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Permalink Reply by Kath Hope on April 2, 2013 at 10:42

Sandy - about your son..... see if he has symptoms of sleep apnoea + get him tested, in case that's the root of his problems.  Sleep apnoea IS hereditary.

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Permalink Reply by Sandy K. King on April 7, 2013 at 3:07

Hi Kath, thanks for your reply. I haven't been here in a while since I have many things I do online. Well I am still sometimes taking the mask off in my sleep, especially when I take my seroquel for sleep. I have tried to not take the seroquel and I just can't get to sleep with out it. If I take a nap during the day then I don't take it off. I'm still worried about that compliance requirement so my insurance will continue paying for the c-pap machine. My upcoming appointment with the doctor is on April 23, 2013 where he will check the card to see if I have met that requirement. What if I haven't? Also someone had told me to try wearing it during the day to get those hours in but the requirement is 4 hours a night for 21 days out or the first 30 days and if I do practice it during the day there are times when I would have to get up to either use the bathroom or get something to drink or even talk to my fiance and wouldn't that show that it wasn't a total of 4 hours? Or that I opened my mouth? I get thirsty a lot so I always like to have ice water on hand by me. Yes I am a worry wort about this for sure, and I'm worried that if I don't meet that compliance requirement I will have to return it to them according to the paper i was required to sign and then I wouldn't have a c-pap machine at all. I know I have talked about this before but it is constantly on my mind.

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Permalink Reply by Wanda Polk on April 7, 2013 at 5:14

Sandy,

Did you contact your DME company or the respiratory therapist at the company. They are usually very helpful and that is definitely one of the places I would have started if I had your concern. I think Terry suggested that too.  I have developed a really good relationship with my RT& the customer service representative for my DME.

 

 

 

 

 
Sandy K. King said:

Hi Kath, thanks for your reply. I haven't been here in a while since I have many things I do online. Well I am still sometimes taking the mask off in my sleep, especially when I take my seroquel for sleep. I have tried to not take the seroquel and I just can't get to sleep with out it. If I take a nap during the day then I don't take it off. I'm still worried about that compliance requirement so my insurance will continue paying for the c-pap machine. My upcoming appointment with the doctor is on April 23, 2013 where he will check the card to see if I have met that requirement. What if I haven't? Also someone had told me to try wearing it during the day to get those hours in but the requirement is 4 hours a night for 21 days out or the first 30 days and if I do practice it during the day there are times when I would have to get up to either use the bathroom or get something to drink or even talk to my fiance and wouldn't that show that it wasn't a total of 4 hours? Or that I opened my mouth? I get thirsty a lot so I always like to have ice water on hand by me. Yes I am a worry wort about this for sure, and I'm worried that if I don't meet that compliance requirement I will have to return it to them according to the paper i was required to sign and then I wouldn't have a c-pap machine at all. I know I have talked about this before but it is constantly on my mind.

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Permalink Reply by Terry Vella on April 7, 2013 at 7:48

Sandy, to get value out of it you need to try to now start to keep it on for more than 4 hours at night, it's not just a compliance thing, it won't work if you don't use it correctly. If you go to the bathroom or have a drink or talk to your fiance that's fine as long as you put it back on. I don't think the agreement would be 4 consectutive hours but 4 hours in total. You need to wear it all night to get the best treatment. You were going to ring the DME and ask about the settings etc, have you done that?
 
Sandy K. King said:

Hi Kath, thanks for your reply. I haven't been here in a while since I have many things I do online. Well I am still sometimes taking the mask off in my sleep, especially when I take my seroquel for sleep. I have tried to not take the seroquel and I just can't get to sleep with out it. If I take a nap during the day then I don't take it off. I'm still worried about that compliance requirement so my insurance will continue paying for the c-pap machine. My upcoming appointment with the doctor is on April 23, 2013 where he will check the card to see if I have met that requirement. What if I haven't? Also someone had told me to try wearing it during the day to get those hours in but the requirement is 4 hours a night for 21 days out or the first 30 days and if I do practice it during the day there are times when I would have to get up to either use the bathroom or get something to drink or even talk to my fiance and wouldn't that show that it wasn't a total of 4 hours? Or that I opened my mouth? I get thirsty a lot so I always like to have ice water on hand by me. Yes I am a worry wort about this for sure, and I'm worried that if I don't meet that compliance requirement I will have to return it to them according to the paper i was required to sign and then I wouldn't have a c-pap machine at all. I know I have talked about this before but it is constantly on my mind.

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Permalink Reply by Sandy K. King on April 8, 2013 at 2:38

Hi Mary, tomorrow I am going to the sleep clinic for sure with my mask and maybe the c-pap machine to ask more questions and what I can get to help me keep the mask on. I'm not sure what an ASV is? I was told by Kath and Wanda to talk to my DME too and I'm not even sure what that is. Boy am i getting confused. I feel like it is not my fault that i take the mask off in my sleep and do not remember at all doing it and I feel people here don't think I am serious about using it for more than the required 4 hours a night to meet the compliance so my insurance will keep paying to rent it. I don't even know how long I have it on at night. If I had the money for a survelliance camera I would put one in the bedroom just so I would know. I know part of my not keeping it on must be because I might be uncomfortable in my sleep. When I put it on it doesn't seem all that bad and being on seroquel knocks me out 2 hours after taking it and I know some would suggest i not take it at all and then I know I would not sleep so I would just have to lay there and not sleep and then I would meet the compliance requirement and therefor get no sleep. I know I am ranting on this but I am just getting so upset. I had heard of people taping the mask to their face and I have heard that it is not good to do that but maybe thats what Im going to have to do. I will ask the sleep center tomorrow what an ASV is. Thanks for writing.

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Permalink Reply by Sandy K. King on April 8, 2013 at 2:51

Hi, I was wondering about the hose lift and the thing that insulates the mask tube. I am from the U.S. so I don't know the equivalent of UK currency to US dollars. I also don't have a head board. Also there are times I forget to put the distilled water in the container for humidification and I wake up with a sore throat and sometimes blow my nose and blood comes out. Not much but I think that may be why. I don't believe I have a cold either.

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Permalink Reply by Wanda Polk on April 8, 2013 at 3:38

Sandy,

 

DME stands for durable medical equipment. A DME usually supplies the CPAP machine.  I purchased my hose lift from CPAP.COM, which is in the USA.  I hope this helps.
 
Sandy K. King said:

Hi, I was wondering about the hose lift and the thing that insulates the mask tube. I am from the U.S. so I don't know the equivalent of UK currency to US dollars. I also don't have a head board. Also there are times I forget to put the distilled water in the container for humidification and I wake up with a sore throat and sometimes blow my nose and blood comes out. Not much but I think that may be why. I don't believe I have a cold either.

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Permalink Reply by Wanda Polk on April 8, 2013 at 3:48

the clinic will be able to do the same thing that my dme does for me.  You will need your machine and mask.  Good luck, I am sure you will feel better after the clinic.
 
Sandy K. King said:

Hi Mary, tomorrow I am going to the sleep clinic for sure with my mask and maybe the c-pap machine to ask more questions and what I can get to help me keep the mask on. I'm not sure what an ASV is? I was told by Kath and Wanda to talk to my DME too and I'm not even sure what that is. Boy am i getting confused. I feel like it is not my fault that i take the mask off in my sleep and do not remember at all doing it and I feel people here don't think I am serious about using it for more than the required 4 hours a night to meet the compliance so my insurance will keep paying to rent it. I don't even know how long I have it on at night. If I had the money for a survelliance camera I would put one in the bedroom just so I would know. I know part of my not keeping it on must be because I might be uncomfortable in my sleep. When I put it on it doesn't seem all that bad and being on seroquel knocks me out 2 hours after taking it and I know some would suggest i not take it at all and then I know I would not sleep so I would just have to lay there and not sleep and then I would meet the compliance requirement and therefor get no sleep. I know I am ranting on this but I am just getting so upset. I had heard of people taping the mask to their face and I have heard that it is not good to do that but maybe thats what Im going to have to do. I will ask the sleep center tomorrow what an ASV is. Thanks for writing.

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Permalink Reply by Sandy K. King on April 11, 2013 at 21:31

Hi, Monday I went to the sleep clinic with my c-pap machine and hose and mask and told the lady the problems I was having constantly taking the mask off. She told me that probably the pressure wasn't high enough so she took the download card out and also looked at the status of my c-pap therapy and said I was still having sleep apnea events and that was a sure sign that the pressure was not high enough and she looked at my AHI and said the number was 3.7 and also that i was using the machine about 5.8 hours per night and that was good to hear since I was worried about the compliance thing. So she told me she was going to set the c-pap on auto and that it would go through some type of titration thing and told me that that meant it would do different pressures on me and that I would be more tired during the day. Well that night something awful happened and at first I thought I was dreaming that I was suffocating and couldn't breathe and was trying to get some lady in my dream to help me and was trying to tell her "help! I can't breathe!" and then my boyfriend woke me up and asked me if I was ok and at that moment I was gasping for breath while trying to say no, I can't breathe. I got my breath back and then went back to sleep without the c-pap because it scared me so bad. The next day I called the sleep clinic and they told me the pressure probably went too low and to come in Wednesday morning during walk in clinic and NOT use it Tuesday night. So I went in Wednesday morning and the guy there was very very busy starting a sleep study for someone and finally he said he would set it to the number I am used to but set it so it could go up a little higher if I needed it higher and also set it so it couldn't go below 12 which I was used to.  So last night I was up late cuz our rat had babies and then I fell asleep in my recliner and woke up this morning in my chair when I was reading so I didnt even make it to the bedroom. Has this ever happened to anyone here where you felt like you were being suffocated?

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Permalink Reply by Roz B on April 11, 2013 at 22:01

Hi Sandy, sorry you may not know me I haven't been online for a long while.

Do you have a 'ramp' button on your machine? When i first got my machine which is on Auto, i was experiencing what you are and didn't understand what the Ramp was for… its was when the pressure was going up too high for me to take, and by pressing the ramp it reset it. Its been over a year now since  I first started using CPAP therapy and  Kath will tell you, without her help and that of my sleep consultant  (I don't have a local clinic) I wouldn't have been able to persevere . it took a long while before i could find a mask that was comfortable. i now use a Philips True Blue Mask and its so much for suitable for me. We are all different and cope in different ways, but on this site  can only say that everyone was just so supportive, i couldn't have managed it without them here.. I'm so pleased Kath 'found' me and 'saved' me :)

I hope you manage to get something sorted as now it just so routine to put my mask on before going to sleep. Its not th emost romantic thing in the world and i have to admit my husband actually admitted to missing my snoring initially as it was so quiet…well apart from the dog's snoring lol But he was relieved that whilst i sleep I'm now safe an due can rest now rather than worry about me all the time.

Sadly I haven't found any relief from daytime tiredness, but it seems that a lot of that may be due to pain.. i have other problems, but I at least know that the CPAP is helping me .

I'm seeing my sleep consultant next week as he is all an ENT Consultant surges… i have the pleasure of him having to put a camera in my nose to check the lining as i have lost my sense of smell in the past year. something thats only happened to me since using CPAP. I'm hoping he will find a solution for me. xx

Sandy K. King said:

Hi, Monday I went to the sleep clinic with my c-pap machine and hose and mask and told the lady the problems I was having constantly taking the mask off. She told me that probably the pressure wasn't high enough so she took the download card out and also looked at the status of my c-pap therapy and said I was still having sleep apnea events and that was a sure sign that the pressure was not high enough and she looked at my AHI and said the number was 3.7 and also that i was using the machine about 5.8 hours per night and that was good to hear since I was worried about the compliance thing. So she told me she was going to set the c-pap on auto and that it would go through some type of titration thing and told me that that meant it would do different pressures on me and that I would be more tired during the day. Well that night something awful happened and at first I thought I was dreaming that I was suffocating and couldn't breathe and was trying to get some lady in my dream to help me and was trying to tell her "help! I can't breathe!" and then my boyfriend woke me up and asked me if I was ok and at that moment I was gasping for breath while trying to say no, I can't breathe. I got my breath back and then went back to sleep without the c-pap because it scared me so bad. The next day I called the sleep clinic and they told me the pressure probably went too low and to come in Wednesday morning during walk in clinic and NOT use it Tuesday night. So I went in Wednesday morning and the guy there was very very busy starting a sleep study for someone and finally he said he would set it to the number I am used to but set it so it could go up a little higher if I needed it higher and also set it so it couldn't go below 12 which I was used to.  So last night I was up late cuz our rat had babies and then I fell asleep in my recliner and woke up this morning in my chair when I was reading so I didnt even make it to the bedroom. Has this ever happened to anyone here where you felt like you were being suffocated?

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Permalink Reply by Terry Vella on April 12, 2013 at 6:30

Sandy, I think the suffercating feeling maybe coming from  what is called EPR or the Pressure Relief on Exhale, there is a setting on your machine but I'm reluctant to change it, can you ring the DME and ask them what it is set at and how you can change it? I have looked up the manual fpr your machine and it looks like the C-Flex Setting which has off, 1, 2, 3.

It is difficult for me because I use a different brand of machine, it basically gives you more comfort when you exhale, mine was turned off and I felt like I was suffercating, each night I changed the setting up one and finally I prefer mine on 3. You really need to get them to assist you, it's really hard trying to assist via the internet, if you don't get anywhere can you speak to your sleep specialist between the to of them they have to get you set up properly or you will never use it. Let me know how you go, Terry

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Permalink Reply by Sandy K. King on April 12, 2013 at 6:51

Hi Roz, yes I have a ramp button and I use it. I took a nap today and had no problem, of course when I sleep for my night time sleep (which is really during the day) I take 50 mg of seroquel and that was when I took the mask off most often, not during naps. When i went to the Sleep Center Monday the lady told me it wouldn't be due to the sleep med and that probably the pressure wasn't high enough. We will see tonight when I sleep with the med. Oh i have that test before where they stick a tube down your nose and down your throat because of acid reflux. They found out there was damage to my vocal chords and they didn't vibrate right, and I love to sing but not as much since i have damaged vocal cords. You know what really annoys me is when I got the c-pap for the first time on March 18, 2013 the lady said..." All you need to know is how to turn it on and the ramp button" That is not true I am finding out. I also had my mask put together upside down after I cleaned it, so now it's right and I had it too tight and was scrunching up my nose and face cause i thought looser would make it not fit right. I'm sorry you have pain, my boyfriend has chronic pain as well and I have it ocasionally with osteoarthritis in multiple joints which I take glucosamine chrondroiten for and an antiamflammatory also. It helps so much. I hope you can get some help for the pain and some good sleep. Thanks for writing Sandy K.

Roz B said:

Hi Sandy, sorry you may not know me I haven't been online for a long while.

Do you have a 'ramp' button on your machine? When i first got my machine which is on Auto, i was experiencing what you are and didn't understand what the Ramp was for… its was when the pressure was going up too high for me to take, and by pressing the ramp it reset it. Its been over a year now since  I first started using CPAP therapy and  Kath will tell you, without her help and that of my sleep consultant  (I don't have a local clinic) I wouldn't have been able to persevere . it took a long while before i could find a mask that was comfortable. i now use a Philips True Blue Mask and its so much for suitable for me. We are all different and cope in different ways, but on this site  can only say that everyone was just so supportive, i couldn't have managed it without them here.. I'm so pleased Kath 'found' me and 'saved' me :)

I hope you manage to get something sorted as now it just so routine to put my mask on before going to sleep. Its not th emost romantic thing in the world and i have to admit my husband actually admitted to missing my snoring initially as it was so quiet…well apart from the dog's snoring lol But he was relieved that whilst i sleep I'm now safe an due can rest now rather than worry about me all the time.

Sadly I haven't found any relief from daytime tiredness, but it seems that a lot of that may be due to pain.. i have other problems, but I at least know that the CPAP is helping me .

I'm seeing my sleep consultant next week as he is all an ENT Consultant surges… i have the pleasure of him having to put a camera in my nose to check the lining as i have lost my sense of smell in the past year. something thats only happened to me since using CPAP. I'm hoping he will find a solution for me. xx

Sandy K. King said:

Hi, Monday I went to the sleep clinic with my c-pap machine and hose and mask and told the lady the problems I was having constantly taking the mask off. She told me that probably the pressure wasn't high enough so she took the download card out and also looked at the status of my c-pap therapy and said I was still having sleep apnea events and that was a sure sign that the pressure was not high enough and she looked at my AHI and said the number was 3.7 and also that i was using the machine about 5.8 hours per night and that was good to hear since I was worried about the compliance thing. So she told me she was going to set the c-pap on auto and that it would go through some type of titration thing and told me that that meant it would do different pressures on me and that I would be more tired during the day. Well that night something awful happened and at first I thought I was dreaming that I was suffocating and couldn't breathe and was trying to get some lady in my dream to help me and was trying to tell her "help! I can't breathe!" and then my boyfriend woke me up and asked me if I was ok and at that moment I was gasping for breath while trying to say no, I can't breathe. I got my breath back and then went back to sleep without the c-pap because it scared me so bad. The next day I called the sleep clinic and they told me the pressure probably went too low and to come in Wednesday morning during walk in clinic and NOT use it Tuesday night. So I went in Wednesday morning and the guy there was very very busy starting a sleep study for someone and finally he said he would set it to the number I am used to but set it so it could go up a little higher if I needed it higher and also set it so it couldn't go below 12 which I was used to.  So last night I was up late cuz our rat had babies and then I fell asleep in my recliner and woke up this morning in my chair when I was reading so I didnt even make it to the bedroom. Has this ever happened to anyone here where you felt like you were being suffocated?

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