First night, so discouraged

jessemm89 · Post by **jessemm89** » Sat Aug 17, 2013 6:24 am

So, it was my first night on CPAP. I'm 24, diagnosed recently with OSA. My AHI was 16. I wanted so much to feel a difference last night, and I woke up exhausted as usual. I woke up at least 10 times if not more last night. I don't know if it was the equipment I'm not used to, or if I'm not using it right or what. I'm so tired of being tired. I was really hoping to be the first night success story. Was it something I did? I don't know. I'm just so lost. Any help or encouragement is greatly appreciated. I would specifically like stories where you didn't get it straight off but it works now.

49er · Post by **49er** » Sat Aug 17, 2013 6:28 am

jessemm89 wrote:So, it was my first night on CPAP. I'm 24, diagnosed recently with OSA. My AHI was 16. I wanted so much to feel a difference last night, and I woke up exhausted as usual. I woke up at least 10 times if not more last night. I don't know if it was the equipment I'm not used to, or if I'm not using it right or what. I'm so tired of being tired. I was really hoping to be the first night success story. Was it something I did? I don't know. I'm just so lost. Any help or encouragement is greatly appreciated. I would specifically like stories where you didn't get it straight off but it works now.

Hi Jessemm89,

Welcome to the forum.

Ah, the 1st night miracle that everyone hopes for but usually doesn't get. Welcome to that club

The first thing you need to do is use the link in my signature to fill out your equipment profile so people can better target their advice to your situation. Your problems could be due to several reasons.

It may simply be an issue of adjusting which takes time for many people. Or your treatment may not be optimal and if so, knowledgeable folks can help you troubleshoot those issues.

Hang in there.

49er

Pugsy · Post by **Pugsy** » Sat Aug 17, 2013 6:30 am

Welcome to the forum.

Actually those stories where someone has the "miracle" the first night....those people are the lucky one and there's not nearly so many of them as there those of use where it did take some time.

Please add your equipment to your profile like I have mine. That way we know what you are using and can offer maybe more specific ideas to help you.

Those 10 awakenings....guaranteed to make you feel awful even if the therapy was optimal.
So why the awakenings? Mask fit, comfort or leaks? Just the newness of having the mask strapped on your face? Brain being hyper vigilant waking you up to tell you "hey dude, do you know you have an alien strapped on your face?"

First of all let's see if your machine is a full data machine so that we can hopefully see some data and evaluate the therapy part of things.

jessemm89 · Post by **jessemm89** » Sat Aug 17, 2013 6:48 am

Updated what I knew. I have a new mask. I have no idea the operating system or how to get the data off the card.

sawinglogz · Post by **sawinglogz** » Sat Aug 17, 2013 7:17 am

Sorry your first night was so rough!

It's a lot to adjust to: the sound, the pressure, the mask, the idea of it all.

My first few nights I was hyper-aware of everything and that kept me awake. (I only slept about 120 minutes during each of my titration studies.) The "encouraging" thing for me was that I slept 4 hours the first night with my machine, which (while unpleasant) was twice as much as I had slept in the lab.

After getting over the hyper-awareness, the next thing that bothered me was the mask. I had a full-face mask (FFM) that I had used in the lab, but I would invariably get a nose itch at some point in the night and be unable to scratch. So I tried a hybrid mask and found that my AHI dropped and I could breathe much more easily without the pressure on the bridge of my nose. And I could scratch my nose.

After finding a mask that worked better for me, I discovered the joy of mask liners! Instead of feeling something creepy clinging to your face all night long, it just feels like a soft cloth, maybe even a bit of a throwback to early childhood (with a favorite stuffed animal pressed against your cheek).

There's still continual fine-tuning as I adjust and get more comfortable with it, but I'm sleeping so much better than I did before, even if I'm not quite back to "normal" yet.

Also, I appreciated the advice not to stress about it: wear it as much as you can, and then when you can't take it any more, take it off for the rest of the night. Work your way up. That really helped when my third night was really awful. I wasn't stressed about it, and I wasn't dreading the next night, since I knew I could just take it off if it was bad.

Also, it's really helpful looking at charts of the data your machine generates. Look at Pugsy's signature for the link to SleepyHead (free for PC and Mac). You pop the SD card out of the back of your machine, put it into your computer, and tell SleepyHead to import the data. Then you can see everything your machine recorded. You can use that information to figure out (sometimes) why one night was worse than another, what things help or hurt, etc.

Scooter32 · Post by **Scooter32** » Sat Aug 17, 2013 7:19 am

First off welcome to the forum, I am rather new myself and have only been on CPAP for 9 nights now. Perhaps I am one of the lucky ones in that my first night I maybe slept a total of 2-3 hours but felt more rested than I did after 8 hours. All I can say is don't get discouraged. My sleep sucked for the first 4-5 nights but it's gotten much better the past few nights. I started the first night with an AHI of 16 and the past few nights have been maybe 3-4 as I seem to be getting used to the machine. Last night I slept pretty well getting maybe 7 hours total. It just takes an adjustment period I think. What has also helped me is to see my numbers each day to see that my usage of the machine is getting better as well as the number of times I stop breathing at night going down. I actually find it pretty fun to graph up on sleepyhead so I would suggest you download that (instructions can be found on one of the top forums posted by Pugsy). Taking the card out and simply plugging it into that is easy and like I said, you get to see your entire night.

I am sorry you didn't feel the benefit from your first night like I did but seeing what others post, it can take even a month or two. If you want to read success stories, there is a huge post up top all about peoples success stories that is a good and positive read. Hope that helps and good luck, please stick with it.

jessemm89 · Post by **jessemm89** » Sat Aug 17, 2013 7:30 am

Ok, it says my AHI was .78, I had average total leaks of 15.68. Is that bad for leaks? I also had 10 flow limitation events, and 4 hypoapnea events, and 14 pressure pulse events. What does all this mean?

Scooter32 · Post by **Scooter32** » Sat Aug 17, 2013 7:43 am

Hoping someone a little more veteran steps in here. An AHI of 0.78 sounds really good! The total leaks I cannot comment on because it varies by machine, pressure and mask and such. For instance, my total leaks are around 38. I look more at "leaks" which are more of the mask leak events. To me your numbers sound pretty good but again, I'm not really all that versed in what is good/bad yet.

BlackSpinner · Post by **BlackSpinner** » Sat Aug 17, 2013 9:10 am

Learning to sleep with a cpap machine and a mask is kind of like learning to walk on crutches. You won't be jogging up & down the stairs the first day on them.

For many people it takes about a month before your brain will trust this thing on your face to keep you alive and allow you to sleep deeply. I will also take some time before you catch up on sleep and the sleeping and O2 repairs the damage done to your body.

jessemm89 · Post by **jessemm89** » Sat Aug 17, 2013 9:16 am

Thank you all for replying so far.
Thank you Blackspinner, for the encouragement. I guess what's got me discouraged, is my AHI is low, but I still feel really tired. I woke up so many times last night. I think you're right, my body just needs time to repair itself I guess.
And thank you Scooter32, for the encouragement. I just need to realize it's going to take some adjustment.

BlackSpinner · Post by **BlackSpinner** » Sat Aug 17, 2013 9:20 am

I slept like a log through the first night and subsequent nights. I felt slightly better the first morning in that things seemed a bit brighter and there was no headache, However, I felt like I had been hit by a truck because my joints, especially my hips hurt like hell due to the fact I had lain still all night!

DJD52 · Post by **DJD52** » Sat Aug 17, 2013 12:17 pm

jessemm89 wrote:Thank you all for replying so far.
Thank you Blackspinner, for the encouragement. I guess what's got me discouraged, is my AHI is low, but I still feel really tired. I woke up so many times last night. I think you're right, my body just needs time to repair itself I guess.
And thank you Scooter32, for the encouragement. I just need to realize it's going to take some adjustment.

All great advice. I was hoping for a quick turn around when I started also. I think we all hope for that.
I'm still hanging onto patience and taking one night and one day at a time.
When I get discouraged I read the posts here by those that have been on therapy a long time and knowing how far so many have come while overcoming major problems reminds me I have to to continue to get to the "good" results. It sounds like you have a good start and the help you need, be it technical or supportive can be found in this forum.

Pugsy · Post by **Pugsy** » Sat Aug 17, 2013 5:48 pm

Until you can say that you slept through the night and not mention multiple wake ups it's going to be really hard to expect to see any improvement.

Fragmented sleep (multiple wake ups) no matter how good the data looks is pretty much going to leave us feeling run over by a truck.

So...why the wake ups? That's the big question. Any idea why?
When you wake up often your sleep architecture gets totally messed up and you aren't able to experience the normal sleep cycle progression that the body needs for the restorative powers of sleep to do their job. Multiple wake ups mean minimal deep sleep or REM sleep and that's were the body does most of its rejuvenation during sleep.

A word about leaks...your machine reports Total Leaks which include the mask's expected vent rate plus any excess leak.
SleepyHead offers Leaks and Total Leaks...
Leaks being an approximation of only excess leaks... if that is what you are talking about with your 15 L/min average...that's not bad but most of us go by Total Leaks. If you look at your leak graph using the software....does it ever go above 80 L/min?
You might want to read this as it will explain some of what you are seeing.
viewtopic/t88983/Pugsys-PointersSleepyH ... nding.html

sawinglogz · Post by **sawinglogz** » Sat Aug 17, 2013 7:15 pm

Also, you probably have a lot of lost sleep to catch up on, so you're likely to be pretty tired at first. I actually felt more tired at first (but plain old exhaustion, not the awful apneic morning insomnia), since my body was finally able to relax and be tired and restore itself.

Is there anything that feels better for you? Let us know tomorrow!

p.s. Was your AHI 0.78 or 7.8? I ask because I think the Respironics only report one decimal place. (SleepyHead might well be more precise.)

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