Really new, left in dark by doctors

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Conor2612
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Really new, left in dark by doctors

Post by Conor2612 » Mon Nov 01, 2021 12:02 pm

Hi, I know a lot of people are left in the dark by their doctors to simply figure out their machine and troubles with CPAP so I really hope someone can offer some help/peace of mind.

AHI readings are super low, waking up feeling shattered still. I know something's amiss. Min Pressure 7, Max 10 on Resmed autosense 10 APAP. I'm new to Oscar so just need some advice as to whether I'm having a bunch of readings from Reras that are going amiss on Oscar/APAP machine, also want to know if my breaths look healthy and normal to anyone. Couple screen shots, one of the general daily view, a close up of what I think looks like a gasp after a Rera? (there are a lot of this 'gasps' throughout the night) Lastly just a screenshot of my normal breath to see if it seems fine, i'm no expert on what the waveform should look like.

I HAVE to add I've recently come off sleeping pills too, which I was on for a while before I was diagnosed then whilst attempting CPAP, so it could be a possibility that my body is just trying to figure out how to get natural sleep again after years of apneod sleep/sleep architectural changes because of pills and nothing to do with what you see in my charts. This is the reason I'm here, to cancel out an option. My doctors advice was 'let's start you on another pill'.

Any advice would be amazing.

Thankyou

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Re: Really new, left in dark by doctors

Post by Julie » Mon Nov 01, 2021 12:44 pm

Apart from anything else, is there a reason your max. pressure setting's only at 10?

And, it looks right now that you're having mostly central events, and they can't be fixed by regular Apap, but a slightly different machine, but there are others more expert on reading the graphs so I'd wait to see what they say. Oh, and doctors don't neceessarily (read 'often') know how the machines work, and neither do the techs or DMEs.
'

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Re: Really new, left in dark by doctors

Post by Conor2612 » Mon Nov 01, 2021 12:51 pm

Attaching a file with a cleaner look and showing the whole night. Also max is 10 because I don't know any better! Hence needing advice, doctors literally chuck it at you.

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Re: Really new, left in dark by doctors

Post by palerider » Mon Nov 01, 2021 1:47 pm

That one night looks pretty good, setting the max at 10 only prevents the machine from acting, in case it needs to go higher, there's few legitimate reasons to lower the max from 20.

You might try raising the min to 8, and see if that helps, you're doing quite well for someone new, but there is room for improvement.

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Re: Really new, left in dark by doctors

Post by Conor2612 » Mon Nov 01, 2021 1:51 pm

palerider wrote:
Mon Nov 01, 2021 1:47 pm
That one night looks pretty good, setting the max at 10 only prevents the machine from acting, in case it needs to go higher, there's few legitimate reasons to lower the max from 20.

You might try raising the min to 8, and see if that helps, you're doing quite well for someone new, but there is room for improvement.
Okay good to know. So truly looking at my screen shots my waveforms look good and not limited? You don't see any Rera's? That screen shot of a gasp wasn't a Rera? Seems to be so many of these gasps when I scrolled through.

I wonder why I'm waking up feeling so rubbish if my therapy seems to be working data wise?

Maybe my body really is just trying to adjust after being on pills for so long.

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Re: Really new, left in dark by doctors

Post by Pugsy » Mon Nov 01, 2021 1:54 pm

The max of 10 isn't an issue. The machine hasn't wanted to go near it anyway.

How many hours of sleep are you getting?
Are those hours fragmented with very many wake ups?
Do you take any medications of any kind? If so, what?

I see no RERA flags???? why do you thing that one zoomed in bigger breath is related to an RERA?

What sleeping medication were you on....how long....and when did you quit?
Conor2612 wrote:
Mon Nov 01, 2021 12:02 pm
waking up feeling shattered still.
Explain in detail what "shattered" means please.

How long have you been on cpap?

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Re: Really new, left in dark by doctors

Post by palerider » Mon Nov 01, 2021 2:00 pm

Conor2612 wrote:
Mon Nov 01, 2021 1:51 pm
palerider wrote:
Mon Nov 01, 2021 1:47 pm
That one night looks pretty good, setting the max at 10 only prevents the machine from acting, in case it needs to go higher, there's few legitimate reasons to lower the max from 20.

You might try raising the min to 8, and see if that helps, you're doing quite well for someone new, but there is room for improvement.
Okay good to know. So truly looking at my screen shots my waveforms look good and not limited? You don't see any Rera's? That screen shot of a gasp wasn't a Rera? Seems to be so many of these gasps when I scrolled through.

I wonder why I'm waking up feeling so rubbish if my therapy seems to be working data wise?

Maybe my body really is just trying to adjust after being on pills for so long.
I don't see any *effort* involved ahead of that deep breath, and you don't seem to have gone out of sleep breathing afterwards, were there any snores preceding it? (you're not showing the snore trace.

You have some flow limitations which are driving pressure up, but you don't have a screenshot of those times.

You have to understand that sleep isn't a constant, you go through multiple stages, multiple times per night, and in between them, you're briefly almost, or actually awake, when you feel like you slept the whole night long, you just don't remember those brief episodes.

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Re: Really new, left in dark by doctors

Post by Conor2612 » Mon Nov 01, 2021 2:12 pm

Pugsy wrote:
Mon Nov 01, 2021 1:54 pm
The max of 10 isn't an issue. The machine hasn't wanted to go near it anyway.

How many hours of sleep are you getting?
Are those hours fragmented with very many wake ups?
Do you take any medications of any kind? If so, what?

I see no RERA flags???? why do you thing that one zoomed in bigger breath is related to an RERA?

What sleeping medication were you on....how long....and when did you quit?
Conor2612 wrote:
Mon Nov 01, 2021 12:02 pm
waking up feeling shattered still.
Explain in detail what "shattered" means please.

How long have you been on cpap?

Hey pugsy, thanks for your reply, was looking forward to it, I know you're pretty boss on here.

So I'm apparently clocking 6/7/8 hours on here with varying degrees of fragmented sleep, seem to wake up loads especially in the second half of the night (5am onwards) my bedtime is roughly from 12.30/8am.

I was on various ones for months. Firstly mirtazapine with Clonazepam after a 'bad night'. Then I switched to Trazadone and started complying with cpap, managed to get a solid 6 hours that actually led me to feeling slightly refreshed, truthfully, felt positive for the first time in about 4 years of my sleep issues.

I came off them about 2 weeks ago after a tour (my job in a band travelling about) so I knew being at home for a few months was finally the perfect time to try and get some natural sleep. Since coming off trazadone I have felt like my sleep is incredibly light and I wake up way more frequently then I did with the sedating drugs.

This is exactly the reason I posted on here. My doctors response instead of giving me advice and telling me my body would eventually find deeper less fractured sleep again he just said 'go back on clonazaepam'. I'm here to rule out if its my Cpap therapy or if its my body chemistry figuring out its way again.

The only reason I wondered if it was a rera was a) I'm new to this and I don't know what they look like and there seems to be sooo many during the night
b) I heard a lot of people with low AHI that still feel rubbish have reras that aren't being taken care of so it was just a query.

Shattered in terms of waking up feeling unrefreshed, having very little energy, basically feeling my sleep was very broken and disturbed.

Thankyou again

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Re: Really new, left in dark by doctors

Post by Conor2612 » Mon Nov 01, 2021 2:17 pm

palerider wrote:
Mon Nov 01, 2021 2:00 pm
Conor2612 wrote:
Mon Nov 01, 2021 1:51 pm
palerider wrote:
Mon Nov 01, 2021 1:47 pm
That one night looks pretty good, setting the max at 10 only prevents the machine from acting, in case it needs to go higher, there's few legitimate reasons to lower the max from 20.

You might try raising the min to 8, and see if that helps, you're doing quite well for someone new, but there is room for improvement.
Okay good to know. So truly looking at my screen shots my waveforms look good and not limited? You don't see any Rera's? That screen shot of a gasp wasn't a Rera? Seems to be so many of these gasps when I scrolled through.

I wonder why I'm waking up feeling so rubbish if my therapy seems to be working data wise?

Maybe my body really is just trying to adjust after being on pills for so long.
I don't see any *effort* involved ahead of that deep breath, and you don't seem to have gone out of sleep breathing afterwards, were there any snores preceding it? (you're not showing the snore trace.

You have some flow limitations which are driving pressure up, but you don't have a screenshot of those times.

You have to understand that sleep isn't a constant, you go through multiple stages, multiple times per night, and in between them, you're briefly almost, or actually awake, when you feel like you slept the whole night long, you just don't remember those brief episodes.
No snores no. Honestly this is informative, it's making me think the CPAP is doing it's job and that truly it is just my body getting used to it all after being sedated by pills for so long. It's definitely left me with confidence on my cpap.

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Re: Really new, left in dark by doctors

Post by Pugsy » Mon Nov 01, 2021 3:07 pm

https://novarecoverycenter.com/drugs/tr ... -and-detox

It's up for grabs how long any withdrawal symptoms may persist but it could be months...and messing with sleep itself is one of the many potential side effects.
Similar side effects I think from the other meds.

You didn't say how long you have been on cpap?????
What medications are you taking now? If any?? Even OTC stuff.

What was your diagnostic AHI that earned you the cpap prescription? Home sleep study or in lab sleep study?

Some thoughts in general....whatever was causing the poor sleep that started the whole "let's fix bad sleep with sleeping pills" thing may or may not still rear its ugly head.
It might have been the sleep apnea and it might have been something else.
If it was sleep apnea then the cpap therapy should help but if it was something else then cpap can't fix problems not caused by sleep apnea...and the list of potential culprits for bad sleep is miles long.

I want you to go here and watch the videos so you can learn to figure out if the flagged events you see are real asleep events or arousal/awake related flagged events.
http://freecpapadvice.com/sleepyhead-free-software
Then go look at each of those flagged CAs/Centrals and see if you might have been awake/semi awake when they were flagged.

When you do wake up during the night reach over and turn the machine off and then right back on again...this will give you a known break in therapy line where we know for sure that you were awake and anything flagged right before or after the break in therapy is going to be awake related false positive.

If you never EVER hit 10 cm max...it doesn't really matter what the max is set at...be it 10 or 20 or 100 if the machine could go that high. I see you are in the UK...they tend to get their panties all in a wad when patients start changing stuff so I hate to suggest a change that may not be needed that ends up causing the patient to get in hot water with their medical care team.

I think you might have mistaken reading about flow limitations and UARS...and thought RERAs. They aren't necessarily the same. But if we saw a LOT of RERAs we might look closer at the FLs and wonder about UARS (which is really difficult to spot on the data we are given from the machine)...and we usually do a rule out diagnosis.

Your flow rate does show some flow limitations but not an unusually amount of them. I have seen much, much worse.
Now FLs can disturb sleep though and the best offense against them (assuming no nasal congestion) is a bit more pressure and since you are already using EPR at 3 cm...then we look at increasing the minimum pressure a bit.
So the idea to try 8 minimum is a worthwhile experiment to try. It may or may not make any real difference in your unwanted daytime symptoms because some of your symptoms could be either just crappy sleep in general from some other unknown cause or medication side effects or withdrawal side effects.

I wish all crappy sleep unwanted symptoms could be fixed with cpap because it's relatively easy to do but unfortunately when our crappy sleep is not airway related then cpap can't fix it.
Doesn't mean we don't at least try though....we just have to realize that cpap therapy can't fix everything.

If it were me...I would give things a bit more time to get past potential withdrawal impacts and take the time to learn about arousal breathing and false positive flags...and do those centrals flagged point to crappy sleep or not.
Up to you if you want to try the slight increase in the minimum...you are in the UK and they may give you grief or they might not care.

Even if you didn't have the past history of sleep issues from some unknown cause and the various medication trials and sleep apnea was the lone culprit....sometimes it just takes time to feel the good results the good numbers show us.

Oh...another question....recreational drug use or alcohol within 2 hours of bedtime? Both of those will really screw with sleep quality.

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Conor2612
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Re: Really new, left in dark by doctors

Post by Conor2612 » Mon Nov 01, 2021 3:43 pm

Pugsy wrote:
Mon Nov 01, 2021 3:07 pm
https://novarecoverycenter.com/drugs/tr ... -and-detox

It's up for grabs how long any withdrawal symptoms may persist but it could be months...and messing with sleep itself is one of the many potential side effects.
Similar side effects I think from the other meds.

You didn't say how long you have been on cpap?????
What medications are you taking now? If any?? Even OTC stuff.

What was your diagnostic AHI that earned you the cpap prescription? Home sleep study or in lab sleep study?

Some thoughts in general....whatever was causing the poor sleep that started the whole "let's fix bad sleep with sleeping pills" thing may or may not still rear its ugly head.
It might have been the sleep apnea and it might have been something else.
If it was sleep apnea then the cpap therapy should help but if it was something else then cpap can't fix problems not caused by sleep apnea...and the list of potential culprits for bad sleep is miles long.

I want you to go here and watch the videos so you can learn to figure out if the flagged events you see are real asleep events or arousal/awake related flagged events.
http://freecpapadvice.com/sleepyhead-free-software
Then go look at each of those flagged CAs/Centrals and see if you might have been awake/semi awake when they were flagged.

When you do wake up during the night reach over and turn the machine off and then right back on again...this will give you a known break in therapy line where we know for sure that you were awake and anything flagged right before or after the break in therapy is going to be awake related false positive.

If you never EVER hit 10 cm max...it doesn't really matter what the max is set at...be it 10 or 20 or 100 if the machine could go that high. I see you are in the UK...they tend to get their panties all in a wad when patients start changing stuff so I hate to suggest a change that may not be needed that ends up causing the patient to get in hot water with their medical care team.

I think you might have mistaken reading about flow limitations and UARS...and thought RERAs. They aren't necessarily the same. But if we saw a LOT of RERAs we might look closer at the FLs and wonder about UARS (which is really difficult to spot on the data we are given from the machine)...and we usually do a rule out diagnosis.

Your flow rate does show some flow limitations but not an unusually amount of them. I have seen much, much worse.
Now FLs can disturb sleep though and the best offense against them (assuming no nasal congestion) is a bit more pressure and since you are already using EPR at 3 cm...then we look at increasing the minimum pressure a bit.
So the idea to try 8 minimum is a worthwhile experiment to try. It may or may not make any real difference in your unwanted daytime symptoms because some of your symptoms could be either just crappy sleep in general from some other unknown cause or medication side effects or withdrawal side effects.

I wish all crappy sleep unwanted symptoms could be fixed with cpap because it's relatively easy to do but unfortunately when our crappy sleep is not airway related then cpap can't fix it.
Doesn't mean we don't at least try though....we just have to realize that cpap therapy can't fix everything.

If it were me...I would give things a bit more time to get past potential withdrawal impacts and take the time to learn about arousal breathing and false positive flags...and do those centrals flagged point to crappy sleep or not.
Up to you if you want to try the slight increase in the minimum...you are in the UK and they may give you grief or they might not care.

Even if you didn't have the past history of sleep issues from some unknown cause and the various medication trials and sleep apnea was the lone culprit....sometimes it just takes time to feel the good results the good numbers show us.

Oh...another question....recreational drug use or alcohol within 2 hours of bedtime? Both of those will really screw with sleep quality.

This is the most amazing response.

Been on cpap now for nearing 3 months. Always on sedating drugs until two weeks ago. The trazadone before kept me under and i seemed to feel like I was finally getting some better sleep.

On nothing now and I want to stick to it, even if it means it's a rough ride for a while.

My diagnostic was 8.4 AHI. Said Ihad positional sleep apnea. On my back it was 14.3/h. RDI of 19.5/h

Thankyou for that video, super helpful.

Okay fantastic, so I need to move on from the RERAS thing, clearly it would show up on OSCAR and it's not. Is it ok to explain UARS, flow limitations and RERAS for me a little? I just wanna park it for good. I was just scared that it was in my charts and being untreated, but clearly not.

Defintely shall try min 8 tonight, agreed though that in general I think it's just crappy sleep/body adjusting from a long time of pills.

No rec drugs or alcohol, I'm pretty clean living nowadays.

Lastly, my doc (cos i'm only mild-moderate apnea) reccomended an OAT (pause to be laughed off the forum haha). I do think a big issue I've had is waking up and feeling my mask on my face, rolling around half awake trying to get comfortable. Struggling on my side, struggling with pillows etc etc..do you think an OAT is a viable option for someone with my AHI scoring?

Thankyou

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Re: Really new, left in dark by doctors

Post by zonker » Mon Nov 01, 2021 3:54 pm

Conor2612 wrote:
Mon Nov 01, 2021 3:43 pm


This is the most amazing response.
she's good, isn't she? we're lucky to have her and palerider here, they know what's what.

oh and welcome to the zoo!
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Re: Really new, left in dark by doctors

Post by Pugsy » Mon Nov 01, 2021 4:21 pm

Flow Limitations....See if this video helps.
https://www.youtube.com/watch?v=-gie2dhqP2c

UARS...Upper Airway Resistance Syndrome
Google it and start reading. Really difficult diagnosis to make without an in lab sleep study with a Pes device
Used to be a catch all diagnosis when symptoms persisted despite looking good on paper with cpap therapy results (you actually look good on paper) but here lately the medical field has begun to look at it as a separate and very real diagnosis.

Your sleep study AHI of 8 ish...sure does raise some flags for maybe UARS involvement though.
Typically UARS patients have low diagnostic AHI numbers and feel really crappy.
The thing is cpap is still the best option for UARS treatment but you can't really rely on the data the machine gives as a guideline because these machines were never really designed for UARS reporting data points or treatment of UARS.
Historically UARS patients have always seem to need a LOT more pressure to relieve symptoms beyond what the machine was showing a good numbers or where auto adjusting pressures might want to go.
Example...I know a woman with documented UARS (sleep study with Pes device and even a titration sleep study with cpap and Pes device) who got spectacularly good results on paper with a cpap pressure of 8 and the machine simply never went above 8 cm) but during the titration with the Pes device she ended up needing 13 cm to resolve her issues.

If you want to go down the UARS road you will need to plan for a prolonged period of time and lots of logs regarding subjective feelings because the data from the machines is going to be totally unremarkable.
Usual DIY UARS advice....1 cm increases in pressure and allow at least 2 weeks at the new pressure and strict logging as to sleep quality and subjective feelings. Lots of patience is needed for sure.

RERAs....here's the deal to know for sure if a person has a Respiratory Event Related Arousal we have to know for sure a person is asleep and these machines don't have any way to know if we are asleep or not.
So when we see RERAs flagged the machine is saying that the breathing pattern looks like the pattern that is often seen with an arousal from sleep because of some sort of airway issue. An educated guess.
Not perfect...I have seen RERAs flagged when I know for sure I was awake. :lol:
When we do see people with a lot of RERA flags we do assume crappy sleep though...and start trying to figure out why the crappy sleep.

Remember to fix a problem you first have to identify the problem and often that is much easier said than done.

What I call crappy sleep quality from fragmented sleep is actually a form of "sleep maintenance insomnia"...google it and see the miles long list of potential culprits and you will see what I mean.

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Re: Really new, left in dark by doctors

Post by Conor2612 » Mon Nov 01, 2021 4:48 pm

Pugsy wrote:
Mon Nov 01, 2021 4:21 pm
Flow Limitations....See if this video helps.
https://www.youtube.com/watch?v=-gie2dhqP2c

UARS...Upper Airway Resistance Syndrome
Google it and start reading. Really difficult diagnosis to make without an in lab sleep study with a Pes device
Used to be a catch all diagnosis when symptoms persisted despite looking good on paper with cpap therapy results (you actually look good on paper) but here lately the medical field has begun to look at it as a separate and very real diagnosis.

Your sleep study AHI of 8 ish...sure does raise some flags for maybe UARS involvement though.
Typically UARS patients have low diagnostic AHI numbers and feel really crappy.
The thing is cpap is still the best option for UARS treatment but you can't really rely on the data the machine gives as a guideline because these machines were never really designed for UARS reporting data points or treatment of UARS.
Historically UARS patients have always seem to need a LOT more pressure to relieve symptoms beyond what the machine was showing a good numbers or where auto adjusting pressures might want to go.
Example...I know a woman with documented UARS (sleep study with Pes device and even a titration sleep study with cpap and Pes device) who got spectacularly good results on paper with a cpap pressure of 8 and the machine simply never went above 8 cm) but during the titration with the Pes device she ended up needing 13 cm to resolve her issues.

If you want to go down the UARS road you will need to plan for a prolonged period of time and lots of logs regarding subjective feelings because the data from the machines is going to be totally unremarkable.
Usual DIY UARS advice....1 cm increases in pressure and allow at least 2 weeks at the new pressure and strict logging as to sleep quality and subjective feelings. Lots of patience is needed for sure.

RERAs....here's the deal to know for sure if a person has a Respiratory Event Related Arousal we have to know for sure a person is asleep and these machines don't have any way to know if we are asleep or not.
So when we see RERAs flagged the machine is saying that the breathing pattern looks like the pattern that is often seen with an arousal from sleep because of some sort of airway issue. An educated guess.
Not perfect...I have seen RERAs flagged when I know for sure I was awake. :lol:
When we do see people with a lot of RERA flags we do assume crappy sleep though...and start trying to figure out why the crappy sleep.

Remember to fix a problem you first have to identify the problem and often that is much easier said than done.

What I call crappy sleep quality from fragmented sleep is actually a form of "sleep maintenance insomnia"...google it and see the miles long list of potential culprits and you will see what I mean.
So very interesting. Last question, why would people with UARS need a higher pressure? Surely it's still just stinting the airway? It's not like the higher pressure makes the airway bigger insize (I have narrow af airways, CT scan for OAT revealed). So in theory would't an OAT that literally opens the gullet making room for the air...work really well?

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Re: Really new, left in dark by doctors

Post by Pugsy » Mon Nov 01, 2021 5:03 pm

Conor2612 wrote:
Mon Nov 01, 2021 4:48 pm
why would people with UARS need a higher pressure?
I don't know and not everyone does end up needing markedly higher pressures. I have just noticed over the years that when people with UARS come here...seems like that's what happens.
Remember....UARS as a real medical problem in still in its infancy in terms of just about everything.
More research is now being done but for years no real exacting research was even done.

I assume the OAT is some sort of oral appliance....sorry but I know nothing about them other than sometimes they work well for some people and totally useless for others.

Your AHI is relatively low in the grand scheme of things and it might work well for you.

I think a lot is going to depend on what exactly was causing your crappy sleep to start with....and that's a real big unknown right now.

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