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What to do next in my search for better sleep?
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vsheline Offline

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Machine: S9 VPAP Adapt (USA Model# 36007, not better 36037 or 36067)
Mask Type: Full face mask
Mask Make & Model: F10 or SimPlus w/ 2Liners. MirageQuatro & Gecko gel pad
Humidifier: H5i
CPAP Pressure: 15 EPAP, PS 5-10
CPAP Software: ResScan

Other Comments: Marfan Syndrome, chronic bradycardia, occasional Cheyne-Stokes Respiration

Sex: Male
Location: California, USA

Post: #11
RE: What to do next in my search for better sleep?
(01-06-2015 10:20 PM)the_mad_man Wrote:  I've had a few sleep studies done in 2014. I had to have the studies interpretted by two different doctors, and was finally diagnosed with a mild case of upper airway resistance syndrome (UARS). I'm told that my RDI is 12 and my AHI is 3. I am rather thin, so I didn't fit the profile of a sleep apnea sufferer.

I've been prescribed a Resmed S9 Autoset CPAP and I've used it for a few months, but I'm not seeing the results I want. As a matter of fact, I can't tell any difference at all in terms of how I feel....

***

I've been thinking about going to Dr Barry Krakow for another opinion about my sleep. Here's why: I've read his book "Sound Sleep Sound Mind". When I finished the book, I felt like I had read a book that was written personally about me and for me!

Hi the_mad_man, welcome to Apnea Board.

Yes, Dr. Krakow is really a very great researcher and therapist. Some day I hope to make time to read his books. There are several threads on Apnea Board which discuss some of his findings.

As you know, the classic treatment for UARS is bi-level therapy, and EPR (and, in Philips Respironics machines, A-Flex and Bi-Flex but not C-Flex) is a form of bi-level therapy.

So, I suppose you are already using EPR set to 3 (max), and your apnea events are still mostly obstructive? If not, I suggest raising EPR by 1 each week until EPR is 3. But do be on the look out in case increasing EPR causes the Complex Apnea Index (CAI, average number of central apneas per hour) to increase significantly, such as becoming higher than 2 or 3 per hour.


(01-09-2015 10:48 PM)the_mad_man Wrote:  Next, I will answer the question about what the machine pressure does at night. At first, the machine was jumping to the maximum pressure almost as soon as I went to sleep. As a matter of fact, this tended to jolt me awake; taking sedative medications helps somewhat with this, but not 100%. What seems to help more is to sleep on my side, but this is not comfortable for me and I sometimes roll back into a supine position. With this, I seem to sleep a little bit better and have less mass leakage and flow limitation, *but* my Zeo unit indicates that I'm still getting only a tiny amount of slow-wave sleep. (I don't know how accurate it is)

This week, I've been mostly sleeping on my side, and Sleepyhead reports minimal flow limitations and AHI < 2. This morning, however, I woke up feeling crappy and with AHI 5.6 for the night. For about the last 90 minutes of my sleep this morning, I turned on my back and had AHI of almost 40 according to Sleepyhead!

It is very common that the AHI increases dramatically when we are sleeping flat on our back. Lots of forum members have learned they need to avoid letting themselves ever roll onto their back while asleep.

I use a thick foam mattress topper so that it is not uncomfortable for me to sleep on my side, and I wear a snug teeshirt with one or two tennis balls in pockets sewn between my shoulder blades along my spine, so that when I roll onto my back I wake up just enough to keep on rolling until I'm on my other side.

I, too, think that gradually raising the Min Pressure on your AutoSet may help a lot. I think there would be no harm in jumping the Min Pressure up to your present median pressure, unless that would be uncomfortably high, and then you could consider raising Min Pressure gradually higher from there, by 1 cmH2O per week, so there will be time to monitor the effect of changes for a week between each adjustment.

If after all the above you continue to suffer symptoms of excessive daytime sleepiness, and if your CAI is still low, you would likely benefit from a bi-level machine such as the Philips Respironics "System One BiPAP Auto with Heated Hose" machine which has several features which the corresponding ResMed model does not have.

I think it would be easy to obtain a great bi-level CPAP machine like the Respironics System One DS760 BIPAP Auto on the secondary (used) markets for well less than US$1,000, but if you would need insurance to help pay for it and if for some reason insurance declined, perhaps seeing an expert like Dr Krakow would be especially helpful while appealing the denial of coverage.

Take good care of yourself,
--- 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: 01-11-2015 04:25 PM by vsheline.)
01-10-2015 07:47 PM
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the_mad_man Offline

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Machine: Resmed S9 Autoset
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Post: #12
RE: What to do next in my search for better sleep?
I agree with those of you who say that numbers can be a really good way to measure progress. Unfortunately, since I have UARS, and not Sleep Apnea (AHI=3, RDI=12 at one of my studies, AHI=3, RDI=7 at another), it's hard to use AHI as a measure of progress. Interestingly, though, my CPAP machine often reports an AHI as high as 10 when I sleep on my back; far higher than what was measured at any of my formal sleep studies. About 90% of these events are "Clear Airway" events < 20 seconds.

I look at the "Flow Limitation" graph to see signs of progress. So far, I am seeing those signs; the flow limitation graph for recent nights is much lower than for earlier nights. I'm working on getting more comfortable with sleeping on my side. Furthermore, I can see that sleeping on my back results in big flow limitations right out of the gate, which combined with the high pressure the machine delivers in response, jolt me awake so that I can't go back to sleep.

I do realize that after over ten years of this, my body is damaged in many ways and even with the best recovery possible, I can't expect things to be like before it happened. I strongly suspect that my short-term memory is permanently damaged. I just want to be able to live my life without being sleepy all the time.

Let's talk about the minimum pressure. In days past, I had tinkered with the *maximum* pressure because of that whole jolting awake thing I mentioned above. Can you guys tell me a little more about how increasing the minimum pressure may help? Last night, I went ahead and bumped my minimum pressure from 5 to 6. Interestingly, the pressure never went above 10 even though the maximum is set to 13. It usually goes up to 12 or so. Also, I am using EPR at level 3.

I've taken treatments in the past for hormones and infections, as we discussed, and less, it was Lyme Borellia that the doctor thought it might be. I felt a bit better after taking herbal treatments for this (see "Healing Lyme", by Steve Buhner) I suppose that perhaps my poor sleep or whatever the root cause of all this crap is weakened my immune system so I could get infected. Unfortunately, improvement eventually stopped, and I'm still stuck with EDS.

There's another book I like called "From Fatigued to Fantastic", by Dr. Jacob Teitelbaum. His take on overcoming fatigue is that there are four ways to approach treatment: sleep, hormones, infections, and nutrition. ("SHIN") He suggests that for best results, you must address all four at the same time. Having read this, I can see how I've addressed infections and hormones in years past, but it's obvious that my sleep is not what it needs to be for me to feel well.

***

Here's what I'm thinking that I may do.

First of all, I've been using my autoset CPAP since mid-October, but I haven't been able to consistently sleep thru the night with it until a few weeks ago, so that definitely needs more time. I will tinker a bit more with the minimum pressure and see if that improves my response.

I am also going to spend some time working with the suggestions in "Sound Sleep Sound Mind" for working with sleep emotionally.

I may take up my doctor's suggestion to get another formal endocrinology workup. I am scheduled to see the sleep Dr again in mid-March.

If these things don't work out for me, I think I'm going to make the trek down to Albuquerque and be seen by Dr Krakow. I think that it's entirely possible that I could be having some unusual problem causing my brain-waves to speed up inappropriately during sleep, preventing me from getting restorative rest. Using the "Zeo" unit, I am getting very little slow-wave sleep, but when I compare the graphs from Zeo and Sleepy Head, there appears to be no correlation between when apneas and flow limitations occur and when arousals occur. If that is the case, there may be a completely different treatment that I need to follow.
01-11-2015 01:20 PM
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vsheline Offline

Advisory Members

Posts: 1,907
Joined: Jul 2012

Machine: S9 VPAP Adapt (USA Model# 36007, not better 36037 or 36067)
Mask Type: Full face mask
Mask Make & Model: F10 or SimPlus w/ 2Liners. MirageQuatro & Gecko gel pad
Humidifier: H5i
CPAP Pressure: 15 EPAP, PS 5-10
CPAP Software: ResScan

Other Comments: Marfan Syndrome, chronic bradycardia, occasional Cheyne-Stokes Respiration

Sex: Male
Location: California, USA

Post: #13
RE: What to do next in my search for better sleep?
(01-11-2015 01:20 PM)the_mad_man Wrote:  Interestingly, though, my CPAP machine often reports an AHI as high as 10 when I sleep on my back; far higher than what was measured at any of my formal sleep studies. About 90% of these events are "Clear Airway" events < 20 seconds.

Hi the_mad_man,

Sounds like sleeping on your back causes obstructive events, resulting in higher pressures, resulting in lower a number of obstructive events but a higher number of central events.

(01-11-2015 01:20 PM)the_mad_man Wrote:  Let's talk about the minimum pressure. In days past, I had tinkered with the *maximum* pressure because of that whole jolting awake thing I mentioned above. Can you guys tell me a little more about how increasing the minimum pressure may help? Last night, I went ahead and bumped my minimum pressure from 5 to 6. Interestingly, the pressure never went above 10 even though the maximum is set to 13. It usually goes up to 12 or so. Also, I am using EPR at level 3.

Increasing the Min Pressure often makes inhaling much more effortless. If the pressure is too low, sometimes it feels like inhalation takes a little too much effort, making breathing uncomfortable., making us feel slightly suffocated. Some do not like using inhale pressures less than 8 or 10.

Of course, increasing the Min Pressure also makes it a little harder to exhale, but after a couple weeks the muscles we use during exhalation gain strength and we stop noticing the higher exhalation pressure. For example, my EPAP is 15, and sometimes when I wake up I need to check with my hand that air is flowing from my mask vent holes, as a double check that the machine is turned on and is working normally.

Also, EPR never lowers the exhale pressure below 4. So, if Min Pressure is 5 then EPR is only able to provide 1 cmH2O of exhalation pressure relief. If the Min Pressure is 7 or higher, EPR will be able to provide its full 3 cmH2O pressure relief, which would be expected to treat UARS more effectively by minimizing Flow Limitation at these low pressures.

(01-11-2015 01:20 PM)the_mad_man Wrote:  Here's what I'm thinking that I may do.

First of all, I've been using my autoset CPAP since mid-October, but I haven't been able to consistently sleep thru the night with it until a few weeks ago, so that definitely needs more time. I will tinker a bit more with the minimum pressure and see if that improves my response.

Right.

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: 01-11-2015 04:47 PM by vsheline.)
01-11-2015 04:20 PM
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the_mad_man Offline

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Machine: Resmed S9 Autoset
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Post: #14
RE: What to do next in my search for better sleep?
The thing that seems so out of place to me is that my symptoms have been so severe, yet lab testing suggests that UARS is "mild". I think there is likely some part of the picture I can't see.
01-11-2015 10:44 PM
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quiescence at last Offline

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Machine: REMstar System One with Autoflex
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Other Comments: CMS-50F Plus oximeter /w SPO2 Assistant software. Avowed mouth-breather switching to nose-breathing

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Post: #15
RE: What to do next in my search for better sleep?
I'm just starting here, but think we may have some things in common. I have noticed I do feel better if my RERA is lower that particular night. I do not seem to be able to control it, but it seems to be related to the food (amount and type) I have eaten and how my digestion and elimination is going. I believe your flow limitation issues and the RERA are related, and this seems the most important factor for you at this point in therapy. (That would indicate the RDI is much more important). The gradual increase in your min pressure noted above might quiet the flow limitation issues, especially with the nasal pillows. One more thing I noticed - when I am done sleeping without restlessness, I just get up, even if it has only been 2.5 hours. For me, trying to sleep after that (with the mask on) just yields erratic breathing and bunches of periodic breathing, RERA, snores, snorts and CA/OA. Most the time, I am a bit stuffy, and taking my OTC meds for stuffiness and the drink of water resolve this. I can usually go back to bed within an hour, and sleep for another 3, maybe 4 hrs. I will tell you that with 2.5 hours of treated sleep I am much more lively that my old untreated 9 hour night. I cannot seem to push my sleeping time beyond about 6.5 hours. My average AHI recently is 2.0 to 4.5, and RDI average bumped up for RERA to 3.0 to 6.5. I feel very much better (estimate 4 times the concentration, stamina, alertness.) and I began less than 3 months ago.

Hope you find some relief.

I am not a doctor, but I did stay at Holiday Inn Express last night.

Dedicated to QALity sleep.
You'll note I am listed as an Advisory Member. I am honored to be listed as such. See the fine print - Advisory Members as a group provide advice and suggestions to Apnea Board administrators and staff concerning Apnea Board operation and administrative policies. 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.
(This post was last modified: 01-12-2015 12:14 AM by quiescence at last.)
01-12-2015 12:06 AM
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Ghost1958 Offline

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Post: #16
RE: What to do next in my search for better sleep?
Ive been sort of working on the flow limitation and rera thing also. Ive found its a dicier thing to get a handle on than just AHI.

Raising my min pressure from 9 to 9.5 to 10 pretty much wiped out the reras and flow limitations but brought on a few OAs which really makes no sense at all. AHI is usually 1 or under so I have room to play a bit.

Right now im at 10/17 auto though it never goes over 13 and rarely that high with a nasal. Though my titrated pressure is 15 with a FFM.

Ill ride this 10 min setting a bit and see if things settle down. I do know that dropping aflex from 2 to 3 made FLs worse not better.
Though I might get used to that as well. Especially if I raised the min pressure another cm to 11.
01-12-2015 01:02 AM
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vsheline Offline

Advisory Members

Posts: 1,907
Joined: Jul 2012

Machine: S9 VPAP Adapt (USA Model# 36007, not better 36037 or 36067)
Mask Type: Full face mask
Mask Make & Model: F10 or SimPlus w/ 2Liners. MirageQuatro & Gecko gel pad
Humidifier: H5i
CPAP Pressure: 15 EPAP, PS 5-10
CPAP Software: ResScan

Other Comments: Marfan Syndrome, chronic bradycardia, occasional Cheyne-Stokes Respiration

Sex: Male
Location: California, USA

Post: #17
RE: What to do next in my search for better sleep?
(01-12-2015 01:02 AM)Ghost1958 Wrote:  I do know that dropping aflex from 2 to 3 made FLs worse not better.

Hi Ghost1958,

Have you tried A-Flex = 1 to see if it might be best for reducing Flow Limitation and RERA?

According to the Clinician Guide for the Philips Respironics System One Auto A-Flex machine, A-Flex settings of 1 and 2 and 3 all basically introduce 2 cmH2O of bi-level pressure difference between inhale versus exhale, but with differing amounts of shaping in the pressure toward the end of inhalation and at the beginning of exhalation.

The webpage linked below shows that with an A-Flex setting of 3, toward the end of inhalation the pressure starts dropping early, providing less pressure support toward the end of inhalation.

An A-Flex setting of 1 would result in 2 cmH2O of bi-level pressure reduction at the end of exhalation, combined with the longest/strongest amount of pressure throughout nearly the entire period of inhalation, which I think may be best for reducing RERA and Flow Limitation.

http://www.ezybreath.com.sg/techno/flexfamily.html

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: 01-14-2015 05:06 AM by vsheline.)
01-12-2015 04:14 AM
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the_mad_man Offline

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Post: #18
RE: What to do next in my search for better sleep?
I tried bumping my minimum pressure to 7 last night. I felt like it was too much; I experienced anxiety and racing thoughts. I put it back down to 6 and then went to sleep. Sleepyhead suggests that this is still reducing flow limitations, so maybe I'll try to move up to 7 slowly.
01-13-2015 08:31 PM
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quiescence at last Offline

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Machine: REMstar System One with Autoflex
Mask Type: Full face mask
Mask Make & Model: Quattro AirFit F10
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CPAP Pressure: 5-13 Autotritrating CPAP
CPAP Software: SleepyHead EncoreBasic

Other Comments: CMS-50F Plus oximeter /w SPO2 Assistant software. Avowed mouth-breather switching to nose-breathing

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Post: #19
RE: What to do next in my search for better sleep?
when I went from min of 4 to min of 6 I also noticed that the pressure excursions did not go as high. many have seen that. so if you usually go up to 12 but barely reached 10, ride that for a few days.

if you want to take a stab at 7, why not make min of 7, then set the ramp feature to start at 6 for 10 minutes. it will gradually climb to 7, but by 10 minutes in, you'll already be asleep.

by the way I have my min at 6, and ramp at 5.5 for 15 minutes. I only use ramp when the 6.0 start with the a-flex is a distraction (or later when I awake the darn thing is pumping at me like 12). I am almost always asleep within 7 minutes.

Dedicated to QALity sleep.
You'll note I am listed as an Advisory Member. I am honored to be listed as such. See the fine print - Advisory Members as a group provide advice and suggestions to Apnea Board administrators and staff concerning Apnea Board operation and administrative policies. 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.
01-13-2015 08:56 PM
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the_mad_man Offline

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Machine: Resmed S9 Autoset
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Post: #20
RE: What to do next in my search for better sleep?
Darn it! I can't win for losing lately! I must have taken 2 hours to fall asleep last night and was constantly awakened by mask leaks. I feel like @#$% today!

I guess I'm going to tighten down my mask strap, but I think I need to contact the hospital about a new mask; I just hate to pay $100+ for a piece of plastic! /frustration
01-14-2015 09:57 PM
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