions in airflow that occur when a patient moves and is awake and uses the entire time the machine was on rather than sleep time, and even those events that were during sleep can be inaccurately marked by software.

Machines Residual AHI is calculated: [Apneas + Hypopneas / Time Used]
Actual AHI is calculated: [Apneas + Hypopneas / Mins Sleep Time x 60]

I have been scoring studies on a daily basis for last 5yrs, and have seen just how different the auto-scoring software works. This is used by all the software available to get information from PAP devices. There are huge differences between what the software/device sees and what a trained/registered technician/physician sees. This is because events rarely fall specifically into the lines of the AASM definitions and can only accurately be marked by a technician/physician. For one example in specific, I just scored a study yesterday and got an AHI of 15.2/hr [Moderate OSA], yet the software came up with an AHI of 29.4/hr [Severe OSA]. This is because the computer scores events based on per item, wheras you have to mark events while looking at all the other channels [Arousals/Limb Movements/Etc.]

From many of the post I've read on this forum, seeing that many patients believe clinicians/physicians/DME are just trying to keep them out of the process and make more money, I as any RPSGT would be, am a bit disturbed by this. The reason is that after 6years of performing PSG testing, I've seen all to many times the difference 1-2cm in pressure can impact a patient. There is a reason for the 27-30 electrodes that are placed on patients during testing, that is because you literally need everyone to make an accurate/complete assesment and treatment of a patient. I hate that many people have poor experiences with some labs/DME, but those poor experiences are not indicative of the overall field.

[kerriberri]

Yeah

I got my SP02 working. I had some old drivers for the USB port that I had to uninstall. Uninstalled all of the drivers, started over installing SP Assistant 2.2. Followed your sequence and everything is working.

Thanks.

Yay for you; interested to hear how you do & what you finally decide for your proper pressures. Gotta love technology : )

Who'd think it could help you save your own life?

[munkyBeatz]

This is why I train with a pulse oximeter to find the lowest heart rate controling breathing.

Your respiratory rate generally does not have as much of an impact in regards to straight obstructive apnea patients as one might think. Also, respiratory rate [hyperventilation/hypo] vary from person to person, and the “norm” of 12bpm is not the “norm” when PAP therapy is introduced as many people have different responses and it changes following 3-6mos of usage. OSA is concentrated to partial/full "Obstructions" in the upper airway, with the palette falling back and reducing the opening available to breathe the airway. This is why OSA is more prevalent in patients whom are overweight/obese, as they generally have very large neck circumferences and their airway ends up being quite colluded.

On a semi-related subject, but just good knowledge to know. Your respiratory drive isn't controlled by the amount [or lack thereof] oxygen, it's actually the opposite. Your bodies respiratory drive is controlled by it's "CO2 Monitoring System" where as chemoreceptors in the base of the brain stem control breathing based on the amount of CO2 in your system. So, really you breathe to control the amount of CO2 in your system, not O2. Patients whom exhibit central sleep apnea, without PAP therapy, usually have some central nervous issue that throws their CO2 chemoreceptor levels off. So, their bodies just say "stop breathing" for a given time.

It is also why I:
Do what I can to reduce stress and consider this critical.
Do aerobic exercise with interval training and some resistance training. I am currently running above 70% of my 10,000 steps per day for example.
Eat well and make sure I get my antioxidant and anti-inflammitory foods
Often go to sleep using the pulse oximeter as described above

Ok, everything you mention here is good practice to lose weight, in turn leading to decreased OSA severity through decreasing neck circumference which will reduce collusion present in the airway in over-weight/obese OSA patients.

[JohnO]

The most important thing that I want every patient to understand with these PAP devices, is the AHI that is recorded and shown on the software is ONLY a Residual AHI.

There is a reason for the 27-30 electrodes that are placed on patients during testing, that is because you literally need everyone to make an accurate/complete assesment and treatment of a patient.

Good Stuff. Thanks for adding the perspective of someone so familiar with the sleep study process.

[Todzo]

My background, to show I know what I'm talking about, includes 6.5yrs experience as a Registered Polysomnographic Technician and am currently the Technical Director of Operations for a sleep lab in the DFW area of Texas.

If Mr President still has the above results, then it might indicate an Upper Airway Resistance syndrome (UARs). This is b/c of the hi Snore and the much higher RDI than the AHI, and Mr President's complains of "suffocation" with a pressure of 12 cm in CPAP or APAP. If it is correct then read this about it:

I saw that you updated your repsonse after Mr. President posted the home sleep test, but felt this information is good for everyone to know for future reference.

If we were to base a diagnoses purely off the information provided by MrPresidents' PAP device, the readings are not indicative of UARS. As, the patient shows a residual AHI of 25/hr and an RDI of 38/hr. This patient is/would be defined as an OSA patient, with primarily obstructive hypopneas and RERAs.

To keep it simple, UARS is repetitive limitations in flow without being accompanied with SaO2 desaturations in oxygen levels via pulse-ox, AND are not immediatley followed by an arousal. UARS are not included any either the AHI or RDI calculations. This is due to the fact that if an arousal immediately follows a flow limitation and doesn't have a desaturation in O2, then it is defined as a RERA [Respiratory Effort Related Arousal]. UARS cannot be defined/diagnosed from the data downloaded from a PAP device, as the device/software use the strict definitions in place by the American Academy of Sleep Medicine. [e.g. 50% reduction in flow for 2 or more breaths = Hypopnea] However, the true standard/definition to define a hypopnea is [>50% reduction in flow accompanied with 3% desaturation || or Alternative >30% reduction in flow accompanied with >4% desaturation.] But, the software that is available today is by no means accurate in it's counting/marking events, and it takes a trained Registered technician to review data to make an accurate assesment. Software that scores [marks] events, usually ends up with very different AHI than a trained technician and physician.

Hi munkyBeatz,

There is a good current article about this at: http://www.ncbi.nlm.nih.gov/pubmed/22377755

But perhaps you can answer another question:

If I sit at my desk with any of my pulse oximeters on my finger or wrist and then simply exhale gently and stop breathing for thirty seconds - within the thirty and also looking at the thirty seconds beyond - the SpO2 reading, if it does change, will only change by a percent or two. This is perhaps why the world record for under water breath holding is currently 22 minutes and 22 seconds. Yet, if I look back at some SpO2 data I took without CPAP I see a drop in SpO2 of 5% in fifteen seconds! Indeed, almost written into the definition of a Hypopnea is "4% in ten seconds". How is this possible. Why do those with OSA desaturate so quickly?

Thanks!

Todzo

[chunkyfrog]

Please note:
"pallette" refers to color selection or a paint tray used by an artist.
"palate" is in the upper rear of the roof of the mouth.
Beware the evil spell check--it will make anyone look like an idiot.

[Todzo]

This is why I train with a pulse oximeter to find the lowest heart rate controling breathing.

Your respiratory rate generally does not have as much of an impact in regards to straight obstructive apnea patients as one might think. Also, respiratory rate [hyperventilation/hypo] vary from person to person, and the “norm” of 12bpm is not the “norm” when PAP therapy is introduced as many people have different responses and it changes following 3-6mos of usage. OSA is concentrated to partial/full "Obstructions" in the upper airway, with the palette falling back and reducing the opening available to breathe the airway. This is why OSA is more prevalent in patients whom are overweight/obese, as they generally have very large neck circumferences and their airway ends up being quite colluded.

On a semi-related subject, but just good knowledge to know. Your respiratory drive isn't controlled by the amount [or lack thereof] oxygen, it's actually the opposite. Your bodies respiratory drive is controlled by it's "CO2 Monitoring System" where as chemoreceptors in the base of the brain stem control breathing based on the amount of CO2 in your system. So, really you breathe to control the amount of CO2 in your system, not O2. Patients whom exhibit central sleep apnea, without PAP therapy, usually have some central nervous issue that throws their CO2 chemoreceptor levels off. So, their bodies just say "stop breathing" for a given time.

It is also why I:
Do what I can to reduce stress and consider this critical.
Do aerobic exercise with interval training and some resistance training. I am currently running above 70% of my 10,000 steps per day for example.
Eat well and make sure I get my antioxidant and anti-inflammitory foods
Often go to sleep using the pulse oximeter as described above

Ok, everything you mention here is good practice to lose weight, in turn leading to decreased OSA severity through decreasing neck circumference which will reduce collusion present in the airway in over-weight/obese OSA patients.

Hi munkyBeatz,

I think you would find a PubMed search on the following terms useful:

Sleep Apnea CO2 reserve
Sleep Apnea Ventilatory Instability
Sleep Apnea Dead Space
O2 sensing carotid body

If you looked at what I was saying about using a pulse oximeter I am using the pulse rate to find the breathing rate (think minute volume - I care little and think little about BPM I want to find the place where SpO2 is reasonable and apparently circulation also since the heart is not trying to make up for too much or too little O2 or CO2).

I have come to believe that many with OSA have messed up chemoreflexes tending toward a hypocapnic state. Perhaps my approach is novel but I have had good results in only 10 months (I would expect breathing training to be like learning to play an insturment - to take a long time) and so I share.

Have a great week!

Todzo

[DoriC]

I've seen all to many times the difference 1-2cm in pressure can impact a patient. .

Welcome Munk and thank you, it's very valuable to us to have your input. Can you expand on the above comment a bit more so I can understand what impact these small differences in pressure can have, good and bad? We will look forward to your posts but please be gentle, some techs who have been here tend to get a bit "preachy" with us rather than educate and that can sometimes start the "fireworks". The wonderful folks on this forum are the ones living with this disorder and it's complicated treatment and some are still struggling and in many cases have been abandoned by the medical community so we depend very much on each other and the "experts" here. Thanks.

[MrPresident]

munkyBeatz

First I want to thank you for taking the time to give your input. It is obvious you have a lot of concern that the folks here not go off in the wrong direction or give/get bad advice.

A little background. I can not get insurance coverage for SA until December (my fault/long story). After that I get insurance I will get a real sleep study for all the reasons you state below. However I feel confident that I am better off self treating than doing nothing. I did have a sleep study but with a home study device that goes over your forehead. Somewhere between Sleepyhead Data and 27-30 electrodes. But the important thing to me is that I see real health benefits. I am no longer falling asleep during the day, I am losing weight, BP if dropping gradually and so on. I feel better. 2 nights ago I just fell asleep before I put my mask on and slept all night without APAP. That is when I really noticed the difference. I felt awful. BTW when sleeping without APAP I seldom notice waking up, I just feel the effects the next day.

But the most significant is that I have been battling diverticulitis for years. Sometimes pretty severe sometime just an annoyance. I was diagnosed (via an overnight pulsox with low O readings and then the at home sleep study) with SA by my cardiologist and recommended to get a full sleep study. I was going to wait until my new insurance plan kicked in. Then I had a bad session with the diverticulitis. My wife (an RN) suggested to my Fam Prac doc that maybe the diverticulitis would not heal because of the low O at night. The a pain was always worse at night but I thought it was because laying down put pressure on the infected area. But really it was the low O at night that aggravated the diverticulitis. Now that I am using the APAP the diverticulitis pain is 100% gone for the first time in about 5 years.

My point is that I agree with everything you say about getting a thorough workup performed by professionals. But I know I am better off doing what I am doing than doing nothing.

That is why I am self treating.

The most important thing that I want every patient to understand with these PAP devices, is the AHI that is recorded and shown on the software is ONLY a Residual AHI. The machine will count events based on flow-reduction alone, plus the AHI is averaged using the entire period the machine was on per night. A true AHI/RDI can only be defined with EEG's in place to denote the actual total sleep time. The AHI that the machine gives only serves to give a clinician an idea/range of about how effective the current therapy is. A new research paper published in the AASM clinicians magazine, shows that a patients therapy should only be adjusted if the residual AHI is >10/hr. This is because the PAP device doesn't know when you're asleep, it records reductions in airflow that occur when a patient moves and is awake and uses the entire time the machine was on rather than sleep time, and even those events that were during sleep can be inaccurately marked by software.

That is an excellent point. I did figure out pretty quickly that some of my events as reported by the S9 were occurring when I was awake. Not because the machine knows when I am awake but because I do. Since I am able to keep my AHI down pretty low I tend to focus more on the getting long stretches with no events and ignore the clumps of events that occur right before or after sleep. Sometimes if I adjust my mask of cough into my mask or do anything unusual I take a look at the clock for reference when looking at my data.

From many of the post I've read on this forum, seeing that many patients believe clinicians/physicians/DME are just trying to keep them out of the process and make more money, I as any RPSGT would be, am a bit disturbed by this. The reason is that after 6years of performing PSG testing, I've seen all to many times the difference 1-2cm in pressure can impact a patient. There is a reason for the 27-30 electrodes that are placed on patients during testing, that is because you literally need everyone to make an accurate/complete assesment and treatment of a patient. I hate that many people have poor experiences with some labs/DME, but those poor experiences are not indicative of the overall field.

There are people who lack integrity in any people group you can think up. SA clinicians are no exception, but neither are people who have SA, or people on this thread (there is another thread right now that proves this to be true), or Doctors or auto mechanics, baseball players or lawyers.....OK lawyers may be in a category of their own, but I digress. I also think that it is human nature to talk about the bad apples more than the sweet ones. And on this forum it is the problems we discuss more than the success because we are seeking relief from our problems. To be fair to the forum and to offer a little encouragement to you, I have heard some stories of success with clinicians, physicians, DMEs. Also I have been warned to get professional help as soon as I can get coverage and to very careful when interpreting machine data myself. I have also been told many times to make small adjustments to creep up on the sweet spot of pressures. I honestly think that most of the folks here view this as a partnership between our own instinct (because we know our own condition intuitively), the clinician and the resource of this forum.

In short, I don't think most of us view guys like you as the "bad guys". We appreciate what you do for us.

Thanks again for your input, advice and yes, even your warnings.

[MrPresident]

Based on some input here I decided to lower my max pressure some. The higher pressure usually wakes me up as does too low of pressure. So last night I was set at 8 - 11. I slept almost 9 hours with pretty good AHI numbers and I feel like superman this morning.

But......

My pressures are pegged against the max pressure of 11 most of the night. Is that a problem considering that I had such good success?

[Pugsy]

My pressures are pegged against the max pressure of 11 most of the night. Is that a problem considering that I had such good success?

I would count it as a success and leave it there....especially if I felt like superman.
There is no law that says we have to not have the max pressure line flat line at times during the night. It's obvious that no real events got past it and maybe the pressure was being driven up by a snore or flow limitation. Something minor that didn't grow into anything major and heck, maybe all it would have needed would have been 11.2 anyway.
Sometimes is it okay (and probably a better idea) to just simply make a compromise.
If the higher pressure is disturbing or the pressure variations disturb you...then by all means limit it.

If you were using straight cpap....that is a compromise also. You pick the best idea and go with it. Sometimes it might have needed a little higher pressures but we don't have a crystal ball to look at each night to see if we need 13 cm tonight for maybe 10 minutes...or if we are going to have a night where we barely reach 10..
Tis no different using APAP mode with limited ranges.
If the higher pressures disturb sleep or the pressure changes disturb sleep or if aerophagia happens to rear its ugly head above a certain pressure....then it is perfectly okay to compromise and limit the range. It's not like we are expecting to have a 0.0 AHI anyway. Yeah, some people get them but most of us don't and couldn't even if we used 20 cm straight cpap all the night.

[DoriC]

Looks very good! I'm glad you narrowed the range as you seemed to have very few disturbances at that setting. You may or may not need to tweak a bit more down the road but for now I'd leave it as is and accumulate some real data to establish a trend. We don't sleep the same very night and shouldn't be changing things based on only one or two nights. I've gotten impatient and made that mistake more than once and just got myself confused and had to start all over again. Good for you Clark Kent!

[Todzo]

Based on some input here I decided to lower my max pressure some. The higher pressure usually wakes me up as does too low of pressure. So last night I was set at 8 - 11. I slept almost 9 hours with pretty good AHI numbers and I feel like superman this morning.

But......

My pressures are pegged against the max pressure of 11 most of the night. Is that a problem considering that I had such good success?

Hi again MrPresident!

I think you and your machine are getting along well at this time. Note your minute volumes - your average is probably ok considering your size, the 95% not much up from that shows good stability and the max being so little above that is super. I think you slept well indeed.

But, this is one night - and a good night changes your body in the opposite direction from a bad one. Your body is changing so you need to keep an eye on this. I am still adjusting my own settings and I make it a habit to make no changes for at least two weeks after a reasonable setting is found. I never expect such super good results as you had this night to be what will be in the data tomorrow.

You did apparently awaken twice with event preceeding - if you drag across that time you can see a closeup of the flow data and get a sense of what happened ("reset" by dragging across the entire top chart). I would look at those points carefully.

When I started the process of changing my settings I tried Auto-PAP once - a four hour trial. The machine noticed that I was snoring and raised the pressure when I did so. For me that does not work and CPAP at the lower setting did. I have reduced the setting 2 cm in two steps (several weeks apart) since. All changes have resulted in less AHI and better breathing stability - and I feel better.

If I were you I would use the extra energy to work on a spot of exercise of some enjoyable sort (I am going exploring today) and some good food domestic stuff (I am going shoping today). Good stuff in, good stuff out!

Go for it MrPresident, indeed!

Todzo

[2kittymom]

To get to all the goodies you need the 'open sesame' password:

http://www.apneaboard.com/adjust-cpap-p ... tup-manual

It's not the best laid out site but come back here and ask if you have questions. Good luck.

I just came across this post, and must say thank you for the link to the apnea board website. Wish I'd have known about it even sooner, but glad I have it now. It has a lot of very useful info, and good videos.

I had one sleep study done, July 2nd. I did not sleep very long at all. I was then diagnosed with severe sleep apnea, and 2 weeks later was given the CPAP machine, which was pre-set to everything. I have a constant pressure of 11. Now granted this has worked out well, as the numbers are great. However, in reading this thread, someone mentioned the fact that the medical people make their decisions on one study that perhaps could have variables if more than one was done.

My big question is whether or not I should put my machine in the Auto set mode, and see whether or not I need the full 11 pressure. I'm curious as to why the clinician didn't do this.

What is your advice? I doubt I'd need pressure over 11, since my AHI has always been less than 1, but perhaps I don't need it that high? Thanks!
Lori

[Pugsy]

My big question is whether or not I should put my machine in the Auto set mode, and see whether or not I need the full 11 pressure. I'm curious as to why the clinician didn't do this.

The people at the DME office are bound to honor the doctor's order. He likely wrote "cpap machine and 11 cm pressure". They aren't allowed to change it without an okay from the doctor. They can't even use 10.8 minimum and 11.2 maximum in APAP mode.

If you want to try APAP mode without consulting the DME and getting the doctor's blessing...you are free to do whatever you wish. Anyone can figure out how to change their pressure if they want to. You are an adult and as an adult free to make your own choices. Just make sure that they are well thought out choices.

If you wish to satisfy a curiosity itch..then scratch it. I wouldn't suggest going all wild and crazy though.
Your body is adjusted to cpap at 11 cm and I can tell you that when you change things your body will recognize it as a change and not something you are used to and that always bears the risk of the change affecting your sleep an ultimately how you feel. Make sure you understand what you are doing and what to expect.
I wouldn't drop down the minimum to the lowest for sure. You likely will feel like you are suffocating since you are used to 11 cm. A modest semi tight range would be less potentially disruptive and allow you to see how things are wanting go. The standard 2 cm above and below is a modest range and a good place to start. You will be surprised at how much difference a minor change from the minimum will make. When I used APAP I used 10 cm minimum and 20 cm maximum ( I sometimes needed 18 or so and the changes never disturbed my sleep) but when I experimented with 9 cm minimum my AHI doubled. Wasn't horrible but I had some unwanted clusters at 9 cm minimum that rarely every happened at 10 cm minimum. I also experimented with the minimum up to 13 cm. Spent a week at each 0.5 increase...never saw any significant change in AHI or how I felt. So I went back to 10 cm and the first night back at 10 cm after using 13 for a week I was definitely uncomfortable..it took a couple of nights to adjust back to the 10 cm which seemed rather "stifling" after a week at 13.

Even now after all this time if I tried to use a lower pressure I would feel like I was suffocating and be uncomfortable for a few nights. When we are uncomfortable we don't sleep so great and it opens up the can of worms called "awake/semi awake events" which makes our data that we see invalid unless we know exactly when we woke up and most of us don't.

If you make a change....unless the results are a total disaster...give it a few days before you try to draw any conclusions. I have done some experiments that were total disasters the very first night and I aborted those experiments immediately.