Replies to This Discussion

Permalink Reply by Mary Z on January 3, 2012 at 12:35pm

Have an extra mask and an extra hose.

 

I don't have a battery,, generator, or back up machine.  My DME is very accessible if I have equipment problems (only once).

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Permalink Reply by K. S. on January 3, 2012 at 1:18pm

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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Permalink Reply by SarahVee on January 3, 2012 at 2:31pm

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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Permalink Reply by Terry Vella on January 3, 2012 at 3:22pm

Aas previously mentioned, use mask liners and a hoselift or make sure you hose is coming down from above your head.

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Permalink Reply by Lynn on January 3, 2012 at 9:32pm

First, don't be afraid to go back to where you received your cpap and say things aren't going well. I struggled with a mask for 3 solid weeks that would never work for me because I didn't want to be a bother. Be a bother!!! It's your health that is at stake and if you can't make the set up work, your health will continue to go downhill. Strangely, when I did go back to where I purchased my original cpap, the respiratory therapist said no problem, I've got just the solution you need. I suffered for 3 weeks and could have gotten help so much sooner. I put myself through a lot of needless worry and discomfort because I didn't want to be a bother.

Get educated. I have been using a cpap for 7 or 8 years and I didn't understand how the humidifier could make sleeping easier. I think I've learned more in the last month than I've learned for the previous 7 or 8 years. I never really did a support group/forum and had no one to ask questions of and of course, there's the big, ugly I don't want to be a bother attitude.

Be a bother. Get what you need to make your cpap work for you and bug folks, look for info until you understand your condition, whether it's sleep apnea or anything else.

There, that's my piece. :)

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Permalink Reply by ZolliStar on January 4, 2012 at 9:42am

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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Permalink Reply by ZolliStar on January 4, 2012 at 9:51am

Thanks, Sarah.

You won't be surprised to know that I've tried three different mask types and the one I thought I would never like at all is the one that really works for me: a nasal pillow style. I thought having the pillows poked in my nostrils would be annoying. (Fortunately, a RT at a support group meeting urged me -- quite convincingly, obviously -- that I should try that style. I'm glad that I took his advice.

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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Permalink Reply by Kristi Halsey on January 4, 2012 at 10:56am

I understand your frustration in getting a diagnosis.  I also think I have had some degree of sleep apnea for about 10 years and even went to my doctor and told her this when I was pregnant.  I was jerking awake, gasping for air and she blew me off and told me they didn't test pregnant women.  Imagine my surprise when I actually had the sleep study done and the tech told me they test pregnant women pretty regularly.    Glad that you have finally gotten a diagnosis you can do something with.
 
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. 

• ▶ Reply

Permalink Reply by John Weeks on January 4, 2012 at 11:39am

I would agree that the nasal pillows are very nice.   My brother really liked his so I tried one during the sleep study and was awakened when I opened my mouth and the air rushed out.  I then switched to a full face mask a few hours into the study and stayed with the Quatro FX but it kept leaking.   After three months struggling with the Quatro FX leaks (washing my face and mask every night was the best solution) I tried the nasal pillows again and have been much happier with them.   I am a mouth breather, I snore, and I have significant blockage of my nasal passages yet the nasal pillows still work well with very little practice.   Try a lot of different masks to find the one that works best for you.   I use the Opus 360 Nasal Pillows.  They are not the most popular but I found that I can sleep through the night without noticing them.   The first week I had to learn how to adjust the mask slightly when I rolled side to side and get the straps adjusted for perfect comfort.

A hose lift is very helpful for reducing the weight of the mask and tangles.

A CPAP pillow is very helpful if your mask is nudged by rolling on your side.

An $85 CMS-50e recordable oximeter is helpful if you want to do your own sleep studies to measure your oxygen levels through out the night.   It requires a PC to analyze the data and you need to use the customized USB cable that comes with the oximeter.   It is about as complicated to use as programming the time on your VCR.

 

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Permalink Reply by ZolliStar on January 4, 2012 at 11:58am

Do you use a chin strap? I've found mine to make a difference, since I, too, am a mouth breather.

You might try the Ultimate Chin Strap -- http://sleepapneasolutionsinc.com/ -- but there are others chin straps "out there". The Ultimate Chin Strap is 100% guaranteed.

John Weeks said:

I would agree that the nasal pillows are very nice.   My brother really liked his so I tried one during the sleep study and was awakened when I opened my mouth and the air rushed out.  I then switched to a full face mask a few hours into the study and stayed with the Quatro FX but it kept leaking.   After three months struggling with the Quatro FX leaks (washing my face and mask every night was the best solution) I tried the nasal pillows again and have been much happier with them.   I am a mouth breather, I snore, and I have significant blockage of my nasal passages yet the nasal pillows still work well with very little practice.   Try a lot of different masks to find the one that works best for you.   I use the Opus 360 Nasal Pillows.  They are not the most popular but I found that I can sleep through the night without noticing them.   The first week I had to learn how to adjust the mask slightly when I rolled side to side and get the straps adjusted for perfect comfort.

A hose lift is very helpful for reducing the weight of the mask and tangles.

A CPAP pillow is very helpful if your mask is nudged by rolling on your side.

An $85 CMS-50e recordable oximeter is helpful if you want to do your own sleep studies to measure your oxygen levels through out the night.   It requires a PC to analyze the data and you need to use the customized USB cable that comes with the oximeter.   It is about as complicated to use as programming the time on your VCR.

 

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Permalink Reply by Richard on January 4, 2012 at 12:26pm

I have an extra mask, hose, CPAP machine, humidifier - and I have a battery and DC power supply (I use it as an 'uninterruptible power supply' every night). However, I have severe obstructive sleep apnea (AHI 83) and require sleep meds. I *NEVER* go to bed without my CPAP (I've been using a CPAP for almost a decade.

What you need depends upon your condition. I've gathered equipment over time, but a spare hose and mask are really a good idea - they can get damaged (especially the hose), and you're going to need your 'next' one eventually. I have good insurance, so I've occasionally 'stretched' the use of my nose pillow headgear and hoses so that I always have a new one available. I've only damaged one hose in the time that I've had my machine - but I was really glad to have a spare hose around when I did.

I use the 'Breeze' nose pillows - it took me a couple of months of switching back and forth between the nasal pillows and the Breeze nasal mask, but now I wouldn't go back. The nose pillows stay completely out of the way when sleeping on my side (which is my normal sleep position). The hose on the headgear is routed over the top and towards the back of my head, so the hose is out of the way.

Headgear is a personal preference - spend some time to find what works for you. My wife is now using a CPAP, and has a full-face mask that she is getting used to - but may change. I went through a few masks before settling on the Breeze. Keep at it until you are happy - you really will be, and yes the first weeks/months work (and frustration!) will fade over time, and the difference to your health (physical and mental) can be really astounding. It certainly was to mine!

Mary Z said:

Have an extra mask and an extra hose.

 

I don't have a battery,, generator, or back up machine.  My DME is very accessible if I have equipment problems (only once).

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Permalink Reply by TorontoCPAPguy on January 4, 2012 at 1:02pm

get a machine that records data and the software to go with it so you can see what is happening during the night.  Get a recording pulse oximeter so you can match SpO2 against what goes on all night.

 

Can't do it in two pieces of advice so I will continue:

3.  Get a mask that fits well and is comfy.  I use a Quattro FFM so if my nose plugs up I can carry on sleeping.  I use a Mirage Nose Bag mask when watching TV in the evening if I expect to fall asleep.

 

4.  Take the CPAP/APAP with you wherever you go expecting to sleep overnight.  I spent two weeks in the hospital this past month and the CPAP let me sleep like a log.  The hospital even allowed me to infuse THEIR oxygen into my CPAP line so I sleep well all night.

 

5.  Get educated.  Know what it is that  you have and how to deal with it.

 

6.  Understand that OSA is a prime cause of Atrial Fibrillation - a heart affliction that will cut your quality of life to shreds.  I am back in Normal Sinus Rhythm after years of aFib and feel like a million bucks.  Know that aFib can be well hidden by OSA... similar symptoms.  Get an electrocardiogram read by a cardiologist if you are going to have a sleep study.... not read by a GP or nurse or clerk.... a CARDIOLOGIST!  The newest and best electrocardiogram gear actually prints "ATRIAL FIBRILLATION" across the strip in big red letters.  And if you have aFib get it treated IMMEDIATELY as the longer you wait the worse it gets and the harder it is to fix.

 

7. Forget nasal pillows for your CPAP machine.  They just don't work well and you are going to be disappointed.  THE FULL FACE MASK allows you to roll about and smoosh your face into the pillow without hassle.  Bring the hose up and behind your head (there are gadgets that do that for about $20) so you don't fight with the hose at night.

 

8.  Have your GP test for things like C Reactive Protein, Aldestorone, etc.  A full spread of blood tests on a regular basis.  To make sure that everything is working as it should be.

 

Good luck.

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