Backwards

Good morning,

I'am new to this website so I apoligaize if I'm asking questions where I shouldn't be.

I started with my cpap machine about three months ago. I slept great for the first week or so and then it was back to my habit of awakening in the middle of the night and eating. I have had the doctor do adjustments to my machine four times now and after ever adjustment it is a great night sleep for about five/seven days in a row and then back to the eating habit in the middle of the night. I have now figured out how to adjust the red-med 10 machine myself and have turned up the pressure and that has mad it worse. I'm very frustrated and concerned for my health, this eating in the middle of the night is absoulutly destroying my health.

Please advise on what I should do.

foamer wrote: ↑

Sun Apr 01, 2018 8:49 am

Good morning,

I'am new to this website so I apoligaize if I'm asking questions where I shouldn't be.

I started with my cpap machine about three months ago. I slept great for the first week or so and then it was back to my habit of awakening in the middle of the night and eating. I have had the doctor do adjustments to my machine four times now and after ever adjustment it is a great night sleep for about five/seven days in a row and then back to the eating habit in the middle of the night. I have now figured out how to adjust the red-med 10 machine myself and have turned up the pressure and that has mad it worse. I'm very frustrated and concerned for my health, this eating in the middle of the night is absoulutly destroying my health.

Welcome to the forum.
It might be best if you started a new topic with your questions so they will get the attention they deserve and not get lost here.
Do you know how to start a topic of your own?
If you do...I will remove this post here and let the other thread be devoted to your issues.
Also...when you have time please add your equipment to your profile. It will help us help you better and faster.
See here for how...please use text option...icony is small and they all look alike.
wiki/index.php/Registering_Equipment_in_User_Profile

Good morning and welcome foamer!

Two things -

1. Pugsy, I did answer your questions, think they just got lost in the little interruption.
2. I added SleepyHead but I am still using the Phillips as well - just to compare. Why would there be a major difference on some things - for example, this morning the Phillips showed mask 100% fit and Sleepyhead says major leaks.

Thank you

Machine algorithms are different...

Thanks Julie

Rebamom wrote: ↑

Mon Apr 02, 2018 3:55 am

1. Pugsy, I did answer your questions, think they just got lost in the little interruption.
2. I added SleepyHead but I am still using the Phillips as well - just to compare. Why would there be a major difference on some things - for example, this morning the Phillips showed mask 100% fit and Sleepyhead says major leaks.

SleepyHead defaults to a ResMed leak number for the red line in the sand and that number doesn't work so great with a Respironics machine and that is why SleepyHead is saying major leaks. We can fix that easily.
Copied from the same speech I have given others in your situation

Disregard that warning from SH. Your leaks are NOT excessive.
Instead the statistic reporting the % of time in large leak is based on a ResMed calculation number and that number won't work for your Respironics machine.
Open SH and go to Preferences and then the CPAP tab. SH Defaults to a red line leak threshold of 24 L/min which is a ResMed leak number...won't work with your machine. Your red line threshold number is more like 70...so change the 24 to 70 or just turn off that statistic by removing the check mark.

Large leaks (if you have any) will show up as flags on the Events graph and are a product of the machine.
Those are correct....the SH statistic is just a product of some calculations and isn't from the machine and in your situation with your type of machine...it's wrong.
Ignore it and base your leak evaluation on the presence of large leak flags on the Events graph...the LL on the events graph...that's large leak.

The computed SH statistic based on red line threshold is where SH is coming up with the large leak warnings.

All the nosy questions I asked was to see if there was something that might be causing wake ups that could be attributed to medications or some other health issue. Frequent wake ups for any reason will mess with sleep quality or the normal sleep cycles and the body needs the normal sleep cycles in their respective normal percentages for the restorative powers of sleep to work their magic.
Now it is normal to awaken after a REM cycle is completed but most of the time we the time awake is so brief we don't remember it.
We have to be awake a little bit to be able to form a memory of the awakening. When someone remembers multiple awakenings is a pretty safe assumption that there are a few more that may not be remembered.

Your meds aren't known to be horribly horrible for causing sleep maintenance insomnia (that's when we wake often or too early during the night) as opposed to sleep onset insomnia which is where we have trouble falling asleep.
You can have sleep onset insomnia in the middle of the night if it takes too long to go back to sleep after waking from sleep maintenance insomnia. Couple of ugly little monsters there that mess with sleep quality and the needed sleep architecture for restorative sleep.

I don't think you are doing anything wrong. I think that you are most likely having the normal adjustment issues that come with this therapy. Perhaps complicated a bit by the pain issues with the bad knees and the bad back. This is something I have personal experience with myself. It's why I often tell people that the best AHI in the world doesn't always mean that we feel on top of the world....I have first hand experience with the pain messing with sleep quality issue and frequent awakenings that often go with it.
Thyroid issues and the meds and getting the dosage right...could be a small factor but I doubt that it's the major factor.
I don't know what to make of the heart racing thing unless it is more related to mental stress worrying about "getting things right".
The mind is a powerful drug and sometimes it is good and sometimes not so good. I had a situation where it wasn't so good for me last night. Not a good night...mind was too awake in the middle of the night and it was in hyper drive. Fortunately that is rare for me.
I don't have a good fix for that.

Do what you have to do to help the back and knees have a minimal impact on your sleep quality. It's likely a war that you won't ever totally win. Some nights you will win the battle and sometimes the discomfort will win the battle.

While it would be really nice if we had perfection every night and felt the good numbers....sometimes we just don't get perfection when there are other issues going on that would maybe mess with our sleep besides sleep apnea.
We just have to do the best we can with what we have.

Finally....hours of sleep...6 hours isn't enough sleep for most people to expect to feel the good numbers especially if those 6 hours are highly fragmented from whatever reason. Now getting more hours....much easier said than done sometimes and again something I have personal experience with. It's a war that I have waged for years. Not from the sleep apnea side of things but from the other stuff that messes with sleep quality side of things.

When I first started cpap therapy I think it took me probably 4 or 5 months to just stop the wake ups from the brain being hyper vigilant and wanting to alert me to the fact that there was an alien stuck on my face. So there is an adjustment time for most people and if you are like me and have other issues that can also mess with sleep quality (like the pain issues) you get a double dose of bad luck

Quit clock watching in the middle of the night....worse thing in the world for a person with either type of insomnia to be doing because it adds mental stress to the mix as it makes the brain go into hyper alert drive.

Humidifier setting....the setting of 3 is middle of the road. I asked because sometimes congestion is related to the humidity setting for some people.
Humidity settings or personal preferences are highly individualize and there is no right or wrong setting....there's only what works for the individual. Some people will have nasal mucosa that like lots of added moisture and some will have nasal mucosa that don't like much added moisture.
Since you seem to report that the congestion is maybe a little better now than pre cpap....might be that the added moisture helps your nasal mucosa. Might be something to play with at some time if you feel that the congestion needs to be improved upon.
I learned a long time ago that my nasal mucosa would be happiest if I snorted water. Anything less than near maximum humidity and my nasal mucosa react by swelling up and causing some pretty nasty allergy like symptoms.
Others find that they do better with minimal to none added moisture. There's nothing wrong with either of us...it's just what our nasal mucosa wants and we have to make the nasal mucosa happy and sometimes it takes a bit of figuring out what the nasal mucosa wants.

Thanks Pugsy - a lot to take in and go through - probably sort though it a couple times.

I know for most that 6 hours sleep is not enough, but when I go beyond 6 hours I feel terrible the entire day. It's only been 15 years when I was living on 1-2 hours per night while I was a caretaker for my husband, so my doc is ecstatic that I've slowly built it up to where I am now. Of course he would like more - saw him last week - first question out of his mouth - have you left that stressful job yet? Have to laugh - I am on call 24/7/365, plus responsible for a grandmother and my mother. Scheduling 6 hours right now is a great accomplishment (and no these are not excuses - simple facts of life when we get older and take on responsibility).

Clock watching - I do think it is more of a getting used to thing. The one hour wake up and 1 am wake up, can't explain those - they have been steady for years. The other wake ups, I do catch myself looking to see if I can safely take off the mask and be in compliance. I know that's not a great attitude, but for right now it's all I have to get used to this new way of "sleep".

I'll look to change the setting as suggested - if I get lost, I may holler again. Whole thing still makes me nervous to change anything. And for the rest - like anything - Patience my dear - just keep practicing.

I'm excited this morning - had a night of all zero's - Perfect Score according to SH. Of course this doesn't mean I didn't wake up like normal, but I took special care to move slowly and went back to sleep fairly quick. It doesn't mean I wasn't tempted to remove the mask, but I thought about it and left it there just a wee bit longer.

I am trying to figure what the biggest change in my routine was that led to such a positive night and I believe it has to do with the stress levels were a bit lower than normal - as well as I did quite a bit of physical work last night to make sure I was worn out (but of course that has consequences my itself with the back and knees, lol).

My goal now is to duplicate last night repeatedly if I can remember all the little things that were different. I do feel different today but I attribute that to starting the day with a positive happy attitude which I haven't had since this started. Success is definitely the act of repetition day in and night out!

Have a great day!

Hi, glad you had a great night! But... don't want to rain on your parade, but if you in fact do get a string of literal 0 nights, you might need to look into your machine's set up again as that generally only would happen (beyond 1-2 nites) when something's not right.

Thanks Julie and I understand what you are saying. Right now I want to enjoy being "happy" even if it's only for a couple days. These three weeks of not waking up in the right frame of mind places more stress on me than ever. Prior to Cpap, I can not tell you the last time I wasn't positive, motivated and happy and I really missed this.

I know it has a lot to do with attitude, and maybe the best attitude I can have is not to worry about what happens with the machine - part of what I believe I did last night. I struggled to keep it on but it paid off for me at least for this one night. Using the stages of diagnosis, I know I've been through fear and definitely depression. If nothing else, maybe the depression is finally subsiding so I can resume normality (of course I've been told I'm not normal ).

I will definitely proceed with caution as far as expectations go moving forward, but today I want to dream of positive outcomes. (Yes, I love to daydream )

Julie wrote: ↑

Thu Apr 05, 2018 7:02 am

Hi, glad you had a great night! But... don't want to rain on your parade, but if you in fact do get a string of literal 0 nights, you might need to look into your machine's set up again as that generally only would happen (beyond 1-2 nites) when something's not right.

OP is using a Respironics machine and I haven't heard of it doing the 0.0 night after night like we used to see with the ResMed machines especially the S9. It doesn't seem to be happening even with the new AirSense model line so maybe ResMed fixed that little bug.
I used to see it occasionally with my S9 (where it got stuck reporting 0.0 and needed a reboot) but so far haven't seen it happen once with the AirSense. 4 months with an AirCurve and the AirSense 10 since last August.....so I don't think that this stuck on 0.0 thing is going to be nearly as common as it was with the S9 machines.

I love listening and hearing from you both - may not always understand everything you are talking about and nowhere's near the knowledge of this that you have - but I learn. Thank you both for being open, honest and still supportive - that makes the journey easier.

Julie was referring to something that we used to see happen....people were getting 0.0s night after night after night and that's sort of statistically unlikely for the most of us. Seemed to happen mainly with the ResMed S9 machines sometimes...while 0.0 is sure nice to see it's not normal for most of us to see 7 nights in a row of 0.0s. The S9 machines were getting stuck some how and it seemed to be a software bug and unplugging the machine from electric power and then plugging back in forcing the machine to reboot its software seemed to resolve the issue and people would no longer see 0.0s night after night. We can have 0.0s but it's just not normal to have them for a week or two straight. Statistically unlikely.

As for your feeling better and thinking it might be related to attitude or stress....very probable that this impacted your sleep quality.
The mind is a powerful drug and just like any drug it can do both good and bad things.

Don't get bummed out if you wake in the middle of the night...it's actually normal like to awaken after a REM cycle is completed.
Normally we don't remember those awakenings because they are so brief but sometimes we do because it takes us a little longer to get back to sleep. So an occasional remembered awakening isn't necessarily a bad thing....it gets to be a bad thing when the mind starts doing bad stuff like causing us to worry and stress out and have problems going back to sleep.
Been there and done that myself and had it happen just night before last. My mind was bad...I woke up after barely 4 hours of sleep night before last and between the mind going into hyperdrive mode and my back hurting I simply couldn't go back to sleep.
Yesterday was a really ugly day for me. 4 hours of sleep guarantees I feel like total crap all day.
I was going to take a nap...but just as I was getting ready to go back to bed the electric company guy came by to tell me he was switching out meters on the power pole. So that go the dogs going and that got my mind going and then sleep wasn't going to come.
So no nap yesterday.

Your mind is a powerful drug...don't let it take you places (if at all possible) that you know is going to mess with how you sleep and thus how you feel. Yes...I know easier said than done sometimes but do your best and don't kick yourself too much when it doesn't work out like you want. Sometimes you will win and sometimes the bad side of your mind will win.

I have read so much on others posts - this forum truly amazes me as to the information provided.

I will be seeing my sleep doc in a couple days and was curious if there were questions I should be asking. I know I plan to ask for a copy of my sleep study, thanks to everyone here I understand that is my right. But do I need to discuss with him the continued feeling of exhaustion, etc since I will only be a month into therapy? I am guessing therapy is working since my days with chest pain are minimal to non existent - my numbers are really good so not sure if there is anything else for the doctor to worry about.

When's the last time you were tested for e.g. thyroid and/or hormone problems? Sugar? Cardiac work-up? Not everything's about OSA/cpap. Is your life otherwise satisfying or are you depressed over some of it (apart from sleep stuff).