New to CPAP feeling awful

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Jeanbean

Stalwart
Messages
104
Reaction score
20
Points
63
Hi I just started using CPAP and it's terrible. I've tried two masks and can't sleep more than 2.5 hours a night. I wake up with it blowing in my face and have to remove it. Any words of wisdom?

Thanks, Jeanne
 
Hi Jeanne, my wife started using a CPAP about a year ago. She got a full face mask (covers nose and mouth). It took a while to get used to it. Even after using it for so long, she still has an odd night from time to time where she only uses it for a couple of hours, but mostly she is able to use it for ~6 hours a night. She just had to commit to using it until it became habitual.

She falls asleep super easy thanks to her meds, but if you are having trouble falling asleep with the CPAP, you should try to do things that help with falling asleep like going to bed on a routine (same time every night), not reading or watching tv or playing with phones/tablets in bed, not eating 2-3 hours before bed time, etc.
 
Bernard,
Thanks for the answer: I now have a full face mask as the nose one did not work for me. My problem is the CPAP wakes me up a few hours into it blowing full blast to 15-17 and I can't sleep. Does that sound right? I wake up after two hours of using it and have to remove it and then I'm up for hours which does a number on me due to my seizure disorder. I've been so crabby and feel so out of it for days. I also fall asleep easily due to meds and was in a routine and do not use phone/computer. I think I will call the doctor's office today as this is really bothering me and causing so many problems.
Thanks so much, Jeanne
 
My wife's CPAP has a built in computer that controls the settings. It's programmed to start the air flow slowly and ramp up to the therapeutic rate as she falls asleep. I'd suggest reaching out to the sleep doc that prescribed the CPAP to ensure that your machine is programmed on the correct setting for you. My wife's CPAP uploads her usage history to a server and her sleep doc can see it's settings and her usage history from his office. I think most CPAP machines work like that these days.
 
I think my wife's therapeutic setting is around 7 BTW. 15-17 sounds really strong for someone just starting to use it, but I'm no expert in this field.
 
For most, cpap pressure ranges between 6 and 14. Having an auto machine my lowest pressure is set at 10 and it can go as high as it needs to if I have an episode while sleeping, which sometimes is 15+. 😯

I'm no dr but it sounds like you're not getting a good seal. Are your straps too tight or too loose? Facial oils, congestion and even sleep positions can mess with that too. Keep trying different masks if you can.

The other night I had air going everywhere and got up to see what was going on. Turns out the little plastic diffuser fell off. I had to find another one and I was all set. Most nights I hear air blowing and it wakes me up a little. Turns out it's air from the exhalation port hitting my pillow. I shift a little and it stops. What masks have you tried?

I agree about reaching out to your Dr.

Check out cpaptalk.com. Lots of good info there.

Good luck, you'll get there. 🙂👍🏼
 
My husband had gotten a mouth/nose cover CPAP approximately a month ago. After using the CPAP the first few nights he noticed there needed to be a few changes to the settings and learned distilled water is the best choice for him. Once the few changes his sleeping pattern went from 4 hours to 7 or even 8 at times. I am very amazed at how well this item is working for him.
 
For most, cpap pressure ranges between 6 and 14. Having an auto machine my lowest pressure is set at 10 and it can go as high as it needs to if I have an episode while sleeping, which sometimes is 15+. 😯

I'm no dr but it sounds like you're not getting a good seal. Are your straps too tight or too loose? Facial oils, congestion and even sleep positions can mess with that too. Keep trying different masks if you can.

The other night I had air going everywhere and got up to see what was going on. Turns out the little plastic diffuser fell off. I had to find another one and I was all set. Most nights I hear air blowing and it wakes me up a little. Turns out it's air from the exhalation port hitting my pillow. I shift a little and it stops. What masks have you tried?

I agree about reaching out to your Dr.

Check out cpaptalk.com. Lots of good info there.

Good luck, you'll get there. 🙂👍🏼
Hi CathyAnn,
I've tried two masks now, the small nose one which caused a lot of pain on my face and didn't work in general. Then they gave me the full mask which is much better and the high pressure at some point is still waking me up so I take it off and try again later. I'm trying to get up to 4 hours and just can't seem to do it so that causes stress knowing I'll have to give it up for a year due to insurance guidelines. I'm also now scheduled for knee replacement surgery the end of March so that throws a wrench into everything with the cpap. I see the nurse practitioner this coming week. Part of my problem is I don't drive so then they will have me go back to the supplier, which I've been many times now, I have to set up transportation again. Very difficult in general. I missed the first month using it due to a family member dealing with cancer and I needed to help. I could not handle doing both!! Thanks for the information and the website. So helpful. Thanks, Jeanne
 
My husband had gotten a mouth/nose cover CPAP approximately a month ago. After using the CPAP the first few nights he noticed there needed to be a few changes to the settings and learned distilled water is the best choice for him. Once the few changes his sleeping pattern went from 4 hours to 7 or even 8 at times. I am very amazed at how well this item is working for him.
Hi Sue,
I do use distilled water in mine as that was recommended. I am glad to hear your husband is doing well on the CPAP!! I hope to get there. Next week I will see the nurse practitioner so that should help.
Thanks, Jeanne
 
My wife's CPAP has a built in computer that controls the settings. It's programmed to start the air flow slowly and ramp up to the therapeutic rate as she falls asleep. I'd suggest reaching out to the sleep doc that prescribed the CPAP to ensure that your machine is programmed on the correct setting for you. My wife's CPAP uploads her usage history to a server and her sleep doc can see it's settings and her usage history from his office. I think most CPAP machines work like that these days.
Bernard,
Mine is the same and I have an appointment with the nurse practitioner next Wednesday so hopefully will get some answers.

Thanks, Jeanne
 
Hi Sue,
I do use distilled water in mine as that was recommended. I am glad to hear your husband is doing well on the CPAP!! I hope to get there. Next week I will see the nurse practitioner so that should help.
Thanks, Jeanne
Will be keeping you in my thoughts that all goes well! :) -Sue
 
I am wondering if anyone has a vagal nerve stimulator and wearing a CPAP? My neurologist said the VNS will make the sleep apnea worse so I should have been tested with the VNS turned off. I did tell the sleep clinic but they didn't seem interested and now I'm having so many problems. I almost had a seizure based on my auras the last two days due to I think sleep deprivation from wearing the CPAP being woken up and staying up for hours on end. I am waiting for a call from my epileptologist to see what she has to say. It's hard being so far from the clinic 3.5 hours away and trying to let the pulmonologist know. They should coordinate medical not me. I've run into these types of problems before with lack of care due to my VNS.
Thanks, Jeanne
 
Back
Top Bottom