Need some help and guidance

[andycc]

I was wondering if anyone who has been on cpap therapy sleeps worse than when they were not. I have severe sleep apnea, and have been using the mask every night.  I have used it now for a good year. I suffered a form of optic nephropathy , docs think is connected to sleep apnea and going into hypoxmia. SO , I am afraid not to wear it. I wear it.

I am waking up what seems to be 15 times a night. Not the full wake ups, just the ones where you know you are awake and roll over and try to find a more comfortable position. I am toggling the mask all the time and cant just sleep for a few hours. I know stress can play a part in all this, but its getting to the point where I am  getting really upset in the evenings and before I go to sleep. I can  fall asleep fine, just wake up a ton.

I am seeing a sleep psychologist next week, in search for some help. I have between 2-5 events per Oscar and the resmed app. I  hope I can get that lower, after talking with my sleep doc in the coming weeks. 

Any advice on this would help.

thanks

I used a red med airsense 10
pressure 14
dream wear nasal mask,

Also use an oxygen concentrator to help protect from hypoxia

[DeepBreathing]

Good morning Andy. Welcome to Apnea Board.

First, could I ask which particular Airsense machine you have? The name is printed on the front lower right corner and is typically something like Elite or Autoset. Different models have different capabilities, and consequently it's important to know which you have.

Addressing your first question - yes, it's extremely common to sleep worse with the machine than without it. It's probably the single major cause of people giving up on CPAP therapy. The challenge is to nail down what is disturbing you, and eliminate the risk factors. Also the fact that you're not alone and you are in fact in excellent company!

To help give us a clearer insight as to what's happening, could you post an OSCAR daily page from a recent typical night? The page must be formatted according to these instructions. One thing that jumps out at me is the constant pressure of 14 cmH2O. This is fairly high, and an adjustment to your settings might be in order to improve comfort. AHI is only one part of the puzzle - comfort is critical, and you must be comfortable to sleep.

A few things to think about:

• Habituate yourself to wearing the mask by putting it on during the evening, eg when watching TV. This gets your body attuned to this thing on your face and helps take away the anxiety which I sense is starting to trouble you.
  
• Ensure your bed is comfortable, and the room temperature appropriate. Your pillow must be supportive, but not so thick that it tilts your neck forward (chin tucking).
  
• Review your OSCAR output paying particular attention to leaks. Small but persistent leaks - especially if the air blows in your eyes, or the mask causes "face farts" - can be sufficient to arouse you.
  
• Important - is your mask comfortable? There are dozens of makes and models out there, and many / most people need to try several to find one which is comfortable and doesn't leak. Many of us long-term members have a drawer full of old masks that didn't quite work for us.
  
• General sleep hygiene - no screen time before bedtime, watch what you eat and drink in the evening, eliminate external distractions so far as possible...etc
  
• Talk to your doc about a mild sleep medication to a) help you get to sleep and b) help you stay asleep.
  

Hope this helps. Just so you know - I had a very similar conversation with The Boss this morning. I had removed my mask which was leaking badly, and argued that it's better to get an apnea-ridden sleep than no sleep at all. Well she's a former emergency department nurse, so I got no sympathy from that direction! I put the mask back on, adjusted it carefully and slept like a baby for the next 6 hours.

[Plmnb]

I am seeing a sleep psychologist next week, in search for some help. 

Hello andycc.  You have come to the right place for help, that is for sure.

A sleep psychologist?????  Please, tell me more about this.  I never knew this practice existed.  How did you hear about this psychologist?  Do you know anyone who has seen one? I am very interested in this upcoming appointment of yours.

I have many issues of my own that are more than likely exacerbating the severity of my sleep apnea.  (My second main thread details everything and if your interested let me know and I'll provide the thread title).  Anyway, I have an appointment with a new psychiatrist at the end of the month, but he's not a specialist in sleep issues.

Looking forward to hearing more,
Plmnb

[sheepless]

the fact that an old hand like DeepBreathing still has moments wanting to sleep unencumbered kinda put things in perspective for me. thanks for sharing that. you're lucky to have such a 'boss' db!

[Big Guy]

I sleep better w/o my CPAP than I do with it. When using it, I do okay. Been on SA Therapy now going on 17 months. 

I find myself awake momentarily numerous times a night. Most of that is getting out of bed to use the restroom. But, I am aware of myself moving around in bed to a more comfortable position and/or to adjust my mask. 

Mask leaks are also responsible for waking me up, as is an itchy nose when I'm wearing my F20 AirFit mask. 

I'm a firm believer that as one grows older, things get worse, not better. Sleep included. I'm not expecting to end up sleeping like a baby. I'll take what I can get. I'm fully retired, and if I get sleepy during the day, I take a nap. 

I'm on the fence so to speak right now, in regards to how well this SA Therapy is going for me. I'm quite sure that I don't have it as bad as some do on here. I'm shooting for two years of therapy, and I will then decide whether or not to continue it at that time.

[andycc]

Thank you so much for messaging me back.
It is an autoset machine. I will look up how to post some of the OSCAR stuff tomorrow. I find comfort in knowing there are people and groups online that can offer help. I feel like sometimes the medical community has a hard time understanding.

[andycc]

I think she is a sleep psychologist that works in the sleep center. However, she works with people struggling with cpap issues and insomnia ect.  I will keep you posted how that appt. goes. Trying to get used on how to reply here and answer the questions i was asked. . Thank you for messaging me back.

[Sleeprider]

It's nice if you have the option to forego therapy, and feel more comfortable with that. For me and many others here, it's not an option. A night without CPAP is going to be uncomfortable with poor, if any, sleep. I have ended vacations and gone home due to a machine failure. I think sleep quality varies for all of us, and the tendency is to hang that on CPAP therapy. I suspect it is sometimes, and other times the problem is external to the therapy.

I'm looking forward to seeing a chart or two from you. Your machine is set to fixed pressure, and you have some options like EPR (exhale pressure relief) that can make a difference in arousals and comfort. This forum has a pretty good success rate at making therapy better for a lot of people. No promises, but maybe you will find something that works from this group of fellow sleep disordered people. Welcome to Apnea Board.

[andycc]

It's nice if you have the option to forego therapy, and feel more comfortable with that. For me and many others here, it's not an option. A night without CPAP is going to be uncomfortable with poor, if any, sleep. I have ended vacations and gone home due to a machine failure.  I think sleep quality varies for all of us, and the tendency is to hang that on CPAP therapy.  I suspect it is sometimes, and other times the problem is external to the therapy.

I'm looking forward to seeing a chart or two from you. Your machine is set to fixed pressure, and you have some options like EPR (exhale pressure relief) that can make a difference in arousals and comfort.  This forum has a pretty good success rate at making therapy better for a lot of people.  No promises, but maybe you will find something that works from this group of fellow sleep disordered people. Welcome to Apnea Board.

Thank you for commenting.  I have to wear the mask no matter what. I have to try best I can to protect my good eye. I didn’t wear the mask seriously for a while and one night suffered something called NAION,optic neuropathy and lost a lot of vision in one eye. they think it happens when you go into hypoxia and blood pressure then goes haywire. Scary stuff. So i def need help getting this right and am thankful for everyone.I  have been struggling with severe anxiety and depression since this all went down.

[andycc]

Good morning Andy. Welcome to Apnea Board.

First, could I ask which particular Airsense machine you have? The name is printed on the front lower right corner and is typically something like Elite or Autoset. Different models have different capabilities, and consequently it's important to know which you have.

Addressing your first question - yes, it's extremely common to sleep worse with the machine than without it. It's probably the single major cause of people giving up on CPAP therapy. The challenge is to nail down what is disturbing you, and eliminate the risk factors. Also the fact that you're not alone and you are in fact in excellent company!

To help give us a clearer insight as to what's happening, could you post an OSCAR daily page from a recent typical night? The page must be formatted according to these instructions. One thing that jumps out at me is the constant pressure of 14 cmH2O. This is fairly high, and an adjustment to your settings might be in order to improve comfort. AHI is only one part of the puzzle - comfort is critical, and you must be comfortable to sleep.

A few things to think about:

• Habituate yourself to wearing the mask by putting it on during the evening, eg when watching TV. This gets your body attuned to this thing on your face and helps take away the anxiety which I sense is starting to trouble you.
  
• Ensure your bed is comfortable, and the room temperature appropriate. Your pillow must be supportive, but not so thick that it tilts your neck forward (chin tucking).
  
• Review your OSCAR output paying particular attention to leaks. Small but persistent leaks - especially if the air blows in your eyes, or the mask causes "face farts" - can be sufficient to arouse you.
  
• Important - is your mask comfortable? There are dozens of makes and models out there, and many / most people need to try several to find one which is comfortable and doesn't leak. Many of us long-term members have a drawer full of old masks that didn't quite work for us.
  
• General sleep hygiene - no screen time before bedtime, watch what you eat and drink in the evening, eliminate external distractions so far as possible...etc
  
• Talk to your doc about a mild sleep medication to a) help you get to sleep and b) help you stay asleep.
  

Hope this helps. Just so you know - I had a very similar conversation with The Boss this morning. I had removed my mask which was leaking badly, and argued that it's better to get an apnea-ridden sleep than no sleep at all. Well she's a former emergency department nurse, so I got no sympathy from that direction! I put the mask back on, adjusted it carefully and slept like a baby for the next 6 hours.

hope I am doing this right.
The first screen shot is the night i slept really bad.. tossing and turning a lot maybe awake 15 -20 times it seems

The next one is me actually doing a little better, i tightened up tje mask that night.

The last two was last night, I was tossing and turining a lot after 3:00 and was kinda on and off awake in the morning hours around 9 am.

I see a bunch of false positives cause of me being a wake..... and very curious what other see.

And thank you!