What to know about CPAP machines?

Posted by walk4life @walk4life, Jan 17 11:02am

I was recently diagnosed with severe sleep apnea. I had no idea that i had this. I am in a covid research study and one of the tests was a home sleep study. It showed a possibility of sleep apnea. When i showed the doctor my report, he referred me to a pulmonology specialist who after my first visit ordered a sleep study. I did that last week and it showed severe sleep apnea! They have now scheduled me for a sleep study titration with the CPAP. What should i know or be asking about for this? This is all new and unexpected for me.Thanks

Interested in more discussions like this? Go to the Sleep Health Support Group.

I needed CPAP with long covid. Its aldo a treatment for lomg covid. Slept 8 hours the first night and ever since. I leave it in when awake in bed. I breathe deeper with it in. Mine is also attached to oxygen - and even with that - my sleep 02 went down to 83! Get the headgear that comes out of the top of your head. I just use a silicon pillow under my nose (not the pillows that go into the nose.) I don't breathe from my mouth at night so don't need a mask.

Getting the settings right is crucial. I feel I've been successful IN SPITE of my dr rather than because of her. My low pressure was so low, I felt I was smothering while trying to fall asleep. The temp and humidity that you control are crucial too. I wake up parched many mornings. Bit I use it even during the day for a nap. My test showed severe also.

REPLY

Also note that your pressure requirements may change over time and may require adjustments to your CPAP.

One more thing about masks - there are many different kinds by different manufacturers - so make your best estimate what what will work for you and feel free to change mask type if you find them uncomfortable or not working for you.

I had a sinus infection which plugged my nose - my nasal pillow type mask had to be switched to a full-face mask so I could breathe.

I'm using a mask which is a hybrid between pillow type and full face mask - it covered the mouth and uses pillows in contact with the nostrils. I have a high, narrow bridge of my nose which made a full face mask a leaky solution.

REPLY

Thanks to everyone for the replies. I went to the sleep center Monday night for my titration. I used the nasal mask. I woke up feeling refreshed despite the center waking me at 5 am to discharge me. My results showed the number of AHI(i think that is what is was called went from 43.5 to 8) i woke up feeling refreshed. I received a message from the NP today saying she reviewed the results and ordered an auto pap machine for me. She said i should hear from the DME dept. in a couple of weeks. I have to say I am looking forward to getting started with it.

REPLY
@walk4life

Thanks to everyone for the replies. I went to the sleep center Monday night for my titration. I used the nasal mask. I woke up feeling refreshed despite the center waking me at 5 am to discharge me. My results showed the number of AHI(i think that is what is was called went from 43.5 to 8) i woke up feeling refreshed. I received a message from the NP today saying she reviewed the results and ordered an auto pap machine for me. She said i should hear from the DME dept. in a couple of weeks. I have to say I am looking forward to getting started with it.

Jump to this post

Great news!

Please keep us informed of your progress.

One thing I was warned about: After starting with the CPAP, the first few nights I had incredibly vivid dreams, including some startling nightmares. They didn't persist. Apparently, it's one way the brain reacts to finally getting deep sleep after prolonged deprivation.

Unpleasant, but for me it was a tiny price to pay for finally getting some rest!

REPLY
@bebold

I needed CPAP with long covid. Its aldo a treatment for lomg covid. Slept 8 hours the first night and ever since. I leave it in when awake in bed. I breathe deeper with it in. Mine is also attached to oxygen - and even with that - my sleep 02 went down to 83! Get the headgear that comes out of the top of your head. I just use a silicon pillow under my nose (not the pillows that go into the nose.) I don't breathe from my mouth at night so don't need a mask.

Getting the settings right is crucial. I feel I've been successful IN SPITE of my dr rather than because of her. My low pressure was so low, I felt I was smothering while trying to fall asleep. The temp and humidity that you control are crucial too. I wake up parched many mornings. Bit I use it even during the day for a nap. My test showed severe also.

Jump to this post

@bebold, @walk4life, and all...I'm late coming to the conversation, but want to welcome you to the ever-growing group of c-pap-ers! I used one many years ago but stopped for some reason I don't recall. When I began visiting Mayo Florida in 2019, I was referred for a sleep study, found to have very serious obstructive sleep apnea, and began the sleep journey again. Very successfully!

I love my machine! I can't sleep without it now and would be concerned if I were required to go without it at night. I'm convinced it's saved my life, literally, on a couple of occasions. Recently, when I had COVID-19 in July 2023, and again this month a 2nd Covid infection. This machine kept me alive and out of the hospital both times!

I use the bi-pap now as my apnea is so severe and I have neuropathy and forget to breathe during the day This helps me breathe better during the day somehow...I also use a nasal pillow, without any entry into my nostrils. It's the only way I can use the machine, as I'm very claustrophobic and a mask is out.

I also use and recommend a long heated hose, 3-4' long??? which gives you more flexibility when turning over or whatever in bed. I sleep on my sides usually now, but sometimes on my back, and I still breathe well, with my mouth closed since using the heated hose, etc. I live in Florida but keep the A.C. on pretty cool year round so I can better breathe, so the heated hose is a must. Otherwise, and without the water tank, I'd have a dry mouth and nose and couldn't use the thing.

I also recommend the hose from the top of the head. It's more comfy and usually stays out of the way. In the hospital, they have the hose at the front, but since the bed situation is more limited it works ok. I sleep very well now in the hospital using a CPAP.

My oxygen levels kept going below 90 during the nights, as I kept an oximeter under the pillow and checked it when I got up or turned over. It was showing in the mid-80s often, but the sleep department didn't pay attention to my comments. Suppose it seemed unlikely. When I was in the hospital last year, the night staff couldn't keep my O2 levels up and I was put on O2 day and night. When they sent me home, I began using 2L O2 added to my bi-pap and I have never had such excellent sleep prior!!! I am thrilled with the results.

I also had bad nightmares when I first began using the machine, but they soon went away as my sleep patterns improved. Now, I take Prazosin at night for PTSD night terrors. It helps a lot. When I have these bad nights, my breathing is disturbed, and I often awake to choke for air, with severe body tremors and have difficulty for hours after. They are lessening now thankfully, and my sleep is excellent.

I had Covid last July 2023, and again this month, with Covid pneumonia. I firmly believe the bi-pap and O2 saved my life both times and when I've had bronchitis as well. I was sent to the ER last week from the Mayo Covid IV infusion department due to chest pains, shortness of breath, and dizziness, even after 2 Remvesidir IV treatments. My bloodwork indicated pulmonary embolism, but the CT Scan showed Covid pneumonia instead, thankfully. I was sent home with instructions to monitor my O2 levels during the night and day. If they went below 90, I was to get back to the ER ASAP for admittance. 90 is the O2 level cut-off for admittance to the hospital. I promised and even though it went down to 90 for a couple of days, fairly often, I was careful and used my bi-pap with the O2 for 3 days during the day. I think that kept me out of the hospital and possibly saved my life.

I'm now dealing with new autoimmune diseases from the Covid infections, but getting stronger and loving my bi-pap. I'm so thankful to Mayo Docs and to God for that little machine. If you have an apnea diagnosis, do use the machine religiously and you will find a new you. You'll have more energy, be more pleasant, have less brain fog, and much more clarity.

Blessings on this journey. It's crazy and challenging, but you will survive as you push through...Elizabeth

REPLY

Wow, what an experience, Elizabeth! Thanks for chiming in. I hope you continue with great success.

REPLY
@ess77

@bebold, @walk4life, and all...I'm late coming to the conversation, but want to welcome you to the ever-growing group of c-pap-ers! I used one many years ago but stopped for some reason I don't recall. When I began visiting Mayo Florida in 2019, I was referred for a sleep study, found to have very serious obstructive sleep apnea, and began the sleep journey again. Very successfully!

I love my machine! I can't sleep without it now and would be concerned if I were required to go without it at night. I'm convinced it's saved my life, literally, on a couple of occasions. Recently, when I had COVID-19 in July 2023, and again this month a 2nd Covid infection. This machine kept me alive and out of the hospital both times!

I use the bi-pap now as my apnea is so severe and I have neuropathy and forget to breathe during the day This helps me breathe better during the day somehow...I also use a nasal pillow, without any entry into my nostrils. It's the only way I can use the machine, as I'm very claustrophobic and a mask is out.

I also use and recommend a long heated hose, 3-4' long??? which gives you more flexibility when turning over or whatever in bed. I sleep on my sides usually now, but sometimes on my back, and I still breathe well, with my mouth closed since using the heated hose, etc. I live in Florida but keep the A.C. on pretty cool year round so I can better breathe, so the heated hose is a must. Otherwise, and without the water tank, I'd have a dry mouth and nose and couldn't use the thing.

I also recommend the hose from the top of the head. It's more comfy and usually stays out of the way. In the hospital, they have the hose at the front, but since the bed situation is more limited it works ok. I sleep very well now in the hospital using a CPAP.

My oxygen levels kept going below 90 during the nights, as I kept an oximeter under the pillow and checked it when I got up or turned over. It was showing in the mid-80s often, but the sleep department didn't pay attention to my comments. Suppose it seemed unlikely. When I was in the hospital last year, the night staff couldn't keep my O2 levels up and I was put on O2 day and night. When they sent me home, I began using 2L O2 added to my bi-pap and I have never had such excellent sleep prior!!! I am thrilled with the results.

I also had bad nightmares when I first began using the machine, but they soon went away as my sleep patterns improved. Now, I take Prazosin at night for PTSD night terrors. It helps a lot. When I have these bad nights, my breathing is disturbed, and I often awake to choke for air, with severe body tremors and have difficulty for hours after. They are lessening now thankfully, and my sleep is excellent.

I had Covid last July 2023, and again this month, with Covid pneumonia. I firmly believe the bi-pap and O2 saved my life both times and when I've had bronchitis as well. I was sent to the ER last week from the Mayo Covid IV infusion department due to chest pains, shortness of breath, and dizziness, even after 2 Remvesidir IV treatments. My bloodwork indicated pulmonary embolism, but the CT Scan showed Covid pneumonia instead, thankfully. I was sent home with instructions to monitor my O2 levels during the night and day. If they went below 90, I was to get back to the ER ASAP for admittance. 90 is the O2 level cut-off for admittance to the hospital. I promised and even though it went down to 90 for a couple of days, fairly often, I was careful and used my bi-pap with the O2 for 3 days during the day. I think that kept me out of the hospital and possibly saved my life.

I'm now dealing with new autoimmune diseases from the Covid infections, but getting stronger and loving my bi-pap. I'm so thankful to Mayo Docs and to God for that little machine. If you have an apnea diagnosis, do use the machine religiously and you will find a new you. You'll have more energy, be more pleasant, have less brain fog, and much more clarity.

Blessings on this journey. It's crazy and challenging, but you will survive as you push through...Elizabeth

Jump to this post

@ess77 Elizabeth, thank you for sharing your experiences. I am hopeful that when i get the machine it will work as well for me.

REPLY
@walk4life

@ess77 Elizabeth, thank you for sharing your experiences. I am hopeful that when i get the machine it will work as well for me.

Jump to this post

@walk4life, and all...The secret of this treatment in my opinion...
Accept the fact you have this serious problem during your sleeping,
Understand the numbers well enough to see the importance of changing your sleep patterns,
Ask specific questions from the staff to truly understand.....so you can truly Accept!!!
Use it every single night.
Use it whether you want to or not.
Use it no matter what, even if you think you don't need it.
USE THE MACHINE EVERY NIGHT.
ACCEPT YOUR BODY AS IT IS NOW.
DO WHAT IT TAKES TO MAKE YOU BETTER.
Took me a long time to get it, to understand fully and accept. So glad I did before it was too late to do some good!
Blessings, Elizabeth

REPLY

My recent home pulseox overnight study showed my 02 still went down to 83%. They increased my 02 attached to my CPAP to 4L which feels like a lot to me. My concentrator only goes up to 5 total. The doc says when I'm on my side, my problem is Obstructive, when I'm on my back, I have central. She was afraid to put me on BiPAP tho. There is a thought that the longer you use CPAP the more Central you end up with. Part of me thinks the CPAP thing is easy money for doctors and supply companies but then as a user, I know it is saving my life.

I guess my biggest thing about CPAP was finding out exactly how much supplies are because it's the beginning of the year again and I have a deductable. 3 filters for the Resmed 10, that are about an inch square are $30 each and are supposed to be changed every 2 weeks. The little silicon thing that goes under your nose (not the pillows that go in your nose, but the cushion that just fits under your nose (which is the only reason I can use CPAP also because of claustrophobia!), they are also $30. Change every 2 weeks. That's $180 just for 3 tiny filters and 3 silicon sleeves every 6 weeks.

So, I have to only get new nose cushions for now. So expensive. rediculously expensive. And you have to have a doctor in order for insurance to pay. And you can't get supplies without a doctors order. The good news being if they were not by script only, insurance wouldn't pay and who can afford MINIMUM $180 every 6 weeks - never mind the hose and facemask and tiny little thing in the back with velcro that keeps the head set on. Which I think all total was close to $800 every 6 months? Racket. It's definitely a money racket.

And with all the people on CPAP now, have we asked why? Is it the plastic that is in our food? There's got to be some reason nearly everyone who takes a sleep test flunks? I'm sure I needed CPAP prior to Covid, but I couldn't afford the $180 copay for the test 10 years ago. And all they had was a full face mask I think. Couldn't have done it. Anyway, thanks for your post. I do think people are using this technology to rip-off insurance companies but I'm not sure that can be fixed until people get less greedy. And looking at the world, that's not going to happen sadly. Best to everyone. Use your CPAP. (my fitbit says my average last night was 89. My low 84, high 93. That's pretty bad even for me. Usually my average on my fitbit is 93%. low maybe 88-89.)

REPLY
@bebold

My recent home pulseox overnight study showed my 02 still went down to 83%. They increased my 02 attached to my CPAP to 4L which feels like a lot to me. My concentrator only goes up to 5 total. The doc says when I'm on my side, my problem is Obstructive, when I'm on my back, I have central. She was afraid to put me on BiPAP tho. There is a thought that the longer you use CPAP the more Central you end up with. Part of me thinks the CPAP thing is easy money for doctors and supply companies but then as a user, I know it is saving my life.

I guess my biggest thing about CPAP was finding out exactly how much supplies are because it's the beginning of the year again and I have a deductable. 3 filters for the Resmed 10, that are about an inch square are $30 each and are supposed to be changed every 2 weeks. The little silicon thing that goes under your nose (not the pillows that go in your nose, but the cushion that just fits under your nose (which is the only reason I can use CPAP also because of claustrophobia!), they are also $30. Change every 2 weeks. That's $180 just for 3 tiny filters and 3 silicon sleeves every 6 weeks.

So, I have to only get new nose cushions for now. So expensive. rediculously expensive. And you have to have a doctor in order for insurance to pay. And you can't get supplies without a doctors order. The good news being if they were not by script only, insurance wouldn't pay and who can afford MINIMUM $180 every 6 weeks - never mind the hose and facemask and tiny little thing in the back with velcro that keeps the head set on. Which I think all total was close to $800 every 6 months? Racket. It's definitely a money racket.

And with all the people on CPAP now, have we asked why? Is it the plastic that is in our food? There's got to be some reason nearly everyone who takes a sleep test flunks? I'm sure I needed CPAP prior to Covid, but I couldn't afford the $180 copay for the test 10 years ago. And all they had was a full face mask I think. Couldn't have done it. Anyway, thanks for your post. I do think people are using this technology to rip-off insurance companies but I'm not sure that can be fixed until people get less greedy. And looking at the world, that's not going to happen sadly. Best to everyone. Use your CPAP. (my fitbit says my average last night was 89. My low 84, high 93. That's pretty bad even for me. Usually my average on my fitbit is 93%. low maybe 88-89.)

Jump to this post

Hint: You can find a lot of cheap CPAP supplies on sites like craigslist.

For things like filters, I agree the prices are insane. I found filters for an older machine that were exactly 4x the size I needed; I bought a bunch on Ebay for a couple bucks and cut them to fit. I've probably saved hundreds doing that over my 20+ years of CPAP use. (A lot of those years I was uninsured.)

REPLY
Please sign in or register to post a reply.