Hi from a Noob

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
midnightpumpkin
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Hi from a Noob

Post by midnightpumpkin » Wed Oct 22, 2014 2:22 pm

Hello there

I'm so happy to have found this place

so for the last 6/7 years or so, I've been battling constant fatigue and a decline in focus, memory and all that.
I got checked for all sorts of things under the sun, but nothing "clicked".
I finally got tested for OSA about 6 weeks ago.
My symptoms seem to be way of of proportion for an AHI of 7, but my sleep specialist says it's a common thing for women (:-( )

Last night was my first night on CPAP at home. It went really well /no problem sleeping through the night and the machine said that no leaks were detected. The AHI went down to 0.3 - so Yay

I didn't get the massive improvement that I was hoping for though

Today, I was so tired, I went for a little "nap" at lunchtime.... woke up 4 hours later - oops! (Luckily I had decided to turn on the machine for the nap, so I didn't have 4 breathless hours...

Is it normal for the fatigue to get worse initially?
(The sleep tech said it means I'm paying off my sleep debt, but I'm not sure whether that's true, or she just wanted to give me hope...)

Also: does the face get used to the mask at some stage? While it was fine during the night, I have big red and sore patches from the pressure of the mask...
Resmed Lumis 100 with humidifier. (This wasn't an option in the equipment dropdown)

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Julie
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Re: Hi from a Noob

Post by Julie » Wed Oct 22, 2014 2:25 pm

Which machine (model # etc.) are you using? What type of mask? And what are your pressures set at? Do you use the ramp?

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Sheriff Buford
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Re: Hi from a Noob

Post by Sheriff Buford » Wed Oct 22, 2014 2:28 pm

Welcome to the forum. It looks as though you are adjusting very well and better than most. Yes you will get used to the mask... give it a while. At some point, you won't realize you have it on. It also takes a while to get that "ah-ha" moment. Unfortunately, some folks never get it or it may be so gradual, that you really don't notice it. You are doing great... give it a while and work all your issues here.

Sheriff

midnightpumpkin
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Re: Hi from a Noob

Post by midnightpumpkin » Wed Oct 22, 2014 2:56 pm

I'm using the Resmed Hi5 at a setting of 12.
The ramp is set to 20 minutes.
I'm not really sure which mask it is. (It's all the way upstairs and the couch magnets are very strong today). It looks a bit like this one (https://www.cpapclinic.ca/CPAP-store/Re ... logID=1258), but the headgear has magnets on the lower part that secure it.

Thanks, Sheriff The tech said that I was the best informed patient she's ever had... I put the machine on every hour for 20 minutes to get used to it while awake, so by the time I went to bed, I didn't mind at all.... I actually slept through the night with no trouble.

I was secretly hoping for the A-HA and was a bit disappointed this morning, when I actually felt worse... I really hope that this kicks in soon. If I don't get my head in order, I'm in danger of losing my job. I've barely been able to hold it together... Total teflon brain (nothing sticks) so I'd say I'd notice even a gradual change over time

Thank you for giving me hope... I really need it at this stage!
Resmed Lumis 100 with humidifier. (This wasn't an option in the equipment dropdown)

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Pugsy
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Re: Hi from a Noob

Post by Pugsy » Wed Oct 22, 2014 3:06 pm

midnightpumpkin wrote:I was secretly hoping for the A-HA and was a bit disappointed this morning, when I actually felt worse...
I wish I had a dollar every time I heard that one. We didn't get in this shape overnight but we sure hope to fix it over night...and I did the same thing...just knew I would be one of the lucky ones ...but it wasn't meant to be.
A few lucky people do get that overnight miracle but most of us weren't that lucky.
There's so much more to feeling better than slapping on a mask and getting a nice low AHI.
Wish it were that easy.

Though we sure don't expect to feel worse initially.
How many hours of sleep did you get? Were those hours of sleep fragmented with a lot of little wake ups for some reason or other? I know for the first few nights I woke up a gazillion times just to feel that strange being on my face called a mask.
It wasn't really bothering me but it was just .....there.
midnightpumpkin wrote:I'm using the Resmed Hi5 at a setting of 12.
The Hi5 is the humidifier and not machine model name. The machine model name is up by the on/off button on the blower unit. Since you have AHI available...Elite or AutoSet or hopefully not the Escape Auto.

I think the mask is the hardest part to this therapy. Finding the right one that suits our needs and preferences that doesn't bug us or tear up our face can be a challenge.

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kteague
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Re: Hi from a Noob

Post by kteague » Wed Oct 22, 2014 3:14 pm

Hello and welcome. You may find a mask liner will help your skin when the mask rubs. Discomfort can lead to not being able to sleep well. At first the mask feels foreign, but over time your brain will get used to it and not be on alert that something is on your face. Feeling an increased desire for sleep is sometimes described as sleep debt. Another way to think of it is recovery. Any time we have been through a trauma, it is recommended to get plenty of rest to allow the body to heal. Untreated sleep apnea is (usually) a long standing assault of the body that has robbed you of quality sleep. Once the brain knows it is now safe for you to sleep and begin recovery, it seems reasonable to me to expect to desire what one has been lacking until things level off. In my early stages of recovery I allowed myself to sleep as much as my body told me it needed. At some point the intense desire to sleep began to lessen. However, I would suggest not allowing yourself to sleep willy-nilly if it interferes with your ability to sleep at night during your regular sleeping hours, or with your responsibilities. At any rate, I think a bit over the number of hours needed for maintenance could be helpful in recovering. Not science, just my perspective based on my personal experience.

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midnightpumpkin
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Re: Hi from a Noob

Post by midnightpumpkin » Wed Oct 22, 2014 3:31 pm

Oooops... It's the AutoSet

I slept through the night... don't remember waking up once! It took a good hour or so to fall asleep, but once I was gone, I was well and truly out for the count.
It was about 9,5 hours on the machine over night and 3,5-4 during the...ahem...snooze.

Luckily, I took two weeks off work to get used to this, so maybe by the end of it, I will be seeing the light.

The mask doesn't actually disturb me at all... it's quite comfy and I'm used to sleeping with an eyemask It's only sore when I wake up in the morning (and the whole day after... it's nearly bedtime now and it's still irritated from the nap....

Where do I get these mask liners? Do they help with the pressure marks and the skin irritation?
Resmed Lumis 100 with humidifier. (This wasn't an option in the equipment dropdown)

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Julie
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Re: Hi from a Noob

Post by Julie » Wed Oct 22, 2014 3:37 pm

So, things ramp up over 20 mins, but starting from what number to what level above that?

midnightpumpkin
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Re: Hi from a Noob

Post by midnightpumpkin » Wed Oct 22, 2014 3:40 pm

Starting at 4 and ramping up to 12 over the 20 minutes.
Resmed Lumis 100 with humidifier. (This wasn't an option in the equipment dropdown)

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Julie
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Re: Hi from a Noob

Post by Julie » Wed Oct 22, 2014 5:18 pm

So you're definitely on straight Cpap vs Auto? But you have an auto machine... you normally would have two pressure settings, a low one (e.g. and a higher one (i.e. 12), so...?

One thing - it doesn't matter if you're diagnosed with 'severe' OSA or 'mild', the pressure needed to keep your particular airway open has nothing to do with severity of diagnosis - that's about how many events you had per hour overnight, and if you yourself need a pressure of e.g. 12 to keep your airway open, then you do, doesn't matter if you almost-didn't even register any events or not.

But... this is important - do you sleep on your back? I ask because a) it's the worst position to provoke more apneas, and b) if so, and if you turn out to have next to none on your side, you might not even need Cpap because you could fall into the category of 'positional apnea', and if you can keep off your back, and see if you have any events at all, maybe wearing an oximeter to check if your oxygen drops below 88 for any length of time at all, you could possibly just be in luck. But if not, then not, of course, but I'd want to investigate if I were you, with such a low study number.

midnightpumpkin
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Re: Hi from a Noob

Post by midnightpumpkin » Wed Oct 22, 2014 5:41 pm

Ah I see... sorry. I may have gotten confused there.
Yes, there are two settings: 12 for inhaling and a reduction to 9 when exhaling. Is that what you mean?
Other than that it doesn't fluctuate.

The study I did was quite extensive (I guess they all are) and the events occurred regardless of position (They had a timed chart with my sleeping positions from the study and the apnea timeline just underneath). I rarely - if ever- sleep on my back. I just find it really uncomfortable.
I was lucky to get in with one of the best specialists in the country - granted though, Ireland is tiny, so there aren't that many to choose from

My sleep specialist says that the low number may be due to the whole being a woman thing. There are some recent studies out that suggest that women are often affected differently by OSA than men. She says that, even if you hardly register, the symptoms can be fairly severe. The tech explained that Resmed have been working on a new algorithm created especially for women in these cases and I'd be a prime candidate for one of those new machines, but they didn't have any yet. (I think I saw a thread on here discussing the very machine, but haven't had the headspace to read through it thoroughly)

So I'm not lucky enough to not need the CPAP... but I'm ok with that. As long as I'll be able to live my life again at some stage, they can set down a brassband next to my bed...
Resmed Lumis 100 with humidifier. (This wasn't an option in the equipment dropdown)

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Julie
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Re: Hi from a Noob

Post by Julie » Wed Oct 22, 2014 6:04 pm

Uhhh - I think you don't get it (which is completely normal and understandable if you never got told!). The settings on an auto machine represent the lowest pressure you need to keep your airway open, and the highest that actually occurs when you're asleep (nothing to do with the ramp tho'). There's no point in prescribing e.g. a low # of 5, if you hardly ever need less than 9 all night to do the job. The high number is not as crucial, so most of us set our machines (after hearing MD's prescription - which is too often useless as it refs machine default low of 4 and high of 20, rather than what we titrated at study!) to a few #'s more than the low and a few above it, but it can be set higher with little negative effect - hence my example of 8 and 12 (quite common actually as so many of us hover around 10 for so much of the night). Does that make any more sense? If you were to download the free software from e.g. Pugsy's postings (below them) and track your own progress each night (more likely weekly or less in future), you'd see that the machine records what level (8,9,12) you hang around most (90-95%) of the night, and that's a loose titration, so you can use that to set your own pressures in future depending on what the software tells you about how you're doing. And part of the reason we don't leave machines to start at a pressure of 4 (rather than 7 or 11, etc.) is because if most of your 'events' (95%) occur at 12, by the time the machine gets up there from 4, it's too late to be effective, but doctors don't really understand the technology of the equipment too well, so just prescribe things left 'wide open'.

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palerider
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Re: Hi from a Noob

Post by palerider » Wed Oct 22, 2014 6:17 pm

Julie wrote:Uhhh - I think you don't get it (which is completely normal and understandable if you never got told!). The settings on an auto machine represent the lowest pressure you need to keep your airway open, and the highest that actually occurs when you're asleep (nothing to do with the ramp tho'). There's no point in prescribing e.g. a low # of 5, if you hardly ever need less than 9 all night to do the job. The high number is not as crucial, so most of us set our machines (after hearing MD's prescription - which is too often useless as it refs machine default low of 4 and high of 20, rather than what we titrated at study!) to a few #'s more than the low and a few above it, but it can be set higher with little negative effect - hence my example of 8 and 12 (quite common actually as so many of us hover around 10 for so much of the night). Does that make any more sense? If you were to download the free software from e.g. Pugsy's postings (below them) and track your own progress each night (more likely weekly or less in future), you'd see that the machine records what level (8,9,12) you hang around most (90-95%) of the night, and that's a loose titration, so you can use that to set your own pressures in future depending on what the software tells you about how you're doing. And part of the reason we don't leave machines to start at a pressure of 4 (rather than 7 or 11, etc.) is because if most of your 'events' (95%) occur at 12, by the time the machine gets up there from 4, it's too late to be effective, but doctors don't really understand the technology of the equipment too well, so just prescribe things left 'wide open'.
OP could have their autoset in cpap mode, 12 pressure with an epr of 3, that'd fit what they're saying.

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midnightpumpkin
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Re: Hi from a Noob

Post by midnightpumpkin » Wed Oct 22, 2014 6:27 pm

Palerider is right it's set to straight cpap, rather than auto. The machine can do it, but apparently it's not the way for me to go... At least not yet... So it's a constant 12 (with a reduction to 9 on the exhale)
Resmed Lumis 100 with humidifier. (This wasn't an option in the equipment dropdown)

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Julie
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Re: Hi from a Noob

Post by Julie » Wed Oct 22, 2014 6:58 pm

OK, enjoy!