OK, Sleepyhead Results!

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
houndlover
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OK, Sleepyhead Results!

Post by houndlover » Sat Apr 19, 2014 5:22 pm

OK, so I'm new here. I've been using PAP for just over 2 weeks this time. I was diagnosed originally as 'mild' about 6 years ago. Tried CPAP, hated it, quit after 6 months. Enter the last two years where my fatigue had become overwhelming. I finally went to a sleep doc because I just couldn't function in a normal life anymore.

So, I haven't had any 'angels singing' type feeling like some. My mask is ok, my machine is quiet. I can't sleep with my face buried in a pillow anymore which stinks. (I was someone who laid on their side to fall asleep). I seem to wrestle the hose a lot, end up hitting a dog in the middle of the night a few times flinging it around in frustration. I wake up more now. I never used to wake up at night (that I knew). I used to have super crazy, vivid dreams-haven't had one since starting PAP. I'm still really tired. Still need to nap although I can tell it is somewhat better as I only need one nap instead of two on my days off. I keep hoping that one day I'll wake up and think "man, that was worth it!" but it hasn't happened yet.

DME company and doc are pretty good. I had a visit with doc 4 days after starting...was having a horrid time of it with the CPAP pressure (was 16). He told me I could look online to find out how to change my machine from a CPAP to an APAP (10-20) and that is much better for me. DME set me up with a data machine, heated hose, and let me see a few different masks from what I tried in my sleep study.

So, I was told I needed a chin strap but wasn't given one. So, for 2 weeks have just been using my nasal pillows, once switched to APAP the dry mouth has improved a lot. Last night I used some old panty hose to make a chin strap to see how different things would be and I don't think they really are so I may not be opening my mouth too much.

First, the results last night, when I had my "chin strap":

https://www.dropbox.com/s/h2ycbcpup6gc6 ... .37.39.png
https://www.dropbox.com/s/l04vm3arwyi21 ... .36.44.png

Random night:
https://www.dropbox.com/s/797vtniqosxps ... .06.18.png
https://www.dropbox.com/s/42also4vaxuhk ... .06.34.png

I think my leaks are a little better but even without the strap, they don't get over 24 which I read is the threshold for a 'large leak' for my machine. Looking at my pressures I wonder if I need the minimum lower than 10? It seems to ride that a lot. I'd post my 'statistics' page but my first few days on CPAP really skew everything. I had leaks averaging 30 at some times. I just don't think I needed my machine blasting the tornado down my throat.

My pretreatment AHI was 82.

So, IDK, should I feel better? I've been reading I know having an AHI less than two is really good (highest has been 1.41). There were a couple nights I only wore it a couple hours then tore it off in my sleep. But, if I woke up and had at least 2 hours left in my night I have been putting it back on.

Really, I am wanting this to make things better for me. I don't feel a whole lot better and I would probably quantify my sleep as worse now than before. I can't point to anything that causes it. My mask is ok, I just am not used to sleeping tied down. The tube is constantly shifting and moving. I used to like to toss from side to side a few times when I was getting ready to go to sleep. It is sooooo hard to have to lay still. Not sure if I can get used to that.

So yeah, this was part rant and frustration, part making sure I am reading the Sleepyhead stuff correctly.

library lady
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Re: OK, Sleepyhead Results!

Post by library lady » Sat Apr 19, 2014 6:07 pm

Actually, your leak lines look good to me, I wish mine looked that good. I'm a relative newbie, been on cpap for just a little over 2 months, and I'm sure others who have more understanding of the sleepyhead graphs will be along with more specific help for you. The leak rate for your particular mask will make a difference in the way you look at that graph.

I am a side sieeper, use a full face mask because I'm a mouth breather. I sleep at the edge of my tempurpedic pillow, and it works well for me. I'm dealing with my remaining issues one at a time to get optimum results though my AHI over 67 days is 2.8 so I know I don't have to worry about that. It rarely gets up to 5, which is the magic number.

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Pugsy
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Re: OK, Sleepyhead Results!

Post by Pugsy » Sun Apr 20, 2014 12:48 am

You have a Respironics machine. It reports total leak which is the mask's expected vent rate plus any excess leaks.
Your large leak territory is going to be somewhere around 80 to 90 L/min...you have a long way to go before you get there. You never really got close on the 2 examples you showed.

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thesleepermustawake
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Re: OK, Sleepyhead Results!

Post by thesleepermustawake » Sun Apr 20, 2014 5:08 am

Welcome houndlover,

My situation is very similar to yours, I started using the APAP just about a week ago, and I don't feel a drastic improvement in my general energy level. It might be partly due to the painkillers I'm on for my herniated discs, so I stopped taking them to see if that's the case.
I think waking up a lot due to not getting used to sleeping with the mask is probably the cause. Even though we don't have apneas anymore, we're still waking up often, so our quality of sleep is not optimal.

houndlover
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Re: OK, Sleepyhead Results!

Post by houndlover » Sun Apr 20, 2014 7:20 am

Thanks! I thought everything looked good but I've read about so many issues and such that I just wasn't sure.

I know this will take some time to get used to. I'm going to stick it out. But right now...I'm off to try some caffeine to wake myself up so I can get to work!

pbriggs
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Re: OK, Sleepyhead Results!

Post by pbriggs » Sun Apr 20, 2014 8:05 am

Hello houndlover
If I am speaking what you already know, I apologize in advance...

With a pretreatment AHI of 82 you really should try to keep the mask on all night. Remember that this number is saying that you basically stop breathing 82 times an hour! If you can get a copy of your sleep study, take a look a how low your oxygen levels were pretreatment and compare that to the oxygen levels during treatment. The body needs oxygen to heal and perform basically any functions.

When you stop breathing the body reacts to this by partly waking you up so that you start breathing again. This shock to the body to awake enough to start breathing is not so good for our long term health. This is added stress to the body overall and to the heart.

For tube management - try searching this site on the subject as I am sure there is a lot of advise. Many use various forms of tube management such as the hosebuddy = https://www.cpap.com/productpage/HoseBu ... ystem.html - there are many options available.

I am also a side sleeper most of the time. I found that the mask choice has a big difference in if it will work well for side sleeping. I see you use the airfit P10, I would expect this to work well for side sleeping. I do like library lady said - I sleep of the edge of the pillow.

Good luck and try to use the machine as much as you can - even for your naps...

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robysue
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Re: OK, Sleepyhead Results!

Post by robysue » Sun Apr 20, 2014 8:17 am

houndlover wrote:So, I haven't had any 'angels singing' type feeling like some.
Actually that kind of a response to CPAP----particularly after only a coupe of weeks is really very, very rare.

Many people NEVER have this kind of feeling. Rather what we notice is a very gradual improvement in how we feel over many weeks and many months. But we eventually realize that things are a whole lot better than they were.

And it's not uncommon for things to get worse before it gets better: It takes a while to learn how to sleep well with a six foot hose attached to your nose. And for many people, starting to feel good only starts after they've been sleeping well with the machine for several weeks to a few months.
I finally went to a sleep doc because I just couldn't function in a normal life anymore.
and
Really, I am wanting this to make things better for me. I don't feel a whole lot better
You say you "dont feel a whole lot better." Does that mean you feel marginally better in any way?

Think about each and every symptom (separately) that collectively lead to the fact that you "couldn't function in a normal life anymore" before starting PAP. Assess each of those symptoms separately and rate them on a simple (subjective) scale:

-2 = MUCH WORSE than prior to starting CPAP
-1 = Somewhat worse than prior to starting CPAP
0 = No real change since starting CPAP
1 = Some improvement since starting CPAP
2 = Substantial improvement since starting CPAP

Right now you probably have a bunch of 0's, some -1's and (maybe some -2), and maybe only one or two +1's and no +2's on the list. You also write:
Still need to nap although I can tell it is somewhat better as I only need one nap instead of two on my days off.
So "need to nap" is one symptom that on the rating list definitely warrants a +1. In time that need to nap may go away completely. (And by the way, do you use the PAP with the naps? You should you know.)

Periodically re-rate everything without comparing it to the last list. I'd suggest maybe rating everything once a week or so. Over time the number of +1's should increase and the number o f-1's and -2's should decrease. You may never get a lot of +2's, but if the +1's outweigh the -1's and -2's, then PAP is doing something positive for your quality of life in the long run.

In my own case I'm 3 1/2 years into PAPing, and on my personal list, there's only one consistent +2 and I didn't even notice it was happening until about 4 or 5 MONTHS into PAPing. There are a bunch of +1's and, alas, there are still several 0's and even one or two -1's. But overall, the positives out weight the negatives and so I keep on PAPing.
and I would probably quantify my sleep as worse now than before. I can't point to anything that causes it. My mask is ok, I just am not used to sleeping tied down. The tube is constantly shifting and moving. I used to like to toss from side to side a few times when I was getting ready to go to sleep. It is sooooo hard to have to lay still. Not sure if I can get used to that.
and
My mask is ok, my machine is quiet. I can't sleep with my face buried in a pillow anymore which stinks. (I was someone who laid on their side to fall asleep). I seem to wrestle the hose a lot, end up hitting a dog in the middle of the night a few times flinging it around in frustration. I wake up more now. I never used to wake up at night (that I knew).
I think you've put your fingers on three very specific causes of why your sleep seems to be worse right now: (1)You feel as though you can't move around in bed the way you like to because of hose management problems, (2) trying to lie super still as way of fixing the problem of the hose shifting around is both very hard and uncomfortable, and (3) you're waking up a lot more probably because it's so dang difficult to shift around in bed the way you want to when you are asleep.

The trick here is NOT to lie super still. The trick here is to learn how to move with the hose. It's a learned skill and it takes some of us a lot more time than others to learn it. But learning to move around in bed without worrying about the hose and without getting all tangled up can be done. And once you learn that skill, this part of your current problems with sleep quality will start to fade. Eventually you'll even learn how to turn over in bed without waking up to do it. But it will take time to get there.

Since the hose is causing serious problems with your ability to shift from side to side, then you may want to consider a hose management system. How are you running the hose? Under the covers? Over the covers? Down your body? Or over your head? Many people find that running the hose overhead (or hanging it) makes it easier to turn from side to side.

A related part of why you are not feeling any better is that you're still in the new PAPer stage of worrying too much about the hose and mask and you're attempting to adapt your sleep to what you perceive as the hose and mask's needs instead of your own. I remember going through this myself.

You will eventually figure out that it's possible to sleep in almost any position with the mask on---except with your nose buried in the pillow. It may take you a while, but eventually you will figure out some alternative. For me, pre-CPAP I slept with my nose stuck into hubby's armpit. i can't really do that with the mask on either. But i did figure out how to butt my head up against his side. And I figured out that I could pull the covers entirely over my head and still breathe because the hose brings in a fresh air supply with each inhalation.

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houndlover
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Re: OK, Sleepyhead Results!

Post by houndlover » Sun Apr 20, 2014 5:14 pm

Thanks everyone!

I will say that this time around things are going much better. I think this is partially due to things like me being much more internet/forum savvy to come to places like this to read and having a DME supplier that set me up with what seems like "proper" or "good" stuff. I've been reading old threads about folks having to fight DME suppliers for heated hoses, new masks, return phone calls and I've had none of that. The first time around I was sent home with a machine from my titration study and told nothing other than to always sleep with it on. I found out you had to clean out the water chamber cause mine grew stuff.

So, I will say I ordered a hose holder (a lightweight one I can fly with since I leave on a trip in 2.5 weeks), and a new pillow with cut outs where I think they will work to help my side sleeping issue a bit.

I mostly have been running the hose down and on my body in a loop to the machine next to my head on the nightstand. It's easier to move that way then having the tube under the covers, however, it flops off more in the night yanking my head...so hopefully the tube holder will help. I tried over the pillow but I worry cause it tends to slide under the pillow and I don't want to end up breaking it. LOL

Robysue, I think I should start keeping official track of symptoms. Especially if things are going to be gradual. Otherwise, I might miss something. That was a great idea! I think I will add in things that I used to enjoy but have had to stop due to lack of energy. Like, I used to love to go hiking with my dogs but it had got to where up and down the block was exhausting.

And yes, when I nap at home I will use the machine. However, most of my naps are at my desk at lunch (since I am there most days of the week). I need the energy pick-me-up to make it to quitting time sadly. But, no nap when I get home after work and that makes me happy!


pbriggs, my pretreatment O2 went as low as 79%. What is crazy is 1:15 minutes of sleep my O2 was >90% but 46 minutes was 80-89%. No wonder I felt so crappy. That was almost all my diagnostic (a few seconds at a lower O2 than that). In that 2 hours I had 23 total apneas at an average of 14 seconds. So for just over 5 minutes total I wasn't breathing at all. A total of 70 minutes in hypopnea. Good lord. I know some folks are worse than mine of course, but it sounds really bad in those terms.

It's funny because I NEVER woke myself up at night snoring, gasping, panicked or anything like people describe. Didn't have to go to the bathroom a lot like some folks say they did, only had the rare morning headache, it was mostly just overwhelming daytime sleepiness. My Mom told me on a recent vacation I would snore really bad, then sit up straight in the bed sometimes a couple times a night. Obviously my body's way of getting me to be able to breathe...but it never woke me up. Add a hose to my face? Insomnia central!

I'm going to keep working at it! I'm determined to get used to this.