Just wondering about those who do, cope with wearing a mask and all the tubing stuff. My specialist, my doctor, my wife, and other doctor have cornered me into hiring one of these monstrosities.
Rip and Rosie said
11:27 AM Dec 8, 2019
Well done to those who pushed you into this!
It will reduce your risk of stroke and cardiac disorders...and improve your life on a daily basis!!!
I have been using CPAP for a few years now, and it was the hardest, most difficult thing I have had to deal with......I hated it !!! I ranted !!! I raved!!! I even threw it across the room.
However, this far down the track, I cant sleep without it.
How do you cope, especially in the beginning?......get good support, some one or some group who will listen and encourage you....every day! I found a facebook group and would never have coped without those people.
Be brave.
dabbler said
12:50 PM Dec 8, 2019
There are a variety of masks on the market. Like anything it's a matter of finding the right one.
aussie_paul said
02:57 PM Dec 8, 2019
I have been using CPAP at home and in the van for around 4 years. I was diagnosed with upper level moderate to severe. I think my number was 27 (Number of times I stopped breathing in an hour).
I was not happy that I was going to have my face covered and refused to even try a full face mask. I started with nasal pillows style mask but I was getting large leaks as the pressure setting was increased. Nasal pillow masks seem to be ok for less than a pressure of 10 cm/H2O, higher than that you will have large leaks.
After talking to a few CPAP user friends I then went for a nasal mask (mouth not covered by mask) where you can disconnect simply to get up to toilet breaks etc. Nasal masks have a magnet on each strap to hold everything together instead of velcro. I am on a pressure of 16 cm/H2O and have near perfect numbers, and no real inconvenience to me.
Unfortunately I did not get a reduction in my exhaustion level BUT it will reduce my risk of stroke and cardiac disorders and seems to help with my Diabetes control.
The CPAP masks styles are: Full face, Nasal, and Nasal Pillow.
Google will show a lot of info if you use the above terminology.
Aussie Paul.
-- Edited by aussie_paul on Sunday 8th of December 2019 02:58:19 PM
-- Edited by aussie_paul on Sunday 8th of December 2019 03:03:30 PM
Rip and Rosie said
04:40 PM Dec 8, 2019
Agree with you dabbler and Aussie Paul......you have to try as many different types of masks as you can to find the one that best suits you.
I ended up with a nasal mask- the Eson, so that my mouth is free, . easy to disconnect to go to the toilet.
I'm on 10.5 cm/h2o and my numbers (AHI) have dropped from 67 to 0.8 and I'm cheering.
It wont happen overnight, but it will happen.
aussie_paul said
05:13 PM Dec 8, 2019
My numbers were around the 2.4 mark until I shed 5kg last year and numbers are now 0.3 to 1.5.
Aussie Paul.
inthegloaming said
06:56 AM Dec 9, 2019
I hated my CPAP for about 2 years and now I don't find it so troublesome. I use it every night and always if I take an afternoon nap. Sure made a difference to my general health, and reduces the possibility of falling asleep at the wheel. The main issue for travelling is dealing with extreme cold and extreme heat. I have done a lot of remote 4x4 trips coping with heat and dust and corrugations, my CPAP has been down the Canning Stock Route. My rig has an auxiliary deep cycle battery and I look after it really well to be sure I always have enough power for the CPAP. I also carry a small CPAP battery that is good for 2 nights. It is important to keep the CPAP clean and the mask in particular stored carefully. Also important to get any sunscreen off your face before using the mask, or you will reduce the life of the mask material.
-- Edited by inthegloaming on Monday 9th of December 2019 06:56:35 AM
iana said
07:44 AM Dec 11, 2019
Hi folks, my number is about 26. Well I have set it up, looked at it and thought "you have to be joking!", maybe tonight, yeh right. Do you guys have this machine in the van on your travels ?, it's too big, if it works I will have to get the smaller one with out the humidifier. Somehow I just can't see this as a winner, I have to wear too much other junk during the day, to have to have this at night, might just be the last straw.
Rip and Rosie said
08:23 AM Dec 11, 2019
Yes, I travel with the machine. Used to use a jump starter battery thingo but only got one or two nights out of it. The van we have now has a battery/solar set up, so always charged....just needed a 12 volt cable and cigarette plug for the machine. It runs with the humidifier, no problems.
In my humble opinion, I had 2 choices......continue as I was, tired, cranky, heading for a stroke, which probably wouldn't kill me but make me a vegetable....or get used to the bloody awful stinking torture of CPAP and use it every single time I went down for a sleep......Now, you will agree, there is really no choice at all.
Well that wasn't too successful, glad to send that contraption back. Being deaf doesn't help, couldn't tell if it was on or not, woke up half suffocating before ripping the mask off. If you sleep on your back as normal, I see it may be of some benefit, but I try to sleep on my side. The problem I see with the CPAP machine, is that it encourages you to sleep on your back, once you start that, you are committed forever, as that position worsens (air way obstruction) the problem.
Rip and Rosie said
09:42 AM Jan 13, 2020
I'm sorry you couldn't make it work.
For the record, I sleep on my side, never on my back......works for me.
best wishes
RJ65 said
05:08 PM Jan 20, 2020
I hired my CPAP machine, and tried all sorts of options. [Masks etc]. I seem to get some relief from sleeping on my side, with a fan gently wafting a breeze into my face. Plus lots of dieting and exercise.
If the CPAP machine worked periodically, like forcing air into the lungs in something like a normal breathing rhythm, I reckon I could get used it it. But no, the feed of air is constant, and ramps up, so I wake up suddenly in a panic with this hurricane of air down my throat. It seems like a dumb design to me. It should imitate natural breathing cycles, not trying to turn reciprocating lungs into a jet turbine!
The basic problem is that we tend to forget how to breathe while asleep. At least with an aqualung you get the option of when to breathe. Suck air in, push it out. The machine should do the pushing and sucking.
Of course that is not the only problem, because the airways collapse as well. So what? Ok, that means the machine pushes the air in, and pauses, detecting the natural exhalation, which is the cue to push more air in. So the machine should not suck air. Maintaining a CONSTANT positive airway pressure thus seems counter-productive. Well, of course I am not an expert, so I am probably wrong.
But animals have been breathing for millions of years, hundreds of millions of years on land, and gills before that. Medicine is great, but if one loses a leg, they get the artificial one to act as normally as possible. The same philosophy should be used when designing breathing assisting equipment.
If for no other reason, it will help people adapt more readily, and thus mean more quality of life for us. Just my two-cents.
Rip and Rosie said
09:48 AM Jan 25, 2020
RJ65 wrote:
I hired my CPAP machine, and tried all sorts of options. [Masks etc]. I seem to get some relief from sleeping on my side, with a fan gently wafting a breeze into my face. Plus lots of dieting and exercise. If the CPAP machine worked periodically, like forcing air into the lungs in something like a normal breathing rhythm, I reckon I could get used it it. But no, the feed of air is constant, and ramps up, so I wake up suddenly in a panic with this hurricane of air down my throat. It seems like a dumb design to me. It should imitate natural breathing cycles, not trying to turn reciprocating lungs into a jet turbine! The basic problem is that we tend to forget how to breathe while asleep. At least with an aqualung you get the option of when to breathe. Suck air in, push it out. The machine should do the pushing and sucking. Of course that is not the only problem, because the airways collapse as well. So what? Ok, that means the machine pushes the air in, and pauses, detecting the natural exhalation, which is the cue to push more air in. So the machine should not suck air. Maintaining a CONSTANT positive airway pressure thus seems counter-productive. Well, of course I am not an expert, so I am probably wrong. But animals have been breathing for millions of years, hundreds of millions of years on land, and gills before that. Medicine is great, but if one loses a leg, they get the artificial one to act as normally as possible. The same philosophy should be used when designing breathing assisting equipment. If for no other reason, it will help people adapt more readily, and thus mean more quality of life for us. Just my two-cents.
I hated the ramp thing. Like you, it seemed to wake me.....so I turned it off
Mine also had a feature called Expiratory Pressure Relief which turned down the pressure to allow you to exhale more easily....trouble was it would go back up again just before the next breath, which annoyed me no end...up down up down....turned it off as well. Much more comfortable with continuous pressure.
The machine should NOT be doing "the pushing and pulling" as you call it. It should just provide enough pressure to open you airways, and you should be breathing for yourself.
Kidsolo said
04:02 PM Jan 30, 2020
iana wrote:
it's too big, if it works I will have to get the smaller one with out the humidifier.
If you have the resmed 10 machine, you can buy the end cap accessory that replaces the humidifier. no more remembering to fill it with water every night. https://www.thecpapclinic.com.au/shop/item/resmed-airsense-10-side-cover?keyword_k=&campaign=Search_Rescue&gclid=CjwKCAiA98TxBRBtEiwAVRLqu05CWsh9R7CIhtOKa00kPPFznflKTtPuNbT0WXRsSm3J9RNruFRw8BoCCfcQAvD_BwE
I put off using a machine for over 5 years, biggest mistake I ever made. I don't mind wearing the mask but I I subconsciously rip the mask off in the middle of the night for no reason.
-- Edited by Kidsolo on Thursday 30th of January 2020 04:03:44 PM
Rip and Rosie said
11:10 AM Jan 31, 2020
Kidsolo wrote:
iana wrote:
it's too big, if it works I will have to get the smaller one with out the humidifier.
If you have the resmed 10 machine, you can buy the end cap accessory that replaces the humidifier. no more remembering to fill it with water every night.
-- Edited by Kidsolo on Thursday 30th of January 2020 04:03:44 PM
Yes, I gave up on the humidifier ...makes no difference to me.....and heaps less trouble.
However, I do have a friend who gets a nose bleed if he doesn't use the humidity.
Horses for courses I guess.
Rosie
Shrek said
11:29 PM Apr 11, 2020
To all those who are new to CPAP's, persevere and in time it will be as natural as sleeping without one. I have been using a CPAP for 30 years and although I look like Darth Vader, It has prolonged my life. My doctor said I was heading for an early stroke or heart attack if I did not use it.
Just wondering about those who do, cope with wearing a mask and all the tubing stuff. My specialist, my doctor, my wife, and other doctor have cornered me into hiring one of these monstrosities.
It will reduce your risk of stroke and cardiac disorders...and improve your life on a daily basis!!!
I have been using CPAP for a few years now, and it was the hardest, most difficult thing I have had to deal with......I hated it !!! I ranted !!! I raved!!! I even threw it across the room.
However, this far down the track, I cant sleep without it.
How do you cope, especially in the beginning?......get good support, some one or some group who will listen and encourage you....every day! I found a facebook group and would never have coped without those people.
Be brave.
I have been using CPAP at home and in the van for around 4 years. I was diagnosed with upper level moderate to severe. I think my number was 27 (Number of times I stopped breathing in an hour).
I was not happy that I was going to have my face covered and refused to even try a full face mask. I started with nasal pillows style mask but I was getting large leaks as the pressure setting was increased. Nasal pillow masks seem to be ok for less than a pressure of 10 cm/H2O, higher than that you will have large leaks.
After talking to a few CPAP user friends I then went for a nasal mask (mouth not covered by mask) where you can disconnect simply to get up to toilet breaks etc. Nasal masks have a magnet on each strap to hold everything together instead of velcro. I am on a pressure of 16 cm/H2O and have near perfect numbers, and no real inconvenience to me.
Unfortunately I did not get a reduction in my exhaustion level BUT it will reduce my risk of stroke and cardiac disorders and seems to help with my Diabetes control.
The CPAP masks styles are: Full face, Nasal, and Nasal Pillow.
Google will show a lot of info if you use the above terminology.
Aussie Paul.
-- Edited by aussie_paul on Sunday 8th of December 2019 02:58:19 PM
-- Edited by aussie_paul on Sunday 8th of December 2019 03:03:30 PM
I ended up with a nasal mask- the Eson, so that my mouth is free, . easy to disconnect to go to the toilet.
I'm on 10.5 cm/h2o and my numbers (AHI) have dropped from 67 to 0.8 and I'm cheering.
It wont happen overnight, but it will happen.
My numbers were around the 2.4 mark until I shed 5kg last year and numbers are now 0.3 to 1.5.
Aussie Paul.
I hated my CPAP for about 2 years and now I don't find it so troublesome. I use it every night and always if I take an afternoon nap. Sure made a difference to my general health, and reduces the possibility of falling asleep at the wheel. The main issue for travelling is dealing with extreme cold and extreme heat. I have done a lot of remote 4x4 trips coping with heat and dust and corrugations, my CPAP has been down the Canning Stock Route. My rig has an auxiliary deep cycle battery and I look after it really well to be sure I always have enough power for the CPAP. I also carry a small CPAP battery that is good for 2 nights. It is important to keep the CPAP clean and the mask in particular stored carefully. Also important to get any sunscreen off your face before using the mask, or you will reduce the life of the mask material.
-- Edited by inthegloaming on Monday 9th of December 2019 06:56:35 AM
Yes, I travel with the machine.
Used to use a jump starter battery thingo but only got one or two nights out of it. The van we have now has a battery/solar set up, so always charged....just needed a 12 volt cable and cigarette plug for the machine. It runs with the humidifier, no problems.
In my humble opinion, I had 2 choices......continue as I was, tired, cranky, heading for a stroke, which probably wouldn't kill me but make me a vegetable....or get used to the bloody awful stinking torture of CPAP and use it every single time I went down for a sleep......Now, you will agree, there is really no choice at all.
So I use it, and life is better.
Rosie
For the record, I sleep on my side, never on my back......works for me.
best wishes
If the CPAP machine worked periodically, like forcing air into the lungs in something like a normal breathing rhythm, I reckon I could get used it it. But no, the feed of air is constant, and ramps up, so I wake up suddenly in a panic with this hurricane of air down my throat. It seems like a dumb design to me. It should imitate natural breathing cycles, not trying to turn reciprocating lungs into a jet turbine!
The basic problem is that we tend to forget how to breathe while asleep. At least with an aqualung you get the option of when to breathe. Suck air in, push it out. The machine should do the pushing and sucking.
Of course that is not the only problem, because the airways collapse as well. So what? Ok, that means the machine pushes the air in, and pauses, detecting the natural exhalation, which is the cue to push more air in. So the machine should not suck air. Maintaining a CONSTANT positive airway pressure thus seems counter-productive. Well, of course I am not an expert, so I am probably wrong.
But animals have been breathing for millions of years, hundreds of millions of years on land, and gills before that. Medicine is great, but if one loses a leg, they get the artificial one to act as normally as possible. The same philosophy should be used when designing breathing assisting equipment.
If for no other reason, it will help people adapt more readily, and thus mean more quality of life for us. Just my two-cents.
I hated the ramp thing. Like you, it seemed to wake me.....so I turned it off
Mine also had a feature called Expiratory Pressure Relief which turned down the pressure to allow you to exhale more easily....trouble was it would go back up again just before the next breath, which annoyed me no end...up down up down....turned it off as well. Much more comfortable with continuous pressure.
The machine should NOT be doing "the pushing and pulling" as you call it. It should just provide enough pressure to open you airways, and you should be breathing for yourself.
If you have the resmed 10 machine, you can buy the end cap accessory that replaces the humidifier. no more remembering to fill it with water every night.
https://www.thecpapclinic.com.au/shop/item/resmed-airsense-10-side-cover?keyword_k=&campaign=Search_Rescue&gclid=CjwKCAiA98TxBRBtEiwAVRLqu05CWsh9R7CIhtOKa00kPPFznflKTtPuNbT0WXRsSm3J9RNruFRw8BoCCfcQAvD_BwE
I put off using a machine for over 5 years, biggest mistake I ever made. I don't mind wearing the mask but I I subconsciously rip the mask off in the middle of the night for no reason.
-- Edited by Kidsolo on Thursday 30th of January 2020 04:03:44 PM
Yes, I gave up on the humidifier ...makes no difference to me.....and heaps less trouble.
However, I do have a friend who gets a nose bleed if he doesn't use the humidity.
Horses for courses I guess.
Rosie
Shrek