Guest guest Posted May 6, 2008 Report Share Posted May 6, 2008 Jeanne, Thanks so much for your reply. I don't believe it is a matter of just getting adjusted - I truly feel as if I am being suffocated and the only relief I get is if I let air seep out of the mask under my nose. I have been put on oxygen with it - perhaps that machine is malfunctioning. All I'm sure of is that the water in the humidifier is still close to full in the morning and doesn't feel at all warm even when it is at the high setting. Let's hope I can straighten it out with the visit this afternoon. I had none of these problems before they tested me in March and the test showed MILD sleep apnea and severe oxygen deprivation when I was sleeping. After I am awake a few hours I feel o.k. - just the usual FM problems. My pain is under control. And yes, I am a side sleeper but I told them that when they brought the machine. I still am not sure why I was tested in the first place. Could be because my internist rolls her eyes every time I say " Fibromyalgia " . (Pulmonologist also) I was diagnosed by a pain specialist. Thanks again, Margaret B > Hi Margaret - I have no personal experience with these machines, > but I know I've read about different types of masks that can be > used. That's one option. Also, if you are a side sleeper, there > is a pillow that Sears sells online in its medical supplies > division for CPAP masks. Supposedly it helps keep everything in > place so you can stay comfortable. Good luck with the tech coming > to help. If I'm ever diagnosed with sleep apnea, I'm not sure I > could get used to the machine either. I hate having stuff that's > not normal attached while I'm sleeping. Take care. > Jeanne in WI > > Jan, Christi, > I'm not sure you are the one who mentioned about being on the CPAP > machine but if so, please contact me at margaretbadner@...>. > I have been on my machine for 1 1/2 weeks now and it is nothing > but trouble for me, Every time the last few nights, it is ramping > up fine and I start to fall asleep I feel as if I am being > suffocated. When I called about it I was told that I am just > probably breathing through my mouth. I know I'm not - I am still > awake! Someone is supposed to come this afternoon to check the > machine and I need to know what to talk to them about. The last 2 > days I have been in terrible shape all morning but am a lot better > by afternoon. Last night I decided to not use the CPAP machine > and I slept until 6 a.m. > and then had the same problem whenever I tried to fall back > asleep even without the machine. > > Thanks so much, Margaret B > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2008 Report Share Posted May 6, 2008 Margaret- I don't know enough about CPap to tell you if your machine is malfunctioning. It certainly sounds like it should be looked at. Feeling like you are suffocating every night is not okay. I knew a young lady who used a CPap, with oxygen, and she used nasal canula (the short little tubes that go just inside your nostrils and branch off a main tube, you see them alot in hosp.) instead of a mask. Hope you will talk all the issues over with your doc. Cassandra > > > Hi Margaret - I have no personal experience with these machines, > > but I know I've read about different types of masks that can be > > used. That's one option. Also, if you are a side sleeper, there > > is a pillow that Sears sells online in its medical supplies > > division for CPAP masks. Supposedly it helps keep everything in > > place so you can stay comfortable. Good luck with the tech coming > > to help. If I'm ever diagnosed with sleep apnea, I'm not sure I > > could get used to the machine either. I hate having stuff that's > > not normal attached while I'm sleeping. Take care. > > Jeanne in WI > > > > Jan, Christi, > > I'm not sure you are the one who mentioned about being on the CPAP > > machine but if so, please contact me at . > > I have been on my machine for 1 1/2 weeks now and it is nothing > > but trouble for me, Every time the last few nights, it is ramping > > up fine and I start to fall asleep I feel as if I am being > > suffocated. When I called about it I was told that I am just > > probably breathing through my mouth. I know I'm not - I am still > > awake! Someone is supposed to come this afternoon to check the > > machine and I need to know what to talk to them about. The last 2 > > days I have been in terrible shape all morning but am a lot better > > by afternoon. Last night I decided to not use the CPAP machine > > and I slept until 6 a.m. > > and then had the same problem whenever I tried to fall back > > asleep even without the machine. > > > > Thanks so much, Margaret B > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2008 Report Share Posted May 6, 2008 Cassandra, Well the respiratory therapist just left and he insisted that the CPAP machine was working fine, it's just that the air is more humid now so the humidifier on the CPAP is not putting out that much heated air. My daughter and I did not buy that as she ran it through all sorts of tests Saturday and was convinced it wasn't putting out humidified air. He finally decided to disconnect the CPAP and just hook up a nasal canula to the oxygen. I'm to try just that to see if it helps my breathing. He does want me to try to get back on the CPAP machine. He thought it was just my trying to exhale against the airflow but I had no trouble with that. Thanks for answering, Margaret B > Margaret- > I don't know enough about CPap to tell you if your machine is > malfunctioning. > It certainly sounds like it should be looked at. > Feeling like you are suffocating every night is not okay. > I knew a young lady who used a CPap, with oxygen, and she used > nasal canula (the short > little tubes that go just inside your nostrils and branch off a > main tube, you see them alot > in hosp.) instead of a mask. > Hope you will talk all the issues over with your doc. > > Cassandra > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2008 Report Share Posted May 6, 2008 Dear Margaret, Please let us know how the nasal canula work out (are they comfortable? do they stay put?) and also how you do on staight oxygen, without the CPap. Sweet dreams Cassandra > > > Margaret- > > I don't know enough about CPap to tell you if your machine is > > malfunctioning. > > It certainly sounds like it should be looked at. > > Feeling like you are suffocating every night is not okay. > > I knew a young lady who used a CPap, with oxygen, and she used > > nasal canula (the short > > little tubes that go just inside your nostrils and branch off a > > main tube, you see them alot > > in hosp.) instead of a mask. > > Hope you will talk all the issues over with your doc. > > > > Cassandra > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2008 Report Share Posted May 6, 2008 Cassandra, It is very small - just like the one they give you in the hospital. I never even noticed that one. I'll keep you posted. My internist called a little while ago and she is opposed to my trying the oxygen alone. In fact she has been opposed to it from the beginning - the pulmonologist wanted it. When she saw how adamant I was, she gave me the names of 2 sleep Dr's and I told her if the oxygen didn't work I'd try calling one of them. She really wants me back on the CPAP. Part of me is hoping that the oxygen doesn't work as I'm afraid the next step would be oxygen during the day also. It doesn't help that my older sister was on oxygen day and night for about 2 years before she died. Everywhere she went she had to carry a tank of oxygen. (She had leukemia) Thanks again, Margaret B > Dear Margaret, > Please let us know how the nasal canula work out (are they > comfortable? do they stay put?) > and also how you do on staight oxygen, without the CPap. > Sweet dreams > Cassandra > > >> >>> Margaret- >>> I don't know enough about CPap to tell you if your machine is >>> malfunctioning. >>> It certainly sounds like it should be looked at. >>> Feeling like you are suffocating every night is not okay. >>> I knew a young lady who used a CPap, with oxygen, and she used >>> nasal canula (the short >>> little tubes that go just inside your nostrils and branch off a >>> main tube, you see them alot >>> in hosp.) instead of a mask. >>> Hope you will talk all the issues over with your doc. >>> >>> Cassandra >>> >>> >> > > > ------------------------------------ > > 1. While it is wonderful to share our experiences with everyone on > the list as to what treatments do and don't work for us, pls always > check with your dr. Some treatments are dangerous when given along > with other meds as well as to certain health conditions or just > dangerous in general. > > 2. If you are in a difficult situation (doesn't matter what it is) > pls don't be afraid to ask for help. It is the first step to > trying to make that situation better. > > 3. To unsubscribe the e-mail is: Fibromyalgia_Support_Group- > unsubscribe > > 4. Also, it is not uncommon for more than one member to be feeling > bad at the same time when it comes to flares and b/c of that > potentially take something another member says the wrong way. And > that includes the things that one member may find funny (even if > it's laughing at fibro itself) even though we who deal with illness > whether one such as fibro or multiple illnesses try to keep a sense > of humor. > > 5. Pls let's be gentle with each other, and if you are having a bad > day pls let us know so that we can do our best to offer our support. > > Have a nice day everyone. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2008 Report Share Posted May 6, 2008 I have to use a cpap machine. I could not use the humidifier for reasons you are stating. I just don't turn on the humidifier and I do fine. > > > Margaret- > > I don't know enough about CPap to tell you if your machine is > > malfunctioning. > > It certainly sounds like it should be looked at. > > Feeling like you are suffocating every night is not okay. > > I knew a young lady who used a CPap, with oxygen, and she used > > nasal canula (the short > > little tubes that go just inside your nostrils and branch off a > > main tube, you see them alot > > in hosp.) instead of a mask. > > Hope you will talk all the issues over with your doc. > > > > Cassandra > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2008 Report Share Posted May 6, 2008 Wow! Great suggestion . It did seem as though the higher I turned the dial, the worse it got but I never made the connection. I started turning it back when there was water in my mask. My machine is a ResMed S8. Thanks loads, Margaret B > I have to use a cpap machine. I could not use the humidifier for > reasons you are stating. I just don't turn on the humidifier and I > do fine. > > > > >> >>> Margaret- >>> I don't know enough about CPap to tell you if your machine is >>> malfunctioning. >>> It certainly sounds like it should be looked at. >>> Feeling like you are suffocating every night is not okay. >>> I knew a young lady who used a CPap, with oxygen, and she used >>> nasal canula (the short >>> little tubes that go just inside your nostrils and branch off a >>> main tube, you see them alot >>> in hosp.) instead of a mask. >>> Hope you will talk all the issues over with your doc. >>> >>> Cassandra >>> >>> >> > > > > ------------------------------------ > > 1. While it is wonderful to share our experiences with everyone on > the list as to what treatments do and don't work for us, pls always > check with your dr. Some treatments are dangerous when given along > with other meds as well as to certain health conditions or just > dangerous in general. > > 2. If you are in a difficult situation (doesn't matter what it is) > pls don't be afraid to ask for help. It is the first step to > trying to make that situation better. > > 3. To unsubscribe the e-mail is: Fibromyalgia_Support_Group- > unsubscribe > > 4. Also, it is not uncommon for more than one member to be feeling > bad at the same time when it comes to flares and b/c of that > potentially take something another member says the wrong way. And > that includes the things that one member may find funny (even if > it's laughing at fibro itself) even though we who deal with illness > whether one such as fibro or multiple illnesses try to keep a sense > of humor. > > 5. Pls let's be gentle with each other, and if you are having a bad > day pls let us know so that we can do our best to offer our support. > > Have a nice day everyone. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2008 Report Share Posted May 6, 2008 I don't think your pressure is right Margaret. You shouldn't be feeling like that at all. Please let us know how your visit went hugs Margaret Badner margaretbadner@...> wrote: Jeanne, Thanks so much for your reply. I don't believe it is a matter of just getting adjusted - I truly feel as if I am being suffocated and the only relief I get is if I let air seep out of the mask under my nose. I have been put on oxygen with it - perhaps that machine is malfunctioning. All I'm sure of is that the water in the humidifier is still close to full in the morning and doesn't feel at all warm even when it is at the high setting. Let's hope I can straighten it out with the visit this afternoon. I had none of these problems before they tested me in March and the test showed MILD sleep apnea and severe oxygen deprivation when I was sleeping. After I am awake a few hours I feel o.k. - just the usual FM problems. My pain is under control. And yes, I am a side sleeper but I told them that when they brought the machine. I still am not sure why I was tested in the first place. Could be because my internist rolls her eyes every time I say " Fibromyalgia " . (Pulmonologist also) I was diagnosed by a pain specialist. Thanks again, Margaret B --------------------------------- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2008 Report Share Posted May 6, 2008 , Thanks for your reply. As to the pressure, I have no idea about that. I asked the respiratory therapist what it was and he said it was set on 4 as the Dr ordered. If the oxygen alone doesn't work out, then he will ask the Dr about raising it. I don't even know what " work out " means. All I want to do is breath again at night. Thanks again, Margaret B > I don't think your pressure is right Margaret. You shouldn't be > feeling like that at all. Please let us know how your visit went > hugs > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2008 Report Share Posted May 6, 2008 I don't have oxygen with mine - mine is cpap and I have the humidifer but I never keep it higher than 2 - I prefer it around 1.5 if I can get it there. I know a lot of people who prefer it with nothing at all. I hope you get it sorted Margaret! hugs Margaret Badner margaretbadner@...> wrote: , Thanks for your reply. As to the pressure, I have no idea about that. I asked the respiratory therapist what it was and he said it was set on 4 as the Dr ordered. If the oxygen alone doesn't work out, then he will ask the Dr about raising it. I don't even know what " work out " means. All I want to do is breath again at night. Thanks again, Margaret B > I don't think your pressure is right Margaret. You shouldn't be > feeling like that at all. Please let us know how your visit went > hugs > > > ------------------------------------ 1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general. 2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better. 3. To unsubscribe the e-mail is: Fibromyalgia_Support_Group-unsubscribe 4. Also, it is not uncommon for more than one member to be feeling bad at the same time when it comes to flares and b/c of that potentially take something another member says the wrong way. And that includes the things that one member may find funny (even if it's laughing at fibro itself) even though we who deal with illness whether one such as fibro or multiple illnesses try to keep a sense of humor. 5. Pls let's be gentle with each other, and if you are having a bad day pls let us know so that we can do our best to offer our support. Have a nice day everyone. Quote Link to comment Share on other sites More sharing options...
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