Especially for newly diagnosed - Dealing with Change

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
I Walk With You

Re: Especially for newly diagnosed - Dealing with Change

Post by I Walk With You » Thu Feb 04, 2016 2:21 am

I found out today I have severe sleep apnea and will have to go on the machine for the rest of my life. Actually reading through the forum made me feel a little worse. I am sleep walking through life, can't hold a job, suffering from PTSD from a shooting I was injured in 2 years ago. I am never rested and have insomnia. I went from an athletic 220 pounds to my present weight of 258. I put on 8 pounds in the last two weeks. Never have energy. Not really much of a life. I've decided tonight--not asleep of course after taking two sleeping pills-to give myself a year. I can't stand the mask, have restless legs, PTSD and feel claustrophobic with the mask. I have to wear the full face one.
I'm going to give it a year and if my quality of life hasn't improved I'm going to opt out. Guess I wanted to write it down to reaffirm it.

AuctionGuy
Posts: 1
Joined: Thu Jan 28, 2016 6:57 am

Re: Especially for newly diagnosed - Dealing with Change

Post by AuctionGuy » Thu Feb 04, 2016 6:33 am

Dear I Walk With You,

Do NOT give up.

There are many more Positive things in these forums than Negative.

I'm no expert on this CPAP stuff, I just started a couple of weeks ago. There are tons of people that have been at it for a long time, and will help you thru things. I've found many things in these forums to keep my hopeful that CPAP can someday become a useful, normal way of life for me.

Please, Please start a new forum (rather than stuck at the bottom of this older one), and ask your questions, or say what your problems (like feel claustrophobic) are, and you WILL get responses.

Also update your profile with your machine, mask, pressures - the stuff the gurus want/need to know to help.

- Jeff

User avatar
cancun
Posts: 325
Joined: Sat Apr 25, 2015 7:28 pm
Location: Martinsburg WV

Re: Especially for newly diagnosed - Dealing with Change

Post by cancun » Mon Feb 08, 2016 1:23 am

I Walk With You wrote:I found out today I have severe sleep apnea and will have to go on the machine for the rest of my life. Actually reading through the forum made me feel a little worse. I am sleep walking through life, can't hold a job, suffering from PTSD from a shooting I was injured in 2 years ago. I am never rested and have insomnia. I went from an athletic 220 pounds to my present weight of 258. I put on 8 pounds in the last two weeks. Never have energy. Not really much of a life. I've decided tonight--not asleep of course after taking two sleeping pills-to give myself a year. I can't stand the mask, have restless legs, PTSD and feel claustrophobic with the mask. I have to wear the full face one.
I'm going to give it a year and if my quality of life hasn't improved I'm going to opt out. Guess I wanted to write it down to reaffirm it.


You have come to the right place to find support, pretty much all of us will be on the CPAP for the rest of our lives, sorry that reading made you feel worse, try reading the success stories to give you a little more positive feed back. It can take some time once you get your machine but you can feel rested and there are a lot of people on this forum that can help you thru it and have a lot of knowledge as they are going thru the same thing and have for a long time. Is there a specific reason you have to wear the full face mask? Some of the full face masks really aren't as claustrophobic as you might think. You might have to thru a few masks before you find the one that is right for you.

If you could re post this under Post a New Topic at the top of the forum you will get a lot more responses as this area is more informative than interactive.
Hang in there, the help is here.

_________________
Machine: AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: AirFit™ F10 Full Face Mask with Headgear
Additional Comments: FlexiFit HC431 FFM with Headgear

User avatar
Becky at RemZzzs
Posts: 40
Joined: Wed Jun 20, 2012 3:15 pm
Location: Jackson, MI
Contact:

Re: Especially for newly diagnosed - Dealing with Change

Post by Becky at RemZzzs » Fri Feb 12, 2016 10:55 am

Hey everyone, I work at RemZzzs and we offer a totally FREE sample of our CPAP Mask Liners. The liners help with irritation, pressure marks and leaking. Just pm and I can send you a free sample! :D
Becky Bennett
RemZzzs Personal Customer Care Rep & Social Media Consultant
Naturs Design, Inc - the makers of RemZzzs

RemZzzs... Let yourself dream again
Prouldy Made in the USA

User avatar
K5MOW
Posts: 73
Joined: Mon Oct 04, 2010 9:50 am
Location: Friendswood TX
Contact:

Re: Especially for newly diagnosed - Dealing with Change

Post by K5MOW » Fri Feb 12, 2016 11:10 am

Becky at RemZzzs wrote:Hey everyone, I work at RemZzzs and we offer a totally FREE sample of our CPAP Mask Liners. The liners help with irritation, pressure marks and leaking. Just pm and I can send you a free sample! :D


I sent you a PM

Roger
Moderate to Severe Sleep Apnea

Airsense 10 Autoset

Mirage Quattro Full Face Mask

Roger

Snoopchic

Re: Especially for newly diagnosed - Dealing with Change

Post by Snoopchic » Sat Feb 27, 2016 2:42 pm

I have tried several times to open this, but it won't open? How do I read it!?!

User avatar
idamtnboy
Posts: 2201
Joined: Mon Nov 01, 2010 2:12 pm
Location: Idaho

Re: Especially for newly diagnosed - Dealing with Change

Post by idamtnboy » Tue Mar 01, 2016 8:28 pm

Snoopchic wrote:I have tried several times to open this, but it won't open? How do I read it!?!

It works when I checked it just now. What kind of error are you getting? It's an ordinary PDF file. When you click on the link it gives you the option to download. When you click on that it should download and open up in Adobe Reader.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Hose management - rubber band tied to casement window crank handle! Hey, it works! S/W is 3.13, not 3.7

nvanderhoeven
Posts: 8
Joined: Sun Mar 13, 2016 4:44 pm

Re: Especially for newly diagnosed - Dealing with Change

Post by nvanderhoeven » Mon Mar 14, 2016 12:50 am

My story is a little different, because I don't have sleep apnea. My husband does. However I'm finding it really hard to deal with, whereas my husband seems pretty matter-of-fact about it and is more relieved at the prospect of better sleep.

The reason I'm finding this so difficult to digest is that my father died a few years ago from complications caused by sleep apnea. We had known for decades that he had sleep apnea, but none of us really realised how dangerous it could be. I lost a younger brother to a car accident that happened when my father fell asleep at the wheel despite having had 7 hours of sleep the night before. I'm putting this, and little things like seeing him fall asleep over dinner while growing up, together, and realising just how much of our entire family's lives have been negatively affected by sleep apnea.

When Dad died a few years ago, I became hypervigilant and told my husband I had seen him stop breathing in his sleep, too. He said that I was just imagining things because of my dad, and I believed him because I WAS extremely emotional at the time. Four years and a confirmed diagnosis of sleep apnea later and I'm kicking myself for not pushing to get my husband checked earlier. I'm afraid that I'll lose a third family member to this disease, and I can't help but think about the damage that has already been caused. Who knows how long he has been suffering from sleep apnea? It could have been decades, too.

I'm also frustrated because while I'm devouring all the information I can find, I have to push and prod my husband to do anything. He says he is committed to making the CPAP work, and to be fair to him I think he's doing what he can, but every time he removes the mask now because it's uncomfortable, I lie awake listening to him breathe. My quality of sleep has never been worse. I lie next to him thinking of settings I could tweak that might allow him to wear the mask longer, and there are a LOT of settings. I feel like I have sleep apnea too from how little I sleep.

Thanks for listening.
Machine: ResMed Air Sense 10 Autoset
Mask: ResMed AirFit P10 Nasal Pillow
Settings: Auto, 6-20 cmH20, auto temperature and humidity.
Diagnosed: March 10th, 2016

peridotjude
Posts: 4
Joined: Wed Mar 30, 2016 2:58 pm

Re: Especially for newly diagnosed - Dealing with Change

Post by peridotjude » Wed Mar 30, 2016 3:05 pm

nvanderhoeven wrote:My story is a little different, because I don't have sleep apnea. My husband does............ I lie awake listening to him breathe. My quality of sleep has never been worse. I lie next to him thinking of settings I could tweak that might allow him to wear the mask longer, and there are a LOT of settings. I feel like I have sleep apnea too from how little I sleep. Thanks for listening.



My advice is only from a long-married and 60-something perspective; I am in no way a medical person. IMO you need to take care of yourself and let your husband be a grown up and take care of HIMself. I'm not telling you that you're wrong for caring about him, only that you need to be careful not to go down the tubes with him! This is true for all caregivers everywhere; they have to take care of themselves first, otherwise they'll have nothing to give to the ones they are trying to care for. So. I guess I'd start in two places-- first, I'd find a talk therapist I could be honest with, someone to listen and act as a sounding board. And second (and maybe this should be #1, actually), separate bedrooms; that lying awake listening to him not breathe is for the birds!! And serves nothing useful. Good luck.

Violet West
Posts: 96
Joined: Mon Mar 28, 2016 1:52 pm
Location: Tex-Mex-NM

Re: Especially for newly diagnosed - Dealing with Change

Post by Violet West » Tue Apr 19, 2016 12:24 pm

I like this "dealing with change" idea. Change can be hard, but ultimately rewarding.

My biggest "dealing with change" annoyance is that I resent having to do a nighttime "routine." Always before when I was ready for bed, I just --- went to bed. Now, I have to top off my humidifier reservoir; wipe down my nasal pillows; take out my medications; take my medications; use some type of nasal irrigation (neti pot, saline spray, or Dymista). Doesn't sound like a lot, but it's a lot more than I did before -- never even washed my face before bedtime.

So, I'm irritated and resentful. But . . . I suppose that's the least of my worries.

User avatar
vader06
Posts: 17
Joined: Mon Mar 28, 2016 8:14 am
Location: Grand Rapids, MI

Re: Especially for newly diagnosed - Dealing with Change

Post by vader06 » Mon May 02, 2016 1:02 pm

I was just diagnosed with Sleep Apnea just last Friday. Now I am waiting to get my CPAP machine. I have always struggled with change always and that article was a great read that will help me out. Thank you.

_________________
MachineMask
"I can breathe!!!"

Fireblade69
Posts: 1
Joined: Sat May 21, 2016 3:34 am
Location: DUBAI, UNITED ARAB EMIRATES

Re: Especially for newly diagnosed - Dealing with Change

Post by Fireblade69 » Sat May 21, 2016 4:02 am

Hello all.

I have been struggling for a while and was diagnosed with high blood pressure, bronchitis, pneumonia and acid reflux to name a few and to top it off I could sleep almost anywhere (with the exception of when I'm driving). There didn't seem to be any progress but my internal medicine doctor sent me to a specialist after I had a CT scan to seek further assistance.

The doctor took one look at me and said... "You are not being treated for the underlying problem which I'm certain is sleep apnea and this is leading to your problems". Like many I'm sure, I had never heard of sleep apnea and had no idea what it was all about so my wife and I started to trawl the internet in the search of more information. In the meantime, however, a sleep study was carried out and yes, it confirmed that I was experiencing central apneas, obstructive apneas, mixed and hypopnea with the longest event lasting 60 seconds. Worse still the report identified that I was snoring for 41% of the duration, which confirmed my wife's worst nightmare. She'd been telling me for years but I told her it was in her head! :D

The specialist told me that I need a Dreamstation Auto BIPAP with humidifier which is going to set me back about AED 11,500 and I'm awaiting for this to be provided early next week but there are very limited options to distributors in the UAE, i.e. one! I've looked online and although there are a number of suppliers in the US, they do not ship to UAE because of licensing agreements and lack of what would be considered an acceptable prescription.

Having read other posts, there seems to be a light at the end of the tunnel and hopefully this new machine will give me a new lease of life.

User avatar
Bobbo
Posts: 1
Joined: Mon May 23, 2016 5:18 pm

Re: Especially for newly diagnosed - Dealing with Change

Post by Bobbo » Tue May 24, 2016 2:35 pm

Hi!

New guy here. After months & months of tests and consultations, I finally was approved for a CPAP.

Started using it last Thursday.

I guess, after being on it for a few days, I thought, based on the doctors and the CPAP people, that I would be feeling great. I was always fatigued and would eat 24/7 for energy.

Now, I honestly think I'm more tired now than I was before. Nothing else has really changed. Was I expecting too much too soon? I'm trying to be optimistic, but I dunno...

User avatar
Omne
Posts: 213
Joined: Wed Jun 01, 2016 11:11 am

Re: Especially for newly diagnosed - Dealing with Change

Post by Omne » Fri Jun 24, 2016 12:17 pm

Hi,

I was recently diagnosed, a month ago, with apnea. I have had chronic insomnia for over 20 years and use meds to sleep. I went in for a sleep study because my wife mentioned that I had periodic leg movement, every 30 seconds..she timed it. I'm not in any of the risk categories for apnea and my wife has never noticed any breathing problems. I have had fatigue problems for a fairly long time and I thought it might be the leg movement so I went in for the study and, with my meds, went right to sleep. Around 1:30am I awoke to the tech strapping a mask on me. I asked her why she was doing that and she said that I was having apnea events and my blood oxygen level was at 80%. Needless to say I was rather surprised. The next morning she told me that I was having leg movements but they were only at the beginning of the night and didn't cause any sleep interruptions for me.

So, go in for one thing and get diagnosed for something else. I got my Dreamstation APAP with the humidifier and a Wisp mask the next week. In the study the AHI was only around 10 but I think the time they lasted was fairly long. Of course I was expecting miracles and that I would be nice and alert right away. I was promptly disabused of that idea. They had a fixed pressure set and my AHI shot up to 20 or so the first few nights and I felt more fatigued than usual, almost groggy during the day. I also noticed that my throat was dry each morning so after about a week I picked up a full face mask, an Air 10, and they also set the machine to auto mode. The pressure is averaging just under twice what they initially set it for and the AHI numbers dropped pretty quickly and are running around 6-8 lately. Hopefully they will continue to improve. I use Sleepyhead and check my card every morning. My major problem is with hypopneas although CA has actually gone up a few percent. I have noticed less fatigue so that's a plus.

My reaction to the change is probably atypical. I was surprised, not in shock, just surprised. I also felt relieved because it answered some questions and gave me some hope that the fatigue and morning headaches would get better. The mask has never bothered me and for some odd reason I actually find it sort of comforting. Maybe because I scuba dive or because I have congestion problems at night I like the air flow and positive pressure. When I put the mask on it's almost like curling up in a blanket. I guessing that the fact that I like to wear the mask puts me in a minority based on what I've read on here and other forums. It does make the whole thing a lot easier though... :)

So I apparently went pretty much straight to acceptance. Luckily my wife isn't bothered at all by the equipment, there's very little noise.

I'm glad there are active forums available and I've gathered a lot of useful info on this one. I'm looking forward to being part of it.

_________________
Machine: DreamStation Auto CPAP Machine
Mask: AirFit™ F10 Full Face Mask with Headgear
Humidifier: DreamStation Heated Humidifier
Additional Comments: Also a PR System One Remstar 60 Series BiPap autoSV Advanced and an Airsense 10 Autoset

tlohse
Posts: 89
Joined: Fri Jun 27, 2014 5:32 pm
Location: West Bend, Wisconsin
Contact:

Re: Especially for newly diagnosed - Dealing with Change

Post by tlohse » Sun Jul 03, 2016 10:25 pm

This is a awesome article. I for one never copped with change. I just accepted my sleep apnea and cpap and do what I have to do to make this thing work.

_________________
Mask: Mirage™ FX Nasal CPAP Mask with Headgear
Humidifier: PR System One 50 Series Heated Humidifier
Additional Comments: First became a cpapper June 11, 2013 pressure setting 10cmH20. DX: Severe Sleep Apnea with Hypersomnia. REF# 450P
Thomas Lohse
Cpap is 4 ever.