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

Postby Guest on Thu Aug 08, 2013 7:39 am

mgaggie wrote:I'm almost 4 months of cpap therapy. I've always accepted the fact that I needed a cpap machine. My problem is that I had very high expectations eg; I would be able to keep the machine on all night every night, I would have huge amounts of energy etc. It hasn't turned out that way.


I feel the same -- I'm okay with using it, but I just want to be able to keep it on all night. Sometimes, I take it off in the middle of the night, with the thought that I'd put it back on in a few minutes. Those few minutes turn into a few hours, and by the time I realize it, it's too late.

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Re: Especially for newly diagnosed - Dealing with Change

Postby edwin617 on Thu Aug 08, 2013 7:42 am

Guest wrote:
mgaggie wrote:I'm almost 4 months of cpap therapy. I've always accepted the fact that I needed a cpap machine. My problem is that I had very high expectations eg; I would be able to keep the machine on all night every night, I would have huge amounts of energy etc. It hasn't turned out that way.


I feel the same -- I'm okay with using it, but I just want to be able to keep it on all night. Sometimes, I take it off in the middle of the night, with the thought that I'd put it back on in a few minutes. Those few minutes turn into a few hours, and by the time I realize it, it's too late.



I posted this, by the way -- I'm new to the forums.

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Re: Especially for newly diagnosed - Dealing with Change

Postby trevor1 on Tue Aug 13, 2013 7:36 pm

I've tried the Autoset for a week now, set the min pressure to 5.8, max to 14. EPR = 2, temp to 27c. I've reduced the min pressure to 5.4 because it seemed like a little much pressure in the throat at bedtime.
The AHI is being reported at 0.6 and mask fit is good. It reports that it's raised the pressure to 8 at peak.

A couple of times I've slept for 5 hours and when I woke up in the middle of the night felt it was the best sleep for years. That was a good feeling :)
The issue I've got is the Swift FX nasal pillows are maybe not for me. Sometimes I feel like I can't get enough air and my nose gets a little sore. When I wake after a few hours I have to take it off for the rest of the night.
I'm thinking of trying a face mask like the Quattro Air. Does this seem like a sensible idea? Thanks again for all the information on this forum.

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Re: Especially for newly diagnosed - Dealing with Change

Postby trevor1 on Thu Aug 15, 2013 1:44 am

Only 4.5 hours use last night, AHI = 0.4 Today I feel the most refreshed for a long time - must have been deep sleep. It's hard and sometimes I feel like I'm suffocating but seems worth it.

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Re: Especially for newly diagnosed - Dealing with Change

Postby Guest on Sun Aug 25, 2013 12:50 pm

I am totally a newbie as a being diagnosed with OSA. I am still learning all the terminology and what questions I should be asking the sleep lab and my primary care physician. It seems I have to ask a lot because they expect me to know things and I truly don't. I was stunned at what they charged my insurance carrier for the sleep study and the follow up titration. Now I have received a call from the DME (yea I know what that means). My doctor prescribed a certain machine and a certain mask based on the study. I go meet with them on Tuesday afternoon. Again was shocked at the cost to the insurance and my copay. It was nearly twice of the amount I am seeing these machines online.

Thanks for the dealing with change information, it has helped me tremendously. I just want a good night sleep, I would prefer not to be wearing a mask because I have never been good with anything that covered my nose and my mouth. I didn't think I would make it through the night for the sleep study. Now I worry that I may have spent all this time and money and not use the darn equipment.

What a crazy turn of events in my life as I age, I am hopeful that over time this will provide me a good night sleep and a good start to my day in the morning.

Thanks for letting me get my fears off my mind.
TCK

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Re: Especially for newly diagnosed - Dealing with Change

Postby mgaggie on Mon Aug 26, 2013 9:26 pm

edwin617 wrote:
Guest wrote:
mgaggie wrote:I'm almost 4 months of cpap therapy. I've always accepted the fact that I needed a cpap machine. My problem is that I had very high expectations eg; I would be able to keep the machine on all night every night, I would have huge amounts of energy etc. It hasn't turned out that way.


I feel the same -- I'm okay with using it, but I just want to be able to keep it on all night. Sometimes, I take it off in the middle of the night, with the thought that I'd put it back on in a few minutes. Those few minutes turn into a few hours, and by the time I realize it, it's too late.



I posted this, by the way -- I'm new to the forums.


Welcome to the forums edwin. I think its worse when you have such high expectations.

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Re: Especially for newly diagnosed - Dealing with Change

Postby IrishSpike67 on Tue Sep 03, 2013 11:34 pm

Okay, I'm trying to be supportive here but "...anger, denial, depression"? Because you have Sleep Apnea? Really? Holy cow, folks. It's better to know what it is, finally, and get the necessary equipment so you can get it under control. I've read comments on other forums about spouses being "heartsick" about having to use a cpap in bed and how it completely wrecked someone's romantic life. Are you kidding me? WTF?

I have sleep apnea and my partner has it, too. We like to joke that we have "dueling cpap machines". We can get romantic and THEN go to sleep and neither of us is devastated or depressed or suicidal about having to wear a mask (me) and nose pillows (her).No sex appeal is hampered by the nest of hoses snaking all over the fluffy cotton pillows. I WAS depressed before I was diagnosed, not understanding why I felt so awful all the time, couldn't sleep, woke up with a pounding headache, nearly died several times, developed heart problems, etc. After I knew what it was I had and underwent the sleep study, I was happy.

If your love life is being derailed in so extreme a fashion because one or both of you uses a cpap machine, well, I feel really sorry for you. If that's the worst thing you can imagine having to deal with... wake up! Pun intended!

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Re: Especially for newly diagnosed - Dealing with Change

Postby idamtnboy on Wed Sep 04, 2013 1:36 am

IrishSpike67 wrote:Okay, I'm trying to be supportive here but "...anger, denial, depression"? Because you have Sleep Apnea? Really? Holy cow, folks. It's better to know what it is, finally, and get the necessary equipment so you can get it under control. I've read comments on other forums about spouses being "heartsick" about having to use a cpap in bed and how it completely wrecked someone's romantic life. Are you kidding me? WTF?

I have sleep apnea and my partner has it, too. We like to joke that we have "dueling cpap machines". We can get romantic and THEN go to sleep and neither of us is devastated or depressed or suicidal about having to wear a mask (me) and nose pillows (her).No sex appeal is hampered by the nest of hoses snaking all over the fluffy cotton pillows. I WAS depressed before I was diagnosed, not understanding why I felt so awful all the time, couldn't sleep, woke up with a pounding headache, nearly died several times, developed heart problems, etc. After I knew what it was I had and underwent the sleep study, I was happy.

If your love life is being derailed in so extreme a fashion because one or both of you uses a cpap machine, well, I feel really sorry for you. If that's the worst thing you can imagine having to deal with... wake up! Pun intended!

I think you're being unjustifiably harsh here. Different folks have different responses. Some see OSA and CPAP as destroying, or at least damaging, a previously quite nice life, and they have a tough time dealing with it. Others, like you, are tremendously relieved to finally have an answer for why they haven't been feeling good and are always tired. Change always affects a person. Every person responds in a manner consistent with the whole of their personality and life experiences. One person's response is not a proper standard to use to judge another person's response.

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Re: Especially for newly diagnosed - Dealing with Change

Postby SavageAnimal on Thu Sep 12, 2013 1:34 pm

IrishSpike67 wrote:Okay, I'm trying to be supportive here but "...anger, denial, depression"? Because you have Sleep Apnea? Really? Holy cow, folks. It's better to know what it is, finally, and get the necessary equipment so you can get it under control. I've read comments on other forums about spouses being "heartsick" about having to use a cpap in bed and how it completely wrecked someone's romantic life. Are you kidding me? WTF?

I have sleep apnea and my partner has it, too. We like to joke that we have "dueling cpap machines". We can get romantic and THEN go to sleep and neither of us is devastated or depressed or suicidal about having to wear a mask (me) and nose pillows (her).No sex appeal is hampered by the nest of hoses snaking all over the fluffy cotton pillows. I WAS depressed before I was diagnosed, not understanding why I felt so awful all the time, couldn't sleep, woke up with a pounding headache, nearly died several times, developed heart problems, etc. After I knew what it was I had and underwent the sleep study, I was happy.

If your love life is being derailed in so extreme a fashion because one or both of you uses a cpap machine, well, I feel really sorry for you. If that's the worst thing you can imagine having to deal with... wake up! Pun intended!


I feel the same way... my life was barely worth living before my sleep study and beginning PAP therapy. I knew for quite some time that I for sure had severe OSA from researching everything I was experiencing (often finding myself reading posts on this very forum), but for many reasons did nothing about it, having no insurance, feeling like there was nothing I could do about it, and really just generally not caring about anything. Once I was able to get insurance and had my Dr set me up for a sleep study, I found out just how severe my OSA actually was (AHI=117 - O2=54%). I have been using my machine for just over 2 weeks now, and I couldn't imagine myself trying to make excuses to not use it. It even annoys me that a couple nights I have apparently taken the mask off in my sleep. I don't want to sleep without it because I know the immediate change for the better it made in my life the very first night that I used it. No depression, no denial, no anger. I am happy and wide awake enjoying life, and have my machine to thank for it.
...THINK FOR YOURSELF - QUESTION EVERYTHING...

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Re: Especially for newly diagnosed - Dealing with Change

Postby Tgladden86 on Tue Nov 19, 2013 5:37 am

New to this forum just didn't come face the facts intill the other day when I got my cpap the other day. Now I keep waking up in the middle of the night with the darn mask on my forehead and my insurance say I need to use at lease four hrs a night and they can tell when I am not using it or when I am using it so my name is Tim and how is every one?

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Re: Especially for newly diagnosed - Dealing with Change

Postby sleepy1235 on Sat Dec 07, 2013 8:38 pm

Oh please!

Having sleep apnea is not a fatal diagnosis. The whole "shock, denial, depression, and acceptance" are the stages of dealing with a fatal diagnosis. My mother died of breast cancer, I know.

This is what happens with an apena diagnosis.

1. You find out that there is a root cause for why you are sleepy. It isn't because you are older. You are relieved.

2. You find out that there is a treatment and it is effective. You are overjoyed.

3. You use the CPAP machine and it works and you are resurrected and can get around doing stuff again. You are further happy.

4. You regret that you didn't find out years earlier.

Some people just like drama.

P.S. If I do get a fatal diagnosis I don't plan on acting out some drama of stoicism to be applauded by others. I am going cursing into the night, even if I live to be a 100.

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Re: Especially for newly diagnosed - Dealing with Change

Postby idamtnboy on Sat Dec 07, 2013 10:49 pm

sleepy1235 wrote:Oh please!

Having sleep apnea is not a fatal diagnosis. The whole "shock, denial, depression, and acceptance" are the stages of dealing with a fatal diagnosis. My mother died of breast cancer, I know.

This is what happens with an apena diagnosis.

1. You find out that there is a root cause for why you are sleepy. It isn't because you are older. You are relieved.

2. You find out that there is a treatment and it is effective. You are overjoyed.

3. You use the CPAP machine and it works and you are resurrected and can get around doing stuff again. You are further happy.

4. You regret that you didn't find out years earlier.

Some people just like drama.

P.S. If I do get a fatal diagnosis I don't plan on acting out some drama of stoicism to be applauded by others. I am going cursing into the night, even if I live to be a 100.

Your reaction affirms the notion that people experience all sorts of reactions, some negative, some quite positive like yours. For some people sleep apnea is a fatal diagnosis. Not fatal in the sense of being sentenced to a physical death, but fatal to a previous comfortable life style with no mechanical interferences with sleep time and other bedroom activities. I can tell you from personal experience the four phases are not limited to dealing with death. They are quite commonly experienced when one encounters any kind of significant change in one's life, both negative and positive. Your reaction to your OSA diagnosis is not uncommon, but it is not universal. The grief of losing a comfortable lifestyle also is not uncommon, but it also is not universal.

This is not a situation where one size fits all, but it does fit a lot of folks.

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Re: Especially for newly diagnosed - Dealing with Change

Postby John in Calgary on Fri Jan 10, 2014 12:22 pm

Thanks for sharing.

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Re: Especially for newly diagnosed - Dealing with Change

Postby Carvi_09 on Sat Jan 25, 2014 3:26 am

Nice post!

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Re: Especially for newly diagnosed - Dealing with Change

Postby parksje on Mon Jan 27, 2014 3:29 pm

IrishSpike67 wrote:Okay, I'm trying to be supportive here but "...anger, denial, depression"? Because you have Sleep Apnea? Really? Holy cow, folks. It's better to know what it is, finally, and get the necessary equipment so you can get it under control. I've read comments on other forums about spouses being "heartsick" about having to use a cpap in bed and how it completely wrecked someone's romantic life. Are you kidding me? WTF?


I gotta agree with IrishSpike here. I didn't go through any denial, shock, depression, or anger. We're not talking about a terminal illness. We're talking about something that can mostly be fixed pretty much painlessly. Sure, there's an adjustment, but c'mon, it's not chemotherapy.

My love life is actually better because I don't fall asleep before she's ready, and my wife's sleeping better because my machine is much more quiet than my snoring, so she's in a better mood all day. I haven't tried any crazy role play with my mask on, but it does kind of make me look like Hannibal Lecter, so I guess if someone was into that, or maybe wanted to pretend to be Darth Vader, it might even be exciting. Otherwise, who's getting it on while wearing their sleeping gear???

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