Trying CPAP on my own again

[Arlene1963]

After many months I've decided to start CPAP again having been diagnosed last year in Nov with moderate OSA (AHI 16) during an in-hospital overnight sleep study.

In November I tried CPAP for about 10 days, having bought my own machine online because the wait time to see a sleep specialist and to get a machine here in Ontario was quite long.

Anyway, I got into a big panic about the whole thing. After having lots of centrals recorded on Sleepyhead over a few nights I balked and stopped using my CPAP, despite the wonderful help I'd received here. I had a melt down and was prescribed anti anxiety meds and sleeping tabs for a few weeks in December.

Unfortunately, I'm a very anxious person and it was all just so overwhelming.

So, I dug my head deep into the sand for the last few months thinking I could exercise and lose weight and it would all go away.

Finally, I'm coming out of denial and panic mode having slept much better for the past few months. I feel well and strong and ready to start again. I'm optimistic ... and grateful to live in a time that has CPAP.

I'm going to take things very slowly but hope to be hooked up to CPAP again WELL before my scheduled split night titration sleep study at the end of May!

Worse case scenario I have complex OSA and will be able to tell them this info going into the split night study ... best case scenario the centrals are an adjustment to treatment and will go away on their own.

[Julie]

Hi, first of all, are you sure you have complex or central apnea vs a few (or even more) clear airway events on first falling asleep and on awakening? Those are common and not to be confused with a real diagnosis of 'central (or complex) apnea" where you have clusters of events all night long... it's important to know the difference and not assume the worst.

[lilly747]

Glad to see your back. If you don't give up, you will make it work. I did the same thing when I was diagnosed the first time, but it took me years before I came back. Now I would never sleep without my machine. With help from this board, you'll get there too.....

[Arlene1963]

Thanks Lily and Julie.

Yes Julie, I went back to check and they were clear airway events. I posted about it here at the time, and the feedback I got from folks is that it was almost certainly sleep wake "junk" because I was finding it very hard to sleep and the fragmentation was awful. 99% of the CA events were happening when I was half awake.

But I got it into my head immediately that it was the onset of treatment induced complex sleep apnea (thanks to Dr Google and my hypochondriac streak, obsessive streak!) ... and this set off serious insomnia and anxiety that lasted for about 2 months (November-December), thinking I would be one of those for whom treatment would be very complicated.

Anyway, I felt a lot better after I actually saw my sleep study results in detail at the apt in Jan with the sleep specialist. I had 3 centrals over the duration of whole night. The sleep specialist said this is nothing to be concerned about, so that also set me at ease.

Yesterday I watched TV wearing the hose and learning to breath with it on. I'm going to do this for a few days before trying to sleep with it on again.

This is hugely psychological for me, and I'm trying to use CBT techniques to help as well (I've used that with my insomnia to very good effect)

[Jay Aitchsee]

Yesterday I watched TV wearing the hose and learning to breath with it on. I'm going to do this for a few days before trying to sleep with it on again.This is hugely psychological for me, and I'm trying to use CBT techniques to help as well (I've used that with my insomnia to very good effect)

Good job! I think becoming comfortable with the equipment is a crucial first step. Remember, as you consciously become used to the therapy, as you sleep, your body and unconscious mind are becoming used to it, too. The first results (numbers & events) that are seen could likely improve through this conditioning process alone and aren't necessarily meaningful, I think, as you kind of figured out from your first experience.

[Arlene1963]

Thanks, Jay!

I think lack of sleep also played a large part in how I responded to my initial trial of CPAP. I instantly developed a fear of sleep when I got my diagnosis and this caused terrible insomnia which made me an emotional wreck, and all "doom and gloom". So, I didn't really give CPAP a chance after the first few nights and can even say that I developed an aversion to it, which is not good. I didn't realise that my attitude was the problem, and not CPAP. That took me a few months to figure out!

[Jay Aitchsee]

Well, it sounds as if your attitude is pretty good now. From what you've posted, I don't think you'll have any problems. Just take it slow, try to get comfortable and wear the mask through the night. Being able to sleep with the equipment should be your first priority. I wouldn't pay much attention to any data for a while except leaks. Remember that any AHI reported by the machine is likely less than it would have been untreated, so even if the AHI seems a little high at first, the treatment is probably beneficial. Once you are comfortable and adjusted to the therapy, it can be tweaked, if necessary.

[Arlene1963]

So last night I gave CPAP another whirl!

I felt very comfortable and relaxed, but of course this is all relatively new and so I only managed to get a few hours of sleep. (maybe 4 in total)

Unfortunately SleepyHead indicated that I had a very nasty cluster of about 14 clear airway events, almost all around a half an hour period when I think I was sleeping, but the night is a bit of a blur. I certainly drifted in and out of sleep all night and even remember thinking at one point that my breathing seemed strange.

In total over the night I had 25 CA events, but for sure 5 or 6 were definitely while I was awake.

Sleepy Head also indicated that I had 4 hypopneas, and 2 RERAs. (two hypopneas when I was awake)

AHI 4.54 but considering that a large portion of the night was spent awake, it's probably isn't all that accurate .... in fact the AHI for the hour with the Clear Airway cluster was 16. Ugh. That's not what I want to see with therapy.

I keep telling myself that the sleep study in Sept last year indicated that I only had 3 centrals over the whole night, and the rest were all hypopneas, and the Sleep Specialist reassured me that I don't have a problem with central apnea.

But honestly, I am a tad discouraged about those clear airway events.

Damn, wish I didn't have those, because as I was lying there last night I felt so reassured knowing that CPAP would take care of any obstructions or hypopneas, it really comforted me. I could learn to love CPAP.

Despite weight loss (10%) in the last 3 months, and my BMI being 22, my pressure is almost identical to what it was in Nov.

LOL, oh well.

So I'm going to try to stay positive and remember that these are early days in the process.

Grrrr, please folks send me positive vibes that I can get these CA events down over the next few weeks, I so want to use CPAP effectively to resolve my OSA.

[KayakKid]

This is hugely psychological for me, and I'm trying to use CBT techniques to help as well (I've used that with my insomnia to very good effect)

Arlene1963,

What CBT techniques did you use and do you find them helpful? I have similar experiences to you and believe a good part of my difficulties with CPAP are psychological as well.

[Arlene1963]

Hi KayakKid,

For me the biggest break through was reading Mind over Mood by Dennis Greenberger and Christine Padesky. This was recommended to me by a CBT therapist I was seeing in December.

There are many practical suggestions provided in this book and I have worked through it several times.

My advice would be to buy a second hand copy and to work through it. Every person is different and so what works for me might not work for you.

Also, I highly recommend Dr Guy Meadows "The sleep book" .... it completely changed the way I approach sleep and has effectively resulted in me going from maybe 2 hours sleep at the worst point of my insomnia to a regular 6 or 7 hour night of sleep (albeit fragmented due to OSA!).

[Jay Aitchsee]

Arlene, if you obsess over your numbers you are going to fall into the same trap again.

I know it would be difficult, but try not to look at them for a week. Keep a log of how you feel and, after a week, compare it to SleepyHead. You know most of those centrals are not true centrals to be concerned about. Drifting in and out of sleep almost ensures that the machine will report some centrals that would not be scored by a PSG.

A 4.5 AHI is considered treated, although I grant that you might feel better if it were lower.

Get your attitude back! Make your priority to sleep through the night. Don't look at the numbers. In fact, but tape over the display so you can't see them. Don't download them, don't look at Sleepyhead. Obsessing over any aspect of sleep almost certainly guarantees failure.

I'm just sayin'

[Arlene1963]

Thanks Jay!