Especially for newly diagnosed - Dealing with Change

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
mgaggie
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Location: Victoria, Australia

Re: Especially for newly diagnosed - Dealing with Change

Post by mgaggie » Wed Jun 26, 2013 2:20 am

HoseCrusher wrote:maggie, While you have high expectations, they are not unrealistic.

Remember that each journey begins with a single step. Many times we get caught up in figuring out how to conquer the obstacles ahead that we forget to stop and sit down and rest for awhile and look back to see how far we have come.


OK, rest period is over and to borrow a famous line "Up, UP, and Away."

Remember that we are here to support you in any way that we can. Most of us will trying and offering new ideas until you finally experience success.
Thankyou HoseCrusher. 99.9% of people I've come across here have been fantastic and I've appreciated all the advice and suggestions I've been given. Success will happen, it will just take a little time .

trevor1
Posts: 3
Joined: Mon Jul 08, 2013 8:22 am

Re: Especially for newly diagnosed - Dealing with Change

Post by trevor1 » Mon Jul 08, 2013 8:47 am

Hi,

I haven't been diagnosed but it's obvious to me that I've got it. Tired all the time, waking up many times in the night. Sometimes I remember gasping after a blocked throat and sometimes not, sometimes find myself panting for a while to get oxygen back into the system. Wife always complains about my snoring and others have asked if I have sleep apnea in the past.

Anyway don't have the time or inclination to mess around with a sleep study, hospitals, doctors etc So have ordered an APAP system to give it a go. Should be able to work it out myself I'd guess. Thanks for all the good info on here.

keepsmyelin
Posts: 17
Joined: Thu Jul 25, 2013 9:05 am

Re: Especially for newly diagnosed - Dealing with Change

Post by keepsmyelin » Thu Jul 25, 2013 9:22 am

I'm a newbie and think your forum is one of the best medical forums I've visited. I have MS, and have frequented neurological boards for years, but after I was diagnosed with apnea I decided to look for a forum about the CPAP and Mr. Google directed me here. I received my CPAP yesterday and I had no problems using it last night. I sort of expected that because my sleep lab experience with the CPAP went well also. The interesting thing for me was reading the Dr.''s reports that came with the paperwork on the machine...again I used google to determine what was being reported. I was experiencing no REM and my O2 level was 84% in the original study, so I figure I've got nowhere to go but up (REM increased to 10% and O2 to 90% in the sleep lab with the CPAP.)

As to acceptance, the good thing about having MS is that stages of grief resulting in acceptance is a process we go through on a regular basis. Progressive diseases progress, and a new normal is constantly being redefined. I am actually looking forward to using the machine to see if it can improve my QOL. I had no idea I had a problem with sleep, so even though the diagnosis was rather unexpected, I'm anticipating good things from using this tool to improve my health.

Now to find this forum and know I can get answers and opinions from others is just "icing on the cake." Thanks to all who take the time to participate.

Guest

Re: Especially for newly diagnosed - Dealing with Change

Post by Guest » Sat Jul 27, 2013 12:28 pm

Hello,

I want to thank you for your beautiful and inspiring essay on adjusting to change. I am new to the CPAP world and am looking for answers or just encouragement to stick with it. It has been difficult but I am willing to do what I need to do.


Thanks again,

Carole

Guest

Re: Especially for newly diagnosed - Dealing with Change

Post by Guest » 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.

edwin617
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Joined: Thu Aug 08, 2013 7:40 am
Location: Boston, MA

Re: Especially for newly diagnosed - Dealing with Change

Post by edwin617 » 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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trevor1
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Re: Especially for newly diagnosed - Dealing with Change

Post by trevor1 » 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.

trevor1
Posts: 3
Joined: Mon Jul 08, 2013 8:22 am

Re: Especially for newly diagnosed - Dealing with Change

Post by trevor1 » 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.

Guest

Re: Especially for newly diagnosed - Dealing with Change

Post by Guest » 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

mgaggie
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Location: Victoria, Australia

Re: Especially for newly diagnosed - Dealing with Change

Post by mgaggie » 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.

IrishSpike67

Re: Especially for newly diagnosed - Dealing with Change

Post by IrishSpike67 » 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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idamtnboy
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Re: Especially for newly diagnosed - Dealing with Change

Post by idamtnboy » 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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SavageAnimal
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Re: Especially for newly diagnosed - Dealing with Change

Post by SavageAnimal » 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...

Tgladden86
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Re: Especially for newly diagnosed - Dealing with Change

Post by Tgladden86 » 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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sleepy1235
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Re: Especially for newly diagnosed - Dealing with Change

Post by sleepy1235 » 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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