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If you had two pieces of advice to give a newbie....
...what would those two pieces be?
A lot of us would really benefit from the been-there, endured-that experience you veterans have to offer us.
AND....
Happy New Year!
Views: 2557
Replies to This Discussion
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Permalink Reply by Brett Husebye on
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The brush was bought because "swish" method no longer worked. I can smell when the tank and hose need cleaning. They sell the hose brush for a reason. If you soaked your hose 20 mins in the vinegar/soapy water and the next morning your hose is back to being moldy, you one need a new hose or two need a brush. Your pick on which one you want to go with. After 6 month I recommend changing to a new hose regardless of what cleaning method you use.
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I sleep on my side with my head hanging off the edge of a memory foam pillow with a dip in the middle and raised bumps on the edges for neck support my mask never comes off. I keep a fan on me at all times or I feel like I can't breathe, no matter how cold it is. My mask never comes off without me taking it off.
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Be a bother...cpap company... Dr... Don'y give up! :) I'm finally sleeping on a regular basis, I changed my Dr and melatonin 1.5mg. (it only took 6 years) TOO LONG Be pro active for yourself!!! I should have been.
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Hey Brett,
Where in the world did you get a six foot long brush?
Guy
My 2C:
1. One night without the mask is not worth the risk. Two of my friends have died from ignoring their sleep apnea. Once you sort the mask the healing can begin.
2. I once was asked at work if I was on drugs. (I don't do any at all and only drink about 2 times a year.) I now understand why they asked that. My memory has improved. My health has improved. My God, sleep is a blessed gift now. No more 12 hours in bed and still feeling like crap. I have been on now for 18 months and the world has changed. :) Also point 3 & 4: Don't give up and clean your equipment regularly at least once a week. (Don't forget that professionals can clean the inside to extend the life of your machine).
ok ok I am done. :)
Brett Husebye said:Use distilled water. Keep everything clean and get the 6 foot long brush to clean the hose, use vinegar and water to clean it (humidifer, mask, hose).
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Permalink Reply by ZolliStar on
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Guy T, I'm trying to get two people who have sleep apnea to take their conditions more seriously. Can you give us more information about your friends' deaths?
A friend told me three weeks ago that a former boyfriend was found dead one morning. An autopsy ruled out all other causes of death; the only thing left was SA. According to my friend, her former boyfriend hated the idea of CPAP, mask, etc., etc. and eschewed it all.
She's convinced that it caused his death.
GUY T said:Hey Brett,
Where in the world did you get a six foot long brush?
Guy
My 2C:
1. One night without the mask is not worth the risk. Two of my friends have died from ignoring their sleep apnea. Once you sort the mask the healing can begin.
2. I once was asked at work if I was on drugs. (I don't do any at all and only drink about 2 times a year.) I now understand why they asked that. My memory has improved. My health has improved. My God, sleep is a blessed gift now. No more 12 hours in bed and still feeling like crap. I have been on now for 18 months and the world has changed. :) Also point 3 & 4: Don't give up and clean your equipment regularly at least once a week. (Don't forget that professionals can clean the inside to extend the life of your machine).
ok ok I am done. :)
Brett Husebye said:Use distilled water. Keep everything clean and get the 6 foot long brush to clean the hose, use vinegar and water to clean it (humidifer, mask, hose).
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Yeah one friend knew he had it but did not go to get his machinery. He simply stopped breathing one night and as he had been so tired most of the last 10 years I think he just failed to receive that kick from his brain to start up again, he was 62.
Other friend died suddenly again in his sleep. He did not know he had it but after discussion with his wife. He had all the symptoms- stop breathing, snoring the house down. Pity he was only 58. That could have been prevented he was in good health generally. :(
ZolliStar said:Guy T, I'm trying to get two people who have sleep apnea to take their conditions more seriously. Can you give us more information about your friends' deaths?
A friend told me three weeks ago that a former boyfriend was found dead one morning. An autopsy ruled out all other causes of death; the only thing left was SA. According to my friend, her former boyfriend hated the idea of CPAP, mask, etc., etc. and eschewed it all.
She's convinced that it caused his death.
GUY T said:Hey Brett,
Where in the world did you get a six foot long brush?
Guy
My 2C:
1. One night without the mask is not worth the risk. Two of my friends have died from ignoring their sleep apnea. Once you sort the mask the healing can begin.
2. I once was asked at work if I was on drugs. (I don't do any at all and only drink about 2 times a year.) I now understand why they asked that. My memory has improved. My health has improved. My God, sleep is a blessed gift now. No more 12 hours in bed and still feeling like crap. I have been on now for 18 months and the world has changed. :) Also point 3 & 4: Don't give up and clean your equipment regularly at least once a week. (Don't forget that professionals can clean the inside to extend the life of your machine).
ok ok I am done. :)
Brett Husebye said:Use distilled water. Keep everything clean and get the 6 foot long brush to clean the hose, use vinegar and water to clean it (humidifer, mask, hose).
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Thanks for these sad details.
I'll pass them along.
~ Z/S
GUY T said:Yeah one friend knew he had it but did not go to get his machinery. He simply stopped breathing one night and as he had been so tired most of the last 10 years I think he just failed to receive that kick from his brain to start up again, he was 62.
Other friend died suddenly again in his sleep. He did not know he had it but after discussion with his wife. He had all the symptoms- stop breathing, snoring the house down. Pity he was only 58. That could have been prevented he was in good health generally. :(
ZolliStar said:Guy T, I'm trying to get two people who have sleep apnea to take their conditions more seriously. Can you give us more information about your friends' deaths?
A friend told me three weeks ago that a former boyfriend was found dead one morning. An autopsy ruled out all other causes of death; the only thing left was SA. According to my friend, her former boyfriend hated the idea of CPAP, mask, etc., etc. and eschewed it all.
She's convinced that it caused his death.
GUY T said:Hey Brett,
Where in the world did you get a six foot long brush?
Guy
My 2C:
1. One night without the mask is not worth the risk. Two of my friends have died from ignoring their sleep apnea. Once you sort the mask the healing can begin.
2. I once was asked at work if I was on drugs. (I don't do any at all and only drink about 2 times a year.) I now understand why they asked that. My memory has improved. My health has improved. My God, sleep is a blessed gift now. No more 12 hours in bed and still feeling like crap. I have been on now for 18 months and the world has changed. :) Also point 3 & 4: Don't give up and clean your equipment regularly at least once a week. (Don't forget that professionals can clean the inside to extend the life of your machine).
ok ok I am done. :)
Brett Husebye said:Use distilled water. Keep everything clean and get the 6 foot long brush to clean the hose, use vinegar and water to clean it (humidifer, mask, hose).
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That's good advice, I actually have been on the cpap since may of 2011 and when I went to the sleep lab, they gave me only 1 mask to try, which was the resmed quattro, at first the mask was fine, but now I'm having issues with air blowing in my eyes, dry mouth, even with a humidifier and also leaves my skin around my nose irritated and always red. It's kind of frustrating.
SarahVee said:I am a new cpap user myself! I've been using it for 4 months and have been doing rather well with it. My two pieces of advice are:
1) Set small goals or celebrate small victories :) You're not going to make it 8 hours on your first night. Or week. Or maybe even month. I was glad to make it 2 hours. Then 3, 4 and so on. I can make it through the night now.
2) Use a mask liner. It's so much more comfortable. Part of what I hated about the mask at first was how it felt on my skin. The liner is much softer and doesn' t leave marks.
I actually have one more piece of advice--try different masks. I was given a full-face mask at first and absolutely hated having my mouth covered. I talked to my sleep tech and we tried a nasal mask. MUCH better. I tried 2 different ones and decided on the one that worked best for me. So don't try one mask type or mask brand and then quit. Keep trying. The difference I feel from actually getting real sleep made the trial and warm-up period worth it.
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I get a "new" hose every 3 months with my order. I guess I've been lucky because I've never had the moldy smell problem; I do rinse it every morning with HOT water and let it hang on the shower head to drip dry.
Brett Husebye said:The brush was bought because "swish" method no longer worked. I can smell when the tank and hose need cleaning. They sell the hose brush for a reason. If you soaked your hose 20 mins in the vinegar/soapy water and the next morning your hose is back to being moldy, you one need a new hose or two need a brush. Your pick on which one you want to go with. After 6 month I recommend changing to a new hose regardless of what cleaning method you use.
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I've had sleep studies done over the years and each time I was never diagnoised as having sleep apnea. Just 1 1/2 ago I had another over night study done & it was recommended that I get a CPAP, that I indeed, did have apnea. My main reason for seeing a doctor about it was that I was extremely tired, day and night. After using the CPAP for six months or so, I was NOT feeling one bit better, infact, I actually felt worse. My doctor discovered I was anemic. Put me on over the counter iron pills. That did nothing nor did it increase my blood count. He then sent me to a cancer/blood doctor to see if he could figure it out. My count was so low, I had 8 iron infussions. My count didn't go up then either. He referred me to a kidney specialist & this doctor said he saw why I was so tired. My kidneys were near to having dialysis. He immediately took me off of 3 medications that he said he bet was destroying my kidneys. Six weeks later my iron count was nearly normal and it was only then did I actually start feeling better. It's been a year now and I have not had to have any more iron infussions. I continue to use the CPAP with a humidifier, a full face mask and I do use the cloth liners. I guess what I am suggesting is that make sure your doctor(s) test for anemia if you feel tired or don't feel any better within 6 months of being your CPAP routine.
ZolliStar said:Thanks for pointing out that recovery is SLOW.
I think I've had sleep apnea for decades; I did all the rounds to different doctors to find out why I was so tired -- but I'm sure all of you know all about THAT! I even went to a well-recognized endocrinologist: I thought maybe my constant wake-ups throughout the night might be hormonal.
In all those years, seeing all those doctors, not one ever suggested the possibility of sleep insomnia.
What really infuriates me is that I finally went to a sleep disorder clinic in 2010. The doctors there thought it was plain vanilla insomnia. I was put on a sleep restriction protocol plus given all kinds of sleep hygiene tips (which I already knew all about). No one ever recommended an overnight study.
How did I find out what was wrong? I shared a hotel room for a night with a friend who had been researching sleep problems on behalf of her son, who has some kind of disorder (which no one has figured out as yet). Myra recognized instantly the significance of my loooooong breathing pauses, the snorting and snoring, etc., etc.
I had an appointment with a different clinic the following Monday morning, had an overnight...and the rest is history. My sleep apnea is severe and I LOVE my CPAP.
I thought I would immediately feel better just because I was sleeping better. Well, I don't feel exhausted, but can't say I really feel rip-roaring. I now know that it takes the body a while to heal from all the deficits over the years. So I'm (trying to be) patient.
So thanks for the advice, Katie. I've taken it to heart.
Katie Strasnick said:1. Focus on sleeping=wearing the mask ALWAYS. Realize that a bad night (and you will have "challenges " with your equipment) is better with CPAP than a good night without CPAP.
2. Expect a SLOW recovery in terms of all the physical and mental impairments you developed from sleep apnea.
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Thanks for the advice, Patricia.
I've been on CPAP a little over six months. I thought I would immediately feel like tearing up the world, but I don't. Grumble. That said, I do feel better and no longer experience the debilitating sleepy weariness.
I am now really considering my diet and eating patterns, exercise and other matters that affects how one feels.
I am also mindful that my body may be healing from the years of periodic night-time oxygen deprivation. That takes time.
Finally, I am getting getting some physical exams to exclude (as you did) other factors. Indeed, I'm getting test results in another day or two.
The truth? Tiredness, sleepiness, exhausting can have multiple causes. I had a severe candida problem. An alternative doctor diagnosed it and I went on a strict candida diet. It made a big difference in how I felt BUT the doctor didn't know why I slept so poorly. Neither did I.
The lesson? It's best if we work closely with health professionals AND ALSO perform our own detective work.
Patricia A Davis said:I've had sleep studies done over the years and each time I was never diagnoised as having sleep apnea. Just 1 1/2 ago I had another over night study done & it was recommended that I get a CPAP, that I indeed, did have apnea. My main reason for seeing a doctor about it was that I was extremely tired, day and night. After using the CPAP for six months or so, I was NOT feeling one bit better, infact, I actually felt worse. My doctor discovered I was anemic. Put me on over the counter iron pills. That did nothing nor did it increase my blood count. He then sent me to a cancer/blood doctor to see if he could figure it out. My count was so low, I had 8 iron infussions. My count didn't go up then either. He referred me to a kidney specialist & this doctor said he saw why I was so tired. My kidneys were near to having dialysis. He immediately took me off of 3 medications that he said he bet was destroying my kidneys. Six weeks later my iron count was nearly normal and it was only then did I actually start feeling better. It's been a year now and I have not had to have any more iron infussions. I continue to use the CPAP with a humidifier, a full face mask and I do use the cloth liners. I guess what I am suggesting is that make sure your doctor(s) test for anemia if you feel tired or don't feel any better within 6 months of being your CPAP routine.
ZolliStar said:Thanks for pointing out that recovery is SLOW.
I think I've had sleep apnea for decades; I did all the rounds to different doctors to find out why I was so tired -- but I'm sure all of you know all about THAT! I even went to a well-recognized endocrinologist: I thought maybe my constant wake-ups throughout the night might be hormonal.
In all those years, seeing all those doctors, not one ever suggested the possibility of sleep insomnia.
What really infuriates me is that I finally went to a sleep disorder clinic in 2010. The doctors there thought it was plain vanilla insomnia. I was put on a sleep restriction protocol plus given all kinds of sleep hygiene tips (which I already knew all about). No one ever recommended an overnight study.
How did I find out what was wrong? I shared a hotel room for a night with a friend who had been researching sleep problems on behalf of her son, who has some kind of disorder (which no one has figured out as yet). Myra recognized instantly the significance of my loooooong breathing pauses, the snorting and snoring, etc., etc.
I had an appointment with a different clinic the following Monday morning, had an overnight...and the rest is history. My sleep apnea is severe and I LOVE my CPAP.
I thought I would immediately feel better just because I was sleeping better. Well, I don't feel exhausted, but can't say I really feel rip-roaring. I now know that it takes the body a while to heal from all the deficits over the years. So I'm (trying to be) patient.
So thanks for the advice, Katie. I've taken it to heart.
Katie Strasnick said:1. Focus on sleeping=wearing the mask ALWAYS. Realize that a bad night (and you will have "challenges " with your equipment) is better with CPAP than a good night without CPAP.
2. Expect a SLOW recovery in terms of all the physical and mental impairments you developed from sleep apnea.
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