Especially for newly diagnosed - Dealing with Change

[Violet West]

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.

[vader06]

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.

[Fireblade69]

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!

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.

[Bobbo]

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...

[Omne]

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.

[tlohse]

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.

[0dodo]

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

Thank you so much for this beautiful writing!
It is so true, and let me tell you that I know what you’re talking about.
I went thru a lot these past 15 years…the lost of my father, my husband, my job after almost 10 years, new job, been diagnosed with severe osteoarthritis and now, severe sleep apnea, so...
Also, yes, we are going thru all these phases and yes, it's very, very hard sometimes. But, also we get thru it if we WANT to, that is also very important I think.
I’m starting with the CPAP soon; I know that I will probably go thru rough times, but I will do everything to make it work because I WANT to fell better But also, I hope that it's going to be OK

[AmyR]

I don't consider the diagnosis to be earth-shattering. It is something I didn't know was wrong with me and now I have a treatment for it. It was a surprise because my husband has severe apnea he has been reluctant to get help for. So I did the test hoping for some help with my insomnia and ended up being the test case for CPAP in our family. I wish it was going smoother because I know my husband probably sees what I am coping with and might not be encouraged to do his sleep test in January (not enough doctors doing it in our area.) Hopefully, as I sleep better he will be encouraged to at least to the 30-day trial on one. It's important to get the cleaning and other routines down quickly so that working with the machine is less of an issue and things go smoothly.

[Tdiguy]

My wife was very sceptical at first about cpap and honestly thought me going back into the bedroom even with the machine would likely mean her moving out to the couch to sleep.
I can gladly report she was wrong on this one. Not only does the machine not make enough noise to bother her but when i am using it I make virtually no noise. I also sleep FAR more soundly so when she tosses and turns i stay fast asleep oblivious to her movement.

Although now knowing what i know about sleep disorders and after listening to her sleeping i am trying to talk her into getting checked out also. She never seems to feel rested after sleeping and wakes up multiple times per night, much like i used to. Her snoring is just less audable where i used to nearly shake books off the shelf.

[KRissyclarkmckee]

I hate hate HATE my husband's CPAP machine! The noise of it keeps me awake far more than the noise of his intermittent snoring ever did. He has been fitted for several different masks, has had them adjusted, but at some point during the night, the noise ALWAYS wakes me up. Although the air is supposed to go out of a vent on the top of his head, whenever he tucks his chin down while sleeping on his side, it blows on me and, you guessed it, wakes me up. I used to sleep snuggled up next to my husband, and we had a pretty good sex life. Now, it is virtually nonexistent. Because of the tube and the noise and the air, I sleep at the very opposite end of our king sized bed. As of last night, I have started sleeping in a different room. His sleep Doctor, who sells these machines by the way, won't even explore any options which may be available and implies to my husband that I am being silly. I wish I had NEVER suggested he go see a sleep specialist!

[HoseCrusher]

Krissy, every tried ball room dancing with your husband?

When he steps on your toes you are just a little out of sync. A little practice will help smooth things out.

The mechanics of the xPAP mask is that it has to vent in order to avoid build up of CO2. With some practice and some ingenuity you and your husband can "dance" with the mask in a way that avoids having the air blow on you. Think of it as learning a new dance step. It will take effort and practice but before long you will be back in sync with each other while you sleep.

Then sex will follow...

[Tdobyns]

Hi there. Thanks for the post. I am having trouble pulling up your "Dealing with Change" write-up. Is there another way you can post it so it is more easily accessible? Thank you.

[idamtnboy]

Hi there. Thanks for the post. I am having trouble pulling up your "Dealing with Change" write-up. Is there another way you can post it so it is more easily accessible? Thank you.

What kind of problem are you having? The linked page to the storage folder should open up with a button that says Download File. Click on that and it should download or open up for you.

[Apneanoob]

The problem with downloading your writeup is that it just shows 1 page...

[idamtnboy]

The problem with downloading your writeup is that it just shows 1 page...

I don't know what to say. When I click on the download button the complete document comes down.