Replies to This Discussion

Permalink Reply by Michael W Gray on October 27, 2009 at 2:29pm

Think outside the box:
I HAVE BEEN FIGHTING THESE PROBLEMS SINCE 1993! Not to worry. I'm pretty sure now that I'm onto something. I've been doing my own "sleep studys" at home on my own for about 6 months. My pulmonologist/sleep doc tells me I'm going to "figure this out".
Get yourself pulse oximeter cms-50e from echostore.com like I did.
It records oxygen saturation all night so you can upload to computer next morning to see the whole night's oxygen saturations on a color chart. Cool! The university sleep lab in Salt Lake even says in one of their research papers that they've been successful at titrating OSA using pulse ox. You get the pulse oximeter from echostore.com. The model number is cms-50e, and they have color sample pictures and the free software download there to inspect right now before you buy anything. Take a look.
I have done about 6 months of nightly sleep studies now. Talk about impressing my/your sleep doc. Wow!
I'm playing around with Oxygen ( concentrator) levels, timer clocks, and timers to adjust for times in the night when oxygen is needed, and before it's over I think I 'm going to find out some new basic sleep science which I'll pass onto my sleep lab and sleep surgeons ( Dr's Riley and Powell) at Stanford which could help a lot of people someday. I have had about 16 sleep-lab sleep studies and every surgery offered, so now in frustration I'm becoming my own sleep doc so to speak (with my pulmonologist in Boulder, CO overseeing), of course.
One other thing. You have to get the right mask, period. It's out there, trust me. You may have to fight fight with your budget minded med equipment provider who probably doesn't know as much about fitting masks as he is supposed to. I finally settled on a full face mask after trying 5 different kinds before finding a really good fit. Try a full face mask; they are better. And, don't be timid about tightening it down tight against your face. When the pressure comes up it will push itself away a little so it's no longer mashing into your face nearly as much.
Mike Gray
PS Insist on/negotiate for a bipap machine, not a cpap machine. If bipap sounds to complicated to you just remember the machine can be adjusted to make it into cpap machine in a few seconds. Bipap machines are a whale of a lot cheaper on the net, maybe a third as much if you spend a little time looking.

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Permalink Reply by Michael W Gray on October 27, 2009 at 2:31pm

Michael W Gray said:

Think outside the box:
I HAVE BEEN FIGHTING THESE PROBLEMS SINCE 1993! Not to worry. I'm pretty sure now that I'm onto something. I've been doing my own "sleep studys" at home on my own for about 6 months. My pulmonologist/sleep doc tells me I'm going to "figure this out".
Get yourself pulse oximeter cms-50e from echostore.com like I did.
It records oxygen saturation all night so you can upload to computer next morning to see the whole night's oxygen saturations on a color chart. Cool! The university sleep lab in Salt Lake even says in one of their research papers that they've been successful at titrating OSA using pulse ox. You get the pulse oximeter from echostore.com. The model number is cms-50e, and they have color sample pictures and the free software download there to inspect right now before you buy anything. Take a look.
I have done about 6 months of nightly sleep studies now. Talk about impressing my/your sleep doc. Wow!
I'm playing around with Oxygen ( concentrator) levels, timer clocks, and timers to adjust for times in the night when oxygen is needed, and before it's over I think I 'm going to find out some new basic sleep science which I'll pass onto my sleep lab and sleep surgeons ( Dr's Riley and Powell) at Stanford which could help a lot of people someday. I have had about 16 sleep-lab sleep studies and every surgery offered, so now in frustration I'm becoming my own sleep doc so to speak (with my pulmonologist in Boulder, CO overseeing), of course.
One other thing. You have to get the right mask, period. It's out there, trust me. You may have to fight fight with your budget minded med equipment provider who probably doesn't know as much about fitting masks as he is supposed to. I finally settled on a full face mask after trying 5 different kinds before finding a really good fit. Try a full face mask; they are better. And, don't be timid about tightening it down tight against your face. When the pressure comes up it will push itself away a little so it's no longer mashing into your face nearly as much.
Mike Gray
PS Insist on/negotiate for a bipap machine, not a cpap machine. If bipap sounds to complicated to you just remember the machine can be adjusted to make it into cpap machine in a few seconds. Bipap machines are a whale of a lot cheaper on the net, maybe a third as much if you spend a little time looking.

• ▶ Reply

Permalink Reply by Michael W Gray on October 27, 2009 at 2:32pm

Michael W Gray said:

Michael W Gray said:

Think outside the box:
I HAVE BEEN FIGHTING THESE PROBLEMS SINCE 1993! Not to worry. I'm pretty sure now that I'm onto something. I've been doing my own "sleep studys" at home on my own for about 6 months. My pulmonologist/sleep doc tells me I'm going to "figure this out".
Get yourself pulse oximeter cms-50e from echostore.com like I did.
It records oxygen saturation all night so you can upload to computer next morning to see the whole night's oxygen saturations on a color chart. Cool! The university sleep lab in Salt Lake even says in one of their research papers that they've been successful at titrating OSA using pulse ox. You get the pulse oximeter from echostore.com. The model number is cms-50e, and they have color sample pictures and the free software download there to inspect right now before you buy anything. Take a look.
I have done about 6 months of nightly sleep studies now. Talk about impressing my/your sleep doc. Wow!
I'm playing around with Oxygen ( concentrator) levels, timer clocks, and timers to adjust for times in the night when oxygen is needed, and before it's over I think I 'm going to find out some new basic sleep science which I'll pass onto my sleep lab and sleep surgeons ( Dr's Riley and Powell) at Stanford which could help a lot of people someday. I have had about 16 sleep-lab sleep studies and every surgery offered, so now in frustration I'm becoming my own sleep doc so to speak (with my pulmonologist in Boulder, CO overseeing), of course.
One other thing. You have to get the right mask, period. It's out there, trust me. You may have to fight fight with your budget minded med equipment provider who probably doesn't know as much about fitting masks as he is supposed to. I finally settled on a full face mask after trying 5 different kinds before finding a really good fit. Try a full face mask; they are better. And, don't be timid about tightening it down tight against your face. When the pressure comes up it will push itself away a little so it's no longer mashing into your face nearly as much.
Mike Gray
PS Insist on/negotiate for a bipap machine, not a cpap machine. If bipap sounds to complicated to you just remember the machine can be adjusted to make it into cpap machine in a few seconds. Bipap machines are a whale of a lot cheaper on the net, maybe a third as much if you spend a little time looking.

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Permalink Reply by Michael W Gray on October 27, 2009 at 2:33pm

Michael W Gray said:

Michael W Gray said:

Michael W Gray said:

Think outside the box:
I HAVE BEEN FIGHTING THESE PROBLEMS SINCE 1993! Not to worry. I'm pretty sure now that I'm onto something. I've been doing my own "sleep studys" at home on my own for about 6 months. My pulmonologist/sleep doc tells me I'm going to "figure this out".
Get yourself pulse oximeter cms-50e from echostore.com like I did.
It records oxygen saturation all night so you can upload to computer next morning to see the whole night's oxygen saturations on a color chart. Cool! The university sleep lab in Salt Lake even says in one of their research papers that they've been successful at titrating OSA using pulse ox. You get the pulse oximeter from echostore.com. The model number is cms-50e, and they have color sample pictures and the free software download there to inspect right now before you buy anything. Take a look.
I have done about 6 months of nightly sleep studies now. Talk about impressing my/your sleep doc. Wow!
I'm playing around with Oxygen ( concentrator) levels, timer clocks, and timers to adjust for times in the night when oxygen is needed, and before it's over I think I 'm going to find out some new basic sleep science which I'll pass onto my sleep lab and sleep surgeons ( Dr's Riley and Powell) at Stanford which could help a lot of people someday. I have had about 16 sleep-lab sleep studies and every surgery offered, so now in frustration I'm becoming my own sleep doc so to speak (with my pulmonologist in Boulder, CO overseeing), of course.
One other thing. You have to get the right mask, period. It's out there, trust me. You may have to fight fight with your budget minded med equipment provider who probably doesn't know as much about fitting masks as he is supposed to. I finally settled on a full face mask after trying 5 different kinds before finding a really good fit. Try a full face mask; they are better. And, don't be timid about tightening it down tight against your face. When the pressure comes up it will push itself away a little so it's no longer mashing into your face nearly as much.
Mike Gray
PS Insist on/negotiate for a bipap machine, not a cpap machine. If bipap sounds to complicated to you just remember the machine can be adjusted to make it into cpap machine in a few seconds. Bipap machines are a whale of a lot cheaper on the net, maybe a third as much if you spend a little time looking.

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Permalink Reply by Michael W Gray on October 27, 2009 at 2:37pm

Sorry, my cat was stepping on my keyboard, I Think
Mike Gray

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Permalink Reply by Jan on October 27, 2009 at 2:50pm

Thanks so much for your insights. Why do you prefer a Bi-Pap?

Michael W Gray said:

Think outside the box:
I HAVE BEEN FIGHTING THESE PROBLEMS SINCE 1993! Not to worry. I'm pretty sure now that I'm onto something. I've been doing my own "sleep studys" at home on my own for about 6 months. My pulmonologist/sleep doc tells me I'm going to "figure this out".
Get yourself pulse oximeter cms-50e from echostore.com like I did.
It records oxygen saturation all night so you can upload to computer next morning to see the whole night's oxygen saturations on a color chart. Cool! The university sleep lab in Salt Lake even says in one of their research papers that they've been successful at titrating OSA using pulse ox. You get the pulse oximeter from echostore.com. The model number is cms-50e, and they have color sample pictures and the free software download there to inspect right now before you buy anything. Take a look.
I have done about 6 months of nightly sleep studies now. Talk about impressing my/your sleep doc. Wow!
I'm playing around with Oxygen ( concentrator) levels, timer clocks, and timers to adjust for times in the night when oxygen is needed, and before it's over I think I 'm going to find out some new basic sleep science which I'll pass onto my sleep lab and sleep surgeons ( Dr's Riley and Powell) at Stanford which could help a lot of people someday. I have had about 16 sleep-lab sleep studies and every surgery offered, so now in frustration I'm becoming my own sleep doc so to speak (with my pulmonologist in Boulder, CO overseeing), of course.
One other thing. You have to get the right mask, period. It's out there, trust me. You may have to fight fight with your budget minded med equipment provider who probably doesn't know as much about fitting masks as he is supposed to. I finally settled on a full face mask after trying 5 different kinds before finding a really good fit. Try a full face mask; they are better. And, don't be timid about tightening it down tight against your face. When the pressure comes up it will push itself away a little so it's no longer mashing into your face nearly as much.
Mike Gray
PS Insist on/negotiate for a bipap machine, not a cpap machine. If bipap sounds to complicated to you just remember the machine can be adjusted to make it into cpap machine in a few seconds. Bipap machines are a whale of a lot cheaper on the net, maybe a third as much if you spend a little time looking.

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Permalink Reply by Cheryl Fuqua on October 27, 2009 at 2:58pm

Jan, Hi. I have been using a cpap for a year and a half and I agree with the fact that I feel really bad when I don't use it and that is what I notice the most. Over the long haul I feel much better daily. I do not have the uncontrollable feeling that I must have naps and that is really nice. I have also had a few problems with trapped wind in my stomach as someone else mentioned and that is pretty miserable it seems to happen a couple of times a month. I tried several masks early on and still look for something more perfect than what I am using. It really seems to be a process.

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Permalink Reply by Susan M. Nelling on October 27, 2009 at 3:28pm

try taking just the hose off the mask in the middle of the night and you don't have to wake up so much stumbling back from the bathroom in the dark, waking up to put the whole mask back on . I've been on cpap 4 months and feel so much better. I love my cpap, and use it happily, its better than being afraid to fall asleep at all.

Daniel Quarberg said:

Sali, I had trouble with the same air in the stomach as you have mentioned. I found that the only time I would get the trapped air was from sleeping on my side rather than my back. Therefore, I try my damndest to stay on my back.
As for the rest of this thread, I started noticing some differences in living just three weeks after starting CPAP. It took me quite a while to get used to having the mask on my face while sleeping. I also struggled with putting it back on after nature calls. I still have that problem and I have been on the CPAP since Nov 2003. I also suffer from all kinds of other pains such as acid reflux, pulmonary sarcoidosis (struggle to get a full breath), leg and arm pain, and coughing from the sarcoidosis.
If you feel that you are not feeling better in the mornings, keep trying to make it work. In my opinion, I would rather be above the grass than below.

Sali Gray said:

Hi Jan,
I'm geting very little use from my machine, because I wake up in pain. with trapped wind in my stomach (I've spoken about it on another thread). So, on average, I probably get one or maybe one and a half hours sleep with the mask on. I don't feel any better. However, I didn't use it on Fri and Sat, and I could hardly move yesterday because I was so exhausted. It might not be that you feel better from using it.... it might be that if you didn't use it now (after using it) that you would feel a whole lot worse... if that makes sense? I've been on CPAP for about 2 months, I think! (I can't really remember)

Jan said:

Hmmmm-- that's what I was afraid of. Though, I have heard differently on here in terms of how long it took to feel better. Interested in other experiences from SG members.

Jan

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Permalink Reply by Raymond J. Young, Jr. on October 27, 2009 at 3:28pm

I would give it a least 2 months. After that you should be looking for problems like is pressure setting right, associated sleep problem (RLS/PLMS) and many others. Your sleep debt will determine a lot towards how long it takes.

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Permalink Reply by RockRpsgt on October 27, 2009 at 5:48pm

It is to early to tell Jan. Your AHI went from 70 to 3 basically overnight. It took years of bad sleep to put you into this position. it will probably take more than a week to fix it. Maybe even more than a month. Your body will stabalize. Give it time. Baby steps. Keep posting your thoughts and we will be here to walk you through it.

Jan said:

Thanks for asking Mike. I would say about the same. I do wonder if I might not have more than one sleep issue going on. The first of course is the sleep apnea which I am working on. But, I also wake up in the middle of the night and have a hard time going back to sleep...might take anywhere from 30 min to an hour and sometimes more. Am wondering if other Sleep Apnea people have that or if I need to start looking at what else might be going on--- after I settle in with the equipment, of course.

Jan

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Permalink Reply by Jan on October 27, 2009 at 9:58pm

Thanks so much to everyone for sharing your experiences. It truly helps to put it all into perspective. I'm a bit of a type A personality and all of the people (doctors included) who say that you are going to feel like a different person immediately are probably giving me a bit of performance anxiety ;-) I'm in it for the long haul ... thanks again.

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Permalink Reply by dave foster on October 27, 2009 at 10:13pm

I'm relatively new, been on the CPAP for 3 1/2 months, and things do seem better than they were. I do feel better waking up, though I have my own issues to take care of - see 'Truckers Corner' - my doctor is so fond of pointing out, you could DIE from a heart attack or stroke if you don't use the CPAP and you stop breathing. This seems so melodramatic... I wonder if they just say this to get better compliance? On the plus side, after a while, and this 'while' seems to vary from person to person, you feel better. It took about a month for me. Reading these blogs makes my issues seem a lot less serious. And it's nice to know there are other folks in the same boat [and we are all snoring!!]. Good luck to you, and please don't give up! Things really do seem to get better. If not, try my grandmas RX : Juice from 1/2 lemon, teaspoon of honey, and a nice shot of bourbon, stir, sip, repeat as needed. She lived to be 89. Had lemons, honey and bourbon on hand at all times !

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