Some general questions and call for testimonials
Some general questions and call for testimonials
Hello everyone!
I'm quite new on this forum and I have some very general questions about the success of the CPAP therapy!
So, I'm 27, was diagnosed with severe OSA a bit more that a year ago (AHI : +- 55). Since then, I'm using a CPAP.
At first I received a nose mask, then I tried several other ones. Finally I'm pretty happy with the Resmed Mirage Swift II, the nasal pillow is much much easier to cope with than the nose or fullface masks in my experience.
So I have this mask for about 8 months, and since then I've been trying to find solutions to mouth leaks. I have chin strap (from Resmed, pretty bad actually). Then I found out about Chinup Strips, which I think work pretty well (As I don't wake up with my mouth dry as I did before, I mean it was sometimes so dry that I felt like being privated from water for weeks in the desert .
I knew from the beginning that the CPAP wasn't going to be an easy thing, I heard that the compliance was the key, so I must say I am pretty compliant. I use the CPAP EVERY SINGLE night, from the moment I go to bed to the moment I get up (because previously I sometimes took it off in the middle of the night, but felt terrible the day after, like before using a CPAP).
My questions now :
1) My machine is not data capable, so I don't know, but I think I don't have much leaks (nose or mouth) anymore (if any). I felt the benefits from the CPAP in the beginning (14 months ago), but now I'm very often tired as hell during the day. At some moments I have no energy at all and I feel like I could fall, if you know what I mean. I checked my blood pressure many times with my doctor, but it's not about that and he claims it's about being tired.
2) I read and hear a lot about people that cannot cope with the CPAP and live without it. I'm very curious about that because for me it's impossible to sleep without my machine, not even for a nap. I also read alot about people falling asleep during the day, but in my case, it's impossible to fall asleep without the machine, because I 'choke' again and again and again... exhausting. Can you people have a nap without it, as it sometimes impossible to have your CPAP with you (trains, at work during lunch break, ...). I know I shouldn't be needing naps at my age, but when I have the opportunity to take one during the day with my machine, I feel much better.
3) I would like to have some testimonials about people with data capable cpaps, that are able to get AHI/AI/HI close to zero. Do you (lucky) guys feel rested during the day ? I mean like you had no OSA ?
Thanks a lot for reading me, I wish I discovered this forum a long time ago, because I wasted a lot of time asking questions to people that don't know the answers... because they don't have OSA, that makes a great difference!
Hope to hear from you!
borck (from Belgium, any 'impossible to understand' sentence is to put on this fact ) .
I'm quite new on this forum and I have some very general questions about the success of the CPAP therapy!
So, I'm 27, was diagnosed with severe OSA a bit more that a year ago (AHI : +- 55). Since then, I'm using a CPAP.
At first I received a nose mask, then I tried several other ones. Finally I'm pretty happy with the Resmed Mirage Swift II, the nasal pillow is much much easier to cope with than the nose or fullface masks in my experience.
So I have this mask for about 8 months, and since then I've been trying to find solutions to mouth leaks. I have chin strap (from Resmed, pretty bad actually). Then I found out about Chinup Strips, which I think work pretty well (As I don't wake up with my mouth dry as I did before, I mean it was sometimes so dry that I felt like being privated from water for weeks in the desert .
I knew from the beginning that the CPAP wasn't going to be an easy thing, I heard that the compliance was the key, so I must say I am pretty compliant. I use the CPAP EVERY SINGLE night, from the moment I go to bed to the moment I get up (because previously I sometimes took it off in the middle of the night, but felt terrible the day after, like before using a CPAP).
My questions now :
1) My machine is not data capable, so I don't know, but I think I don't have much leaks (nose or mouth) anymore (if any). I felt the benefits from the CPAP in the beginning (14 months ago), but now I'm very often tired as hell during the day. At some moments I have no energy at all and I feel like I could fall, if you know what I mean. I checked my blood pressure many times with my doctor, but it's not about that and he claims it's about being tired.
2) I read and hear a lot about people that cannot cope with the CPAP and live without it. I'm very curious about that because for me it's impossible to sleep without my machine, not even for a nap. I also read alot about people falling asleep during the day, but in my case, it's impossible to fall asleep without the machine, because I 'choke' again and again and again... exhausting. Can you people have a nap without it, as it sometimes impossible to have your CPAP with you (trains, at work during lunch break, ...). I know I shouldn't be needing naps at my age, but when I have the opportunity to take one during the day with my machine, I feel much better.
3) I would like to have some testimonials about people with data capable cpaps, that are able to get AHI/AI/HI close to zero. Do you (lucky) guys feel rested during the day ? I mean like you had no OSA ?
Thanks a lot for reading me, I wish I discovered this forum a long time ago, because I wasted a lot of time asking questions to people that don't know the answers... because they don't have OSA, that makes a great difference!
Hope to hear from you!
borck (from Belgium, any 'impossible to understand' sentence is to put on this fact ) .
Re: Some general questions and call for testimonials
Hi, welcome to the forum! Can I ask why, if you know you have mouth leaks, you have not tried a full face mask? There are very good ones, but it's important to get the right size and fit for you. Popular ones are the Quattro, Hybrid, Liberty and UltraMirage (which I use). Chin straps are known to not always be very effective.
Re: Some general questions and call for testimonials
Hello!Julie wrote:Hi, welcome to the forum! Can I ask why, if you know you have mouth leaks, you have not tried a full face mask? There are very good ones, but it's important to get the right size and fit for you. Popular ones are the Quattro, Hybrid, Liberty and UltraMirage (which I use). Chin straps are known to not always be very effective.
I did try the Mirage Liberty, but I simply couldn't stand it. I had to tighten it so much to avoid leaks that it would hurt a lot (leaving marks wounds for days on my face). But I only tried for a week. Do you recommend that I try that again? With this type of mask I feel much much less free than with the nasal pillow...
And with the Mirage Swift II and the chinup strips (which I find horribly expensive BUT effective) I think I don't have leaks (maybe some, but again not a data capable machine so...).
thanks
borck
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Re: Some general questions and call for testimonials
Hi borck,
For your question number 2. I was on cpap for moderate to severe OSA a few years ago and just did not tolerate it at all. I tried for a year and a half (I'm stubborn) but woke up every morning with the thing on the floor. I never did feel better, in fact for the longest time I actually felt worse after a night of fighting the mask.
So I had a uppp done and for a while felt better.
Three years later I'm back on the hose. The tiredness during the day, snoring, and afternoon naps came back. I've had my machine for seven weeks now. This time I'm tolerating it much better. I wear it all night, every night and am getting around 7.5 hours of sleep. My AHI is currently about 1.1. However, I still feel like heck all day and am still napping three or four times a week in the afternoon. I have my two month follow-up with my sleep doctor next week. I'm sticking with it because I know the damage untreated OSA has on my body but I'd really like to start feeling better.
For your question number 2. I was on cpap for moderate to severe OSA a few years ago and just did not tolerate it at all. I tried for a year and a half (I'm stubborn) but woke up every morning with the thing on the floor. I never did feel better, in fact for the longest time I actually felt worse after a night of fighting the mask.
So I had a uppp done and for a while felt better.
Three years later I'm back on the hose. The tiredness during the day, snoring, and afternoon naps came back. I've had my machine for seven weeks now. This time I'm tolerating it much better. I wear it all night, every night and am getting around 7.5 hours of sleep. My AHI is currently about 1.1. However, I still feel like heck all day and am still napping three or four times a week in the afternoon. I have my two month follow-up with my sleep doctor next week. I'm sticking with it because I know the damage untreated OSA has on my body but I'd really like to start feeling better.
As the moon hangs low in the sky, glowing eyes need a place to hide
The spell is cast in the candle flame, as the voice of sleep speaks his name
Cast the bones and incant the spell. Mispoken word eternal hell
Sleep of the Wizard - Phantom Stranger
The spell is cast in the candle flame, as the voice of sleep speaks his name
Cast the bones and incant the spell. Mispoken word eternal hell
Sleep of the Wizard - Phantom Stranger
Re: Some general questions and call for testimonials
This may be a stretch, but you didn't mention what your pressure setting is, and since you initially got relief perhaps your setting needs adjustment.borck wrote: ...
I felt the benefits from the CPAP in the beginning (14 months ago), but now I'm very often tired as hell during the day.
Re: Some general questions and call for testimonials
Borck, if you've been using the same mask for 8 months it may well be that the cushions need to be replaced. Or even a new mask needed. And the headgear may be stretched out and need adjusting or replacment.
Have you gained or lost weight? It may be that your pressure setting needs to be adjusted.
Have you gained or lost weight? It may be that your pressure setting needs to be adjusted.
_________________
Mask: Quattro™ FX Full Face CPAP Mask with Headgear |
Additional Comments: PR SystemOne BPAP Auto w/Bi-Flex & Humidifier - EncorePro 2.2 Software - Contec CMS-50D+ Oximeter - Respironics EverFlo Q Concentrator |
Women are Angels. And when someone breaks our wings, we simply continue to fly.....on a broomstick. We are flexible like that.
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Re: Some general questions and call for testimonials
Hello Slinky!Slinky wrote:Borck, if you've been using the same mask for 8 months it may well be that the cushions need to be replaced. Or even a new mask needed. And the headgear may be stretched out and need adjusting or replacment.
Have you gained or lost weight? It may be that your pressure setting needs to be adjusted.
I don't think the mask is stretched, or at least I didn't notice any problem there and I don't have leaks from the nasal pillows (I have a "perfect" seal there)...
About the weight, I lost a bit more than 10kg (sorry, European metrics...) and didn't feel any change in my apneas (I tried sleeping a bit without the cpap when I first lost all this weight, but felt crappy and experienced a lot of 'choking').
I come right back from the hospital. They lent me a S8 AutoSet Spirit II for the week-end, so I will check for any needed pressure adjustment.
Anyway, thanks for your answer.
Have a nice Weekend
borck
Last edited by borck on Mon Aug 02, 2010 10:39 am, edited 1 time in total.
Re: Some general questions and call for testimonials
Try different full face masks - just because one didn't work out (and might have if it had been fitted better) it doesn't mean others won't. Don't cheat yourself because of that.
Re: Some general questions and call for testimonials
Borck, your English is great--don't worry.
Maybe you might try taping as an alternative to the chinup stips--a roll of painter's tape is pretty inexpensive in the US--not sure about Belgium.
I am getting very effective therapy from CPAP, but I'm still tired. I chalk it up to other things, though--stress and deconditioning are primary. But with CPAP I get wonderful sleep.
I work full time, but have always napped on the weekends. I often nap without CPAP, but I am not getting much refreshment from that. This past weekend I made a point of napping WITH CPAP, and I felt a lot better for it. The problem with napping without my CPAP is embarassment. I always fall asleep during long car trips (NOT when I'm driving!) and I snore like a buzz saw. I have a very critical teenager who likes to make fun of mom, but it cuts both ways. I have to nap in my bed (not the recliner in the TV room) so she won't laugh at my machine, but in the car she makes all sorts of cutting remarks about my snoring. I'd take my machine in the car with me on long drives if I could. We're planning a day trip this weekend, and I know I'll hear from her just how uncool I am (teenagers!).
You mention "choking" if you go to sleep without CPAP. Are you having gastroesophageal reflux???? From what I've been reading, gastroesophageal reflux (GERD for short) goes hand in hand with OSA. When the airway is narrowed and your breathing diminishes, it creates a suction effect that pulls your stomach contents up into your esophagous and throat. When I nap without my CPAP I will often have reflux--I've NEVER had an episode of reflux with the CPAP on, and my GERD is pretty severe.
You may want to ask your doctor about checking you for GERD and you may need some medications to reduce the damage from the acids coming up your esophagous and airway. Unchecked GERD can have very serious consequences as it can erode the lining of the esophagus over time--you must have this checked out.
Maybe you might try taping as an alternative to the chinup stips--a roll of painter's tape is pretty inexpensive in the US--not sure about Belgium.
I am getting very effective therapy from CPAP, but I'm still tired. I chalk it up to other things, though--stress and deconditioning are primary. But with CPAP I get wonderful sleep.
I work full time, but have always napped on the weekends. I often nap without CPAP, but I am not getting much refreshment from that. This past weekend I made a point of napping WITH CPAP, and I felt a lot better for it. The problem with napping without my CPAP is embarassment. I always fall asleep during long car trips (NOT when I'm driving!) and I snore like a buzz saw. I have a very critical teenager who likes to make fun of mom, but it cuts both ways. I have to nap in my bed (not the recliner in the TV room) so she won't laugh at my machine, but in the car she makes all sorts of cutting remarks about my snoring. I'd take my machine in the car with me on long drives if I could. We're planning a day trip this weekend, and I know I'll hear from her just how uncool I am (teenagers!).
You mention "choking" if you go to sleep without CPAP. Are you having gastroesophageal reflux???? From what I've been reading, gastroesophageal reflux (GERD for short) goes hand in hand with OSA. When the airway is narrowed and your breathing diminishes, it creates a suction effect that pulls your stomach contents up into your esophagous and throat. When I nap without my CPAP I will often have reflux--I've NEVER had an episode of reflux with the CPAP on, and my GERD is pretty severe.
You may want to ask your doctor about checking you for GERD and you may need some medications to reduce the damage from the acids coming up your esophagous and airway. Unchecked GERD can have very serious consequences as it can erode the lining of the esophagus over time--you must have this checked out.
_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier |
Mask: DreamWear Nasal CPAP Mask with Headgear |
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Taming the Mirage Quattro http://tinyurl.com/2ft3lh8
Swift FX Fitting Guide http://tinyurl.com/22ur9ts
Don't Pay that Upcharge! http://tinyurl.com/2ck48rm
Re: Some general questions and call for testimonials
Borck,
You might consider a PapCap...(google that one!). It has a built in chinstrap...works great!
You might consider a PapCap...(google that one!). It has a built in chinstrap...works great!
"Knowledge is power."
Re: Some general questions and call for testimonials
borck wrote: So, I'm 27, was diagnosed with severe OSA a bit more that a year ago (AHI : +- 55).
I would like to have some testimonials about people with data capable cpaps,
+You are a young kid.
+You have a serious condition.
+You were diagnosed before serious damage was done.
+Your treatment will be longterm.
+You need data to get good treatment.
+You want good treatment.
+Your investment in a data-capable machine can last a decade or longer.
=You should make it a priority to own a data-capable machine and the patient software for analysis.
Rooster
I have a vision that we will figure out an easy way to ensure that children develop wide, deep, healthy and attractive jaws and then obstructive sleep apnea becomes an obscure bit of history.https://www.youtube.com/watch?v=0ycw4uaX ... re=related
I have a vision that we will figure out an easy way to ensure that children develop wide, deep, healthy and attractive jaws and then obstructive sleep apnea becomes an obscure bit of history.https://www.youtube.com/watch?v=0ycw4uaX ... re=related
Re: Some general questions and call for testimonials
Yup, yup, what Roster Rooster said. Fully data capable, i.e. "access to Leak, AHI, AI" included on your script will ensure that you get a fully data capable PAP.
_________________
Mask: Quattro™ FX Full Face CPAP Mask with Headgear |
Additional Comments: PR SystemOne BPAP Auto w/Bi-Flex & Humidifier - EncorePro 2.2 Software - Contec CMS-50D+ Oximeter - Respironics EverFlo Q Concentrator |
Women are Angels. And when someone breaks our wings, we simply continue to fly.....on a broomstick. We are flexible like that.
My computer says I need to upgrade my brain to be compatible with its new software.
My computer says I need to upgrade my brain to be compatible with its new software.
Re: Some general questions and call for testimonials
You might want to consider a retitration.