[Jay] MD help with work-up of poor sleep and fatigue

[Sonnyboy]

Little tip - AHI tends to go up a bit when on EPR, so don't imagine something else is wrong if that happens... it's generally not a jump, but just a bit of difference.

for Sonnyboy:
EPR is a deceptively complicated thing, it *looks* really simple, but it's behavior can be complex.

EPR reduces pressure between inhales, so setting EPR to a higher number reduces your baseline pressure. if your pressure is just barely what you need to avoid apneas and hypos, then epr will put your pressure into the trouble area... easily fixed by raising the base (min) pressure.

higher EPR can also cause you to breath a bit more deeply, encouraging you to take deeper breaths because of the pressure differential.. for a few people, this causes them to blow off a little too much co2, and then their body goes 'well, I don't feel the need to breath for a bit now', (like breathing real hard then holding your breath, you're fine for a while, until the co2 builds back up in your blood)... and that can show up as increased central apneas...

so, yes, EPR increases certainly can cause AHI to go up.

Hi Palerider,

Thank you for your response

I've always thought of EPR as a comfort measure and not much else. Pressures have never been a conscious problem for me. As far as I know I am breathing fine and my CO2 and O2 levels are fine, no objective tests I am aware of have shown otherwise. Given doctors have hypothesized I may have a hypoventilation/CO2 problem should I just leave the EPR alone for now? My AHI is fine and I rarely have CA's.

This might be a dumb question so forgive me if it is but in attempting to minimize snoring and flow limitations over time by increasing pressures could I have unnecessarily created a need for higher pressures or are my higher pressures the relate of weight gain? If I have a hypoventilation problem it's not caused by the weight gain.

In 7/14, I was titrated at 7min, 9max, 3EPR, today I am 13.2 min/max, 1 [now raised to 2] EPR.
My consistent complaint starting before 7/14 has been fatigue and weight gain.

[Julie]

Even a small gain can cause changes (maddening!) but I wonder if you tend to sleep with your head on your chest (relatively) as that can block your airway, so many people wear a soft cervical collar to counter it... worth a try I imagine.

[palerider]

I've always thought of EPR as a comfort measure and not much else. Pressures have never been a conscious problem for me. As far as I know I am breathing fine and my CO2 and O2 levels are fine, no objective tests I am aware of have shown otherwise. Given doctors have hypothesized I may have a hypoventilation/CO2 problem should I just leave the EPR alone for now? My AHI is fine and I rarely have CA's.

This might be a dumb question so forgive me if it is but in attempting to minimize snoring and flow limitations over time by increasing pressures could I have unnecessarily created a need for higher pressures or are my higher pressures the relate of weight gain? If I have a hypoventilation problem it's not caused by the weight gain.

In 7/14, I was titrated at 7min, 9max, 3EPR, today I am 13.2 min/max, 1 [now raised to 2] EPR.
My consistent complaint starting before 7/14 has been fatigue and weight gain.

EPR is primarily a comfort feature, but it *is* a limited bilevel effect, and it does increase ventilation a little... a minority of people can have more effect from it than just comfort.

I'd say that experimenting with it, keeping notes, and letting things average out over a few days is the only way you can be sure how it'll effect *you*.

raising pressure to reduce flow limitations won't cause you to need more pressure, just like getting glasses that let you see won't make your eyes worse, that just tends to happen as you get older.... cpap really can be thought of as glasses for your airway, put it on, it works, take it off, you're back where you woulda been otherwise.

keep in mind that lab titrations, while a place to start, are not the final word. your sleep varies too much day to day, and even hour by hour to think that a short period during a nights of lab experiments gets you the 'perfect right number'.

[Sonnyboy]

I've always thought of EPR as a comfort measure and not much else. Pressures have never been a conscious problem for me. As far as I know I am breathing fine and my CO2 and O2 levels are fine, no objective tests I am aware of have shown otherwise. Given doctors have hypothesized I may have a hypoventilation/CO2 problem should I just leave the EPR alone for now? My AHI is fine and I rarely have CA's.

This might be a dumb question so forgive me if it is but in attempting to minimize snoring and flow limitations over time by increasing pressures could I have unnecessarily created a need for higher pressures or are my higher pressures the relate of weight gain? If I have a hypoventilation problem it's not caused by the weight gain.

In 7/14, I was titrated at 7min, 9max, 3EPR, today I am 13.2 min/max, 1 [now raised to 2] EPR.
My consistent complaint starting before 7/14 has been fatigue and weight gain.

EPR is primarily a comfort feature, but it *is* a limited bilevel effect, and it does increase ventilation a little... a minority of people can have more effect from it than just comfort.

I'd say that experimenting with it, keeping notes, and letting things average out over a few days is the only way you can be sure how it'll effect *you*.

raising pressure to reduce flow limitations won't cause you to need more pressure, just like getting glasses that let you see won't make your eyes worse, that just tends to happen as you get older.... cpap really can be thought of as glasses for your airway, put it on, it works, take it off, you're back where you woulda been otherwise.

keep in mind that lab titrations, while a place to start, are not the final word. your sleep varies too much day to day, and even hour by hour to think that a short period during a nights of lab experiments gets you the 'perfect right number'.

Ok, got it, thank you.

The sleep doctors [the two that I have seen] act like I'm doing something wrong when they hear I change pressures with forum help.
The ordered Stanford titration did not bother me because the clinic wants to test the effect of different machines but the repeat titration the new sleep doctor ordered bothers me because my machine lets me titrate at home and like you are saying one night really is not the final word. I guess they need a way to create more billable time for themselves.

[palerider]

The sleep doctors [the two that I have seen] act like I'm doing something wrong when they hear I change pressures with forum help.
The ordered Stanford titration did not bother me because the clinic wants to test the effect of different machines but the repeat titration the new sleep doctor ordered bothers me because my machine lets me titrate at home and like you are saying one night really is not the final word. I guess they need a way to create more billable time for themselves.

there was a sleep doc on here for a while, who started hanging out on the irc channel, we ended up having a number of good, interesting, technical discussions... he said he was a big proponent of apap machines, and was even leaning towards thinking that ASV machines would be great for most people since they're incredibly automated... and he bemoaned the fact that there were a number of other doctors in town that hated apap machines, and he couldn't figure out if they were scared of having control taken from them, or the docs didn't *understand* the machines and what they could do... etc.

there's a whole spectrum of doctors, and they *don't* know everything, you run into docs that are *thrilled* with patients that want to educate themselves, and take charge of their treatment, and then there's the docs like yours, who want to control everything, and don't want the patient to be anything but "compliant" ie, obedient and following orders".

best thing to do, if at all possible, find a doctor that works with you, instead of wants to control you.

as to the "full data auto pressure setting" machine vs expensive lab study snapshots under artificial conditions... yeah, I hear ya.. my thoughts on sleep studies, for what they're worth:

they may be "The GOLD Standard", but they are, in many ways, woefully inadequate if you think about it.

you're in an artificial environment, all wired up and less comfortable than normal. it's *one night* and likely only part of that night. reading any titration report, you'll see that "oh, your good pressure was 12cm, you slept for 45 minutes at that pressure!"

it's a simple fact that sleep varies from night to night, you'll have better and worse days with the same exact settings. yet the "gold standard" is a small number of minutes tested on one night.... a brief photograph taken during the marathon run that is your sleep.

it's not surprising that sleep studies are somethings quite wrong, what's surprising is that they're ever right!

[Sonnyboy]

The sleep doctors [the two that I have seen] act like I'm doing something wrong when they hear I change pressures with forum help.
The ordered Stanford titration did not bother me because the clinic wants to test the effect of different machines but the repeat titration the new sleep doctor ordered bothers me because my machine lets me titrate at home and like you are saying one night really is not the final word. I guess they need a way to create more billable time for themselves.

there was a sleep doc on here for a while, who started hanging out on the irc channel, we ended up having a number of good, interesting, technical discussions... he said he was a big proponent of apap machines, and was even leaning towards thinking that ASV machines would be great for most people since they're incredibly automated... and he bemoaned the fact that there were a number of other doctors in town that hated apap machines, and he couldn't figure out if they were scared of having control taken from them, or the docs didn't *understand* the machines and what they could do... etc.

there's a whole spectrum of doctors, and they *don't* know everything, you run into docs that are *thrilled* with patients that want to educate themselves, and take charge of their treatment, and then there's the docs like yours, who want to control everything, and don't want the patient to be anything but "compliant" ie, obedient and following orders".

best thing to do, if at all possible, find a doctor that works with you, instead of wants to control you.

as to the "full data auto pressure setting" machine vs expensive lab study snapshots under artificial conditions... yeah, I hear ya.. my thoughts on sleep studies, for what they're worth:

they may be "The GOLD Standard", but they are, in many ways, woefully inadequate if you think about it.

you're in an artificial environment, all wired up and less comfortable than normal. it's *one night* and likely only part of that night. reading any titration report, you'll see that "oh, your good pressure was 12cm, you slept for 45 minutes at that pressure!"

it's a simple fact that sleep varies from night to night, you'll have better and worse days with the same exact settings. yet the "gold standard" is a small number of minutes tested on one night.... a brief photograph taken during the marathon run that is your sleep.

it's not surprising that sleep studies are somethings quite wrong, what's surprising is that they're ever right!

I feel very fortunate to have found this forum and people like you, Jay, Julie, Pugsy, Wulfman, Krelvin, Kteague and so many others whose names are not coming to me right now who are willing to teach.

[Jay Aitchsee]

EPR is a deceptively complicated thing, it *looks* really simple, but it's behavior can be complex

Interesting (maybe) anecdote:
Back in 2014, PR and I were having a PM discussion about EPR. At that time, I said I didn't use it because (I thought) it disturbed my sleep. Flash forward to today and I use EPR 3, full time because (I think) it is less disturbing than not. In 2014 I was using a FFM, today, nasal pillows with a lower pressure setting.
So, there you go

[Jay Aitchsee]

The sleep doctors [the two that I have seen] act like I'm doing something wrong when they hear I change pressures with forum help.The ordered Stanford titration did not bother me because the clinic wants to test the effect of different machines but the repeat titration the new sleep doctor ordered bothers me because my machine lets me titrate at home and like you are saying one night really is not the final word. I guess they need a way to create more billable time for themselves.

Right, I agree with PR, for simple OSA, a knowledgeable user probably can do a better job at home over time than a sleep lab in one night. For Central and Complex apnea, obviously a lab titration will be needed, but still, it's probably just a starting point.

In my opinion, if a patient has demonstrated knowledge and competence, a doctor should be OK with self management of therapy, in fact, should encourage it. If not, perhaps a new doctor is warranted.

However, a little knowledge can be dangerous*. Competent self management is not the same as what's often referred to on the forum as Dial Wingin', chasing AHI or residual tiredness with frequent setting changes, often without any real understanding of the underlying fundamentals. In my opinion, changes in therapy need be done in a slow, methodical, purposeful way, one variable at a time with an expected result based on a good knowledge of the fundamentals. To do otherwise is almost guaranteed to result in poor sleep.

We see examples of Dial Wingin' almost everyday. A newbie signs on with something like "I've been using CPAP for 3 weeks. I've got SleepyHead, my AHI is 2.5 and I'm going to up my pressure because I know it should be less than 1.0. BTW, what's CA?"

Edit: *See a couple posts down for definition

[PEF]

I would just like to make another suggestion as far as medical tests go. Get your serum calcium checked. The MAJOR symptom of hyperparathyroidism (bad parathyroid gland causing too much calcium in the blood) is fatigue. It is unlikely you have it, but it needs to be ruled out. For information, go to parathyroid.com. Your serum calcium should be firmly in the 9's, never spiking up to 10 and beyond.

[palerider]

EPR is a deceptively complicated thing, it *looks* really simple, but it's behavior can be complex

Interesting (maybe) anecdote:
Back in 2014, PR and I were having a PM discussion about EPR. At that time, I said I didn't use it because (I thought) it disturbed my sleep. Flash forward to today and I use EPR 3, full time because (I think) it is less disturbing than not. In 2014 I was using a FFM, today, nasal pillows with a lower pressure setting.
So, there you go

well, back in 2014, it may have been disturbing your sleep, and now, it may be assisting it... things change over time

another thing is that the varying pressure of EPR and bilevel can make FFMs expand and contract with each breath, which can be disturbing... EPR isn't too bad, compared to a bunch of PS on a bilevel, but it can be noticeable.

[palerider]

However, a little knowledge can be dangerous.

In all fairness, with cpap, "dangerous" is pretty mild, there's very little you can do with cpap that will harm you. about the worst is just less effective treatment, but even then, no worse than nothing.

the only thing I can think of that might be dangerous is if someone takes a bilevel and really cranks the pressure support wayyyy up, far past where it'd be comfortable. it'd be like hyperventilating... make ya dizzy and such.

[Pugsy]

the only thing I can think of that might be dangerous is if someone takes a bilevel and really cranks the pressure support wayyyy up, far past where it'd be comfortable. it'd be like hyperventilating... make ya dizzy and such.

I know a couple of people with no history of centrals who decided to try PS of 10 and then wondered "where in the hell did all those centrals come from" I don't know how they even tolerated PS of 10...talk about feeling like a puffer fish.

I like PS...3 to 4 with 4 being my preference but I can do 3 quite nicely.
Makes me wonder sometimes if maybe long ago I should have got a ResMed machine instead of Respironics.
When I went to "bilevel" on a lark I discovered (over about 2 months) that I was sleeping about 45 minutes longer on bilevel with PS of 4 than I had been doing on apap (Respironics so the most I could get was 2 cm reduction) and that 45 minutes (with no other change in anything) seemed to really impact how I felt during the day.
No real explanation as to why I was sleeping longer...but I was and my sleep is so fragile anyway due to the other issues that any way I get more sleep is going to be a definite plus in my book.

I do wonder what I would have been doing with a ResMed apap with EPR set to 3 all those years on the Respironics apap with AFlex set to 3 and the most I was really getting was 2 cm reduction.

It's like anything else with cpap....some people do better...some people don't but if someone hasn't tried exhale relief then maybe it's worth trying to see if it helps. What does anyone have to lose?

The only real drawback would be if someone happens to be in that tiny percentage of bilevel users who develop centrals with any bilevel pressures (doesn't have to be a big PS) and that risk is so small that I just don't see it being a huge problem. If it were that big of a risk...we wouldn't have exhale relief on these machines and regular bilevel wouldn't be the first go to therapy mode for central reduction.

Maybe my next machine will be a ResMed AirSense 10 AutoSet if I stumble on one that is cheap enough.
Might even be the "for Her" model just to try out that new special mode....just on a lark. I don't see finding a cheap AirCurve anytime soon.
The one thing I never tried was ResMed apap....I have done the auto in ResMed bilevel but not in the regular machines.

[Jay Aitchsee]

However, a little knowledge can be dangerous.

In all fairness, with cpap, "dangerous" is pretty mild, there's very little you can do with cpap that will harm you. about the worst is just less effective treatment, but even then, no worse than nothing.

the only thing I can think of that might be dangerous is if someone takes a bilevel and really cranks the pressure support wayyyy up, far past where it'd be comfortable. it'd be like hyperventilating... make ya dizzy and such.

Yeah, figure of speech, poor choice of words. How about, "a little knowledge could muck up therapy"? or "a little knowledge could cause poor sleep"? or "twisting knobs with no idea what your doing probably won't work very well"? Yeah, I like that one.

[avi123]

Causes
By Mayo Clinic Staff


Most of the time fatigue can be traced to one or more of your habits or routines, particularly lack of exercise. It's also commonly related to depression. On occasion, fatigue is a symptom of other underlying conditions that require medical treatment.

Lifestyle factors

Taking an honest inventory of things that might be responsible for your fatigue is often the first step toward relief. Fatigue may be related to:
•Use of alcohol or drugs
•Excess physical activity
•Jet lag
•Lack of physical activity
•Lack of sleep
•Medications, such as antihistamines, cough medicines
•Unhealthy eating habits

Conditions

Unrelenting exhaustion may be a sign of a condition or an effect of the drugs or therapies used to treat it, such as:
•Acute liver failure
•Anemia
•Anxiety
•Cancer
•Chronic fatigue syndrome
•Chronic infection or inflammation
•Chronic kidney disease
•Concussion
•COPD
•Depression (major depressive disorder)
•Diabetes
•Emphysema
•Meralgia paresthetica
•Grief
•Heart disease
•Hyperthyroidism (overactive thyroid)
•Hypothyroidism (underactive thyroid)
•Inflammatory bowel disease (IBD)
•Medications and treatments, such as chemotherapy, radiation therapy, pain drugs, heart drugs and antidepressants
•Multiple sclerosis
•Obesity
•Pain that's persistent
•Sleep apnea
•Stress
•Traumatic brain injury

[Jay Aitchsee]

Sonnyboy, In my newsfeed this morning this article listing 27 health items associated with Vitamin D3 deficiency came up and I thought of you. These items are associated with Vitamin D3 deficiency not necessarily caused by it.

The "normal" blood range for D3 is considered to be 30 to 100ngl/ml; however, many, including the Vitamin D Council, suggest higher lower levels. The Vitamin D Council suggests

a level of 50 ng/ml is the ideal level to aim for.

Your doctor said you didn't need supplements, but did you get your levels for D3 and B12?

It could be coincidental, but when I began supplementing my D3 and B12, both of which were low normal, bringing my D3 up into the 50-60 range, my deep sleep as measured by my Zeo increased. Again, it could have been coincidental since I began implementing better sleep hygiene at the same time, but it didn't hurt, for sure.

There are essentially two ways to improve serum Vitamin D3 levels, supplements and more exposure to sunlight. How's your exercise program coming along? Nudge, nudge.