Replies to This Discussion

Permalink Reply by Cindy Kyte on April 19, 2009 at 11:40am

Hello everyone. I hope I'm in the right place to ask these questions. My husband FINALLY, after months of harrassment, went for a sleep study that turned into 3 sleep studies, after which he now has been diagnosed with complex central sleep apnea. He was sent home 3 days ago with a machine that, from our understanding and what I've read online, adjusts to his breathing rate, so that he will breathe at whatever has been determined to be his normal respiratory rate. He was also sent home with a few samples of Ambien CR to help him get to sleep.

My questions/concerns have to do with the fact that over this initial 3 days, I'm afraid he is becoming increasingly discouraged. Before this all started, he would fall asleep anytime he got still for a few minutes, and certainly had no trouble going to sleep when coming to bed and would be up at 5 or 6 a.m. He always has said that he bot out of bed so early because he "couldn't sleep, " but from my observation it is usually a time in his sleep stage that he is having some apnea. We had established the routine of my going to bed ahead of him, equipped with earplugs in hand, so that I could drown-out as much noise as possible with his gasping for air and snoring throughout the night. Now since being sent home after the diagnosis, etc., the first night home, he took the sleeping pill, waited a few minutes, and came to bed, ready to face the challenge of wearing this mask throughout the night. I must say that the first night, we both were very encouraged the next morning, because throughout the night I would notice that he was for the first time in a VERY long time, he was breathing deep, full, breaths, and seemed to be resting comfortably for the first time. He woke up the next morning, surprised at how soundly he had slept. He was a little groggy, he felt because of the sleeping pill, but said that he only woke up 2-3 times, being aware of the mask on his face.

However, that has not been the case now for the past 2 nights....in fact, within 2-3 hours after coming to bed (which is usually the exact time he always starts snoring and actually starts his apneic episodes), he started tossing and turning, seeming to fight the process. After about an hour, he gave up, took the mask off, and went to the couch. I have found him now for the past 2 monings on the couch, back in the same "nonbreathing" state, snoring loudly, and gasping for air again.

I don't mean to be rambling, but I guess I'm looking for an idea of how long it took you to settle into this foreign object on your face and did you feel like giving up? He says that with this machine he feels like it is forcing air in when he's trying to exhale, but from what I'm observing, it is actually when he has stopped breathing that this is happening, and I'm wondering if he is just subconsciously thinking that is what is going on? It wasn't until the doctors showed him the results of his studies that he actually finally believed that he was stopping breathing during the night (at one point as many as 37 times in 1 hour, with his oxygen saturation dropping to as low at 60% at one point), so this is obviously a serious situation and I am concerned that even though he is motivated to give this a chance to work, I'd like to be able to tell him that what he is experiencing is typical and that he should come back to bed after a few minutes and try again, rather than abandoning it completely for the night when this happens.

Any thoughts/ideas would be greatly appreciated. Thank you.

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Permalink Reply by Sugarshirl on April 19, 2009 at 6:21pm

You WILL have so many improvements in everything you listed. I was only sleeping about 2-3 hours every night and working 10 hours a day in a high powered job. Just could not figure out what was wrong with me, I thought it was all due to being so overweight, diabetic and having a heart problem. Well, my doctor had me go to a sleep clinic and it was the WORST night of my life! I only "slept" for 20 minutes, but that was enough time for them to find out that I stopped breathing 90 times per hour! After getting my CPAP mask, it is full face because I am a mouth breather, I waiting until I was tired and sleepy and went to bed. I put on the mask and relaxed, that is important, RELAX, and before I knew it, it was 7 hours later! I had not slept so long in many years and it was great. I was very fortunate in being able to adapt to the mask, but in my mind, I did not have any choice, I knew I HAD to adjust because it was the only way I was going to be able to breath during the night AND get some sleep. Go into this with a positive attitude and you will get positive results. I have not felt this good in over three years and I have a multitude of other major health problems. You need to become friends with your CPAP mask, even if it sounds silly, because it literally IS your friend. I hope this helps and please feel free to ask me anything and I will answer it to the best of my abilities. Good luck, good breathing and be well.

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Permalink Reply by Melba Cooper on April 19, 2009 at 9:23pm

Hi Elissa. I could also add to the list of wonderful positives of CPAP. I am 62 and have been on CPAP for 3 months...after years....perhaps even a lifetime of struggling with memory loss, cognitive confusion, depression, needing "power naps" to keep me going. I am astounded every day at how fresh and alive I feel. I think the best part is that I no longer feel the need to control others...one of the side effects of sleep deprivation and oxygen deprivation is out of control thoughts and anxiety. For years, I have practiced meditation to stay off of medications and improve what I viewed as "moral deficit". As my doctor said...the only medicine you have needed is AIR. She is so right. All these "psychological issues" have dissolved into oblivion. And now I can really mindfully apply more of what I have learned over these years. I thought that I had had a stroke last year because my speech was becoming more confused, stuttered, anxiety sweats at night. My hot/cold sweats are gone and I no longer wake up shaking in the middle of the early morning. My adrenal was way overworking......fear flight all night and then waves all day. I am basically a very cheerful and energetic/creative person. Just having to try to overcome this stuff all day in order to be who I wanted to be. I am amazed at how easy it is to be myself now and do all the things that I love to do. Yes, and sexual libido does return! I now have a very even keel, energetic day. I have taken only about five short naps in the last 3 months. I used to take that many a day. I have had to try several masks and now use a nose cup that is very comfortable. I do wake up several time a night to make some adjustments. And this spring have had some stuffiness to work with....usually some saline solution/gel and sitting on the side of the bed for a few minutes clears it out. I tend to take a little break from the mask from 2 - 3 am and sleep on my stomach with a little soft down pillow. Then put the mask back on for the remainder of the night. So I am using it about 7 hours. I am finally confident that when I lie down to go to sleep I can..and will not toss and turn all night with terrible sweats and fears. No more xanex, antidepressants, ambien, tylenol pm. ect. Oh, and my body feels really good. Much of the soreness and aching is gone. I do yoga when I get up and enjoy my time of meditation and thankfulness. I think my case is a little unusual in that I do not have weight issues, blood pressure, diabetes or some other common indicators...never smoked either. My doctor said that most psychologist or doctors would not identify me as a possible sleep apnea candidate. My case is probably one of a anatomical windpipe problem that is genetic. I am just learning more about this as I have time and the inclination to do more research. Hang in there......you will figure it all out with this great group of people cheering you on. Melba

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Permalink Reply by David A. Roberg on April 19, 2009 at 10:49pm

Elissa,

The CPAP will make you feel normal again. The Key is to continue using it even though you are feeling better. Trust me you will stop using the mask and all the same problems will surface. It's not a cure- but it's the best treatment we got. I have had three operations and still need the CPAP. IT'S A LIFE SAVER!

DAVID

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Permalink Reply by David A. Roberg on April 19, 2009 at 10:59pm

CINDY

He must try to keep the mask on or he will never feel better. After a week of trying the mask, and he still cant stand it. Try another type and make sure it doesn't leak and is adjusted properly.

David

Cindy Kyte said:

Hello everyone. I hope I'm in the right place to ask these questions. My husband FINALLY, after months of harrassment, went for a sleep study that turned into 3 sleep studies, after which he now has been diagnosed with complex central sleep apnea. He was sent home 3 days ago with a machine that, from our understanding and what I've read online, adjusts to his breathing rate, so that he will breathe at whatever has been determined to be his normal respiratory rate. He was also sent home with a few samples of Ambien CR to help him get to sleep.

My questions/concerns have to do with the fact that over this initial 3 days, I'm afraid he is becoming increasingly discouraged. Before this all started, he would fall asleep anytime he got still for a few minutes, and certainly had no trouble going to sleep when coming to bed and would be up at 5 or 6 a.m. He always has said that he bot out of bed so early because he "couldn't sleep, " but from my observation it is usually a time in his sleep stage that he is having some apnea. We had established the routine of my going to bed ahead of him, equipped with earplugs in hand, so that I could drown-out as much noise as possible with his gasping for air and snoring throughout the night. Now since being sent home after the diagnosis, etc., the first night home, he took the sleeping pill, waited a few minutes, and came to bed, ready to face the challenge of wearing this mask throughout the night. I must say that the first night, we both were very encouraged the next morning, because throughout the night I would notice that he was for the first time in a VERY long time, he was breathing deep, full, breaths, and seemed to be resting comfortably for the first time. He woke up the next morning, surprised at how soundly he had slept. He was a little groggy, he felt because of the sleeping pill, but said that he only woke up 2-3 times, being aware of the mask on his face.

However, that has not been the case now for the past 2 nights....in fact, within 2-3 hours after coming to bed (which is usually the exact time he always starts snoring and actually starts his apneic episodes), he started tossing and turning, seeming to fight the process. After about an hour, he gave up, took the mask off, and went to the couch. I have found him now for the past 2 monings on the couch, back in the same "nonbreathing" state, snoring loudly, and gasping for air again.

I don't mean to be rambling, but I guess I'm looking for an idea of how long it took you to settle into this foreign object on your face and did you feel like giving up? He says that with this machine he feels like it is forcing air in when he's trying to exhale, but from what I'm observing, it is actually when he has stopped breathing that this is happening, and I'm wondering if he is just subconsciously thinking that is what is going on? It wasn't until the doctors showed him the results of his studies that he actually finally believed that he was stopping breathing during the night (at one point as many as 37 times in 1 hour, with his oxygen saturation dropping to as low at 60% at one point), so this is obviously a serious situation and I am concerned that even though he is motivated to give this a chance to work, I'd like to be able to tell him that what he is experiencing is typical and that he should come back to bed after a few minutes and try again, rather than abandoning it completely for the night when this happens.

Any thoughts/ideas would be greatly appreciated. Thank you.

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Permalink Reply by Ted Crozier on April 20, 2009 at 10:59am

I always felt good, before and after CPAP. My problem was I was always tired. I'd fall asleep at my desk at work, struggle to stay awake driving, and fall asleep in a chair in front of the TV almost every night. Plus the snoring/apnea chased my wife out of the bedroom. Now rairly do I feel tired during the day. In all other ways I felt good and still feel good.

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Permalink Reply by Dominic Salvucci on April 20, 2009 at 10:10pm

I noticed a difference right away. My mask fits well, but there are nights I wake up, because I moved in my sleep and my mask needs readjusted. That being said, I am still much better with my mask than without it. Once in awhile I sleep on elevated on the recliner when my daughter is sick and can not sleep. I am a mess the next day, so I do know my mask works well for me.

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Permalink Reply by Lynne O'Luanaigh on April 20, 2009 at 11:40pm

Cindy:

I just started using a full face mask with my CPAP. The first 2 nights using at home were very encouraging, I slept 6-7 hours before waking and taking off the mask. The 3rd night I woke with a start when my husband flipped off his bed light and I suffered a panic attack trying to get the mask off of my face. I was so claustrophobic after that I couldn't sleep in my bed for 2 nights.

I posted my situation on this discussion forum and was given excellent advise. For the last couple of days I have used my CPAP during the day while watching tv to get used to the feel of the mask and the air pressure. I also practiced putting it on and taking it off quickly.

Last night I decided to wear it in bed for only 10 minutes; I went over 1 hour with it on. Tonight I will increase that time and hopefully I will fall asleep and not wake until tomorrow morning.

Basically the advise I got was to practice during the day while doing a relaxing activity like watching tv or reading a book. So far it has really helped me. It takes time and effort but I am looking forward to the results.

Maybe you can offer to sit and watch tv with your husband while he uses his CPAP.

Cindy Kyte said:

Hello everyone. I hope I'm in the right place to ask these questions. My husband FINALLY, after months of harrassment, went for a sleep study that turned into 3 sleep studies, after which he now has been diagnosed with complex central sleep apnea. He was sent home 3 days ago with a machine that, from our understanding and what I've read online, adjusts to his breathing rate, so that he will breathe at whatever has been determined to be his normal respiratory rate. He was also sent home with a few samples of Ambien CR to help him get to sleep.

My questions/concerns have to do with the fact that over this initial 3 days, I'm afraid he is becoming increasingly discouraged. Before this all started, he would fall asleep anytime he got still for a few minutes, and certainly had no trouble going to sleep when coming to bed and would be up at 5 or 6 a.m. He always has said that he bot out of bed so early because he "couldn't sleep, " but from my observation it is usually a time in his sleep stage that he is having some apnea. We had established the routine of my going to bed ahead of him, equipped with earplugs in hand, so that I could drown-out as much noise as possible with his gasping for air and snoring throughout the night. Now since being sent home after the diagnosis, etc., the first night home, he took the sleeping pill, waited a few minutes, and came to bed, ready to face the challenge of wearing this mask throughout the night. I must say that the first night, we both were very encouraged the next morning, because throughout the night I would notice that he was for the first time in a VERY long time, he was breathing deep, full, breaths, and seemed to be resting comfortably for the first time. He woke up the next morning, surprised at how soundly he had slept. He was a little groggy, he felt because of the sleeping pill, but said that he only woke up 2-3 times, being aware of the mask on his face.

However, that has not been the case now for the past 2 nights....in fact, within 2-3 hours after coming to bed (which is usually the exact time he always starts snoring and actually starts his apneic episodes), he started tossing and turning, seeming to fight the process. After about an hour, he gave up, took the mask off, and went to the couch. I have found him now for the past 2 monings on the couch, back in the same "nonbreathing" state, snoring loudly, and gasping for air again.

I don't mean to be rambling, but I guess I'm looking for an idea of how long it took you to settle into this foreign object on your face and did you feel like giving up? He says that with this machine he feels like it is forcing air in when he's trying to exhale, but from what I'm observing, it is actually when he has stopped breathing that this is happening, and I'm wondering if he is just subconsciously thinking that is what is going on? It wasn't until the doctors showed him the results of his studies that he actually finally believed that he was stopping breathing during the night (at one point as many as 37 times in 1 hour, with his oxygen saturation dropping to as low at 60% at one point), so this is obviously a serious situation and I am concerned that even though he is motivated to give this a chance to work, I'd like to be able to tell him that what he is experiencing is typical and that he should come back to bed after a few minutes and try again, rather than abandoning it completely for the night when this happens.

Any thoughts/ideas would be greatly appreciated. Thank you.

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Permalink Reply by tushygalore on April 21, 2009 at 6:09am

I can't tell you all how much I appreciate the wonderful pep talks! Now I'm even MORE excited to get geared up and start actually sleeping like a normal person should! YAY!

-Elissa-

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Permalink Reply by Cindy Kyte on April 21, 2009 at 8:26am

Lynne O'Luanaigh said:

Cindy:

I just started using a full face mask with my CPAP. The first 2 nights using at home were very encouraging, I slept 6-7 hours before waking and taking off the mask. The 3rd night I woke with a start when my husband flipped off his bed light and I suffered a panic attack trying to get the mask off of my face. I was so claustrophobic after that I couldn't sleep in my bed for 2 nights.

I posted my situation on this discussion forum and was given excellent advise. For the last couple of days I have used my CPAP during the day while watching tv to get used to the feel of the mask and the air pressure. I also practiced putting it on and taking it off quickly.

Last night I decided to wear it in bed for only 10 minutes; I went over 1 hour with it on. Tonight I will increase that time and hopefully I will fall asleep and not wake until tomorrow morning.

Basically the advise I got was to practice during the day while doing a relaxing activity like watching tv or reading a book. So far it has really helped me. It takes time and effort but I am looking forward to the results.

Maybe you can offer to sit and watch tv with your husband while he uses his CPAP.

Cindy Kyte said:

Hello everyone. I hope I'm in the right place to ask these questions. My husband FINALLY, after months of harrassment, went for a sleep study that turned into 3 sleep studies, after which he now has been diagnosed with complex central sleep apnea. He was sent home 3 days ago with a machine that, from our understanding and what I've read online, adjusts to his breathing rate, so that he will breathe at whatever has been determined to be his normal respiratory rate. He was also sent home with a few samples of Ambien CR to help him get to sleep.

My questions/concerns have to do with the fact that over this initial 3 days, I'm afraid he is becoming increasingly discouraged. Before this all started, he would fall asleep anytime he got still for a few minutes, and certainly had no trouble going to sleep when coming to bed and would be up at 5 or 6 a.m. He always has said that he bot out of bed so early because he "couldn't sleep, " but from my observation it is usually a time in his sleep stage that he is having some apnea. We had established the routine of my going to bed ahead of him, equipped with earplugs in hand, so that I could drown-out as much noise as possible with his gasping for air and snoring throughout the night. Now since being sent home after the diagnosis, etc., the first night home, he took the sleeping pill, waited a few minutes, and came to bed, ready to face the challenge of wearing this mask throughout the night. I must say that the first night, we both were very encouraged the next morning, because throughout the night I would notice that he was for the first time in a VERY long time, he was breathing deep, full, breaths, and seemed to be resting comfortably for the first time. He woke up the next morning, surprised at how soundly he had slept. He was a little groggy, he felt because of the sleeping pill, but said that he only woke up 2-3 times, being aware of the mask on his face.

However, that has not been the case now for the past 2 nights....in fact, within 2-3 hours after coming to bed (which is usually the exact time he always starts snoring and actually starts his apneic episodes), he started tossing and turning, seeming to fight the process. After about an hour, he gave up, took the mask off, and went to the couch. I have found him now for the past 2 monings on the couch, back in the same "nonbreathing" state, snoring loudly, and gasping for air again.

I don't mean to be rambling, but I guess I'm looking for an idea of how long it took you to settle into this foreign object on your face and did you feel like giving up? He says that with this machine he feels like it is forcing air in when he's trying to exhale, but from what I'm observing, it is actually when he has stopped breathing that this is happening, and I'm wondering if he is just subconsciously thinking that is what is going on? It wasn't until the doctors showed him the results of his studies that he actually finally believed that he was stopping breathing during the night (at one point as many as 37 times in 1 hour, with his oxygen saturation dropping to as low at 60% at one point), so this is obviously a serious situation and I am concerned that even though he is motivated to give this a chance to work, I'd like to be able to tell him that what he is experiencing is typical and that he should come back to bed after a few minutes and try again, rather than abandoning it completely for the night when this happens.

Any thoughts/ideas would be greatly appreciated. Thank you.

Lynne, and everyone who offered suggestions/advice.

Thank you so much for your encouragement. It has been a challenging weekend, to say the least, but for the past 2 nights, we are back to being cautiously optimistic again.

He spent Friday afternoon in the recliner in front of the TV for a couple of hours, like you suggested, getting used to the feel of the mask as well as the way the machine worked. He decided that he would "tweak" the settings so that it providing him with "breaths" at quite as fast a rate it was set on, and it seems to be more in rhythm with him. He also lowered the pressure of the air he got slightly. He has slept soundly for the past 2 nights in bed, and has kept the mask on for 6 hours before getting up. The first of those 2 nights, I woke up at whatever sleep stage it is where he normally stops breathing (usually about 2 hours after falling asleep), and he was on his back and seemed to be snoring slightly even with the mask on. I suggested that he up that particular setting for his oxygen, and then last night, he said his head hit the pillow and the next thing he knew it was 6 a.m.! He also isn't groggy this morning like he had been, so I'm hoping we're on the right track. He has another appointment with the sleep center on Thursday, and is doing a pulse oximetry study tomorrow night at home, so I hope the changes he made in the settings are not something he shouldn't have done. His rationale for doing so was that even if it wasn't exactly the settings he should have, if he were able to sleep and get used to the process, he could go from there.

Thanks again to you all.

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