Hide the hammer I'd like to smash it! Feel worse then before I started

[MsDixie]

Being the joyful ray of sunshine i currently am I'd say I most likely should not be writing a post at this moment. I'm just so very frustrated!

I've not had time to download the software ( thank you to those who helped me know my machine kind :-) remstar auto A-flex system one 560p

It's been close to a few weeks now and I am not adjusting as well as I'd hoped for.
Still waking during the night and each night seems to become more miserable I am honestly beginning to dread night and time to sleep. I'm changing mask during the night from nose mask to full to back again just trying to get comfortable and sleep

I checked the little screen tonight and it reads my AHI last night was 15.7. The 7 day is 7.8 and the 30 day 6.6.
I am getting over 4 hours a night of therapy under the compliance
My pressure is at 9

My sleep doc said I had 0 events during study while on cpap and was happy saying not many are helped that well ( I have moderate apnea) so I'm wondering why I'm having so much trouble at home! I've even been trying the full face mask they used that night in lab.

I'm to the point of being sleep sick and been ready the boards several hrs before posting tonight. My machine has A-flex and I'm trying to understand this and thought I might set it to auto something or another tonight ( auto sleep would be lovely lol) yet mine only shows c-flex in the setup screen so I've compared it to some screens on YouTube and manuals and seems mine is missing some stuff or just looks different. I've come to the conclusion the med supply people have hidden some of my controls that is aggravating me cause, well, ya know how they are! :/

Argh

[Tez62]

MsDixie, this was hard for all of us at the start so we know what your going through unlike others. It does get better with help and support and you have to stay positive about it because it's for your health and your life. Can I ask why your changing masks during the night? Try to stick with one, if you are comfortable with the full face mask stay with it and we can help get the issues out. Your AHI was high last night but that could be to leakage or movement. You shouldn't dread sleep and the time to sleep as that is the time when our bodies heal. You need to try to relax as much as possible and go with it. Our CPAP's are there to help us and they work for us. Keep going back to the supply people till they get the mask and the machine setting right for you, the more you bug them the sooner they will want to get it right. You will get there eventually it just takes time, I say it's a marathon that we will be using for life not a sprint. Also each night is a new night and will be different, hopefully you will get a better nights sleep tonight. What brand and model Full Face Mask are you using?

[trish6hundred]

Hi MsDixie,
I know you are having a REALLY difficult and frustrating time with CPAP therapy but i encourage you to stick with it, the mask is the hardest part of this whole thing. Just keep trying as MANY masks as you need to 'til you get the one that works for YOU.
Hang in there for more responses to your post and don't give up.

[MsDixie]

Tez & Trish Thank you both for your replies.

I'm trying to get comfortable I guess, not 100% sure. I've been doing the mask swap for the past week. Partly in determination to keep it on I was pulling mask off mid night so am trying to be mindful to keep one on. I did swap out the swift fx I loved it at first, but then I love all of them when I first try its after a night or two they bother me.
I'm thinking and trying to answer the question 'why' now that you've ask. One reason is I do wake to leaks then am so uncomfortable. Another it seems I'm suffocating - I may be getting a bit claustrophobic not sure. The hose is another I get wound up in it and have draped it over my headboard and also use the attachment on top of the swift mask I use now. I'm waiting on a heated hose to come in in hopes it will help.

Quitting is not an option - I did that 9 yrs ago after losing 30 lbs and declaring myself cured I now know better and that it doesn't work that way. I believe that is a bit of my aggravation also when I was on it years ago I took to it like a duck to water and slept with it for 3 months before getting off track. I guess with all th see new bells and whistles I expected it to be even easier and become Wonder Woman or something....

I've got a problem asking for stuff, and I really hate asking for new masks (but I will ) also is there not like a 30 day period of swapping the mask out then you can't no longer? Seems like I had heard you could swap them as much as you wanted for your first 30 days. I may be wrong about that though.
Again thanks for listening to me whine - it helps! ;-).

[MsDixie]

Oh and Tez62 the full face mask is a comfort gel blue by resperonics
They gave it to me at the sleep lab and I also have the wisp

[PollCat]

MsDixie, what is different at home as compared to where you had your sleep study? There has to be something that allowed you to sleep during the study that is not present in your own bed/room. There are several threads on this site that address the issue of sleep hygiene that you may wish to read - try the search button at the top of any page.

[Tez62]

MsDixie, your not whining your asking for suggestions, I was going to suggest one of your first steps with any of the masks, which you have done, is to have it coming from above your head, well done. The second step with a full face mask or nasal mask is to use mask liners, have you ever used them? If not, let me know and will give you some suggestions. The suffocating feeling could possiblly be the ERP setting on your machine, that is you may need a bigger gap when you exhale or it could just be the claustrophobic effect / thought, in most cases it is in our heads and we have to try to get over it, we are never going to suffocate using CPAP. I would also suggest if you get frustrated in the middle of the night, take it off and leave it for the rest of the night, there is no use struggling and getting frustrated it just masks it worse. You will get there eventually and look back at it as another test that we have in life.

[MsDixie]

I think I might make an appointment with my sleep doc it'll probably take a bit to get one so I could always cancel if I'm doing better.

Pollcat, I've ask myself the question what is different between here and the lab, which is one of the reasons I've been trying the full face mask I slept with that night. As well I've even tried taken a sleep aid as I had one that night. I have a good comfortable bed. My home is quiet. Room temp is good. I've even got high thread count sheets! lol. One thing that was different, they used the good old remstar pro c-flex that was the same as my old machine years ago. Now here I have this new fancy smancy billon dollar jewel I want to smack with a hammer and I may just need old faithful ;-)

I like the Wisp mask and is what i mask up with each night, but I've wondered if it was collapsing as it so soft. I do feel I'm having trouble getting air (in or out I'm not sure but trouble with it.) so thought trying the full face mask would help. I've never really been a claustrophobic person that I recall but it's about the only way I can think to describe it. What is the ERP setting your talking about Tez62?

I know how good I can feel after a good nights sleep on my cpap machine... I want that!

I really am so glad I found this board. If I had years ago I'm fairly certain I'd never stopped therapy and also fairly certain I'd duct taped my moms to her head. She spent a week in ICU from Co2 poisoning ando died way too soon due to sleep apnea complications. I look forward to when I've got everything clicking along fine and can help others as you are me. You're appreciated!

---

Oh and no I've not tried any of the liners.

[Tez62]

Sorry MsDixie it's EPR, EPR reduces the pressure during exhalation relative to the higher inhalation pressure, so basically it is more comfortable when you exhale.

[Shastzi]

I am going to read this thread over carefully and then I'll have some suggestions.
From the looks of it, the Sleep clinic need a boot in the yarbles for starters.

I will ponder the rest....