New here and frustrated by the whole CPAP thing

[kindred spirit]

Hi Everyone,

About a month ago I was diagnosed with moderate obstructive sleep apnea and it was recommended that I begin using a CPAP machine at night. I've been using it since then with not real difficult adjustment (although psychologically I do not like it at all - it makes me sad). I use it for 5-8 hours per night. I only take it off if something wakes (kids) me up after 4/5 am because I have always had difficulty falling back to sleep at this time of the night and need to sleep on my stomach to even have a chance of falling back to sleep.

I've been waiting to feel some sort of benefit from using the machine - less sleepiness, better concentration, improved memory... Nada - I don't feel any benefit from the machine at all. Even after 8 hours uninterrupted sleep with the machine, I still wake up exhausted - just as tired as I did before using the machine. I'm frustrated. And so is my husband. I've stopped keeping him awake with my snoring, but now the machine keeps him awake. I am soon desperate to wake up one morning and not feel exhausted. Any suggestions or words of encouragement?

Also, I'm having difficulty with sleeping on my side as the pressure on my cheeks makes the air leak from the nasal mask. Any tips there with my current mask or other masks to use? I primarily sleep on my back and am a nose breather. And one last thing. I am a total nose breather but at times my mouth opens slightly and the machine blows the air out my mouth - which wakes my husband and drys my throat. Any suggestions with that as well.

BTW- I have my first follow up with the sleep specialist next week.

Thanks so much!!

-Kristen

[Wulfman...]

Hi Everyone,

About a month ago I was diagnosed with moderate obstructive sleep apnea and it was recommended that I begin using a CPAP machine at night. I've been using it since then with not real difficult adjustment (although psychologically I do not like it at all - it makes me sad). I use it for 5-8 hours per night. I only take it off if something wakes (kids) me up after 4/5 am because I have always had difficulty falling back to sleep at this time of the night and need to sleep on my stomach to even have a chance of falling back to sleep.

I've been waiting to feel some sort of benefit from using the machine - less sleepiness, better concentration, improved memory... Nada - I don't feel any benefit from the machine at all. Even after 8 hours uninterrupted sleep with the machine, I still wake up exhausted - just as tired as I did before using the machine. I'm frustrated. And so is my husband. I've stopped keeping him awake with my snoring, but now the machine keeps him awake. I am soon desperate to wake up one morning and not feel exhausted. Any suggestions or words of encouragement?

Also, I'm having difficulty with sleeping on my side as the pressure on my cheeks makes the air leak from the nasal mask. Any tips there with my current mask or other masks to use? I primarily sleep on my back and am a nose breather. And one last thing. I am a total nose breather but at times my mouth opens slightly and the machine blows the air out my mouth - which wakes my husband and drys my throat. Any suggestions with that as well.

BTW- I have my first follow up with the sleep specialist next week.

Thanks so much!!

-Kristen

Well, you need to hang in there. A month of use is just scratching the surface. This is "baby steps" and one night at a time.
It would help if you would put your settings in your profile.
Also, if you're not already using software (like "Sleepyhead") to monitor your therapy, I'd highly recommend it.
You need to optimize your therapy so your events and leaks are as low as possible and that you're sleeping quality is good.
Some people can get chin straps to work and others need to tape their mouths shut or switch to a full face mask.


Den

.

[kindred spirit]

What settings are you talking about? I put my machine and mask.

[Wulfman...]

What settings are you talking about? I put my machine and mask.

Mainly pressure settings and maybe the humidifier setting.
Ramp pressures and time.
Is your machine using a range of pressures or set to a single pressure?

If you don't already have a clinical manual for your machine, you can download one with this link.

https://sleep.tnet.com/home/files/resme ... -guide.pdf


Den

.

[Julie]

If no one's even told you about pressure settings you're not getting served by your doctors at all - settings are what it's all about with the machines and you absolutely need to know those basics. At the very least get a copy (yours by law) of your study results and your prescription, then we can help you get going properly. It's very possible - happens all the time - that your settings are too low and may need tweaking.

[russmac]

I'm a nose breather and sleep on my back a lot, but I tend to switch to my side at least once in the night. I used to use the ResMed Swift FX mask and always had trouble moving to my side because the changing pressure on my face would cause loud leaks. The exhaust vent would also make noise if it got too close to a pillow or blanket. All of that changed when I switched to the ResMed AirFit P10. I'm not sure how they did it, but the exhaust vent is silent, even if I'm up against a pillow. The mask fit is also more forgiving, and I don't worry about leaks anymore. It's been a game changer for me.

[kindred spirit]

OK - here is what I learned.

My pressure range is 5-15
My settings are all on auto. The humidifier is supposed to auto set based on the relative humidity in the room.
The ramp is also on auto. It starts at 4 or 5 and is supposed to sense when I am asleep and then slowly ramp up to the full amount of pressure needed to maintain my airway.
My average pressure is around 8 to 9 with a nightly average range of 7-10 (this is based on me looking at my sleep report on the unit every day)
My events per hour range from .5 to 3 (again this is based on my looking at the sleep report on the unit every day)
My air leak on the sleep report reads 1l/min (this was 0 until the first night of leakage and has stayed that # every since - not sure if this is a cumulative # in the sleep report or not)
AHI = 0.8
Total AI = 0.7
Central AI = 0.5
I use the myAir web based program to get info but find that the info is VERY basic and not useful at all.
I called the respiratory supply company who brought the unit to me. They have access to more detailed info but not much better as everything is in auto. Here is what the rep told me:
my humidifier is on 4 (but she is not sure if it registers 4 because it is set for auto or if the true reading is 4)
leakage is minimal with only a few days of leakage and minimal at that (my husband would disagree as he says air leaks every night)

Thanks again!!

[Grace~~~]

Hi Kindred Spirit ~~~

Have you downloaded the free Sleepyhead software yet?

[kindred spirit]

No I have not. What is it and how does it work?

[Violet West]

I've been waiting to feel some sort of benefit from using the machine - less sleepiness, better concentration, improved memory... Nada - I don't feel any benefit from the machine at all. Even after 8 hours uninterrupted sleep with the machine, I still wake up exhausted - just as tired as I did before using the machine.

I just want to mention that there are benefits from CPAP therapy that don't fit this description; for me, there are more profound benefits, such as reducing the risk of stroke, atrial fibrillation, and heart attack.

Cultivating a positive attitude toward the therapy and being patient will take you a long way towards success.

[Michelle-OH]

I like my airfit P10 better than any of the other masks I tried, less sound with their exhaust as well. To block out machine sound, I use a sound machine, by dohm. From what I've read, people use tape to catch themselves from mouth breathing, chin straps, etc. Stick with it, I didn't feel a lot more awake for a while, but my headaches were lessened immediately and that alone made it worthwhile for me.

[Julie]

Do a forum search (bar's under the logo) for Sleepyhead and get a ton of info. Or Google it and choose what you'd like to read.

[Gryphon]

To Kindred Spirit -

Sleepyhead is a free software program that acts like a generic version of the software your doctor uses to see the data on your machine. You can pull the data card from your machine and have graphs that show detailed real time data on flow rates, leak rates, and markers for events that your machine detects. You can use this information to get a better idea about what is happening with your therapy. If for example your having mask leaks through your mouth or mask later in the night that don't necessarily wake you up they usually will show on the detailed data.

PAP therapy can be a temperamental thing that can sometimes work wonders right off the bat or sometimes takes time and perseverance to see results. The one thing you don't want to stand in your way is something simple you may not know about because it's happening in your sleep. By using software like sleepyhead you can see what is going on with your machine as you sleep at night and better understand your situation. Everyone of us is unique and even though most doctors try to get it right the first time one nights info from a sleep study is only a quick snapshot.

If your humidifier for your machine is set to auto the heat for the humidifier will default to 4 when it's set to auto - and I'm assuming will change as needed - weather that change is enough to keep you comfortable is up to you to decide. If you go in and change the "Climate control" from auto to your choice you will be able to adjust the temp of the "hose" (if yours is heated) from low 70's to as high as 86 degrees F. Your humidity from off (Passover - cool air & very little added humidity) to up to 8 (think of holding your face over a steaming bowl of hot water) Climate Control is something that I chalk up to pure patient comfort (others may disagree with me on this but) I see no reason for feeling hesitant to go in and change these settings to your preference if you find that the "AUTO everything" isn't helping you adjust to your machine. You might have to go into the Clinicians menu to make these changes as you may be locked out otherwise.

The event levels of .5 to even 3 are not bad. "more .5's would be amazing" coming from the fact that a diagnosis of moderate sleep apnea would have had you at numbers much higher then that nightly.

The "myAir" web based system is good for supper basic info - I mostly use it to have a graph of how long I sleep - I still have insomnia like issues were it's hard for me to sleep as much as I should - having a graph of the number of blower hours on my machine is a quick way for me to track the hours of sleep and give me a nice visual to work towards improving. it's more a way of tracking good nights and bad nights if your AHI is abnormally high in comparison to other days you have a easy way of seeing that with your smart phone. As to the real nitty gritty data that can tell you what's happening when your sleeping the "MyAir" system isn't going to show you that.

You mentioned using your CPAP "5-8" hours per night. That's good but keep in mind that if you have bad apneas even a few hours of sleep with out your machine protecting you can undo all the benefits that the machine was giving you before. Depending on how you sleep and if you had REM sleep it doesn't take much "off PAP time" to mess you up and make you feel awful. If you get woken up and have to go back to sleep try try very hard to make sure your still using your machine. Though if you can't sleep otherwise you do what you have to do but just keep the above in mind. If I nod off for even a little bit I usually get punished for it. (that's my experience and may not reflect yours, just keep it in mind)

Masks - Difficulty sleeping on your side with your current mask can be helped by different masks or changing your pillow or other options. There lots of mask options out there to help fit us as we're all different. If you like to bury your face in your pillow you may need a flexible mask like the dream weaver that's made from cloth, if your having leaks from your mouth that can cause noise that wakes up your husband as you said but also drops the pressure your machine is delivering causing you other problems like dry throat. You might want to try a "Full Face" mask or as others have suggested a chin strap or tape to keep your mouth closed. (personally I use a full face as I have bad allergies and breath through my mouth a lot after I've fallen a sleep.)

Feeling better now that your treating your sleep apnea is something that can take time. I'd document as much as I could and share all of this with your sleep specialist next week when you go in to talk with them. If your feeling like I did when I was first treating my apnea you may want to sit down and write down all the questions and concerns you have because if your still feeling exhausted you may not remember to ask the questions you need to when you have the chance because your still too tired.

Hope some of this was helpful and not too wordy.

Wish you the best with your PAP machine and hope you get to feeling better soon.