Hello, I've been reading some of your messages, trying to self-diagnose. I just received the CPAP equipment with FFM a week ago and I find I just cannot use it. I have resorted back to using oxygen at night to get some much needed shut eye:) My problem is that I am awakened 3-4 times in what feels like I am gasping for air. It really scares me where I don't want to use the CPAP any more. I called the tech where this machine is rented and he says it sounds like I need an adjustment. I seem to do this when I go into the supine position (shame on me for moving during my sleep). Anyhow, he couldn't adjust without the doctor's O.K. and my doctor is out of town. So, I am sleeping in my recliner with oxygen because I do not like that feeling of struggling for air (life)! On my sleep study it was noted that I should avoid the "supine" position. How do I do this and get any quality of sleep when I'm worried about moving from my side to my back? Anyway, the tech told me that I'm now "stuck" with the full-face mask and CPAP for at least 6 months, even though I can't use it. I'm on Medicare. Why am I doing this and does any one else have a problem when changing sleep positions? What is the answer? Would changing me from 11 to a higher presser make a difference? So sorry but I'm not familiar, yet, with all the proper terms of this disorder and the equipment. Aso, one more question, please. Can surgery work to illeviate the need for CPAP and is it elective? I don't have excessive tissue at the back of my throat and I don't snore, so I don't know what my problem is! Sorry for bogging you down with so many questions from this newbie, but I'm totally confused and I just don't feel comfortable with the sleep study and the pulmonlogist who made the recommendations based on this study. Also, (here we go:) can GERD cause the arousals/awakenings during the night? I have severe, chronic GERD, but no one seems to be concerned about this and I thought I read where it could cause the SOB, etc. At times, I awaken to have actual stomach acid pooled at the back of my throat and, believe me, it is really gross and makes my throat sore for days after an event. Thanks so much for your help. I have/am just getting more and more doubtful and less and less trusting of our medical professional people. I don't understand why oxygen helps me at night but I'm having a problem with CPAP. Why would a sleep study not conclude that? Why wasn't well-enough left alone? I have until the end of June when the rental company will pick up my oxygen machine and then I won't know what to do when I can't use CPAP. Your input will certainly be appreciated. Thanks,
Newbie to Board & CPAP
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Guest
I would talk to the DME company that set you up. Mine had a selection of masks and switched me out a couple times in the first couple months. I never saw a bill for them either! They may be able to help.
I know I would never have stayed using my cpap if I had stuck with the Comfort Select the sleep guy gave me.
I tried a couple masks out the DME had and ended up going with a swift and it made all the difference in the world.
I know I would never have stayed using my cpap if I had stuck with the Comfort Select the sleep guy gave me.
I tried a couple masks out the DME had and ended up going with a swift and it made all the difference in the world.
Yes GERD is nasty. I can see that waking you up. I had it (mostly related to meds for inflamation so luckily mine wasn't permanent) a couple years ago and I can relate to the buring in the throat and soreness for days.
Does your doctor have you on an acid reducer? Not a neutralizer. There is a big difference. Prevacid worked wonders for me. I am sure that there are others, and you doctor should know what if any would be best for you.
I have no intelligence on the waking up gasping though, maybe someone else would. Do you have a ramp? What is it set for? Do you press it in the night. What I am wondering is if the ramp is too low. I can't breath in a mask less than 7 or so. Others can.
I would continue the upright sleeping if your GERD problems are unresolved. I assume that you know eating makes GERD worse (eating too close to bed time), even though it feels like a nice soothing ice cream or something would sooth the throat. Makes more stomach acid to get back to your throat.
As for the mask. I would push a little harder for a mask change if you think that that is the problem. Or bite the bullet and pay for a different mask on your own if you can afford it.
Does your doctor have you on an acid reducer? Not a neutralizer. There is a big difference. Prevacid worked wonders for me. I am sure that there are others, and you doctor should know what if any would be best for you.
I have no intelligence on the waking up gasping though, maybe someone else would. Do you have a ramp? What is it set for? Do you press it in the night. What I am wondering is if the ramp is too low. I can't breath in a mask less than 7 or so. Others can.
I would continue the upright sleeping if your GERD problems are unresolved. I assume that you know eating makes GERD worse (eating too close to bed time), even though it feels like a nice soothing ice cream or something would sooth the throat. Makes more stomach acid to get back to your throat.
As for the mask. I would push a little harder for a mask change if you think that that is the problem. Or bite the bullet and pay for a different mask on your own if you can afford it.
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Sinister_Girl
- Posts: 18
- Joined: Thu Jun 08, 2006 4:33 pm
- Location: Richmond, VA
- Contact:
I am also a newbie and am not qualified to give you any advice. But I can wish you luck and I hope your medical problems are taken care of very soon.Welcome to the forum craftycat99!!!!
Lisa
"Beware of people who dislike cats"
Machine: RemRest with Heated Humidifier by Evo
Mask: IQ Nasal Mask Style Coolcap in rotation with Nasal Aire II Mask
"Beware of people who dislike cats"
Machine: RemRest with Heated Humidifier by Evo
Mask: IQ Nasal Mask Style Coolcap in rotation with Nasal Aire II Mask
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birdiebaby
- Posts: 137
- Joined: Tue Apr 18, 2006 9:34 pm
I certainly hope that some of the very experienced folk weigh in for you. It might be helpful for them to know the equipment that you are using.
My reaction to your story is that it can take some folks a lot of tinkering to get everything adjusted so that the CPAP is effective for them. I'm really surprised by the comment about your study not recommending that you not sleep in the supine position. My treatment has allowed me to sleep on my back, and as a result, I am seeing a lot fewer neck and backaches. I'm not saying that your study was wrong, but I have been under the impression that the PAP treatments should be able to keep the airway open for you however you sleep.
As you and your RT suspect, it may be that your pressures may not be enough, but also, your equipment may not be suitable for you. You may be a good candidate for an auto adjusting CPAP at the very least for a trial period to see if you require different pressure levels depending on your sleeping position. Your DME (or RT) should be able to get the data from the machine to see if you need different equipment or just a different pressure setting. The downside is, of course, that Medicare won't pay extra for the upgraded equipment, but your DME may be willing to give you a trial on an auto machine if you talk to them about your issues. I always hope that DMEs want to help their patience acheive full compliance and success with their treatment
My reaction to your story is that it can take some folks a lot of tinkering to get everything adjusted so that the CPAP is effective for them. I'm really surprised by the comment about your study not recommending that you not sleep in the supine position. My treatment has allowed me to sleep on my back, and as a result, I am seeing a lot fewer neck and backaches. I'm not saying that your study was wrong, but I have been under the impression that the PAP treatments should be able to keep the airway open for you however you sleep.
As you and your RT suspect, it may be that your pressures may not be enough, but also, your equipment may not be suitable for you. You may be a good candidate for an auto adjusting CPAP at the very least for a trial period to see if you require different pressure levels depending on your sleeping position. Your DME (or RT) should be able to get the data from the machine to see if you need different equipment or just a different pressure setting. The downside is, of course, that Medicare won't pay extra for the upgraded equipment, but your DME may be willing to give you a trial on an auto machine if you talk to them about your issues. I always hope that DMEs want to help their patience acheive full compliance and success with their treatment
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littlebaddow
- Posts: 416
- Joined: Wed Dec 08, 2004 12:21 pm
- Location: Essex, England
A simple trick to stop you sleeping on your back is to somehow fix a tennis ball to your back, perhaps secured with tape or in an item of clothing. Sounds daft, but for some this is enough to stop them rolling onto their back whilst asleep.
Otherwise, persevere with your sleep clinic/doc until you get the right set up ie the one that works for you. Despite what they may say, this can take time for people, especially if there are other factors at play.
Keep asking questions here too, there's a wealth of experience and support available and it's very likely others have had the same difficulties and overcome them.
Good luck
Otherwise, persevere with your sleep clinic/doc until you get the right set up ie the one that works for you. Despite what they may say, this can take time for people, especially if there are other factors at play.
Keep asking questions here too, there's a wealth of experience and support available and it's very likely others have had the same difficulties and overcome them.
Good luck
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| Machine | Mask | |
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Kind of silly to recommend not to sleep on your back with CPAP. I find it very difficult to really sleep on my side without my mask leaking when it touches the pillow so I am very happy sleeping on my back. I used to love it that way, but tried to change for my poor husband who couldn't stand my snoring. I can't imagine the tennis ball thing, since if I do sleep on my side, I need to go to the other side during the night or I get aching hips. To go from side to side guess which way I go, over the back. Now that tennis ball would really wake me up and eliminate the benefits of CPAP. I wonder sometimes if these doctors who recommend such things have ever tried sleeping with CPAP.
Just get the pressure right and sleep where you are comfortable. Yes, if it is on your back you may need it slightly higher.
Just get the pressure right and sleep where you are comfortable. Yes, if it is on your back you may need it slightly higher.
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brasshopper
- Posts: 169
- Joined: Thu Apr 27, 2006 9:26 pm
- Contact:
While I am hesitant to suggest it....
....there is the possibility that you can adjust your own pressure.
GERD: I used to have it all the time - and my doctor put me on 300 mg of Zantac a day - you can now buy Zantac OTC. although it is not cheap - but, well, low carb dieting, while it did not cause me to lose weight, made the GERD go away. I used the Bernstein levels and low carb scheme. I stopped taking the Zantac and have not resumed - so long as my evening meal is not a high carb meal, I am no longer bothered - this may not work for you but it worked for me. I used to get all the symptoms you describe, so I understand what you were going through - If you are a diabetic with everything else I suggest this web site: Dr. Bernstein's web site before shifting your diet - especially if you are taking any meds - you need to know what this will do your medication needs and you may need to talk about it with your doctor.
You can buy an O2 separator on eBay. They cost as little as $200 with shipping. They have an industrial use so they are salable. There is a good chance that you can get one that the seller will warrant. Or just say you want one for an O2 bar - what O2 flow rate do you use?
The whole concept of Medicare not paying for O2 because they are paying for CPAP seems odd. Some people use both, y-know? We just heard of a woman who was getting such severe desats that she got both O2 and xPAP from day one.
I know that Medicare wants a periodic recording oximeter study to justify home O2 for some indications and this may be one of them. Sounds like you probably qualify.
Now, this concept of being stuck with the CPAP for six months sounds odd. See, Medicare wants the DME to interview you to determine if you are using the CPAP at between 2 and 3 months - and if you are not, they stop paying after the third month. So, if you are using an O2 generator and have stopped using the CPAP, well, I wonder if that sticks the guy who sold it to medicare in your name with a used machine?
I was gonna suggest the tennis ball as well.
Finally, you might consider the possibility that your CPAP is malfunctioning. That does not seem likely. Personally, I have an Auto-PAP and I see a huge amount of night-night variability - I was running 8-17 and I was seeing some nights where the APAP was titrating me at about 11 and some nights where it seemed to thing that I needed a pressure closer to 16.
My pressure is critical - 10 and I see a lot of things I don't see at 11 which is why I raised my low end pressure recently - and, well, sometimes CPAPs are not that accurate - ask the tech if yours was set with a manometer or if the tech trusted the built in manometer.
Many of these machines can be adjusted from the front panel - if you tell us which machine you have, it is likely that someone can tell you which buttons to avoid pressing while plugging it in so that you don't accidentally change the pressure. Or there is that guy on eBay who sells pdfs of the provider manuals for about $5.
Now, generally, people have more snoring and apnea supine than they do, say, on their side. If they titrated you on your side and never got a pressure supine or if they got a high pressure supine and decided to tell you to sleep on your side and used the side pressure, then, well, shifting to your back could cause you to have an issue.
Does your sleep study say anything about that? You might need to use an APAP if the pressures are really different and you sleep in different positions.
Just some thoughts, hope they help.
GERD: I used to have it all the time - and my doctor put me on 300 mg of Zantac a day - you can now buy Zantac OTC. although it is not cheap - but, well, low carb dieting, while it did not cause me to lose weight, made the GERD go away. I used the Bernstein levels and low carb scheme. I stopped taking the Zantac and have not resumed - so long as my evening meal is not a high carb meal, I am no longer bothered - this may not work for you but it worked for me. I used to get all the symptoms you describe, so I understand what you were going through - If you are a diabetic with everything else I suggest this web site: Dr. Bernstein's web site before shifting your diet - especially if you are taking any meds - you need to know what this will do your medication needs and you may need to talk about it with your doctor.
You can buy an O2 separator on eBay. They cost as little as $200 with shipping. They have an industrial use so they are salable. There is a good chance that you can get one that the seller will warrant. Or just say you want one for an O2 bar - what O2 flow rate do you use?
The whole concept of Medicare not paying for O2 because they are paying for CPAP seems odd. Some people use both, y-know? We just heard of a woman who was getting such severe desats that she got both O2 and xPAP from day one.
I know that Medicare wants a periodic recording oximeter study to justify home O2 for some indications and this may be one of them. Sounds like you probably qualify.
Now, this concept of being stuck with the CPAP for six months sounds odd. See, Medicare wants the DME to interview you to determine if you are using the CPAP at between 2 and 3 months - and if you are not, they stop paying after the third month. So, if you are using an O2 generator and have stopped using the CPAP, well, I wonder if that sticks the guy who sold it to medicare in your name with a used machine?
I was gonna suggest the tennis ball as well.
Finally, you might consider the possibility that your CPAP is malfunctioning. That does not seem likely. Personally, I have an Auto-PAP and I see a huge amount of night-night variability - I was running 8-17 and I was seeing some nights where the APAP was titrating me at about 11 and some nights where it seemed to thing that I needed a pressure closer to 16.
My pressure is critical - 10 and I see a lot of things I don't see at 11 which is why I raised my low end pressure recently - and, well, sometimes CPAPs are not that accurate - ask the tech if yours was set with a manometer or if the tech trusted the built in manometer.
Many of these machines can be adjusted from the front panel - if you tell us which machine you have, it is likely that someone can tell you which buttons to avoid pressing while plugging it in so that you don't accidentally change the pressure. Or there is that guy on eBay who sells pdfs of the provider manuals for about $5.
Now, generally, people have more snoring and apnea supine than they do, say, on their side. If they titrated you on your side and never got a pressure supine or if they got a high pressure supine and decided to tell you to sleep on your side and used the side pressure, then, well, shifting to your back could cause you to have an issue.
Does your sleep study say anything about that? You might need to use an APAP if the pressures are really different and you sleep in different positions.
Just some thoughts, hope they help.
9 posts
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