So I am new to this CPAP malarky

[Ryands]

Hi All. I was diagnosed with mile to moderate sleep apnoea via a oximeter test a few months back, thanks to my wife moaning about my snoring, I started on my CPAP 6 days ago.

And I have to say I have never felt so tired in my entire life. With the apnoea I am grumpy, forgetful and lethargic, but this week on the CPAP I have never felt so tired. I downloaded that sleepyhead software and it says my pressure is going from 4cm to 7cm (mostly staying at 7 all night) and I am getting some snoring and between 4.5-8.5 AHI per night. Leaks are steady, and stay around 20 I think it was on the graphs (which is on the recomended line I think.)

I am going back to the hospital tomorrow for an update and tweaking of the machine, presumably they will increase the pressure in incremental steps to see how I react, but I was just wondering if this is normal to feel so exhausted. I think I am actually getting more sleep than normal, and I certainly seem to be waking up less, but I have gone from grumpy to almost non functioning. Is this just an adaptive phase? I find the CPAP is actually quite comfortable and relaxing and doesn't seem to impede my sleep.

I've been given a Respironics System One, with a Quattro FX FFM, I had dry mouth on day one, but I find the humidity setting 3 seems to be much better.

[zoocrewphoto]

It is normal to struggle with it at first and feel more tired. It is not normal to sleep with an alien on our face, so that tends to make us hypersensitive to all the sensations. Also, we have spent years with sleep apnea. Our brains have kept us alive by detecting apnea events and waking us up to get us breathing again. Now we put on a cpap machine and expect our brains to *trust* the machine to do the job it has been doing all this time. It is really hard to relax and let it do its job when we aren't sure yet that it will.

Hopefully, your doctor will decide to raise your minimum pressure a bit. If not, and you are still having problems, we can help you here. A lot of people struggle with pressures of 4 and 5, and if it needs to get to 7, it will allow events while it gets there. It doesn't know to go straight there and stay there most of the night.

Cpap has a steep learning curve and can be very exhausting to adapt to. But once you get the settings adjusted to the right settings for you, as well as the right mask, and get some real sleep, you will feel much better. It can be quick for some people, and take a long time for others. Hopefully, you will notice some good improvements with a few changes soon. It is tough to struggle through, but well worth the effort.

[archangle]

Welcome. Sorry you had to join us. Please keep us informed of your progress.

Sometimes, even if everything is "right" with the CPAP, new patients feel really tired for a while. Your body has to readjust to not being strangled multiple times every night, getting lots of stress hormones, adjusting to low oxygen, etc. Your brain has to learn to sleep with your different conditions and with the alien facehugger on your face.

However, it also may be that you need some tweaking of your therapy. Keep at it.

[purple]

Did you have an overnight sleep titration in a sleep lab? Did the staff seem competent to you?

[Ryands]

Nope. The diagnoses was based on my wife's description of my sleeping, my daytime / waking symptoms and an overnight home oxygen finger testing* thing test. The specialist (who is also my asthma specialist who I have found to be rather excellent) said that was enough for a diagnoses.

*Not the official term.

[purple]

Huge difference between diagnosis, and a "titration study (properly done in a good sleep clinic, which as some here can testify, did not happen for them although they spent the night and paid the big bill).

The titration study should give accurate numbers as to how to set the machine for you to get sleep. So I suspect the issue is you have the wrong settings. If the pressure is too low, then you will not get rest.

Knowing you have asthma is also clue that you need a close look at your settings versus whatever is happening. While it is odd that having a low AHI and not getting rest go together, there are some scenarios that could cause that.

I have to admire that you have gone through the difficulties, and not gotten rest, and not quit.

Now the tough advice, I suspect you need to find a way to pay for a good titration study. That is, the advice is, get a titration study, and perhaps, the doc would put on the study intent to see if you need a bi-level machine. Usually one does not look at a bi level machine until the pressure gets above 12, and there is some issues with what happens with more pressure and your asthma. But you may need the pressure to inflate you lungs better. ??? A question best solved by someone looking at you all wired up to a computer in a sleep lab.

Trying to tweak the machine on your own by posting the reports on the forum here seems to be a lot more weeks of pain. Plus with asthma, there are more complexities than can be easily resolved by looking at the reports as like just simple OSA..

[Ryands]

Well the current scenario is that I am to go back into the hospital on a weekly basis for updates. This is through the NHS here in the UK, all the nurse said to me to be honest is "here is the machine, this is how it works (she did spend a lot of time on this to be fair and went through leaks etc in detail)" and to pop back in a week. She said that they started on the lowest setting, and would re-evaluate after that.

I gather as my apnea was low they would test this first, prior to sending me on more detailed studies. They do tend to rule out the cheaper options first.

I think the reason for the bipap is my asthma.

To be honest I have known I have had apnea since I was around 20 but only just now (age 35) actually bothered to look into it. I am famous for being the person that the neighbours can hear snoring... And I have to stick with it as the health benefits and the lack of my wife stabbing me so she can get some sleep make up for any discomfort.

[SleepyToo2]

If your machine is set to a maximum pressure of 7, and it is staying there most of the night, you probably will get an increase in pressure at your next visit. If it really is not high enough, it could be that you are actually getting more problems because of the inadequate pressure than you were getting before, which could be why you feel worse. Other signs of pressure that is too low include continuing snoring. Without the study with the machine (the titration study), it is impossible to know what your pressure should be set at, hence the adjustment phase. One thing you might want to suggest is that they set it to a fairly wide range - say 6-12 to start with, and see how you get on with that. If you do OK, they can narrow the range around the pressure that you spend most time at. Good luck, and keep reading on this site. You will learn a lot that will help you in your visits with the staff at your local hospital.

[kteague]

Early on, once I was able with CPAP to get some sleep not tormented by apnea, it seemed my body leaned into that and slept very heavily for quite a while. Once I felt a bit recovered from the years of miserable sleep, I began to need fewer hours until it normalized. Hopefully when you visit your provider they will increase your pressure range. I personally would need that bottom pressure to be higher as 4 is not comfortable for me. Maybe just a bit of pressure adjustment will be the key to you getting more restorative sleep.

[Pugsy]

That red line at 24 L/min in SleepyHead is for ResMed machines.
Your profile shows a Respironics machine so you need to adjust the red line up to around 80 or 90 L/min or turn it off.

[purple]

The machine shown in your profile is not a Bi Pap (which is PR lingo for a bi level machine) As bi level machines cost more, qualifying to get insurance to pay for it requires some hoop jumping.

There is a difference between Flex, and a Bi Level machine. The obvious being that Flex, or EPR, (depending on which company manufactured the machine) is limited to three points pressure. By Definition, to use a bi machine in Bi Level mode the difference is at least five. I am pretty sure that also, if one looked at the way the machine increases pressure (on a graph) the change of air pressure is different. but I have not seen proof of that. A Bi level can have two different fixed pressures, one for inhale, another for exhale. (and yes, a bi level machine can be set to auto as well, so it can seek the pressure it thinks is needed)

I do know a sleep doc told me that to use a machine on auto, one needs to separate the beginning pressure and the top pressure by several points as the software had problems if the points were too close together in making decisions. So like, I am guessing the hospital increase both the bottom and the top pressures you are using. As long as the bottom pressure is too low, then you will feel like you are suffocating, even if you are awake.

I dislike the idea of setting a machine from 4 to 20 auto in that, in most cases, the pressure is too low for a long time, then the machine on auto starts chasing leaks created by higher pressure.

There is a kind of Central Apnea caused by someone who can not exhale against pressure, which is the problem of pressure being too high. I do not know about the consequences of the pressure being too high versus some lung problems.

If NHS has a bug up their _____, about doing a proper sleep study, I think in your situation, I might opt for pushing for a setting of the lower being at least 7, and the upper being 12. Also guessing that you feel you can exhale against that pressure, and your specialist doc feeling that you will not damage your lungs with a pressure of 12.

It is my hunch, not that a doc has verified to me, that a Bi Level can be used with the lower pressure to the pressure needed to stent the air way open, and, as I have a really narrow space in my throat which restricts how much air I can pull, the higher pressure to fill my lungs with that narrow airway. that if the higher pressure is too high, then the machine might switch between inhale and exhale before my lungs are full.

While It may not apply to you, I do not do well with a machine set to auto. One of the reasons that using a machine on auto is not a substitute for a well run sleep study.

A number of folks here found they had more complex issues than simple OSA. They had to diagnose themselves after their sleep doc / with overnight studies failed to recognize all their breathing difficulties. Perhaps because for some, much of their sleep study is occupied with pressures too low to stent the airway open, and then leaks. Much of what a sleep doc tries to do at first is find the right pressure, then let the patient pick the mask they feel comfortable with, and then get their leaks under control. Which can take a few weeks of actually doing therapy.

No one should have to live through with what you have had to. Using the machine getting leaks down and still not feeling rested. Altho there is the concept of sleep debt that some have to pay off before feeling improvement.

Keep in mind that some here will post suggestions upon their experiences with simple OSA. In contrast, look at the wiki explanation of Cheyne Stokes.

Best wishes.

[Pugsy]

If you are unsure as to exact model of machine...look on the bottom of the blower unit for a 3 digit model number which may have DS or REF in front of it. Tell us the model number and we figure it out. Respironics machine choices in the equipment menu are confusing..

BiPap would be a 650 or 660 or 750 or 760 number...with the 60 series being the newest.

Your AHI is still too high but any idea on what needs to be done can't be made based solely on the AHI number. Need to see the detailed reports and get an idea what the event category breakdown is before doing anything. And first thing is figure out what machine you are using as this points to an APAP machine setting and not BiPap.

my pressure is going from 4cm to 7cm (mostly staying at 7 all night)

I suspect you have either a 550 or 560 model machine and right now you have a 550 machine chosen....

APAP and BiPap are 2 different types of machines.

[Ryands]

If you are unsure as to exact model of machine...look on the bottom of the blower unit for a 3 digit model number which may have DS or REF in front of it. Tell us the model number and we figure it out. Respironics machine choices in the equipment menu are confusing..

BiPap would be a 650 or 660 or 750 or 760 number...with the 60 series being the newest.

Your AHI is still too high but any idea on what needs to be done can't be made based solely on the AHI number. Need to see the detailed reports and get an idea what the event category breakdown is before doing anything. And first thing is figure out what machine you are using as this points to an APAP machine setting and not BiPap.

my pressure is going from 4cm to 7cm (mostly staying at 7 all night)

I suspect you have either a 550 or 560 model machine and right now you have a 550 machine chosen....

APAP and BiPap are 2 different types of machines.

I did look this up. And it took me ages to figure out the machine. I am pretty sure it ended in 561.

I have spent 3 days skimming this forum, and am still trying to get my head around everything. It is an APAP I beleive (I need to get used to not using the generic CPAP term I suppose.)

Edit: I have no idea from the list of choices which one this is. It doesn't help that externally all these Respironics Series One look the same as far as I can see.

[Pugsy]

Model 561 (the 1 is usually the number associated with Canadian or UK shipments) where as here in the US we get 560 but they are the same machine.

The correct choice in your equipment profile would be
PR System One 60 Series Auto Cpap
PR System One 60 Series Heated tube humidifier with heated tube (even if you don't have the heated tube which is optional).

It helps us to know exactly which machine you are using. It would also help if you would choose the text option because when using icony they all look a like. See how I have my equipment profile shown.

You don't have a BiPap ....you have an APAP.

The NHS in the UK gave you a great machine....hopefully it is permanent and not for just figuring out pressure needs
They also (from what others in the UK have told me) really get their panties all in a wad if you going changing settings all by yourself and since they are monitoring you on a weekly basis right now.... how about we just look at the software results to get an idea what they should be doing for you with that higher than we would like to see AHI?
You may simply need more minimum and maximum pressure than what you are using right now.
But if the bulk of that AHI is clear airway events then maybe a different tactic....so get Sleepyhead and let's see what is going on.
I have links to SleepyHead in formation in my signature or use Robysue's link.

Then post an image of a typical detailed report for us to see so we can get an idea what is going on.
How to post reports explained here along with some examples
Screen shot thread viewtopic.php?f=1&t=81072&p=737779#p737779

[Drowsy Dancer]

I must say it is fascinating to read how diagnosis/treatment of OSA is managed in different countries. It's sort of like they're doing an extended home sleep study on you. With the number of weekly followup appointments, I'd think the cost to the NHS would be as high as a laboratory sleep study, but then NHS hasn't hired me to do cost-benefit analyses.

As Pugsy pointed out, you have a great machine and will be able to pull lots of useful data off it. I would expect that they will raise your minimum pressure, and once they do you will start feeling better.

How long will you have weekly appointments?