Especially for newly diagnosed - Dealing with Change

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
2kittymom
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Re: Especially for newly diagnosed - Dealing with Change

Post by 2kittymom » Sat Jul 28, 2012 7:24 am

What has helped me adjust the most is listening to a relaxation app when I go to bed. I have it on my smart phone, and if I'm not relaxed enough when it's done, I just keep replaying it. It really takes my mind off of the mask and machine. I too was diagnosed with severe sleep apnea, and I know that it's not a choice of whether or not to use the machine. I've been on it now for 11 nights - some nights are better than others. I knew from the first morning after using it that it made a big difference; I wasn't yawning continuously.
Lori

taylor12
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Re: Especially for newly diagnosed - Dealing with Change

Post by taylor12 » Wed Aug 08, 2012 1:30 am

This was wonderful on your part to share this online. Really liked it very much and also got little serious while reading it. Would love to see more like this in near future.

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Roch369
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Re: Especially for newly diagnosed - Dealing with Change

Post by Roch369 » Thu Aug 09, 2012 8:54 am

2kittymom - what app do you have on your phone?

digga188
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Re: Especially for newly diagnosed - Dealing with Change

Post by digga188 » Wed Aug 15, 2012 9:47 pm

Hi All
From sydney Aust. I was diagnosed with OSA aboiut one month ago and have been on a trial machine for the last two eeks. It has help me out not sure what to expect or hat questions to ask

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digga188
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Re: Especially for newly diagnosed - Dealing with Change

Post by digga188 » Thu Aug 16, 2012 10:57 pm

Hi All
Got my new machine last night and have started on it. i was using a F&P Icon Auto before the Resmed S9 is a little different. Ahs anyone had a whistle sound on exhaling is it the machine or is there something wrong with mine.

Thanks
Digga188

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juggernaught
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Re: Especially for newly diagnosed - Dealing with Change

Post by juggernaught » Fri Aug 17, 2012 6:59 pm

All hello, I am literally at the end of my hose. I weigh 180 lbs and have no ENT issues. I have a System One RemStar Auto with A-Flex (560P). This little machine is awsome. ThE biggest problem I have had is that I cannot sleep with it on for moer than average an 1hr and 16 minutes. My wife says I rip it off in my sleep. When I wake in the morning I have no recollection of having taken the mask off. I started out with nasal pillows. I figured that was a problem so I asked for a nasal mask same issues just harder to get off. I have sleepyhead soft ware but as I have read it dosent work with my machine. I have copy of the old phillips software but I don't have an old enough operating system to use it. It should not take months to "get used to the machine" I have tried every setting on this machine I currently use it with out the humidifier.........Heeeeeeeellp

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idamtnboy
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Re: Especially for newly diagnosed - Dealing with Change

Post by idamtnboy » Fri Aug 17, 2012 8:54 pm

juggernaught wrote:All hello, I am literally at the end of my hose. I weigh 180 lbs and have no ENT issues. I have a System One RemStar Auto with A-Flex (560P). This little machine is awsome. ThE biggest problem I have had is that I cannot sleep with it on for moer than average an 1hr and 16 minutes. My wife says I rip it off in my sleep. When I wake in the morning I have no recollection of having taken the mask off. I started out with nasal pillows. I figured that was a problem so I asked for a nasal mask same issues just harder to get off. I have sleepyhead soft ware but as I have read it dosent work with my machine. I have copy of the old phillips software but I don't have an old enough operating system to use it. It should not take months to "get used to the machine" I have tried every setting on this machine I currently use it with out the humidifier.........Heeeeeeeellp
I suggest you repost this issue as a new topic. That way it will attract a lot more attention by folks who can provide you with some help. Posting an issue in a topic that is not directly connected can cause the post to get lost.

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BRPTsleeptech
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Re: Especially for newly diagnosed - Dealing with Change

Post by BRPTsleeptech » Sat Aug 18, 2012 3:09 am

streamteamer wrote:Thank you for the paper on accepting change. Yap, I was upset that I had to go on CPAP. My husband had UPPP back in 1997. It didn't work and it made his apnea worse from moderatly severe to severe. I saw what he had to go through... But I also saw how it helped him. Before I even went in for my second sleep study -titration study I had accepted that this would be what I would have to do. I even looked forward to getting my machine. I brought it home, set it up and took a nap right away...And felt a positive difference.


When patients come in accepting that this is the best course of action it makes it easier for a sleep tech. First patients who have accepted it are a little more helpful when doing a mask fitting, which allows the tech to hopefully pick a mask that fits the patient and how they sleep. Oh yes, I did say how you sleep because it isn't all about just the face are you mover and a shaker or do you sleep on your stomach normally, except at the sleep lab you know we won't let you do that sorry for that. All these make a difference on you mask. Always remember your not stuck with the mask you wore at the lab either if after that first night you didn't like it, talk to the tech in the morning tell them what you like (or what was most comfortable) about the mask and what bothered you. They can put it in there notes so when the DME company comes out they can have an idea of maybe some other mask that could address that problem. There are lots of different mask out there they are all different for a reason, I don't think everyone looks are sleeps the same. Best fit for the the person.

Sorry, to hear your husbands UPPP didn't work, as a sleep tech, I hear a lot of well aren't there surgery options, there are but what isn't said is recovery is awful, they work a small percentage of the time, and usually only a temporary fix it the surgery does work. CPAP (or some variation) is the only 100 percent effect

BRPTsleeptech
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Re: Especially for newly diagnosed - Dealing with Change

Post by BRPTsleeptech » Sat Aug 18, 2012 3:26 am

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
Idamtnboy,

Do you mind if I share this with some of my patients, as a sleep tech we try and sooth all the fears about CPAP and help as much as possible but most of the time you only see us once, twice if you get lucky and have the same tech that did you initial study. The more accepting the easier it is for us to help.

An example I had a lady come in for a Split night, which is a PSG and CPAP in one night, it reserved for severer patients, so no everyone you can just do it all at once. Like with a CPAP study I go in with my 4 trusty mask, one of each kind and usually an extra one that I think the patient might like. I make the patient try them all on under pressure and laying down and I even make them turn in their normal sleep position. Well I asked her to rate them all in from favorite to least, She they are all the same, I don't like any of them. She had accepted this was going to be part of her life from now on, which as a tech just makes it hard because most of us care a lot, and realize these mask save lives so we want the right mask for you and when the person doesn't help we can't do that.

stanley_white
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Re: Especially for newly diagnosed - Dealing with Change

Post by stanley_white » Sat Aug 18, 2012 5:31 am

Greetings all.

I have mild positional sleep apnea and began therapy in May of 2012.

Therapy has truly been a life changing event. My sleep has improved, I am more awake and alert, I have decreased appetite (less coffee and junk food to keep me awake), and best of all no PTSD-style nightmares anymore -- my brain was using combat deployment memories to wake me up when I stopped breathing -- not so fun.

Thank you so much for everyone who posts here. The information on this website helps us new folks more than you know.

-Stan

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idamtnboy
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Re: Especially for newly diagnosed - Dealing with Change

Post by idamtnboy » Sat Aug 18, 2012 6:21 pm

BRPTsleeptech wrote:
Idamtnboy,

Do you mind if I share this with some of my patients, as a sleep tech we try and sooth all the fears about CPAP and help as much as possible but most of the time you only see us once, twice if you get lucky and have the same tech that did you initial study. The more accepting the easier it is for us to help.
If you believe the article will help a particular patient, then you have my blessings to share it.

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Additional Comments: Hose management - rubber band tied to casement window crank handle! Hey, it works! S/W is 3.13, not 3.7

gloria therese

Re: Especially for newly diagnosed - Dealing with Change

Post by gloria therese » Mon Aug 20, 2012 6:35 am

I am newly diagnosed with apnea and getting used to the machine, this was the third night. I've slept through two nights 8 hours with success and comfort. I have some questions on the sleep report on the s9 elite machine. What does SW, bid, sid, rid, and hd mean? I see no report of ahi or the other apnea indexes.

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Pachyderm's Nose
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Re: Especially for newly diagnosed - Dealing with Change

Post by Pachyderm's Nose » Mon Aug 27, 2012 10:44 am

I got to cpap through the emergency room. Went in for what I thought was a heart attack angiogram found no blockage and I was diagnosed with pericarditis and a malformed heart valve that needs to be watched. At follow up appointment with my cardiologist my wife mentioned I was tired all the time(never occurred to me to mention it, you just live with it) so wore a recording oximeter one night and discovered osat levels @ 80% for 3+hours and lows of 69%. Was scheduled for sleep study the next Monday. I slept about 3 hours and was diagnosed with severe sleep apnea. Returned Wednesday for the titration and barely slept. I picked up my cpap the next Monday and have completed my first week with it. Averaging 8.3 hours a night. I downloaded the ResScan software from their site right away so I can be aware of what is happening. My S9Auto is set at 12 and ramps up in 15 minutes.
The data I've downloaded shows obstructive apneas at 0.0, central apneas at 3.4, and hypopneas at 0.1
I'm still a little groggy but really glad I had my wife at that appointment. Life is much better with cpap (and sleep)!

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magnolia85
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Re: Especially for newly diagnosed - Dealing with Change

Post by magnolia85 » Fri Aug 31, 2012 11:36 pm

Just found this looking through some old threads...Im a month in and this is very good advice. Thanks OzJi

ozij wrote:A mental block, just like any other block, can be taken apart brick by brick.
  • Hold the mask in your hand.
    1. Promise yourself you are not going to try to put it on
    2. Look at the mask carefully, from all sides
    3. While looking at the mask, concetrate on one thing: This thing that I'm holding in my hand can help my breathing.
    4. Put the mask back where it belongs.
    5. Do something you enjoy.
    6. Repeat.
      Do not attempt to put the mask on.
  • Tell yourself: I choke at night - that's a very frightening thing. As a result I'm wary of having anything the may obstruct my breathing. But this mask, when I learn to trust it, will help me breathe
    The primitive part of your brain, the one that wakes you up to keep you from choking, is your friend - and it's terrified of the mask. When you try to force yourself to use the mask, the more primitive part doesn't understand what you're doing, and rings enough alarm bells to keep you from what it assumes is grave danger.
    The more developed part of your brain - the one that sends you our forum - has to befriend the frightened part, and convince it, slowly, gently, firmly, that its terror is understood and accepted, and you're trying to solve the problem.
  • Every time you hear the clamor of "I can't" tell your terrorized part that choking at night is terrifying, and you are very grateful to it for waking you up. Tell it you have not intention of furthering the choking. And do it in a way that will convince it you mean well. Don't get angry, don't try to use force - your terrorized, traumatized choking part has to realize that your thinking brain hears the panic and is trying to help.
  • Once you (all of you) begins to believe the mask may help - ask your frightened part if you may try the mask on while you'r awake, and not in the bedroom.
    1. Promise you will remove the mask the minute it feels upseting.
    2. If all you can do is place it near your face, that's fine too. - your aim it to let your frightened part experience the fact that there is no danger in the mask.
    3. Do not use force, do not ignore the fear - your are trying to create trust - not to beat down a part of your brain that serves to save your life by responding to danger..
    4. Ask the frightened part if you may take another step in placing the mask closer to your face.
      Your aim is to get to a point where you can eventually have the mask on your face it, strapped - secure in the knowledge that this will help.
    5. Use the mask for a while while watching TV - of reading, or relaxing.
This may take a few days - more. Patience is crucial. Remember, your more advanced brain it trying to gain the trust of your more primitive brain -- and has to behave in a trustworthy way.

Once you've spent some time awake with the mask, and no longer fear choking, try it with the machine running, in the living room, not in bed. Try it in bed only when you feel comfortable.

Turn off the CFlex on your machine! For some people, it cause breathing disruption and a sense of suffocation.
Start out at the lowest pressure you can tolerate without feeling choking, and raise it gradually.

2kittymom
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Re: Especially for newly diagnosed - Dealing with Change

Post by 2kittymom » Sat Sep 01, 2012 10:29 am

Roch369 wrote:2kittymom - what app do you have on your phone?
I'm so sorry I didn't see your question until today. If someone on this forum knows if there's a way to get notified when someone responds to your post, please let me know. I belong to another forum (not sleep apnea) that sends me an email link when someone responds to a post I make, or to a post I've commented on. If this one does that, I haven't found out how yet.

I really hope by this time that things have turned around for you and that you are adjusting well to CPAP. The iphone app you asked about is called "Sleep Deeply," by Darren Marks. I also downloaded (first) his app for relaxation. They are nearly identical, except the relaxation one tells you to exhale through your mouth - which we obviously can't do, unless we're in a full face mask. I needed these apps continuously when I began my therapy; played them over and over. Now after a month behind me, I'm back to listening to Coast to Coast, which I've listened to forever. I rarely even hear a half hour of the show, as it puts me to sleep! If I wake up, I just listen to a little more. I have a subscription to it, which breaks it into segments of about 43 minutes each. When a segment finishes, it shuts off. Fortunately or unfortunately, this is my "crutch." Works for me.
Lori