Newbie would like to hear success stories, please.
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- Posts: 3
- Joined: Tue Sep 01, 2020 4:50 pm
- Location: Arizona
Re: Newbie would like to hear success stories, please.
I am extremely grateful to all of you who share your time and wisdom on this site. I started on CPAP in late March after a diagnosis of mild apnea and took to it like a duck to water, only 2 nights under 6 hours use to date. I had been desperate to get my life back after never fully recovering from a bout with swine flu in 2009 that almost took my life. I lost 65lbs over the next 3 years and started to look like a holocaust survivor, I was eating all day long and losing weight. Doctors could not figure out what was wrong, my labs looked good but I did not. I gave up on the drug pushing doctors and went to a naturopath and with the help of IV's and expensive powdered food my weight loss stopped. Gaining the weight back was very difficult until I started CPAP, for the first time in 11 years I am packing on pounds and I eat very healthy food for the most part.
I was also recently diagnosed with mild heart failure at the same time as OA and started taking Losartan, I felt terrible on that drug and finally felt the true benefit of CPAP when I quit taking it. That was around the time our blast of nonstop ozone pollution kicked in for the summer and that slowed me down as it has for the last decade. In the last week with some windy storms and declining ozone I am feeling better than I have in at least 11 years, it is a mental challenge adjusting to having some hope again. I live with chronic pain like Pugsy and it has affected my sleep for over 30 years, my sleep is much more restful now. My blood pressure was much lower on about day 5 of CPAP and I reduced my BP meds. Well that's enough for now I'll be back with some questions later.
I was also recently diagnosed with mild heart failure at the same time as OA and started taking Losartan, I felt terrible on that drug and finally felt the true benefit of CPAP when I quit taking it. That was around the time our blast of nonstop ozone pollution kicked in for the summer and that slowed me down as it has for the last decade. In the last week with some windy storms and declining ozone I am feeling better than I have in at least 11 years, it is a mental challenge adjusting to having some hope again. I live with chronic pain like Pugsy and it has affected my sleep for over 30 years, my sleep is much more restful now. My blood pressure was much lower on about day 5 of CPAP and I reduced my BP meds. Well that's enough for now I'll be back with some questions later.
_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier |
Mask: ResMed AirFit F30i Full Face CPAP Mask with Headgear |
Re: Newbie would like to hear success stories, please.
Hi, Catnapper
_ I am pretty sure my case would be a success, at least at an 80-90% level. That is, in a scale "How You Feel" (basically reflecting energy for stuffs, and sleepness during the day) I am always above 4.0, up to 4.7. Hope I am going to get some consistent > 4.5. Remaining drawbacks appear associated with arousal/awakenings due to respiratory effort interrupting REM stages, followed by some 2 damn trips to toilet;
_ man, 68, slim all life; 50 years of miserable sleep nights. Thought was anxiety or depression, or bladder problems (trip to toilet every one hour), all kinds of crazy medications and supplements. Nothing ever worked, except Benzo’s, which allowed me to go for a reasonable professional career. Pretty much a suicider just after retirement on June, 2015;
_ My doctor suggested CPAP on September, 2017. PSG analysis, yet not conclusive, showed very low AHI (useless thing for UARS/RLS sufferer, like me), and non-conclusive PLMS index;
_ On September, 2017 started on brick CPAP/nasal mask. Immediate first results came up (rather larger chunks of sleep, from 1 to 1.5 hrs. to some up to 4.5 hours; nightmares subsided a little; lesser trips to toilet), even with mouth breathing, dry mouth, blind use of the machine;
_ beginning of 2018, moved to APAP for some 1.5 months; this time already on FFM f20 (still today); did not improved anything. Knew OSCAR about this time around (essential for subsequent results; no chance to improve without this tool). Soon realized I would have to take care myself of my therapy; no chance with MD’s (it apperars they still believe on AHI for UARS people!);
_ these days: still learning; very happy on no medication, except for some 7 mg of CBD daily! OSCAR tells me pretty much everything I need to guide my own therapy (I think I am able to get from it, combined with some audio-recorded nights: 1_sleep efficiency; 2_ respiratory-driven arousals/awakenings/wake ups, as opposed to other causes, in particular, RLS-driven ones; 3_carefful choice and adjust of pressure parameters and effects on respiratory rate, TV and MV, as well as the relationships between these parameters and How I Feel during the day; 4_ interpret outcomes from leaks and neck soft collar);
_ I think I learned that UARS (drawbacks counted on number of arousals/awakenings, not on AHI) is a tough thing to tame, far much harder than sleep apnea itself, maybe. And great surprise for me: UARS, in my observations, looks far more common in people that come into CPAP’s Forums in general (maybe 75% of the cases?).
Good luck and encouragements to all
_ I am pretty sure my case would be a success, at least at an 80-90% level. That is, in a scale "How You Feel" (basically reflecting energy for stuffs, and sleepness during the day) I am always above 4.0, up to 4.7. Hope I am going to get some consistent > 4.5. Remaining drawbacks appear associated with arousal/awakenings due to respiratory effort interrupting REM stages, followed by some 2 damn trips to toilet;
_ man, 68, slim all life; 50 years of miserable sleep nights. Thought was anxiety or depression, or bladder problems (trip to toilet every one hour), all kinds of crazy medications and supplements. Nothing ever worked, except Benzo’s, which allowed me to go for a reasonable professional career. Pretty much a suicider just after retirement on June, 2015;
_ My doctor suggested CPAP on September, 2017. PSG analysis, yet not conclusive, showed very low AHI (useless thing for UARS/RLS sufferer, like me), and non-conclusive PLMS index;
_ On September, 2017 started on brick CPAP/nasal mask. Immediate first results came up (rather larger chunks of sleep, from 1 to 1.5 hrs. to some up to 4.5 hours; nightmares subsided a little; lesser trips to toilet), even with mouth breathing, dry mouth, blind use of the machine;
_ beginning of 2018, moved to APAP for some 1.5 months; this time already on FFM f20 (still today); did not improved anything. Knew OSCAR about this time around (essential for subsequent results; no chance to improve without this tool). Soon realized I would have to take care myself of my therapy; no chance with MD’s (it apperars they still believe on AHI for UARS people!);
_ these days: still learning; very happy on no medication, except for some 7 mg of CBD daily! OSCAR tells me pretty much everything I need to guide my own therapy (I think I am able to get from it, combined with some audio-recorded nights: 1_sleep efficiency; 2_ respiratory-driven arousals/awakenings/wake ups, as opposed to other causes, in particular, RLS-driven ones; 3_carefful choice and adjust of pressure parameters and effects on respiratory rate, TV and MV, as well as the relationships between these parameters and How I Feel during the day; 4_ interpret outcomes from leaks and neck soft collar);
_ I think I learned that UARS (drawbacks counted on number of arousals/awakenings, not on AHI) is a tough thing to tame, far much harder than sleep apnea itself, maybe. And great surprise for me: UARS, in my observations, looks far more common in people that come into CPAP’s Forums in general (maybe 75% of the cases?).
Good luck and encouragements to all
_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier |
Mask: AirFit™ F20 For Her Full Face CPAP Mask with Headgear |
Additional Comments: OSCAR |
Last edited by mper!? on Fri Sep 18, 2020 5:59 am, edited 1 time in total.
Not a Doctor.
"The goal is to turn data into information, and information into insight (Carly Fiorina)".
"The goal is to turn data into information, and information into insight (Carly Fiorina)".
Re: Newbie would like to hear success stories, please.
_ to illustrate my journey: three charts, from bottom to top: 1_ last day on APAP, 2_ day after = first day on Vauto, and 3_yesterday (this last one matches with HYF index of 4.7);
good luck
good luck
_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier |
Mask: AirFit™ F20 For Her Full Face CPAP Mask with Headgear |
Additional Comments: OSCAR |
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Not a Doctor.
"The goal is to turn data into information, and information into insight (Carly Fiorina)".
"The goal is to turn data into information, and information into insight (Carly Fiorina)".
Re: Newbie would like to hear success stories, please.
I posted this as a separate entry and was then asked if I could copy it into this thread. So here we go. I am happy to answer any and all questions as well.
Hello all. I am about two months into this CPAP thing. It has been a real trip to say the least. I was super frustrated at the beginning. No matter what I did, my data looked horrible. I could not sleep well. I would wake up frequently. And I was super jealous of the people that would post screenshots of their AHIs below 1. As hard as I was trying I was just hoping to get into single digits one day. Here is a typical night from about a month ago. I hope it comes out in the right place!
Fast forward to this past week or so. Through perseverance, asking a lot of questions on this board, getting more comfortable with my mask (I use the nasal cushion), and practicing better sleep hygiene, I have finally gotten to where I believe I should be. Or at least close. Here is my data from last night:
I am finally starting to gain confidence and feel that I am winning. I want to share that this is a marathon and not a sprint. I still have a tremendous amount to learn. I have immersed myself in this culture. I know there will still be bad nights mixed in with the good. But I am hoping they will stay at mostly good. I am getting out of a multi-year "funk" that quite frankly I had no idea what was happening to my body. It was horrible.
To any newbie that is as frustrated like I was. PLEASE be patient, ask questions here, try things out, tweak pressures, and NEVER give up. You will get there. CPAP will work and when it does you will feel wonderful!!!
I have SO MUCH more that I will share with you all when I get a chance. It's been a long strange trip.
But for now I want to give an emphatic thanks to all of you experts on this board who have given me suggestions. You know who you are. I owe you big time!
_________________
Machine: DreamStation Auto CPAP Machine with Heated Humidifier
Mask: DreamWear Nasal CPAP Mask with Headgear - Fit Pack (All Cushions Included with Medium Frame)
Humidifier: DreamStation Heated Humidifier
Additional Comments: OSCAR
Hello all. I am about two months into this CPAP thing. It has been a real trip to say the least. I was super frustrated at the beginning. No matter what I did, my data looked horrible. I could not sleep well. I would wake up frequently. And I was super jealous of the people that would post screenshots of their AHIs below 1. As hard as I was trying I was just hoping to get into single digits one day. Here is a typical night from about a month ago. I hope it comes out in the right place!
Fast forward to this past week or so. Through perseverance, asking a lot of questions on this board, getting more comfortable with my mask (I use the nasal cushion), and practicing better sleep hygiene, I have finally gotten to where I believe I should be. Or at least close. Here is my data from last night:
I am finally starting to gain confidence and feel that I am winning. I want to share that this is a marathon and not a sprint. I still have a tremendous amount to learn. I have immersed myself in this culture. I know there will still be bad nights mixed in with the good. But I am hoping they will stay at mostly good. I am getting out of a multi-year "funk" that quite frankly I had no idea what was happening to my body. It was horrible.
To any newbie that is as frustrated like I was. PLEASE be patient, ask questions here, try things out, tweak pressures, and NEVER give up. You will get there. CPAP will work and when it does you will feel wonderful!!!
I have SO MUCH more that I will share with you all when I get a chance. It's been a long strange trip.
But for now I want to give an emphatic thanks to all of you experts on this board who have given me suggestions. You know who you are. I owe you big time!
_________________
Machine: DreamStation Auto CPAP Machine with Heated Humidifier
Mask: DreamWear Nasal CPAP Mask with Headgear - Fit Pack (All Cushions Included with Medium Frame)
Humidifier: DreamStation Heated Humidifier
Additional Comments: OSCAR
_________________
Machine: DreamStation Auto CPAP Machine |
Mask: DreamWear Nasal CPAP Mask with Headgear - Fit Pack (All Cushions Included with Medium Frame) |
Additional Comments: OSCAR |
Re: Newbie would like to hear success stories, please.
Started 8 weeks ago. Mild apnea (9.5). First 4 weeks were very difficult and confusing. AHI was generally higher than sleep test level. AHI is now .3-1.6 pretty consistently. What Ive learned:
- after years of horrible sleep and insomnia/multiple wakings, they continued in first weeks of cpap and I was convinced in the first weeks that CPAP wouldnt work, even tho I started to feel better
- I tried all 3 Dreamwear masks (pillow, cushion and full face) and results were very variable, and AHI remained high (6-12). I started having many central apneas. It was a jumble and demotivating
- leaks were horrible ( like 40% or 25% over redline)
- I was frustrated by having to work through my doctor to get pressure changes etc. Her prescription controls my reimbursement and machine rental and masks etc.
- bottom line: it all turned around for positive when ( thanks to this site) I changed the following things:
1) I shut off EPAP/flex. The exhalation relief was confusing my brain and probably causing centrals.
2) I went to a fixed pressure ( not autopap). Looking at Oscar charts, I could see that the autopap was not responding quickly enough to block many of the apneas. I also think the pressure changes again were confusing my brain and maybe causing centrals
3) After failing with all 3 Dreamwear mask types, the DME suggested I try Resmed full face f30i and the world changed. I have no leaks with the Resmed ffm and the AHI scores dropped through the floor. Mask fit is unique for each person, but for me this was probably the single most important key.
4) I raised pressures in increments of .5 every 2 nights until the apneas essentially disappeared.
5) I eliminated frustration of the slow back and forth with sleep md by getting her concurrence to let me self-titrate, so instead of waiting for monthly appointments to make each small change. She was happy to do that with a followup call after a few weeks. She was ecstatic with the results and essentially said keep following the self-titration as needed but .3-1.6 is hard to beat. Collaborating in that way was very helpful and respected her role but gave me the freedom to move more quickly.
6) I feel great. Lots of energy, far easier workouts, etc.
Thanks to all of the contributors here who provided hints on how to get to the results I wanted.
- after years of horrible sleep and insomnia/multiple wakings, they continued in first weeks of cpap and I was convinced in the first weeks that CPAP wouldnt work, even tho I started to feel better
- I tried all 3 Dreamwear masks (pillow, cushion and full face) and results were very variable, and AHI remained high (6-12). I started having many central apneas. It was a jumble and demotivating
- leaks were horrible ( like 40% or 25% over redline)
- I was frustrated by having to work through my doctor to get pressure changes etc. Her prescription controls my reimbursement and machine rental and masks etc.
- bottom line: it all turned around for positive when ( thanks to this site) I changed the following things:
1) I shut off EPAP/flex. The exhalation relief was confusing my brain and probably causing centrals.
2) I went to a fixed pressure ( not autopap). Looking at Oscar charts, I could see that the autopap was not responding quickly enough to block many of the apneas. I also think the pressure changes again were confusing my brain and maybe causing centrals
3) After failing with all 3 Dreamwear mask types, the DME suggested I try Resmed full face f30i and the world changed. I have no leaks with the Resmed ffm and the AHI scores dropped through the floor. Mask fit is unique for each person, but for me this was probably the single most important key.
4) I raised pressures in increments of .5 every 2 nights until the apneas essentially disappeared.
5) I eliminated frustration of the slow back and forth with sleep md by getting her concurrence to let me self-titrate, so instead of waiting for monthly appointments to make each small change. She was happy to do that with a followup call after a few weeks. She was ecstatic with the results and essentially said keep following the self-titration as needed but .3-1.6 is hard to beat. Collaborating in that way was very helpful and respected her role but gave me the freedom to move more quickly.
6) I feel great. Lots of energy, far easier workouts, etc.
Thanks to all of the contributors here who provided hints on how to get to the results I wanted.
_________________
Mask: DreamWear Full Face CPAP Mask with Headgear (Small and Medium Frame Included) |
Humidifier: DreamStation Heated Humidifier |
Re: Newbie would like to hear success stories, please.
I've been on CPAP for about a year. Didn't want to go that route, and fought the diagnosis, because, other than bad snoring, I had none of the other symptoms. I slept great at night, and didn't feel fatigued during the day. But my sleep study AHI was 45-ish, I think.
I looked first at using an oral appliance. But when I asked a friend whose wife was an orthodontist how this thing would affect my teeth, he surprised me by telling his own life-changing CPAP story. He loved it, and I didn't even know he used it. In fact, that was another thing for me. Many people, including several younger and in better shape, used and loved CPAP.
I went to look up my first Resmed sleep score and can't - the data only covers back to 12/2019. But I think it was 80, including a zero because of bad mask leakage, and I hadn't known how long I was supposed to leave on the mask, so removed it early.
But basically since then, I get 100 every day.
My AHI number dropped for the first couple months, probably a combination of my body responding, and my own usage practices improving. First night was something like 3.5. It may have been more than 4 on one occasion. Never more than 5. Basically it's always 0.5-1.5, tipped more toward the lower end. Never a zero, but 0.1 once or twice, and 0.2-0.3 probably 10 times.
My air leak had dropped to 0 half or more of the times after three months. Irritatingly, it shot way up the first time I replaced my nasal pillows, and I've never had zero leak since, six months and counting. It's usually in the 2-10 l/min range. The few times after the first month that my Resmed sleep score has been <100, it's almost always been because of the leak number.
The "net" of everything above is that (1) though I slept well before, I clearly sleep better now, and (2) even on the first day after CPAP, my blood pressure, which I check twice a week, had dropped. Pre-CPAP, it would be around 140/88, and it's "Normalized" now to be in the 118-135 range systolic, and low 80s diastolic.
I usually take my mask off first time I awake after the required seven hours. The quality of breathing feels magic at that point, breathing easily without the mask, after a night with it.
Even on Night One, my wife was shocked by the absence of snoring. It was her complaints that pushed me to considering CPAP. I've snored zero with CPAP, and though I'll often fall asleep after removing the mask, my snoring is always less, and sometimes nonexisitent. Happy wife, happy life as they say.
The mask has somewhat hampered my movement in bed - I can press as close to my wife, or drive my face into the pillow. But this is manageable. My headboard has a "dip" right next to the bedpost, and looping the mask hose behind the headboard, then over the notch, helps a lot. And the hose is long enough that I never pull or move the actual CPAP unit with my movement. I can manage the few times the hose wraps or tangles me. The hose has never been an issue at all for my wife.
Final note: This board is great, and bless all the volunteers who answer the same questions all the time. I'm more of a "taker" here, asking questions, and never contributing. I'm "celebrating" my one-year anniversary by "giving" a bit and responding to a couple posts this week. That said, any newbie poster does notice that some of the chief responders are more "hardcore sticklers" than suits everyone's taste. I have been lucky. I responded well to my CPAP - results, and overall experience - and I'm not being a perfectionist about the numbers and what they mean. If that kind of stuff is important to you, great; you'll get the guidance and help you need here. But otherwise, don't let yourself feel bullied by those who will preach that your AHI is unacceptably high, or that you need to have the data off the machine's SD card to have any kind of true insight into things. There are enough other things in my world and others' worlds that matter more to them, and as long as in the big picture you're feeling well from CPAP, remind yourself that it's okay to not let someone else's perfect be an enemy of your good.
I looked first at using an oral appliance. But when I asked a friend whose wife was an orthodontist how this thing would affect my teeth, he surprised me by telling his own life-changing CPAP story. He loved it, and I didn't even know he used it. In fact, that was another thing for me. Many people, including several younger and in better shape, used and loved CPAP.
I went to look up my first Resmed sleep score and can't - the data only covers back to 12/2019. But I think it was 80, including a zero because of bad mask leakage, and I hadn't known how long I was supposed to leave on the mask, so removed it early.
But basically since then, I get 100 every day.
My AHI number dropped for the first couple months, probably a combination of my body responding, and my own usage practices improving. First night was something like 3.5. It may have been more than 4 on one occasion. Never more than 5. Basically it's always 0.5-1.5, tipped more toward the lower end. Never a zero, but 0.1 once or twice, and 0.2-0.3 probably 10 times.
My air leak had dropped to 0 half or more of the times after three months. Irritatingly, it shot way up the first time I replaced my nasal pillows, and I've never had zero leak since, six months and counting. It's usually in the 2-10 l/min range. The few times after the first month that my Resmed sleep score has been <100, it's almost always been because of the leak number.
The "net" of everything above is that (1) though I slept well before, I clearly sleep better now, and (2) even on the first day after CPAP, my blood pressure, which I check twice a week, had dropped. Pre-CPAP, it would be around 140/88, and it's "Normalized" now to be in the 118-135 range systolic, and low 80s diastolic.
I usually take my mask off first time I awake after the required seven hours. The quality of breathing feels magic at that point, breathing easily without the mask, after a night with it.
Even on Night One, my wife was shocked by the absence of snoring. It was her complaints that pushed me to considering CPAP. I've snored zero with CPAP, and though I'll often fall asleep after removing the mask, my snoring is always less, and sometimes nonexisitent. Happy wife, happy life as they say.
The mask has somewhat hampered my movement in bed - I can press as close to my wife, or drive my face into the pillow. But this is manageable. My headboard has a "dip" right next to the bedpost, and looping the mask hose behind the headboard, then over the notch, helps a lot. And the hose is long enough that I never pull or move the actual CPAP unit with my movement. I can manage the few times the hose wraps or tangles me. The hose has never been an issue at all for my wife.
Final note: This board is great, and bless all the volunteers who answer the same questions all the time. I'm more of a "taker" here, asking questions, and never contributing. I'm "celebrating" my one-year anniversary by "giving" a bit and responding to a couple posts this week. That said, any newbie poster does notice that some of the chief responders are more "hardcore sticklers" than suits everyone's taste. I have been lucky. I responded well to my CPAP - results, and overall experience - and I'm not being a perfectionist about the numbers and what they mean. If that kind of stuff is important to you, great; you'll get the guidance and help you need here. But otherwise, don't let yourself feel bullied by those who will preach that your AHI is unacceptably high, or that you need to have the data off the machine's SD card to have any kind of true insight into things. There are enough other things in my world and others' worlds that matter more to them, and as long as in the big picture you're feeling well from CPAP, remind yourself that it's okay to not let someone else's perfect be an enemy of your good.
_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier |
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear |
Re: Newbie would like to hear success stories, please.
Here is my story......
My wife has told me I snore for about 3 years. She has told me that I have shallow breathing and wake up gasping. I never noticed and being a middle aged man, I paid no attention to it. About a year ago, I started having chest pains, heart palpitations, aches all over, generally felt like crap. I made two trips to the ER in the last 12 months thinking I was having a heart attack. Each time it was negative. I have had a stress test, EKG's, chest xrays, blood work. All negative for anything. About two months ago, I really thought I was going to die! I just felt BAD!. All the symptoms above and very tired. My Doctor recommended a sleep study. I went, reluctantly, and was diagnosed with severe OSA. Up to 63 events in REM, oxygen desaturations, the whole none yards. They could not get me titrated on my split study so I had to go back for a dedicated titration study. They were able to get me down to 1.5 events per hour and I felt good the morning after.
Fast forward two weeks..... I have been on a loaner CPAP machine until I can get my own. (waiting on the prescription and insurance). In just two weeks I feel like a new man! No more chest pains, no more malaise, no more tiredness, and the heart palpitations rarely happen and when they do, they are almost not noticeable. I literally feel 15 years younger! For me, this is as close to a magic cure as I have ever seen. I noticed a difference on the first night and it only seems to get better. I powered through the first three nights with the mask, but got it figured out. My pressure is only 7.0 so nothing too rough. I know not everyone has this kind of immediate success, but I am a believer! I am just disappointed in myself for putting this off for so long. I now know that this has been a problem for years and wish I had taken care of it so I didn't have to go through this!
STAY THE COURSE!
My wife has told me I snore for about 3 years. She has told me that I have shallow breathing and wake up gasping. I never noticed and being a middle aged man, I paid no attention to it. About a year ago, I started having chest pains, heart palpitations, aches all over, generally felt like crap. I made two trips to the ER in the last 12 months thinking I was having a heart attack. Each time it was negative. I have had a stress test, EKG's, chest xrays, blood work. All negative for anything. About two months ago, I really thought I was going to die! I just felt BAD!. All the symptoms above and very tired. My Doctor recommended a sleep study. I went, reluctantly, and was diagnosed with severe OSA. Up to 63 events in REM, oxygen desaturations, the whole none yards. They could not get me titrated on my split study so I had to go back for a dedicated titration study. They were able to get me down to 1.5 events per hour and I felt good the morning after.
Fast forward two weeks..... I have been on a loaner CPAP machine until I can get my own. (waiting on the prescription and insurance). In just two weeks I feel like a new man! No more chest pains, no more malaise, no more tiredness, and the heart palpitations rarely happen and when they do, they are almost not noticeable. I literally feel 15 years younger! For me, this is as close to a magic cure as I have ever seen. I noticed a difference on the first night and it only seems to get better. I powered through the first three nights with the mask, but got it figured out. My pressure is only 7.0 so nothing too rough. I know not everyone has this kind of immediate success, but I am a believer! I am just disappointed in myself for putting this off for so long. I now know that this has been a problem for years and wish I had taken care of it so I didn't have to go through this!
STAY THE COURSE!
_________________
Machine: AirSense 10 AutoSet with Heated Humidifer + Aifit N30i Nasal Mask Bundle |
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear |
- ChicagoGranny
- Posts: 14855
- Joined: Sun Jan 29, 2012 1:43 pm
- Location: USA
Re: Newbie would like to hear success stories, please.
I have had a similar situation, and I also did not pay attention to these symptoms. Now I understand that it is very important to initially see the problem and find a solutionJSGinOK wrote: ↑Mon Nov 30, 2020 1:11 pmHere is my story......
My wife has told me I snore for about 3 years. She has told me that I have shallow breathing and wake up gasping. I never noticed and being a middle aged man, I paid no attention to it. About a year ago, I started having chest pains, heart palpitations, aches all over, generally felt like crap. I made two trips to the ER in the last 12 months thinking I was having a heart attack. Each time it was negative. I have had a stress test, EKG's, chest xrays, blood work. All negative for anything. About two months ago, I really thought I was going to die! I just felt BAD!. All the symptoms above and very tired. My Doctor recommended a sleep study. I went, reluctantly, and was diagnosed with severe OSA. Up to 63 events in REM, oxygen desaturations, the whole none yards. They could not get me titrated on my split study so I had to go back for a dedicated titration study. They were able to get me down to 1.5 events per hour and I felt good the morning after.
Fast forward two weeks..... I have been on a loaner CPAP machine until I can get my own. (waiting on the prescription and insurance). In just two weeks I feel like a new man! No more chest pains, no more malaise, no more tiredness, and the heart palpitations rarely happen and when they do, they are almost not noticeable. I literally feel 15 years younger! For me, this is as close to a magic cure as I have ever seen. I noticed a difference on the first night and it only seems to get better. I powered through the first three nights with the mask, but got it figured out. My pressure is only 7.0 so nothing too rough. I know not everyone has this kind of immediate success, but I am a believer! I am just disappointed in myself for putting this off for so long. I now know that this has been a problem for years and wish I had taken care of it so I didn't have to go through this!
STAY THE COURSE!
Re: Newbie would like to hear success stories, please.
What a ride you've been through! So happy you finally got better!Lifeisabeach wrote: ↑Wed Feb 12, 2020 12:00 amHowdy all. On again, off again lurker here. So here’s my success story. When I was first diagnosed with sleep apnea, no one told me what I was dealing with. My primary doctor had referred me for a test. The sleep center called me. The person who did the test was like “Yep, you have it.” They called me back for titration. Then the supply company called me to tell me they had my machine ready. After 3 weeks I gave up trying to deal with it and returned it, figuring I’d just look into getting surgery or something. Supply company calls me and says my doctor wants me to go back on it (they are referring to a pulmonologist who I had never even seen or talked to) and I say no, I’m just going to look into surgery. I never saw a provider (pulmonology, that is). They never called me. Never explained the results to me. I had absolutely no clue what I was dealing with. I assumed my issues with stamina and exhaustion were due to my low testosterone levels, which was abnormally low and an apparent lifelong condition.
Flash forward 3 years. I had previously had a surgery consult, but no clear reason could be seen as to why I had sleep apnea from an ENT stance. Then something else came up so I blew it off. Then I convinced myself I’d lose weight, then look into surgery again. My doctor tried testosterone injections and my health went to hell. I couldn’t stay awake if I wasn’t actively doing something and my weight spiraled out of control. I finally resigned myself to revisiting my sleep apnea and called requesting to be retested. I get a callback the next day, and it was bizarre. They basically said the P.A. wanted to see me, and wanted to know when I wanted to come. So I went the next day and was told in no uncertain terms that I shouldn’t even be alive right then. The worst case they had ever seen was an AHI of 144, mine was 140, and I had gone 3 years untreated and clearly gotten progressively worse. The testosterone injections in particular had really exacerbated the condition. I was kidding myself into thinking I could lose weight, it was impossible due to how jacked up my hormones were. And I’m just sitting there like a zombie, finally hearing all this for the first time, and it’s all I can do to eke out the words “But no one told me anything.”
The ensuing 3 months were living hell as I strived to get used to using a CPAP machine. Well first off, they made a mistake by starting with a CPAP machine because the pressure was so high to resolve it that I needed a BiPAP. But I went through 7 different masks trying to get something to work. I even shaved my beard! But everything except nasal pillows leaked due to the high pressure, so that’s what worked finally.
Over the course of the years since I got this under control, a few things have become clear. First and foremost, I have had sleep apnea since my teens at the minimum, most likely since childhood. There’s just no questioning the signs of it in retrospect. The difference and impact on my life and health cannot be understated. One of the crazier things that my sleep apnea was directly responsible for was my compromised ability to regulate my body temperature. I used to feel like I had issues with heat and cold extremes, but was never sure if it was a real problem or just me being a wuss. What was real was that I never sweated much. I could be doing yard work with it hot and humid, and very little sweat. I was also prone to heat exhaustion. That all changed about 6 years after my sleep apnea was under control. I now sweat like a normal person and don’t have the stamina issues I’d always had as a child through my early 40s. Other changes, like to my temperament, are things that everyone around me saw improve for the better. But the bottom line is I’m alive and well, and other than my weight and Testosterone deficiency, I’m absurdly healthy when by all rights I shouldn’t be.
I'm in kind of the same situation but what really took to me was the thing about your thermoregulation, which, besides fatigue and brain fog, is my biggest issue. It has gotten so bad the last four yrs that I can't even leave my ac-cooled room during the days in the summer. I get knocked out within five minutes. Really disabling. I, like you, have never had any stamina, have never been able to sweat like my friends.
I just begun my pap-journey and my god I hope I'll in six yrs be where you are now. Atm it's actually hell. Great numbers, mask fit fine but more exhausted than ever, barely getting out of bed.
All the best and I hope you still feel more rested then ever!
//Andréa
_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier |
Mask: AirFit™ N30i Nasal CPAP Mask with Headgear Starter Pack |
Additional Comments: Using the old N30i without Quiet Air. |
Re: Newbie would like to hear success stories, please.
Just a few days in, but certainly feeling like a success story.
Started with the DME I met with to get my tech.
I have a beard, so had concerns. But they had the mask I was hoping would work - the Dreamwear - and it fit - no leaks - comfortable. Best first impression possible.
My first night was awkward just because of the mental game, but over three nights I am over95% fit each night. And my AHI went from 29.4 in the sleep test to 10, 6.7, and 3.5 over my first three nights.
I’ll do the two week cycle of vinegar baths and full cleaning. But I’m just emptying the water and cleaning my cushion each morning.
It’s early for me, but this seems like success mentally and physically.
I also seem to have a bit more energy and a bit less morning headache but I haven’t been doing it long enough to trust that.
Hope that helps.
Started with the DME I met with to get my tech.
I have a beard, so had concerns. But they had the mask I was hoping would work - the Dreamwear - and it fit - no leaks - comfortable. Best first impression possible.
My first night was awkward just because of the mental game, but over three nights I am over95% fit each night. And my AHI went from 29.4 in the sleep test to 10, 6.7, and 3.5 over my first three nights.
I’ll do the two week cycle of vinegar baths and full cleaning. But I’m just emptying the water and cleaning my cushion each morning.
It’s early for me, but this seems like success mentally and physically.
I also seem to have a bit more energy and a bit less morning headache but I haven’t been doing it long enough to trust that.
Hope that helps.
_________________
Mask: DreamWear Full Face CPAP Mask with Headgear (Small and Medium Frame Included) |
Humidifier: DreamStation Heated Humidifier |
Re: Newbie would like to hear success stories, please.
I've been using Cpap now Bipap for approx 8 years. My journey in the beginning was a challenge, my first mistake was believing, overnight miracle. From what I can remember, took approx 2 years, with assistance from many wondeful members and most of all Pugsy,
Sleep study states I stopped breathing 33 times per hour, and I felt the affect. I went to sleep, woke up feeling super exhausted, rest of my day I felt like dawn of the dead. I began with nasal pillows, transitioned to many differnt masks, I tried aprox 10 different types, I had major sinus congestion, nasal pillows didn't work for me, specially taping my mouth up, felt like I was suffocating, I'd rip the tape off, next step was Resmed Hybrid, I continued to have issues, so on to full face.
I visit clinic every 2 months, data, pressure adjustment etc.... Out of all the numerous masks I tried, all of them leaked badly. I was frustrated. Then I was handed a Resmed Quattro large. I thought that mask is huge, I tried the mask, to dissatisfaction, leaked like crazy !! So, I asked to try a medium, this mask leaked as well, but hardly noticeable. I wasn't giving up, every night I played with the Quattro straps, approx a month later, no leaks !!!!!! Funny thing is, I like to sleep with left side of head on pillow, so I adjusted straps accordingly, my straps are lopsided, my mask is slightly right side of my face. No leaks....
Afterwards sleep clinic adjusted my pressure to mask upwards, every two months. I began at pressure of 7 two years later 19, my AHI was <1 and rarely went above 1,.
My mask and pressure has been the same ever since.
Approx 2 years ago, I was feeling a bit tired once again, but was still able to function. Believe the issue I was having was exhaling during constant pressure, which would arose me, not awaken me.
Another sleep study complete, I was switched to Bipap from Cpap, same max pressure 19, min 12,. I actually prefer the Bipap over Cpap, I had to adjust at first, but my breathing became rhythemic with Bipap. Natrual breathing. I'm no expert, but believe more difficult to exhale higher pressures.
So my journey in the beginning was rough, as most of us experience, oh can't believe I almost forgot, severe digestive bloating (aerophagia), it was extremely bad, each time my pressure was increased, thank goodness those days are behind me. Also dry mouth, I'd awaken guzzled half gallon of water daily, a member mentioned Biotene, which was very helpful. I've had neither for years. My body has adjusted, I no longer wake up with dry mouth, etc....
And being able to dream, Wow !! Sometimes it seems my dreams are endless. I still continue to dream, every night. Prior to Cpap treatment, I'd fall asleep, black out, wake up.
I am truly grateful to all those that were a part of my journey, my sleep clinic is outstanding, when I first began, I had no desire to sleep, with cpap treatment, I slept horrible prior to cpap, but cpap treatment appeared to be worse. I took daily naps. Many nights in the beginning, I'd sleep without cpap, cause I was waking up every 2 hours using cpap. I thought, finally got some sleep. Now, I love to use my equipment, complete comfort, knowing when I lay down, to sleep, I will do so peacefully.
Hope my success story, inspires others not not to give up, what I learned through my experience is, cpap treatment takes a lot of patience and learning. Patience, learning, dedication, motivation and effort will be rewarding.
Sleep well friends.......
Sleep study states I stopped breathing 33 times per hour, and I felt the affect. I went to sleep, woke up feeling super exhausted, rest of my day I felt like dawn of the dead. I began with nasal pillows, transitioned to many differnt masks, I tried aprox 10 different types, I had major sinus congestion, nasal pillows didn't work for me, specially taping my mouth up, felt like I was suffocating, I'd rip the tape off, next step was Resmed Hybrid, I continued to have issues, so on to full face.
I visit clinic every 2 months, data, pressure adjustment etc.... Out of all the numerous masks I tried, all of them leaked badly. I was frustrated. Then I was handed a Resmed Quattro large. I thought that mask is huge, I tried the mask, to dissatisfaction, leaked like crazy !! So, I asked to try a medium, this mask leaked as well, but hardly noticeable. I wasn't giving up, every night I played with the Quattro straps, approx a month later, no leaks !!!!!! Funny thing is, I like to sleep with left side of head on pillow, so I adjusted straps accordingly, my straps are lopsided, my mask is slightly right side of my face. No leaks....
Afterwards sleep clinic adjusted my pressure to mask upwards, every two months. I began at pressure of 7 two years later 19, my AHI was <1 and rarely went above 1,.
My mask and pressure has been the same ever since.
Approx 2 years ago, I was feeling a bit tired once again, but was still able to function. Believe the issue I was having was exhaling during constant pressure, which would arose me, not awaken me.
Another sleep study complete, I was switched to Bipap from Cpap, same max pressure 19, min 12,. I actually prefer the Bipap over Cpap, I had to adjust at first, but my breathing became rhythemic with Bipap. Natrual breathing. I'm no expert, but believe more difficult to exhale higher pressures.
So my journey in the beginning was rough, as most of us experience, oh can't believe I almost forgot, severe digestive bloating (aerophagia), it was extremely bad, each time my pressure was increased, thank goodness those days are behind me. Also dry mouth, I'd awaken guzzled half gallon of water daily, a member mentioned Biotene, which was very helpful. I've had neither for years. My body has adjusted, I no longer wake up with dry mouth, etc....
And being able to dream, Wow !! Sometimes it seems my dreams are endless. I still continue to dream, every night. Prior to Cpap treatment, I'd fall asleep, black out, wake up.
I am truly grateful to all those that were a part of my journey, my sleep clinic is outstanding, when I first began, I had no desire to sleep, with cpap treatment, I slept horrible prior to cpap, but cpap treatment appeared to be worse. I took daily naps. Many nights in the beginning, I'd sleep without cpap, cause I was waking up every 2 hours using cpap. I thought, finally got some sleep. Now, I love to use my equipment, complete comfort, knowing when I lay down, to sleep, I will do so peacefully.
Hope my success story, inspires others not not to give up, what I learned through my experience is, cpap treatment takes a lot of patience and learning. Patience, learning, dedication, motivation and effort will be rewarding.
Sleep well friends.......
_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier |
Mask: AirTouch™ F20 Full Face CPAP Mask with Headgear |
- ElusiveSleep
- Posts: 62
- Joined: Tue Apr 07, 2020 7:36 am
Re: Newbie would like to hear success stories, please.
Started PAP in February 2020. After one year, my therapy has finally been optimized. Listed below are the challenges and how they were solved.
*Tried the conventional approach using several chin straps as recommended by sleep doc, Resmed, and DME. Miserably failed and they were damn uncomfortable especially as was summertime.
*Solution: Soft cervical collar (Walgreen's) as suggested on this forum. Large leaks after this dropped like a rock.
*Made requests to sleep doc to narrow pressure, which she agreed to do
*However, started to realize APAP was not ideal, but was uncertain what to do
*He offers fee-based consulting service to review OSCAR data so decided to do
*Suggested up titration at a couple fixed pressures and gave me confidence to change machine settings (and get over my fear of the DME cops will come after you)
*Finally settled on fixed pressure of 9 cm H2O.
*He also suggested trying Coverall type over mouth in place of collar. The tape actually caused both AHI and mask leaks to increase. I think the reason the collar works better for me is that there is some nasal congestion during sleep, and partial mouth breathing balances it.
*Getting out bed at 9:00 am is no big deal since I am retired (although it irks my wife since she is a lark and I'm an owl).
- Mouth breathing leaks during the first six months defeated the therapeutic effects of the machine
*Tried the conventional approach using several chin straps as recommended by sleep doc, Resmed, and DME. Miserably failed and they were damn uncomfortable especially as was summertime.
*Solution: Soft cervical collar (Walgreen's) as suggested on this forum. Large leaks after this dropped like a rock.
- Sleep doc did nothing to narrow pressures from initial machine setting (4-14 cm H2O)
*Made requests to sleep doc to narrow pressure, which she agreed to do
*However, started to realize APAP was not ideal, but was uncertain what to do
- Wanted to try fixed pressure, but sleep doc was hesitant to recommend
*He offers fee-based consulting service to review OSCAR data so decided to do
*Suggested up titration at a couple fixed pressures and gave me confidence to change machine settings (and get over my fear of the DME cops will come after you)
*Finally settled on fixed pressure of 9 cm H2O.
*He also suggested trying Coverall type over mouth in place of collar. The tape actually caused both AHI and mask leaks to increase. I think the reason the collar works better for me is that there is some nasal congestion during sleep, and partial mouth breathing balances it.
- Awakening after ~6 hours of PAP (~5:00 am) was of initial concern
*Getting out bed at 9:00 am is no big deal since I am retired (although it irks my wife since she is a lark and I'm an owl).
- PAP therapy changed my life
_________________
Machine: AirSense 11 Autoset |
Mask: DreamWear Nasal CPAP Mask with Headgear |
Additional Comments: OSCAR User |
Re: Newbie would like to hear success stories, please.
I started using CPAP a couple of years ago. My equipment is a ResMed AirSense 10. I use the nose pillows.
I went from over a dozen apnea events per hour on average to now, between 0.2 - 0.8 events per hour typical (according to the AirSense report ).
Lifesaver for me. Thought I was going to have to retire. Couldn't get rest. Wake up more exhausted then when I went to bed. Wife couldn't sleep due to both my snoring and worrying that I wasn't going to start breathing again. Fast forward. Still working, 69, getting great sleep. Have energy. I think the CPAP is almost like a sleeping pill. I put it on and get sleepy and bam.....sleeping. It's quiet with a slight white noise effect.
Easy to use. I clean the hoses and water reservoir once a week with mild dish soap and water. I rinse the water reservoir and let it air dry every day. Same for the nose pillows.
Good luck to all new users!
I went from over a dozen apnea events per hour on average to now, between 0.2 - 0.8 events per hour typical (according to the AirSense report ).
Lifesaver for me. Thought I was going to have to retire. Couldn't get rest. Wake up more exhausted then when I went to bed. Wife couldn't sleep due to both my snoring and worrying that I wasn't going to start breathing again. Fast forward. Still working, 69, getting great sleep. Have energy. I think the CPAP is almost like a sleeping pill. I put it on and get sleepy and bam.....sleeping. It's quiet with a slight white noise effect.
Easy to use. I clean the hoses and water reservoir once a week with mild dish soap and water. I rinse the water reservoir and let it air dry every day. Same for the nose pillows.
Good luck to all new users!
Re: Newbie would like to hear success stories, please.
Newbie here, started CPAP therapy on Feb 1, 2021
Sleep study said I had 60 events per hour so basically I was stopping breathing every minute?
I’d wake up in the middle of the night choking and gasping for air, feeling like I was drowning or smothering and thought I was having some sort of acid reflux issue. My snoring was getting really bad and my poor wife was at her wits end and prodded me to get this checked out and sure enough, severe OSA.
The way I KNOW it’s working is that I’ll fall into a very deep sleep and have the most crazy and vivid dreams and before CPAP, I can’t even tell you the last time I had a dream, I must have been not falling into a deep enough sleep with the 60 apnea’s an hour.
My only regret is not doing this 5-10 years ago but better late than never I guess!
Sleep study said I had 60 events per hour so basically I was stopping breathing every minute?
I’d wake up in the middle of the night choking and gasping for air, feeling like I was drowning or smothering and thought I was having some sort of acid reflux issue. My snoring was getting really bad and my poor wife was at her wits end and prodded me to get this checked out and sure enough, severe OSA.
The way I KNOW it’s working is that I’ll fall into a very deep sleep and have the most crazy and vivid dreams and before CPAP, I can’t even tell you the last time I had a dream, I must have been not falling into a deep enough sleep with the 60 apnea’s an hour.
My only regret is not doing this 5-10 years ago but better late than never I guess!
ResMed AirSense 10 Autoset
ResMed AirFit F30 full face mask
ResMed AirFit F30 full face mask