Could do with a bit of moral support/commiseration

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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RaveledSleave
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Could do with a bit of moral support/commiseration

Post by RaveledSleave » Wed Mar 14, 2018 7:42 am

So I'm on day 5 of CPAP, used it 4 out of 5 nights. I'm feeling miserable. Sleeping a lot worse than I was before, and I'm waking up feeling sick and depressed. Pretty much the only way to shift it is to go back to bed later in the day for a few hours, without the machine. I was also given a prescription for Clonazepam (due to RBD) which I started using two days ago, but it doesn't seem to be doing anything to help me fall asleep or stay asleep. I don't have a problem with the feeling of the mask while I'm awake, or the air pressure, but it seems like I spend all night being woken up by the various unfamiliar sensations.

Anyway, I know that I need to stick with it and wait out the adjustment period, not planning to stop or anything, just seeking some sympathy hugs, if possible. The emotional knock-on effect is the worst - I'm just coming out of a really bad period of depression, and getting a little daily review of what things were like six months ago when I wanted to jump off a bridge is NOT my idea of fun. It does seem like going to sleep again for a couple of hours helps, so I might just adjust my daily schedule to do that intentionally.

TL;DR whine whine everything is terrible and hopefully you guys understand :)

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Pugsy
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Re: Could do with a bit of moral support/commiseration

Post by Pugsy » Wed Mar 14, 2018 7:47 am

What is RBD?

Here's a big virtual hug sent your way....(((HUGS)))

Did you have trouble falling asleep and/or staying asleep before you started cpap therapy?

Have we looked at your software report to see if the settings are optimal or not?

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Mikebear
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Re: Could do with a bit of moral support/commiseration

Post by Mikebear » Wed Mar 14, 2018 7:52 am

I can feel for you. I've been on cpap therapy successfully for 20 YEARS with the same brick NO DATA single pressure machine, until just after Christmas. So, I've only had subjective feeling of how things have been going all that time. Since Christmas, I've been using an Airsense 10 Autoset machine. It's taken me until this past week to FINALLY get things in place (read tweak settings to where they are for SURE working for me) where I'm starting to see results in Sleepyhead.

So, a person that's been on cpap therapy 20 YEARS took 2.5 months to just get used to a new cpap machine...

How does that make you feel about only being 5 days of ever using a cpap machine the first time from the start? Feel any better?

What I'm trying to say is that 5 days is NOTHING in the scheme of things doing this, and you need to "keep on, keeping on" until you figure out what works for YOU. It will get better then, and you'll start feeling better as you gain some good sleep.

Get an SD card, and post some Sleepyhead charts so people can suggest if you need any changes

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ChicagoGranny
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Re: Could do with a bit of moral support/commiseration

Post by ChicagoGranny » Wed Mar 14, 2018 8:24 am

How are you doing with the adjustments that were suggested? - viewtopic.php?f=1&t=164596&p=1231318#p1231318

Keep the faith. You are just starting. Things can get much better.

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RaveledSleave
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Re: Could do with a bit of moral support/commiseration

Post by RaveledSleave » Wed Mar 14, 2018 9:58 am

Thanks all. I called the clinic and the tech talked me through how to change the pressure settings. He thinks the max is too high, as I’m getting woken up by it later in the night, so we’ve turned that down. Now I know how to change the pressure I’m also going to raise the minimum a bit as suggested on here.

RBD = R.E.M. behaviour disorder, I.e. I’m moving around a lot when I shouldn’t be. I feel like that may be the root of my poor sleep right now - My vague awareness of what was happening last night at least was that I’m moving around, breaking the seal of the mask, then there’s a rush of air and I half wake up and adjust my head to reseal. (my AHI was actually lower last night though). The clonazepam is supposed to help with that but I haven’t noticed any effect yet.

I’ve always had trouble falling asleep (brain won’t switch off no matter how tired I am) but I’ve never been conscious of waking in the night, I’ve always thought I slept straight through. However, my sleep study showed about 40 minutes total of arousals through the night. I am definitely aware of repeatedly waking briefly for the last few nights.

I’m going to try a few things tonight like hooking the hose up on the bed frame and arranging my pillows so I’ve got a space for the mask.

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Soothest Sleep
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Re: Could do with a bit of moral support/commiseration

Post by Soothest Sleep » Wed Mar 14, 2018 10:14 am

There are a lot of bits, pieces, and moving parts in getting properly set up and comfortable with CPAP. It's an ongoing process, and I see you are persisting with problem-solving. Good on you!

Keep on keeping on,
Jean
O soft embalmer of the still midnight,
Shutting, with careful fingers and benign,
Our gloom-pleas'd eyes, embower'd from the light,
Enshaded in forgetfulness divine
-- John Keats

Cardsfan
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Re: Could do with a bit of moral support/commiseration

Post by Cardsfan » Wed Mar 14, 2018 4:15 pm

Hang in there. It takes time.

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Goofproof
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Re: Could do with a bit of moral support/commiseration

Post by Goofproof » Wed Mar 14, 2018 4:19 pm

Up one section, bottom post, read whole thing! Jim
Use data to optimize your xPAP treatment!

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Rob K
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Re: Could do with a bit of moral support/commiseration

Post by Rob K » Wed Mar 14, 2018 5:15 pm

I hope my experience helps you in some way. You talk about getting your brain to shut off at bed time. I'm one, or was one of those people. I figured out it was from stress, anxiety and untreated apnea. These things caused bad insomnia. I was getting 3-6 hours of broken sleep per night when I needed around 8 hours of quality sleep. I was a real mess in all regards and in a situation that had to change. My body was not going to let me continue on as is. The forum members helped me with the xpap therapy. Getting better sleep helped a lot with anxiety. The other big thing was to reduce as much stress as possible and to greatly simplify my life. I cut way back on all the stuff I used to try to do and cut out as much of the bad stuff as possible. I set aside time for proper rest and relaxation. I had to make some significant life changes. This is what now allows my brain to shut off at bed time. I can now get to sleep within 15 minutes instead of several hours. I had fallen into the trap of an over complicated lifestyle. Really glad I learned that lesson and was able to get my health back. Being well rested gives you a whole new look at the world. I wish you the best.

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jennmary
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Re: Could do with a bit of moral support/commiseration

Post by jennmary » Wed Mar 14, 2018 5:54 pm

It took a while for me to get used to things when I started 12 years ago. But after a while it got to a point where for the first time I could lay down and just.....fall asleep! Your brain does some funny things. My doctor figured that the chronic insomnia and problems falling asleep were my brain trying to save itself. My body knew that when I slept I suffocated. So it didn't want to fall asleep. Once I was more used to the machine and my body had a chance to get out of panic mode....I was able to fall asleep within minutes of laying down.

It DOES get better. Some people get used to it quickly, some take longer. Some get a new machine after having an older one for a while and they take some time to adjust. Some, like me, immediatly take to their new machine. But I think that the VAST majority of the people who stick it out through the hard part in the begining do fully adjust and reach a point where CPAP is something they no longer dread using.

Big virtual hugs your way! Stick with it. It does get better.

The only advice I have......stop taking naps without the CPAP. If you need a nap, wear the mask.

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chunkyfrog
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Re: Could do with a bit of moral support/commiseration

Post by chunkyfrog » Wed Mar 14, 2018 6:05 pm

Clever choice of username:
8)
" . . . sleep that knits up the raveled sleave of care" —William Shakespeare

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RaveledSleave
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Re: Could do with a bit of moral support/commiseration

Post by RaveledSleave » Thu Mar 15, 2018 6:58 am

jennmary wrote:
Wed Mar 14, 2018 5:54 pm
The only advice I have......stop taking naps without the CPAP. If you need a nap, wear the mask.
Yeah, I realised that after yesterday. Will be putting the mask on when I lie down to rest from now on, even if I'm not intending to sleep. Hopefully that will also help me acclimatize more.

I feel better today! Not like "wow my life has turned around", but not awful like the last few days. I ended up taking a higher dose of clonazepam last night by mistake (I was dozy enough when I was taking my night meds that I just took a whole tablet, and only remembered afterwards that I was supposed to cut it in half) and that seems like it may have helped. I've also been tweaking my mask, decided it needs to be less tight at the top and slightly tighter at the bottom. The sleep clinic had me turn the max pressure down to 10, and I did feel like I didn't wake up so much, but my sleepyhead data shows that I spent most of the night with the pressure capped out at 10 (and my AHI was up again), which suggests to me that the pressure needs to be able to go a bit higher than that. Now I have "permission" to access to the pressure settings I feel comfortable testing out different things. Sleepyhead is really great, I love being able to look at the data to see what changing this thing or that is doing! I still seem to be snoring a lot, but I'm going to check that with a phone app tonight to see how it compares to how I was before.

For all the awkwardness of it, one thing I love about the CPAP mask is the flow of air on my face. I've always tended to overheat at night - I have a fan by my bed that I use all year round, even in winter, because I'll just suddenly overheat when I've been lying there a while - and having the cool air hitting my face is wonderful.
chunkyfrog wrote:
Wed Mar 14, 2018 6:05 pm
Clever choice of username:
8)
Haha, thanks. I was trying to think of something sleep related that hadn't already been taken. :) And I've always loved that line, though it has in general tended not to apply to me! Here's hoping that may change.

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ChicagoGranny
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Re: Could do with a bit of moral support/commiseration

Post by ChicagoGranny » Thu Mar 15, 2018 7:36 am

RaveledSleave wrote:
Thu Mar 15, 2018 6:58 am
Sleepyhead is really great, I love being able to look at the data to see what changing this thing or that is doing! I still seem to be snoring a lot, but I'm going to check that with a phone app tonight to see how it compares to how I was before.
You are taking control of your CPAP therapy. Excellent!

All the best to you!

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esel
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Re: Could do with a bit of moral support/commiseration

Post by esel » Thu Mar 15, 2018 10:03 am

Ups and down are the life's roller-coaster. If we don't appreciate the downs, at least I don't, I do love the ups. And when I am up again there is no way to understand why there was that down. :)

Adjusting to changes takes time. Hope is the best medicine to get back on track. Don't underestimate the power of mood on your health.

Good luck :wink:

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Rob K
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Re: Could do with a bit of moral support/commiseration

Post by Rob K » Thu Mar 15, 2018 11:13 am

I used to get hot flashes and night sweats when my apnea was untreated. I ran the fan at night for that reason. Now that I think about it, this rarely happens now with adequate xpap therapy. I don't use the fan much anymore except during the summer. I had a number of scary symptoms that would happen at night. I can't tell you why they happened, but they are gone now with the xpap working well.

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