Especially for newly diagnosed - Dealing with Change

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
RestedRebel
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Re: Especially for newly diagnosed - Dealing with Change

Post by RestedRebel » Thu Jan 03, 2013 5:22 pm

Hi. I'm a new member to this board, having been recently diagnosed with moderate sleep apnea. When I had a recent colonoscopy, the anesthetist told me I had sleep apnea and to talk to my doctor about having a sleep study. My family doctor was extremely supportive and told me that he also suspected he was suffering from sleep apnea and was going to have to undergo a sleep study himself. I told him that I was concerned because my nose is always stuffed up and I was afraid I wouldn't be able to breathe through my nose. He told me this was one of the symptoms of sleep apnea and that changes and improvements have been made over the years, and that sleep apnea is the most underdiagnosed disorder around.

Because I suffer from anxiety, I took an anxiety pill both nights of my sleep study, which probably helped a lot although I did have trouble sleeping while being hooked up to all those monitors. I brought home my machine on December 26 and took anxiety pills for the first week until I got used to the machine. I had a little trouble sleeping the first night but my head felt clear-headed in the morning. During the course of the week, I learned I can sleep on my side or stomach with my head turned to the side, as I have a nasal pillow which allows me quite a bit of freedom of movement. Since the first day, my nasal passages have been clear and I can breathe all night and all day (I used to mouth breathe.) My machine also has a humidifier, and my nose feels so good in the morning as opposed to before I was put on my CPAP machine. I've maintained a positive attitude and not having a dry, irritated nose in the morning, makes my machine something I look forward to using. Feeling more rested is another benefit. The third benefit is that I'm happy, and no longer depressed. You see, I had been tired all the time even though I slept long hours which means that the quality of my sleep had been bad. To see life in a happy and positive way as opposed to be being too tired to do anything or look forward to anything is a huge improvement.

The question I have for the community is how often others clean the hoses to their machines. I don't want to get any kind of infection, but is it really necessary to clean the tube each and every week?

It's a relief to know why I was depressed, to know that I can get off my anti-depressants, and to know that my blood pressure meds will be able to be reduced after being treated for my disorder. I've also been unable to lose weight and had gained some, so it's wonderful to know that the weight loss should occur as well. I could fall asleep just sitting in a chair and reading, so it's nice to know why that was happening and to know that I can do something about that.

I checked my AHI score after a week of using my machine, and the number reads 0.9. Can anyone tell me what this number means? Thanks. I look forward to participating and sharing my ideas and viewpoints with the community.

HoseCrusher
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Re: Especially for newly diagnosed - Dealing with Change

Post by HoseCrusher » Fri Jan 04, 2013 12:28 pm

Isn't it wonderful when a treatment works well...

It sounds like you are off to a good start. Now all you need to do is keep using your machine every night.

You should clean your equipment based upon your immune system.

Those with a strong immune system seldom (if ever) clean their hoses. Those with a weaker immune system find periodic cleaning helps eliminate one possible source of infection.

Those who have grandchildren that like to play fighter pilot and mask up using grandpa's mask, clean after every visit...

During your sleep study your body functions were monitored. These included air flow, pulse rate, blood oxygen levels, heart function, brain function, and body movement. The data from this monitoring provides the information needed to diagnose sleeping problems.

xPAP machines monitor air flow. They make an effort to provide feedback on disruptions in air flow and report that as an apnea hypopnea index (AHI). This gives us a number to keep track of. The closer to 0 it is, the better our sleep should have been. The problem is that it is only 1 indicator. The machine doesn't know what caused the interruption in air flow.

If the cat jumps on you in the middle of the night, this interruption of air flow has nothing to do with a sleep disorder...

In general, the AHI reported by the machine is useful. If you see it as being stable, things are good. If suddenly you see it increasing, it is time to take a look at what is going on and try to gather as much information as you can and with the help of your doctor figure out how to eliminate the problem.

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Mask: Brevida™ Nasal Pillow CPAP Mask with Headgear
Humidifier: HumidAire H4i™ Heated Humidifier
Additional Comments: Retired my Swift FX
Machine is an S8 Autoset II. SpO2 96+% and holding...

RestedRebel
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Re: Especially for newly diagnosed - Dealing with Change

Post by RestedRebel » Sun Jan 06, 2013 1:22 pm

I have continued to use my machine every night, and last night was the best night of sleep I have had in ages. Years. I woke up feeling fresh and energetic, and of course, as with the first night and each subsequent night, my nose and throat have been clear upon waking in the morning. Even on the telephone people can tell that my voice has cleared up. My AHI for last night was .6 and my overall AHI is 1, so I would say this machine is doing me a world of good. I clean my nose pillow mask every night before I go to bed and clean out the water reservoir. I'll have to change my filter on Thursday because it will have been two weeks since I first started using it.

I'm using a
F&P Icon™ Auto CPAP with Humidifier and ThermoSmart™ Tube, and it seems to be perfect for meeting my needs. I don't see any examples of my nose pillow mask on-line, but it is also a F & P with just a nasal mask and a band to hold it on and it seems to keep a tight seal.

I am totally pleased with my CPAP experience thus far, feel so much better, and look forward to feeling a lot better as I continue to use my machine.

madmoe
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Re: Especially for newly diagnosed - Dealing with Change

Post by madmoe » Tue Jan 08, 2013 8:05 am

I guess I'm on the other end of this spectrum. I was diagnosed in September 2012, had an AHI of 61. My airflow is set to 18 currently. The Sleep Study people said 25 but my Respiratory person suggested 18 to start with and see where it goes. I have always been a side sleeper, but found when I use my mask on my side, I swallow so much air that the pain in my gut wakes me up. This means I sleep on my back, which is also taking getting used to. I have tried many different masks. I tried the nose mask and pillows, but found that I always felt like I was suffocating, could not get enough air.

I found that my jaw kept dropping open so far that it would go outside the mask, so I started using a chin strap to keep it more closed.

I've woken up during the night with my mask leaking bad enough to have to shut down the machine, adjust the mask, and restart. The second time that happens in the night I usually leave it off out of frustration.

I have yet to be able to sleep all night hooked up to this thing. I know I need it, but thus far have not been having a good experience....

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Summer Rain
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Re: Especially for newly diagnosed - Dealing with Change

Post by Summer Rain » Thu Jan 10, 2013 12:37 pm

idamtnboy wrote:In response to the discussion in the thread about an unsupportive spouse I felt prompted to revise a write up I have concerning dealing with change. We encounter changes of all sorts through life, including the one when we received the diagnosis of sleep apnea. How we respond is almost always the same, albeit in different degrees and intensity. The emotional phases we go through are shock, denial, depression, and acceptance.

The information I share is derived from a work seminar on the subject and my own experiences of life. I trust it will be of benefit to some.

Coping with Change for CPAP Patients


I just want to thank you so much for your "amazingly insightful" way of decribing how this "transformational time" can be for a new Cpap user! I sorta laughed and cried as I read it....as you REAllY were describing me to a "T" ! I am brand new to this sight....not even sure I am making this post the right way........? But the first thing I read was your post and I can't tell you how much it helped me to know that there were others who understood!! I am still transitioning out of "shock and denial"...so say a little prayer for me! Yes, I am depending on GOD to get me through this , too! :wink:

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Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube
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idamtnboy
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Re: Especially for newly diagnosed - Dealing with Change

Post by idamtnboy » Thu Jan 10, 2013 7:45 pm

Summer Rain wrote:I just want to thank you so much for your "amazingly insightful" way of decribing how this "transformational time" can be for a new Cpap user! I sorta laughed and cried as I read it....as you REAllY were describing me to a "T" ! I am brand new to this sight....not even sure I am making this post the right way........? But the first thing I read was your post and I can't tell you how much it helped me to know that there were others who understood!! I am still transitioning out of "shock and denial"...so say a little prayer for me! Yes, I am depending on GOD to get me through this , too! :wink:

Thank you for your kind words. And thank you to everyone else who has read and commented on my article. Makes me truly glad I was able to share it.

I don't come back and respond every time someone comments simply so this topic remains free of comments that add little to its substance. But I do read all of them. The variation in the experiences and feelings of all CPAP users is very interesting and sometimes rather intriguing. Again, thank you to everyone.

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rjwatson
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Re: Especially for newly diagnosed - Dealing with Change

Post by rjwatson » Sun Jan 20, 2013 1:16 pm

I'm newly diagnosed. I have numerous medical issues along with sever obstructive sleep apnea. I started with an auto cpap machine. The mask is good, the sound I can deal with, and set-up is not complicated. My husband is getting good sleep now that I'm not snoring, gasping, and not breathing. The problem I'm having is nightmares. Very vivid nightmares. My neurologist said it is typical and will get better when I get reserve sleep banks; which may take several months to years. I don't have a choice. I desperately need good night's sleep because of diabetes, high blood pressure, 2 pulmonary emboli at different times, depression and last but not least, CIDP which is a neurological disease that effects the brain. Lawd have mercy. I would love to sleep without nightmares.

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HoseCrusher
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Re: Especially for newly diagnosed - Dealing with Change

Post by HoseCrusher » Sun Jan 20, 2013 3:21 pm

Congratulations on your adaptation to this therapy. This is the first step and the journey does get better.

Unfortunately the xPAP machines don't have a "pleasant dreams only" button... :)

There are a few things you can try. Eliminate stress and anxiety as much as possible. Sometimes supplements such as magnesium and a B complex can help. Also some additional sulfur may help.

You also may want to visit "the bank." They may be able to figure out a "rapid payment plan" for your sleep debt... :)

Here is hoping you have pleasant dreams from here on out.

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Mask: Brevida™ Nasal Pillow CPAP Mask with Headgear
Humidifier: HumidAire H4i™ Heated Humidifier
Additional Comments: Retired my Swift FX
Machine is an S8 Autoset II. SpO2 96+% and holding...

rafael101
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Re: Especially for newly diagnosed - Dealing with Change

Post by rafael101 » Mon Jan 21, 2013 1:23 pm

hi my name iis rafael i am a new with this whole sleep apnea thing i need help i am scared and i have seen the videos so wut do u gys recamend

HoseCrusher
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Re: Especially for newly diagnosed - Dealing with Change

Post by HoseCrusher » Mon Jan 21, 2013 6:56 pm

I recommend that you read the various posts on the forum. When you run across something that you don't understand, ask questions about it.

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Mask: Brevida™ Nasal Pillow CPAP Mask with Headgear
Humidifier: HumidAire H4i™ Heated Humidifier
Additional Comments: Retired my Swift FX
Machine is an S8 Autoset II. SpO2 96+% and holding...

JLM1951
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Re: Especially for newly diagnosed - Dealing with Change

Post by JLM1951 » Sat Feb 23, 2013 2:39 pm

Last night was my first night at home with my new CPAP and nose pillows. Was a constant battle all night dealing with keeping gear in place and finally getting the humidifier set so I wasn't so dried out and had no rainouts. My setting is for 13 and the pressure seems high and I must have been swallowing lots of air, which woke me quite often. I'm feeling positive that I'll eventually get use to it. I've ordered a hose cover and strap guards to help soften the area around my cheeks. I'm learning lots from this forum and I appreciate everyone's input. Hope I make a speedy adjustment to this and looking forward to putting an end to my insomnia. Did get to giggle a little when I first put it on. My cat jumped up in bed, took one look and hissed at me. Think she slept under the bed for the night.

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DavidCarolina
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Re: Especially for newly diagnosed - Dealing with Change

Post by DavidCarolina » Fri Mar 01, 2013 11:32 am

WHen i got sick sudden onset both apnea and adrenal problems my wife told me straight out she didnt believe me or that
I was exaggerating.

All this even though she was in the ER before diagnosis and saw my heart palpitating and BP going up and down.

The MORON doctors told me I had ANXIETY. Not one of the physicians in the early stages even SUGGESTED apnea, even though
i was a 50 year old white male stocky with a thick neck and a narrow airway describing breathing problems.

My wife has migraines which I never one time ever questioned in my mind: she said it i believed it.

Chronic health problems are dang dangerous physically, emotionally and maritally unless youre with a rock solid traditional
loving and empathetic person who who are one with. IF not, youre pretty much on your own.

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sleepstar
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Re: Especially for newly diagnosed - Dealing with Change

Post by sleepstar » Fri Mar 01, 2013 7:35 pm

DavidCarolina wrote:WHen i got sick sudden onset both apnea and adrenal problems my wife told me straight out she didnt believe me or that
I was exaggerating.

All this even though she was in the ER before diagnosis and saw my heart palpitating and BP going up and down.

The MORON doctors told me I had ANXIETY. Not one of the physicians in the early stages even SUGGESTED apnea, even though
i was a 50 year old white male stocky with a thick neck and a narrow airway describing breathing problems.

My wife has migraines which I never one time ever questioned in my mind: she said it i believed it.

Chronic health problems are dang dangerous physically, emotionally and maritally unless youre with a rock solid traditional
loving and empathetic person who who are one with. IF not, youre pretty much on your own.




It really worries me how many doctors don't know about OSA.

Robotcoupe

Re: Especially for newly diagnosed - Dealing with Change

Post by Robotcoupe » Sat Mar 09, 2013 4:18 pm

Hey all,

I am waiting as I write this for the tech to come with my first cpap machine today.
Looking forward to this greatly, as my one experience was during a sleep study where I used a cpap for half the night.
I woke up the next morning with so much energy, I realized... I'm not getting old or slowing down.... I've just been dealing with the effects of sleep apnea!

I look forward to being my old self!