Help!! I am going bonkers! (or already have ) I've been on Cpap for about 2 months now. I have been using the Breeze and a straight Cpap set at 5 cm which they got from my titration study.
I have not had much trouble with the Breeze on the straight Cpap. But I have been awakening very frequently that I am actually aware of, at least every hour or every half hour. It has been getting worse. I thought it might be related to my PLMD but decided it doesn't. I spoke to my sleep tech and the DME, and was actually able to obtain an order from the doc for an auto-pap!! Amazingly enough it was delivered yesterday. They set it for 4-20 cm. I was SO looking forward to going to bed last night that I hit the sack early. Well I had the most HORRIBLE night ever!! No matter what I did the d-mn Breeze thing leaked. I tried everything I could think of and I couldn't get it to stop! Eventually I just ripped it off my head and slept (sort of) for the next 2 hours. Up until then I had not slept without the Cpap.
Incidentally enough, I was able to get a FREE Activa from the sleep tech who said she had some samples. She tried it on me, and decided that the standard was the correct size. I used it night before last, and it was terrible. (I really am not that prone to hyperbole!) It seemed absolutely huge and so much on the face! I went to the website last night and tried to do the measurements myself. The response was that my face was not suited to that mask!! I had my kid do the measurement and then it said that I needed a large! I have an average female face and nose.
Tonight I am gonna try to use the Activa again with the autopap. If the mask leaks enough does that make the auto pressure rise? Will it show up as a leak on the sotware when they download it? Does anyone else have any other suggestions?? I am at my wits end from lack of sleep. I have been having no trouble at all falling alseep. It's just staying asleep that's the problem. Please someone help!!
Frequent awakening (long)
Frequent awakening (long)
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Sleepless on LI
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So tired:
I am going to tell you what my doctor told me. When I had my study done, I was mild for apnea/hypops, but had 14+ PLMDs per hour. When they came back with a 10 cm. pressure for my CPAP therapy, they mentioned nothing about treating the PLMD.
After it sunk it that they were going to take care of the OSA, I called the doctor to find out why they weren't addressing the PLMD. Her reply to me was that in a lot of cases, once you get on CPAP therapy, it takes care of the PLMD. She said she prefers not to put me on any meds. right now. But give the therapy a month or so with me being totally compliant and if I was still waking nightly, I should call her and she'll prescribe something for the PLMD because by a month's time of therapy, I should be sleeping and feeling better if the therapy also cured my PLMD.
Lucky for me, I started sleeping much better and feel wonderful. I don't rarely ever sleep through the night, but I'm not up as often as you say you are and I feel full of energy. Which leads me to believe, if you've been on CPAP for two months and are still waking up so often, it sounds to me like it didn't cure your PLMD. That, in my study report, was responsible for drastically "fragmenting" my "sleep architecture," as they so eloquently phrased it.
If I were in your shoes, I would call my doctor and ask him/her to prescribe Clonopin or something that they use for PLMD and see if it makes the difference. Look, at this point, it can't hurt to find out if that's what is causing your wakefulness. And you aren't getting rest, so you won't be feeling energetic until you take care of your other condition, the PLMD, which sounds like, to me, from the outside looking in, is the reason you're still exhausted and waking up all the time.
That is my totally unprofessional opinion. Aside from that, try the Swift. I love it!
Let me know if you do get prescribed something and how it works out. Hang in there. You will get through it. Sometimes it's like a puzzle that needs some figuring out before you complete it, but determination and stick-to-it-iveness and you will succeed.
I am going to tell you what my doctor told me. When I had my study done, I was mild for apnea/hypops, but had 14+ PLMDs per hour. When they came back with a 10 cm. pressure for my CPAP therapy, they mentioned nothing about treating the PLMD.
After it sunk it that they were going to take care of the OSA, I called the doctor to find out why they weren't addressing the PLMD. Her reply to me was that in a lot of cases, once you get on CPAP therapy, it takes care of the PLMD. She said she prefers not to put me on any meds. right now. But give the therapy a month or so with me being totally compliant and if I was still waking nightly, I should call her and she'll prescribe something for the PLMD because by a month's time of therapy, I should be sleeping and feeling better if the therapy also cured my PLMD.
Lucky for me, I started sleeping much better and feel wonderful. I don't rarely ever sleep through the night, but I'm not up as often as you say you are and I feel full of energy. Which leads me to believe, if you've been on CPAP for two months and are still waking up so often, it sounds to me like it didn't cure your PLMD. That, in my study report, was responsible for drastically "fragmenting" my "sleep architecture," as they so eloquently phrased it.
If I were in your shoes, I would call my doctor and ask him/her to prescribe Clonopin or something that they use for PLMD and see if it makes the difference. Look, at this point, it can't hurt to find out if that's what is causing your wakefulness. And you aren't getting rest, so you won't be feeling energetic until you take care of your other condition, the PLMD, which sounds like, to me, from the outside looking in, is the reason you're still exhausted and waking up all the time.
That is my totally unprofessional opinion. Aside from that, try the Swift. I love it!
Let me know if you do get prescribed something and how it works out. Hang in there. You will get through it. Sometimes it's like a puzzle that needs some figuring out before you complete it, but determination and stick-to-it-iveness and you will succeed.
L o R i
Sleepless: I should've mentioned that I am already on MIrapex for the PLMD and RLS. I haven't had any RLS at all since the very first dose. It is a miracle. I have heard, like you, that many times the PLMD goes away on Cpap. One reason I got the autopap was to rule that out as a problem. If it turns out I really do need just 5 cm. then I will have to go up on the Mirapex. Thanks for trying to think of a solution!
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Sleepless on LI
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Before I get into my next suggestion, how does apap help PLMD? I would really be interested in what they told you. As far as I knew, there is no way other than another PSG or feeling great that you would know it's better (or your spouse telling you that you're still doing it or not while you're asleep). I laughed when my husband told me, after my diagnosis, "So that's where all those unexplained bruises my arms and legs came from." I guess it wasn't so funny when you thought about it. But nobody said apap would help it and they put me on cpap, until at the end of last month they bought me my own machine and I got the Remstar Auto. Hmm...Maybe Mirapex isn't working for you? But you seem to know somehow that it solved your problem. Just how do you know that?
Now, my other suggestion. I think you haven't found a mask that remotely is coming close to what you need. I was constantly up 3-4 times a night, or however many times I'd turn over (side sleeper) to adjust my Activa's leaks. Got to me that other people wrote about sleeping through a night, but never me. Then I got the Swift. Yes, EVERY mask comes with some problems, but this is the best so far that I've ever had. I had the Oracle, the Activa, the Breeze and now the Swift. I am still experimenting with the pillows/masks/machine settings, and I think in 9 weeks of therapy, have slept through the night, or most of the night, two times total. It is not something that I expect anymore. But at least I'm waking up alive and have unlimited energy and no fatigue during the day. We have to count our blessings.
I know these masks are expensive and most insurance companies allow you one every six months. But if you constantly check eBay and Yahoo auctions, you can get them for much less. I got my Swift, braind new and in a seal package and box, for $66, instead of the $115 on this site. You can find different masks to try. Or it could be a matter of just adjusting one of your masks the right way, which perhaps you haven't done yet. By the way, with the Activa, did anyone tell you the straps are supposed to be really loose?
One last thought, I don't undertand, though, why they even have you on cpap/apap if you are only on a 4 pressure. I didn't think they put people on cpap for under 5 cms, and even that was debatable. Either something is up or I have a lot to relearn.
Now, my other suggestion. I think you haven't found a mask that remotely is coming close to what you need. I was constantly up 3-4 times a night, or however many times I'd turn over (side sleeper) to adjust my Activa's leaks. Got to me that other people wrote about sleeping through a night, but never me. Then I got the Swift. Yes, EVERY mask comes with some problems, but this is the best so far that I've ever had. I had the Oracle, the Activa, the Breeze and now the Swift. I am still experimenting with the pillows/masks/machine settings, and I think in 9 weeks of therapy, have slept through the night, or most of the night, two times total. It is not something that I expect anymore. But at least I'm waking up alive and have unlimited energy and no fatigue during the day. We have to count our blessings.
I know these masks are expensive and most insurance companies allow you one every six months. But if you constantly check eBay and Yahoo auctions, you can get them for much less. I got my Swift, braind new and in a seal package and box, for $66, instead of the $115 on this site. You can find different masks to try. Or it could be a matter of just adjusting one of your masks the right way, which perhaps you haven't done yet. By the way, with the Activa, did anyone tell you the straps are supposed to be really loose?
One last thought, I don't undertand, though, why they even have you on cpap/apap if you are only on a 4 pressure. I didn't think they put people on cpap for under 5 cms, and even that was debatable. Either something is up or I have a lot to relearn.
L o R i
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rested gal
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rested gal
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So Tired,
I'm not a doctor but I really don't think setting an autopap wide open (4 - 20 cm H20 ) is a good idea in some cases. I think it's better to have a leash on the top pressure until you see data from the machine from a few nights. That's why it's better to have the software yourself (in my opinion.) The doctor and/or DME is probably not going to download or look at data until quite a few nights (maybe even a month!) has gone by.
If a "wide open" machine is doing a runaway pressure thing, I'd want to know it soon. That scenario is not likely for most people, but why take a chance if you're one of the few that a particular autopap, or any autopap, might be misreading?
You said the titration pressure found at your sleep study was 5.
If it were me given that prescribed pressure, I'd set an autopap to a range of 5 - 10, being sure ramp was OFF, and see how the data looked. I'd definitely want to use the software myself and not rely on having the doctor or DME download it later to tell me what they thought.
That's just the way I'd go about it, if I were you.
I'm not a doctor but I really don't think setting an autopap wide open (4 - 20 cm H20 ) is a good idea in some cases. I think it's better to have a leash on the top pressure until you see data from the machine from a few nights. That's why it's better to have the software yourself (in my opinion.) The doctor and/or DME is probably not going to download or look at data until quite a few nights (maybe even a month!) has gone by.
If a "wide open" machine is doing a runaway pressure thing, I'd want to know it soon. That scenario is not likely for most people, but why take a chance if you're one of the few that a particular autopap, or any autopap, might be misreading?
You said the titration pressure found at your sleep study was 5.
If it were me given that prescribed pressure, I'd set an autopap to a range of 5 - 10, being sure ramp was OFF, and see how the data looked. I'd definitely want to use the software myself and not rely on having the doctor or DME download it later to tell me what they thought.
That's just the way I'd go about it, if I were you.
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Sleepless on LI
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- Location: Long Island, New York
Lori,
Hi,and thanks for your responses! I was originally on a pressure of 5 cm. I am really a borderline case anyway but have heart and lung disease already so the doc wanted me to try the Cpap.
The autopap won't directly help the PLMD, in my view anyway, any more than the straight Cpap will. The idea here is to see if 5 is the pressure I REALLY need or if it is higher. And if I really need higher then the PLM may go away with the better treatment. Since my RLS went away so quickly with the Mirapex, I am just hoping that the PLM also are gone and that the problem is really the Cpap.
I really don't know much, as you can see , but I am learning and would just like to feel rested in the am. I did use the Activa last night and had a much better night with few leaks that I was aware of, but I STILL woke up frequently! I think the Activa is just a little harder to get used to when all I know is the Breeze with nothing actually on the face.
Hi,and thanks for your responses! I was originally on a pressure of 5 cm. I am really a borderline case anyway but have heart and lung disease already so the doc wanted me to try the Cpap.
The autopap won't directly help the PLMD, in my view anyway, any more than the straight Cpap will. The idea here is to see if 5 is the pressure I REALLY need or if it is higher. And if I really need higher then the PLM may go away with the better treatment. Since my RLS went away so quickly with the Mirapex, I am just hoping that the PLM also are gone and that the problem is really the Cpap.
I really don't know much, as you can see , but I am learning and would just like to feel rested in the am. I did use the Activa last night and had a much better night with few leaks that I was aware of, but I STILL woke up frequently! I think the Activa is just a little harder to get used to when all I know is the Breeze with nothing actually on the face.
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Sleepless on LI
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- Location: Long Island, New York
So Tired,
The Breeze and the Activa are at the far ends up the spectrum. You're used to nothing on your face and a rigid headgear from the back of your head to the front of your nose with the Breeze and the the Activa, held on by two sets of straps, covering you nose and surrounding area in a triangle, no headgear at all. Quite a contradiction. The only thing further might be the Breeze and the Oracle or a full face mask.
Hope you are keeping your straps loose on the Activa as it really does work better that way. I found the two pieces on the forehead of the Activa used to bother my skin and irritate it. I ended up padding them with mole skin. And then I used mole skin at the sides of the bottom of the nostrils and under my nose to try to take away some of the leaky areas. For some weird reason, the masks everyone else say don't leak, they leak on me.
I guess it's just a matter of finding what works best for each of us individually and using it to the best we can. Right now for me, that's the Swift.
By the way, do you have software with your apap? That is the best thing next to sliced bread (making myself sound much older than I really am with that expression, no?).
The Breeze and the Activa are at the far ends up the spectrum. You're used to nothing on your face and a rigid headgear from the back of your head to the front of your nose with the Breeze and the the Activa, held on by two sets of straps, covering you nose and surrounding area in a triangle, no headgear at all. Quite a contradiction. The only thing further might be the Breeze and the Oracle or a full face mask.
Hope you are keeping your straps loose on the Activa as it really does work better that way. I found the two pieces on the forehead of the Activa used to bother my skin and irritate it. I ended up padding them with mole skin. And then I used mole skin at the sides of the bottom of the nostrils and under my nose to try to take away some of the leaky areas. For some weird reason, the masks everyone else say don't leak, they leak on me.
I guess it's just a matter of finding what works best for each of us individually and using it to the best we can. Right now for me, that's the Swift.
By the way, do you have software with your apap? That is the best thing next to sliced bread (making myself sound much older than I really am with that expression, no?).
L o R i
Lori,
There is software on the apap but remember it's on loan from the DME. Can I download it on my computer just as is? And if so, would the info still be on there when they take it back in 2weeks to download??
I do have the bottom straps pretty loose on the Activa. I can't really figure out the top part as my head seems too small for the straps. It is bunching up in the back. That's not uncomfortable but does not seem to stay in place well, the straps in back I mean. The mask did not leak much at all last night. But I am sooo tired! I just came back from seeing the movie *must love dogs*, and I could BARELY keep my eyes open!
There is software on the apap but remember it's on loan from the DME. Can I download it on my computer just as is? And if so, would the info still be on there when they take it back in 2weeks to download??
I do have the bottom straps pretty loose on the Activa. I can't really figure out the top part as my head seems too small for the straps. It is bunching up in the back. That's not uncomfortable but does not seem to stay in place well, the straps in back I mean. The mask did not leak much at all last night. But I am sooo tired! I just came back from seeing the movie *must love dogs*, and I could BARELY keep my eyes open!
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