Especially for newly diagnosed - Dealing with Change

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
WinterLily
Posts: 30
Joined: Tue Oct 21, 2014 10:35 pm

Re: Especially for newly diagnosed - Dealing with Change

Post by WinterLily » Wed Oct 22, 2014 12:08 am

Thank you for this post!

I've been going through the denial phase recently - thinking maybe the doctor confused my results with someone else's, or maybe some miraculous new procedure will become available soon to make the condition go away. It will take time to deal with the change, and I'm just trying to stress less about it and think more positively about the benefits that treatment will bring after years of fatigue. This PDF helped put things in perspective.
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

jstill

Re: Especially for newly diagnosed - Dealing with Change

Post by jstill » Wed Oct 29, 2014 10:43 am

Hello
im a 25yr old male, 5'9 215 lbs, just recently diognosed with OSA. I've been using my cpap for 3nights now. My question is, has anyone heard of someone, loosing a significant amount of weight, to rid the sleep apnea and having to use the cpap? I'm only imagaing it for the rest of my life, I am married, and.. Well its nor the most attractive thing in the bed room TIA for any help

jajvirta
Posts: 19
Joined: Tue Nov 11, 2014 12:02 pm

Re: Especially for newly diagnosed - Dealing with Change

Post by jajvirta » Wed Nov 12, 2014 7:30 am

Got diagnosed moderate OSA last week (if I remember correctly, memory hasn't been serving me well lately) and I'm waiting for the shock and denial to kick in. So far, I'm just hoping to get CPAP treatment started soon so I can continue functioning like a normal human being. Last few months have been very foggy.

I was reported having a condition that depends on the position (my apnea is worse when I sleep on my back) and I've been trying to get temporary relief with the old tennis-ball-on-the-back-of-my-pyjamas trick and although I'm not sleeping as much on my back, it doesn't seem to give much help for my daytime tiredness.

It might be that I'm in so much denial that I don't recognize it, but so far I'm just eagerly waiting for the treatment to start.

User avatar
Jay Aitchsee
Posts: 2677
Joined: Sun May 22, 2011 12:47 pm
Location: Southwest Florida

Re: Especially for newly diagnosed - Dealing with Change

Post by Jay Aitchsee » Fri Nov 14, 2014 4:56 pm

Welcome to the new the members. For those of you who are asking questions, you may get better responses by posting under "topics" rather than "announcements". The "topics" section is rather unstructured, just jump in.
Nice to see you all,
Jay

Noctuary
Posts: 444
Joined: Sat Oct 04, 2014 1:10 pm

Re: Especially for newly diagnosed - Dealing with Change

Post by Noctuary » Fri Dec 26, 2014 4:14 am

I had no resistance to using the machine; I was desperate to be cured of chronic fatigue. Alas, its not that simple.

_________________
MachineMask
My machine: ResMed S9 Auto/H5i humidifier; in APAP mode- pressure range 8-13

Mask: Flexifit 407

echo_ohce

Re: Especially for newly diagnosed - Dealing with Change

Post by echo_ohce » Wed Dec 31, 2014 5:48 am

I am 56 and recently diagnosed with severe sleep apnea. I came online to see if watery eyes was a consequence of the machine, and was surprised but delighted to find a support group.

I'm kind of surprised though, that it is so difficult for some people to accept. Although I do look like Darth Vader at night, I am over joyed to be able to breathe easily and not fear dying in my sleep.

I actually have an APAP machine.

Delilah

Re: Especially for newly diagnosed - Dealing with Change

Post by Delilah » Thu Jan 15, 2015 3:48 pm

Thank you so much for this, I too, thought as soon as I lose weight that thing (Cpap mask) can come off. Big error. I got a great deal from your post and have posted a reply today. Didn't even think about the denial, anger think etcetera. It all starts to make sense now. I know there's a reason for the weight gain, irritability, tiredness and shortness of breath. I guess I have a partner, albeit a mechanical one, in bed with me for life now.

Johnny Bravo

ON CPAP FOR A WEEK WITH REFLUX, RHINITIS AND INSOMNIA

Post by Johnny Bravo » Thu Jan 29, 2015 1:00 pm

Hi:

I just found this forum and i found it awesome. I'm always wondering where i can find not only technical, but emotional support for my untreated sleep apnea. I feel shame writing this, but i'll give it a shot.

So after several years of being diagnosed with complex severe sleep apnea, and not using my cpap cause neither do i tolerate it nor it makes me sleep any better, I've come back to using it again out of desperation.

I've had all sorts of issues from leaks to mask too tight to feeling choked to finally finding i'm a full face mask user to not finding the right full face mask for me to not being able to fall asleep with it.

Now that i've come back to cpap and accepting i have to use it to save my life cause that's how bad and worse i am, i've managed to be able to use the mask, but i'm not sleeping any better with it. Maybe i've gone from feeling suicidal to not.

So, what do you do at this point? I've only gone for a week with cpap. Do i give it a long while like everyone says or do i go back to my doctor, or do i adjust the settings in the machine?

I have chronic acid reflux and an untreated stuffy nose (rhinitis, deviated septum, big turbinates. Doctors don't agree if i need surgery or not). I know these both need to be treated in order for cpap therapy to work, but with all i've done i just haven't been able to address these 2 issues. Oh and I also have terrible sleep delayed phase symptom. I have on a high dose of sleep aids every night.

It's been like that for years and now i'm just basically spending all day in bad. Not cause i don't wanna live, but because i feel so sleepy and mentally i feel it's hard to move when i wake up in the morning and it takes hours to get up from bed. I feel like i'm way past the point of looking for help with a psyquiatrist, but i haven't found one and i'm even too tired to go look for one. I don't have the emotional support from my family.

I use a RESMED VPAP ADAPT SV (servo). I don't remember the settings right now but i can post them later. It's not like i haven't done anything for my sleep apnea or help myself. I do sleep with an oral device (and cpap at the same time) that helps a little and i've looked for help here in my country and in the US both. I'm scheduled for MMA surgery later on this year.

So, what should i do at this point (sleeping with cpap for a week with reflux, rhinitis and sleep delayed phase syndrome)?

Thanks for any help and sorry for this depressing post.

John.

User avatar
Pugsy
Posts: 43910
Joined: Thu May 14, 2009 9:31 am
Location: Missouri, USA

Re: Especially for newly diagnosed - Dealing with Change

Post by Pugsy » Thu Jan 29, 2015 1:17 pm

Johnny Bravo wrote:I use a RESMED VPAP ADAPT SV (servo). I don't remember the settings right now but i can post them later. It's not like i haven't done anything for my sleep apnea or help myself. I do sleep with an oral device (and cpap at the same time) that helps a little and i've looked for help here in my country and in the US both. I'm scheduled for MMA surgery later on this year.

So, what should i do at this point (sleeping with cpap for a week with reflux, rhinitis and sleep delayed phase syndrome)?
Welcome to the forum.
This thread where you posted is mainly a read only thread and not much for interaction.
My suggestion is to copy what you posted here and create a new thread of your own so that you can get the attention that you need and your problems won't get lost in this thread.
Please take the time to register and post your equipment in your profile like I have mine.
Your listed machine is a machine designed especially for central sleep apnea and centrals are an entirely different beast to deal with so please don't just give up and not use the machine. Mouth guards and all that don't help with centrals where the airway is open.
Mouth guards do sometimes help with obstructive sleep apnea though.
So if centrals are a problem in your situation....let's try harder to make cpap work for you.
I may have to RISE but I refuse to SHINE.

Guest

Re: Especially for newly diagnosed - Dealing with Change

Post by Guest » Fri Mar 06, 2015 7:44 pm

It's been a couple months on the machine and it's getting worse each night. I wake up about 1-2 hours after falling asleep and usually my mask is off. I struggle with it throughout the night and can never seem to get comfortable so I can get a good nights sleep. I was using a Resmed S8 autoset and had constant rainout which caused dry skin around my nose (Respironics Wisp mask). I've been on my new Airsense 10 the past 2 nights and only got 4 hours usage total. I also bought a Quattro air FF with M and L cushion sizes as well as experimented with a L and XL cushion on my Wisp mask.

JV1967
Posts: 178
Joined: Wed Mar 11, 2015 7:36 am
Location: Northeastern USA

Re: Especially for newly diagnosed - Dealing with Change

Post by JV1967 » Wed Mar 11, 2015 10:14 am

Delilah wrote:Thank you so much for this, I too, thought as soon as I lose weight that thing (Cpap mask) can come off. Big error. I got a great deal from your post and have posted a reply today. Didn't even think about the denial, anger think etcetera. It all starts to make sense now. I know there's a reason for the weight gain, irritability, tiredness and shortness of breath. I guess I have a partner, albeit a mechanical one, in bed with me for life now.
I have recently lost a lot of weight, and I went for my titration study last night; second visit. The lab tech told me that he has seen some with barely any body fat, totally fit people, on all sorts of machines.
AirCurve10 ASV Bilevel, with Humidifier. F&P Simplus FFM. Using Sleepyhead software.

gasin4air

Re: Especially for newly diagnosed - Dealing with Change

Post by gasin4air » Mon Mar 23, 2015 11:57 pm

Hi everyone, I just recently found out that I have sleep apnea and am kinda bummed out. I started researching by checking out cpap websites (reading spec's on machines) and youtube recordings. I see its gonna take a lot of time just to learn a fraction about what sleep apnea does to the body. If there is any information of certain sites to check out, please let me know. I did find out by watching youtube that you some cpap's can be adjusted and you may need to make those adjustments to be able to sleep a full nite. I guess that comes with time.

User avatar
runnerpaul
Posts: 3
Joined: Tue Apr 07, 2015 9:03 am
Location: Shelby Township Michigan

Re: Especially for newly diagnosed - Dealing with Change

Post by runnerpaul » Thu Apr 09, 2015 10:28 am

Great article thanks for writing and posting it.

_________________
MachineMask

<Marine>>Mom
Posts: 7
Joined: Wed Apr 15, 2015 1:38 pm

Re: Especially for newly diagnosed - Dealing with Change

Post by <Marine>>Mom » Wed Apr 29, 2015 1:24 am

I wanted to share one thought. I have been a type one diabetic since age 13. I am now 57. I was diagnosed with sleep apnea in May 2014. To me, with my lifelong health issues, this is just another issue. I can choose to either manage it or ignore it at my own peril. I think living with a chronic disease for years made it easier to adjust to the mask ( and the diagnoses). I was not happy to have a new issue but there are far worse issues than sleep apena. My goal is to die with both my kidneys, my eyes and my feet. Those are big goals for a type one diabetic. The only way I will get there is to be in charge of my issues. I look at sleep apnea the same way. I manage it not the other way around. My two grandsons, ages 8 and 6 love my cpap. When I visit they wake me by taking off the hose and blowing it at each other. I have to admit it is fun.

My spouse has been very supportive. His wife sleeps with an insulin pump attached to my shirt and a sleep mask on my face. He told me no more equipment.

Do I sound to blunt? I do not mean to criticize anyone who finds the mask difficult. it is difficult. It took a month before I could sleep through the night without pulling it off and dropping it on the floor. Now I sleep well but have a new problem which I will find the right forum to discuss. This site is wonderful. It is good to read from other people and learn from their experiences. Good luck to everyone who is still adjusting.

_________________
Mask: Wisp Nasal CPAP Mask with Headgear - Fit Pack
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Can't wear the silicone anymore. Skin is tortured. Have to find a mask I can wear.
Gish
Marines. If you don't understand them I can't explain it.

mattymcmatt

Re: Especially for newly diagnosed - Dealing with Change

Post by mattymcmatt » Wed Jul 29, 2015 7:23 pm

Hi all, I just got my first sleep study done, after my own spouse telling me for YEARS that I had a problem. She even stopped sleeping in the same room... but only now have I done my initial consult and first study.. which showed, yep, I have a problem. So they are going to do a second study using the CPAP thing, which I'm not crazy about...
If I may, let me share a video I made of my first experience... I'll do another of the second study, using the CPAP. They were pretty cool about me filming the first one, very nice lady. Here's the link, check it out if you want: on YouTube it's called, My Sleep Study: what to expect at sleep apnea test
Both my folks have sleep problems, too... guess maybe it actually is genetic, I don't know. I'm not overweight (too much) but I do have a noticeable 'double chin' that may be impacting my sleep. Having said that, per my wife I had the issue long before I gained the weight I'm currently carrying... so heck, I don't know.