First week with CPAP machine (Resmed Airsense 10)

[tedtomato]

Hi all,

I have had a sleeping disorder for many years, and decided to get it sorted.

Symptoms:
- Tired during the day (despite 8 hours "sleeping" in bed). Need some naps when possible (like after lunch) but they don't seem to be that refreshing
- Foggy
- Irritable
- Waking occasionally with hallucinations (I guess it's when I wake up in a middle of deep sleep or dreaming)
- Very disturbed sleeping, as reported by my Fitbit and Jawbone UP3 bands (lots of movement, 45 min of deep sleep over 8 hours)
- Snoring (not specifically overweight and fairly active)
- Not remembering dreaming (which, according to the consultant, is a symptom of poor sleep)
- A nap after exercise is not that refreshing. Cycling or running does not make me feel that much better, just more tired

I tried nasal devices, nasal strips, mouth guard, sleeping tablets, melatonin etc, and none of them made much difference in sleep quality (or snoring).

I bought a finger oxymeter device, and used it for a few nights. Oxygen level in blood was not dipping that much, although hear rate was moving a lot.

I then got finally referred to a sleep consultant (which is hard in the UK, even with private insurance).

I had a home sleep study done 2 weeks ago, and the sleep apnea was not very conclusive (about 7 events per hour). They told me that a normal person would have 5 events of less per hour, while someone with sleep apnea would be 15 or more.

Consultant gave me the option to either have a "proper" overnight sleep study at the clinic, or try CPAP for a while. I thought I might as well try CPAP, before we do further studies. Also, it was very hard to sleep with all those sensors on me during the home sleep study, so additional electrodes etc. may make the clinic study a bit meaningless.

They sold me last week a Resmed Airsense 10 (elite) machine, as well as a full mask (Simplus full face with headgear).
Machine has been set to a pressure of 8, as sleep apnea could be very mild.

Initial feedback:

- I couldn't sleep at all the first two nights with the mask on
- The machine they gave me didn't have a humidifier nor the heated pipe, so I had cold air blowing on me, which was unpleasant
- I since bought the humidifier and heated pipe directly from Resmed (arrived in 3 days), and this is surely a lot more comfortable. However, it makes the machine noisier (I can hear my breathing through the water tank, while it was silent before)
- I haven't managed to do a full night sleep with the mask and machine yet. Maximum I have done is probably 2 hours of sleeping. I tried to take sleeping tablets before going to bed, but it didn't improve going to sleep, and made the next day much worse
- The pressure is not really the issue, I can't feel it (unless I suddenly open my mouth) and the machine can ramp up the pressure. However, the mask (while well made and comfortable) makes going to sleep very hard

Some questions:

- As they gave me a standard CPAP machine, as opposed to an automated, self-adjusting one (not sure why, as the price difference seems minimal between the Elite and AutoSense versions), I am not sure how they will determine the optimum pressure adjustment. Do they just keep increasing the pressure until the number of events per night decrease?
- Not sure how to find the best mask, and if a nasal mask would be better tolerated than a full mask, although I tend to breathe through my mouth occasionally. Do I just need to buy one and try? Are there places in the UK where masks can be tried?

I was very hopeful that CPAP would work for me quickly (some people report good sleep quickly), but unfortunately, it looks like it's going to take awhile before I can even tolerate sleeping with a mask, and will make me more tired in the meantime.
The main issue is that I don't even know if CPAP is the solution anyway for my sleep issues, apart from maybe addressing the snoring.

Thanks!
Ted.

[Julie]

One thing to remember is that however high (or low) your study result was - the degree of severity - it has nothing to do with what pressure setting you're given... you can have a 'very severe' report of 100 events per hour but still only need a pressure of 7 to keep YOUR particular airway open... and someone with a report of only 10 events may need a pressure of e.g. 12 or more.

It sounds like you're looking for a quick fix to your problems and are self diagnosing that you have apnea, trying to 'make' the sleep study fit so you can use a Cpap and your problems will disappear. You MAY well have apnea, but... have you also recently had a full check up with blood and other lab tests to make sure you don't have problems unrelated to sleep, possibly thyroid, sugar, hormonal, etc?

If you can, try not to sleep on your back as it provokes apneas and snoring... people try e.g. wearing fanny (or even back) packs overnight to keep from turning in their sleep until they get used to the new position.

There's no reason not to have an auto machine - at least in the U.S. as insurance codes are for the same price for both, but you sound like you might be in the UK so would have to investigate further there.

Also if you get an auto machine you could download Sleepyhead software to take a good look at many parameters of how you sleep overnight and we can help with that as well.

[Shell_78]

I'm a complete newbie to CPAP too......only had 4 nights so far. I'm on the AirSense 10 Auto.
I can't imagine why they wouldn't haven't sold you an auto one!
One thing that I was told sternly by the sleep tech (when I said I might need sleeping pills for my trouble getting to sleep before 2am) is that you definitely want to be using the CPAP cause it will make sleep apnea worse.

I have most of the same symtoms - except I snore very little.
I also have a Fitbit (Blaze) and my sleeping movements (a lot) hasn't improved since starting on the CPAP. I usually get 4hrs 20mins sleep out of 6hrs bedtime and I usually fall asleep within 5-10 mins. I hope with time that changes.
I'd be interested to see if it improves for you in time when you have things sorted/settled with your machine.

I struggled myself sleeping with the home study test. It's disappointing after all that effort, it left you still not knowing for sure.
As difficult as it will be to get much sleep, it's probably best to go through with the clinic sleep study so they can get to the root of your sleeping issues. They hopefully then will be able to better help with the CPAP pressure etc if the test comes back positive for definite apneas.

[tedtomato]

It sounds like you're looking for a quick fix to your problems

Who isn't?? even if the expectations are probably too high.

and are self diagnosing that you have apnea, trying to 'make' the sleep study fit so you can use a Cpap and your problems will disappear. You MAY well have apnea, but... have you also recently had a full check up with blood and other lab tests to make sure you don't have problems unrelated to sleep, possibly thyroid, sugar, hormonal, etc?

Not quite a self diagnosis: I have seen my GP, was referred to an ENT consultant, who referred me to a sleep specialist, who prescribed a home sleep study, analyzed the results and suggested testing CPAP. Thyroid test was done, and showed no issues.

The home sleep study would indicate that there was some mild apnea, although as the consultant said, it could have been a good day, and also I only tolerated all that monitoring equipment for 4 hours (it forced me also to sleep on my back).

The consultant said that, if there are no signs of improvements after testing CPAP for one month, he will prescribe a full overnight sleep study/polysomnogram, as sleep apnea may indeed not be the primary cause of my sleep disorder. Given how badly I tolerated the home sleep study, I am not sure I would tolerate well a full sleep study.

I am indeed based in the UK, and I also have private insurance: this means that I can see some specialists much quicker than on the public service/NHS (which would be entirely free). However, the private insurance only pays for tests and consultations, and does not pay for medication or equipment. It's possible to get a CPAP machine for free on the NHS, but this takes months. My private medical insurance will not reimburse anything on the equipment purchased privately.

[tedtomato]

I also have a Fitbit (Blaze) and my sleeping movements (a lot) hasn't improved since starting on the CPAP. I usually get 4hrs 20mins sleep out of 6hrs bedtime and I usually fall asleep within 5-10 mins. I hope with time that changes.
I'd be interested to see if it improves for you in time when you have things sorted/settled with your machine.

I started measuring sleep quality with my Fitbit Charge HR device. However, the stats are very basic.

I then bought a Jawbone UP3 tracker, which is supposed to have the best sleep monitoring of all consumer trackers. It does indeed show better stats, in term of light sleep, deep sleep and REM (dreaming) periods, and seems to be reasonably accurate (for instance, if I wake up just after REM, I do remember my dreams).

However, I am yet to be able to do a reasonable night with my CPAP machine and mask, so the stats so far haven't changed much.

[Pugsy]

Do you normally breathe through your nose just fine during the day/night?
Is the nasal congestion only rare or chronic?

If the nasal congestion is rare and you normally don't have significant problems with nasal congestion then I would suggest trying a nasal interface mask...and get one where the vented air is diffused because it will help with noise.
Look at the mask in my profile. It's pretty much silent.

I don't know of any brick and mortar place that allows mask trials...here in the US or in the UK.
In the US we can get masks with return insurance but that's not a viable option for people outside the US due to the time limit (30 days) and the fact that customs on either end can significantly eat up those 30 days.

AHI doesn't have anything to do with pressure needs..you can have a very minimal AHI and maybe need pressures in the high teens...or have a really high AHI and maybe only need 6 cm pressure.

With your AirSense 10 Elite you have full data and while the pressure is fixed...it's fairly simple to evaluate the data to see if you need more pressure.
https://sleep.tnet.com/equipment
https://sleep.tnet.com/resources/sleepyhead/shorganize
You are going to need to get some hours of sleep though...to have reliable data to evaluate. When you spend a lot of awake time trying to fall asleep the data can be skewed by flagging of awake/semi awake breathing irregularities.
So you need to figure out what is preventing the sleep...and I know that's easier said than done.

[tedtomato]

Thanks.

I usually have no issues whatsoever falling asleep without equipment (within a couple of minutes of going to bed), so it's just the mask and machine that are preventing me from going to sleep quickly currently. I can sleep with earplugs, so noise is not an issue.

I think the issue is that the full mask is forcing me to sleep on my back, when I usually sleep on my side without equipment. If I try to sleep on my side, the mask starts leaking.

I may have to look at some special pillows, but I am not sure they will allow a full mask to be used on the side. Otherwise, I will need to look for a new smaller mask (nose mask).

Last night, I tolerated the equipment for about 3 hours in total (with one break), and Sleepyhead is still reporting an AHI going up to 6 per hour, so the initial conclusion could be that the CPAP equipment is currently making very little difference to the number of events (compared to the sleep study), or the sleep study underestimated those, and things are improving...

Most of the events reported by Sleepyhead are "Clear Airway" and then Hypopnoena. Only one OSA event was reported last night.

[LSAT]

Thanks.

I usually have no issues whatsoever falling asleep without equipment (within a couple of minutes of going to bed), so it's just the mask and machine that are preventing me from going to sleep quickly currently. I can sleep with earplugs, so noise is not an issue.

I think the issue is that the full mask is forcing me to sleep on my back, when I usually sleep on my side without equipment. If I try to sleep on my side, the mask starts leaking.

I may have to look at some special pillows, but I am not sure they will allow a full mask to be used on the side. Otherwise, I will need to look for a new smaller mask (nose mask).

Last night, I tolerated the equipment for about 3 hours in total (with one break), and Sleepyhead is still reporting an AHI going up to 6 per hour, so the initial conclusion could be that the CPAP equipment is currently making very little difference to the number of events (compared to the sleep study), or the sleep study underestimated those, and things are improving...

Most of the events reported by Sleepyhead are "Clear Airway" and then Hypopnoena. Only one OSA event was reported last night.

I didn't know that the UK had CPAP police that watched you while you sleep. FYI...I use a FF mask and I sleep on my side and sometimes on my stomach without problems....I'm glad I'm not in the UK or I'd most likely be in jail.

[tedtomato]

OK...

The question was: with pillows specifically designed/shaped for side sleeping while wearing CPAP masks, I am not sure if those are designed for the smaller nasal masks in mind, or can also be used properly with full masks.

When I put my head on the side while wearing the full mask, the mask starts leaking very quickly.

Anyway, I have ordered a nasal mask now (Resmed Mirage FX, as well as a head band), which should hopefully leak less when sleeping on the side. I will try with a standard, firm pillow first...

[rick blaine]

Hi tedtomato,

If I can just add a few bits of information to your data base:

1. There are three kinds of events:

- up to 50pc reduction in airflow, even though trying to take a breath;

- up to 90pc reduction in airflow, even though trying to take a breath; and

- no airflow at all, because just plain stopped trying to take a breath (with the implication that either the signal from the brain to the breathing muscles just plain stopped or the sgnal from the brain couldn't get through).

And from your consultant's suggestion of a trial with a fixed-pressure machine, it sound like he thinks it's the first two of the above, and not the third.

However, from what you say in your Monday post, it might be otherwise. Right now, none of us have enough data.

2. While the process of getting more data goes on, can I just say that it is surprising, IMO, that "they" sold you a fixed-pressure machine - because loaning patients a machine to use at home is a better idea - till the medical staff know what's needed.

And apart from the loan/ sell issue, If the purpose of the home trial is further investigation, most experts would say that is best done with an auto-adjusting machine.

If you were being diagnosed by the NHS sleep service unit in my area (Gloucestershire), they would have given you an auto-adjusting machine for one week (in some other UK areas, it's two weeks) before deciding what pressure you need. Fewer than 10pc of NHS sleep-problem patients get an overnight sleep study in an NHS hospital 'sleep lab'. That's held in reserve for more complex or hard-to-diagnose cases.

Loaning patients with an auto-adjusting machine for a week (or two weeks) has the advantage that you get a more representative idea of what's needed when you average the readings over a week, rather than rely on one niight's worth. (And you also don't have the distortion of the sleep being in a strange setting.)

3. You say: "I am not sure how they will determine the optimum pressure adjustment. Do they just keep increasing the pressure until the number of events per night decrease?"

It is possible they are already doing that. The model of machine you have can link up with your doctor's office via the mobile phone network. It can transmit the data it is recording, and it can also receive instructions to raise or lower pressure.

If you look on the front panel, you may see the word "Air" lit up or turned on.

4. When they said "up to 5 is normal", that is the text-book answer. An Apnea-Hypopnea Index (or AHI) of 5 to 15 is considered 'mild to moderate'; 15 to 30 is considered 'moderate to severe'; and over-30 is 'severe'.

It is the policy of the NHS to only treat 15 and above. That is probably why they told you, "Someone with sleep apnea would be 15 or more." Fifteen-and-above has become the UK 'industry standard'.

But that does not mean that someone with an AHI of, say, 10-to-14 doesn't have symptoms, nor that they wouldn't benefit from treatment. It's just that in the UK, they would have to buy their own machine and mask. As you have.

5. My having said all that, it may still be that your tiredness is not primarily due to sleep apnea. And that even if, via treatment, you get that initial 7 down to 2, you may still have some of, or even all of, the symptoms you describe.

If so, you and your doctor would have to look at other possible causes.

So by all means continue the trial. But leave open in your mind that you may have more than one cause for your sleep issues.

[tedtomato]

Hi Rick,

Many thanks for taking the time to provide all that information.

I went the private route to see a sleep consultant, as it was much quicker (by 6 weeks) and my insurance was happy to pay for the consultation. They also paid for the home sleep study to be done privately (was done very quickly).

When we reviewed the results, the sleep consultant said that we could try CPAP for a while, to see if it works, or do a full sleep study, at the clinic.

He gave me the choice of either going the NHS route to get the equipment (but it could take months), or buying the machine and mask, and they would give me a refund on the machine after one month, if it made no changes/improvements. The mask was not refundable (as expected).

They gave me a brand new Airsense 10 machine, but it is a CPAP model, as opposed to the APAP one. I don't know why they wouldn't give the autosense model, which seems to be hardly more expensive, but would give at least some indication on the right pressure required. As you say, lending an APAP machine would make sense too.

They set my machine to a low pressure, but there was no test done to get to a specific number. I guess it's more trial and error, and check after one month the data.

I know the machine I have has got built-in mobile data connectivity, but I don't think they are fetching the data remotely, or making adjustments, until the next appointment.

As you say, I am not used to breathing through a machine yet, and there is not enough data to get to some diagnostic. Hopefully, I will either see some improvements myself in the next few weeks in term of sleep quality, or we will have to proceed with a more complete sleep study.

I have very disturbed sleep (lots of turning), so I do believe the tiredness comes from a sleeping disorder, although it may not be OSA, and therefore CPAP may do nothing or make me more tired for a month... At least, the machine would have captured some more data.

[rick blaine]

Hi tedtomato,

I started out outside the NHS system too, and I had to make my share of try-stuff-and-see-what-happens progress for a while.

I hadn't discovered this forum, back then, and certainly had nothing like the Sleepyhead shareware available now.

The only info I had to work with was the numbers on the screen of my Philips Respironics 551 machine.

And while my AHI was much better than my sleep study, it was unusual for it to be much below 10. I felt better - but still wasn't feeling great.

From the hard-copy manual which came with my (self-bought) machine I knew that settings could be changed - it just didn't say how. And long-story-short, by trying a few things, I found my way into the clinician's menu - where you can change the pressures.

My minimum was at 4cm. So I upped it to a cautious 6. Tried that for two or three nights. Numbers a bit better.

Then I just as cautiously took it up to 8, for two or three nights. Numbers more better - but now a little uncomfortable.

Took it back down to 7. Comfort easier - but AHI up again.

Back up to 7.5. Result.

Anybody who's trained in gunnery will know that what I was doing was 'bracketing the target' - and US readers will say I was 'doing a titration'. The point of my saying this, tedtomato, is that over a month, you could do the same.

If you search on this forum for a copy of the manual for your machine, so that you can get into the clinician's area, you could do something similar - even though it's a fixed-pressure machine. The key points being (a) make each change a relatively small step, and (b) see what effect that has over two or three nights - because one night on its own might be an anomaly.

The value of so doing is that by the time you next get to see your consultant, you might have found if sleep apnea is a factor - and even if it is not the only factor, you might also have discovered that treatment at an appropriate pressure brings a degree of relief.

[tedtomato]

Thanks Rick.

I have found very easily on how to get to the clinical settings on the Resmed device (two buttons to press at the same time), and I have already experimented with a few minor settings that were hidden away.

However, if I change the pressure, then it will show on the detailed stats captured on the device (all changes to settings are also captured), so I am a bit reluctant to do so...yet, at least during the first month, and before I see the consultant again and they analyse the data.

Next steps for me is to try to get some decent amount of sleep with the device and mask on (trying a less intrusive nasal mask soon), and get more data captured.

It has been very hard so far to be able to sleep more than 2 hours with the full face mask on (forcing me to sleep on my back), so I don't think I have tested the machine properly yet. I guess there is a case for doing a month-long trial, if it takes a couple of weeks to just get used to it.

[I've Been Tired]

OK...

The question was: with pillows specifically designed/shaped for side sleeping while wearing CPAP masks, I am not sure if those are designed for the smaller nasal masks in mind, or can also be used properly with full masks.

When I put my head on the side while wearing the full mask, the mask starts leaking very quickly.

Anyway, I have ordered a nasal mask now (Resmed Mirage FX, as well as a head band), which should hopefully leak less when sleeping on the side. I will try with a standard, firm pillow first...

A couple of things that reduce my leaks when I sleep on my side with a ffm are a leak strap and adjusting the head gear. If I moved the strap that goes over the top of my head down towards the back of my head it would tighten the mask.

[cands]

A couple of things that reduce my leaks when I sleep on my side with a ffm are a leak strap and adjusting the head gear. If I moved the strap that goes over the top of my head down towards the back of my head it would tighten the mask.

Yep, this works for me too.

I found the Simplus mask difficult for side sleeping. I have had much more success with the Amara View. To the OP, you might want to give it a try.