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General Discussion on any topic relating to CPAP and/or Sleep Apnea.
digga188
 
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Re: Especially for newly diagnosed - Dealing with Change

Postby digga188 on 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

Postby digga188 on 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

Postby juggernaught on 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

Postby idamtnboy on 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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Machine: S9 AutoSet™ CPAP Machine
Mask: Swift™ LT 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

BRPTsleeptech
 
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Re: Especially for newly diagnosed - Dealing with Change

Postby BRPTsleeptech on 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

Postby BRPTsleeptech on 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

Postby stanley_white on 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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Machine: ICON Auto CPAP Machine with Built-In Heated Humidifier and ThermoSmart Heated Hose
Mask: FlexiFit HC431 Full Face CPAP Mask with Headgear
Additional Comments: Therapy for Mild Positional Sleep Apnea began May 2012. I have experience with my current mask listed above and Quattro FX.

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idamtnboy
 
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Re: Especially for newly diagnosed - Dealing with Change

Postby idamtnboy on 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.

_________________
Machine: S9 AutoSet™ CPAP Machine
Mask: Swift™ LT 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

gloria therese
 

Re: Especially for newly diagnosed - Dealing with Change

Postby gloria therese on 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

Postby Pachyderm's Nose on 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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Machine: S9 AutoSet™ CPAP Machine
Mask: OptiLife Nasal Pillow CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Swift FX back-up mask
Ellie Mae, sweetest cocker spaniel ever!
Please have your equipment shown as text, it's much easier to tell what model you are using!

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magnolia85
 
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Re: Especially for newly diagnosed - Dealing with Change

Postby magnolia85 on 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

Postby 2kittymom on 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

Reenee
 

Re: Especially for newly diagnosed - Dealing with Change

Postby Reenee on Fri Sep 21, 2012 8:49 pm

Thank you for this lovely entry. It was beautiful, and well said. What I would like to know is does anyone ever question this? Does anyone ever wonder why so many people on Craigs list are selling their Cpap machines? Does anyone else ever question who is making all the money out of scaring everyone to death stating that if they did not use this machine they were going to have a heart attack or stroke? I have been struggling with this mess since April. I loved the references to Elizabeth Kubler Ross in your posting, but and this diagnosis is similar to a death, I have read a lot of Ross in the past year and a half since the death of my only son. I was put on anti depressants which I think led to the pushing me over the apnea abyss. Before I was diagnosed I did not think anything would ever bother me again, but this mess has. My mother is 92, and probably has sleep apnea. She is just starting to lose her memory in the past 6 months. She does not have high blood pressure, no heart attacks, no strokes, no cancer, no diabetes, she drove a car till 6 months ago. We are not thin, but not too far over the lowest bmi indicating obesity. (it is pretty low now, have other people checked this?) I have extreme trouble sleeping, wake up about 3 - 5 times each night to use the bathroom, and each time I get back into bed to try to get back to sleep I need to put that stupid cold nasty reptile that blows on my like a rabid cat. It takes forever to get back to sleep, and in the beginning I cried. I thought the promise of cpap was supposed to decrease bathroom trips in the night, (mine has increased since only being able to sleep on my back) help you to lose weight (not hardly despite exercise and low calorie diet) and help with daytime sleepiness and headaches. The only improvement I have found is a reduction in headaches. My ahi is 85. yeah, I know high, severe. You would think that I would be so dang happy now. I am almost as angry as I was when I was diagnosed in April. I have seen a couple of surgeons who both said that my tonsils are not big enough to bother removing. I saw a specialist last Wed who said that the reason why I have such bad sleep apnea is because I had several teeth removed when I was young and my mouth is small I guess and my airways are also small. He also said that after menopause women's throat muscles slack. Do any other women get angry that whenever they refer to women with sleep apnea they depict young pretty women with no mask on peacefully sleeping on a white pillow case?? I also had no diabetes, no high blood pressure, no sign of heart attack or stroke. I actually was so depressed that I resent that they told me that I had this stupid thing and wish that they would have let nature take it 's course. I am also a believer, but if God is our reward for living by his laws, why does everyone want to extend it? The two biggest reasons I use the machine are to not snore, and the idea of having a stroke and surviving does not sound like a good thing. I am sorry this is so cranky. I just can't get enough sleep. I know I sound very depressed, and probably am, but does anyone know of any anti depressants that don't exacerbate sleep apnea?? Or that don't have any side effects? Peace. I am hoping to have someone find the ironies that I have. Maybe some day I will get used to it, but it feels like a life sentence, and that I am being punished. I really hate it.

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

Postby 2kittymom on Sat Sep 22, 2012 10:21 am

Welcome to the forum, Renee. This is a great support source, with many caring people. I'm sure you will get lots of replies. First I'd like to say that you have a lot of painful issues right now. Adding the diagnosis of sleep apnea to it hasn't made it better for you, and you have a lot of anger. I can't imagine the pain of losing your son, and my deepest sympathies are with you. Then, watching the deterioration of your mom on top of that, you have had more than your share of stress.

The reason there are so many CPAP machines for sale, is often due to many people refusing to use them. It is hard to admit that we have a life-changing diagnosis that results in our being tethered to a hose every night, very likely for the rest of our lives. Many people just give up on their therapy. And, many people do have strokes, heart attacks, and other health disasters, due to untreated sleep apnea. Apneas cause a reduction in oxygen to our vital organs, which then causes the breakdown of those organs.

CPAP therapy has only been in existence since 1981. It's invention has saved tons of lives, and added quality to those lives. I am so thankful that I was diagnosed and am being treated. Before the diagnosis, all I knew was that I woke up too many times during the night, and I could "sleep" for 10 hours and still be very tired. Once I woke up suddenly, feeling like I couldn't breathe. That was scary. During my sleep study, my oxygen level went down to 70%. Untreated, I could have had a lot of damage to my vital organs. Once I was diagnosed and realized how bad my apnea was, it wasn't an issue of whether or not I was going to comply with the therapy. I knew that any night without the machine was a night that I was not breathing during a lot of the night. I have used the machine every night since I got it, which is now 65 nights straight. As for the "rabid cat" description of the masks, I tried at least 10 or more before I found my favorite. I now sleep with the Sleepweaver Advanced, which is a cloth mask. It is so lightweight that I hardly know I have it on. I chose the leopard print one. ( Silly, perhaps, but I look at it as adding a bit of style!)

As to your remark about God, and why we want to prolong our meeting him, I will just say that we all have our "jobs" on this earth, and we are to meet him when it's our time to meet Him. And, if all things are from God, and we know that He guides the hands of the physicians, then the CPAP therapy is also from Him.

I know you are depressed, and that you have reasons to be. However, I hope that you will begin to see some blessings around you. A couple of times in my lowest times of my life, I've gone to support groups. They did wonders for me. To be in a group of people who truly have gone through the same issues is a great healer. There are groups for parents who've lost children, and also groups for people who have relatives having memory loss. I encourage you to look for one or more.

Then I encourage you to use positive self-talk. Our thoughts can manifest what we receive. If we tell ourselves that we are unhappy, we will be unhappy. The subconscious mind takes your thoughts as truths. If you find yourself thinking thoughts that are bringing you down, get rid of those thoughts. Think something else. Look for things you can be grateful for, however small or contrite; a beautiful flower, sunrise, sunset, your home, friends, etc. And, lastly, in the words of my dear departed sister; "have something to look forward to." It doesn't have to be something big.

I wish you blessing and comfort in your life and on your journey into CPAP land. Many of us here are so glad we are.

Lori

Reenee
 

Re: Especially for newly diagnosed - Dealing with Change

Postby Reenee on Mon Sep 24, 2012 8:29 am

Thank you Lori,
your response was very thoughtful and thorough. I will take all of your advice, including the positive thoughts. I do try all of these things, but was having a particularly bad day, have just past the 2nd birthday of my son after his passing.

You are right about so many things, and truthfully, I knew all of these things, I go to groups, individual therapy, try to look at positive things, it is just that grief takes so much work. It does not leave you 24/7. Every time I wake it is back

torturing me, and I feel sometimes that the cpap is a torture device. I know sounds kinda crazy, but this is what my mind does. I am taking lots of vitamins and get lots of exercise, go to church, help my mom, volunteer, work in my garden, swim, ride my bike, read, sew, work 30 hrs, cook, clean.

I just wish I did not have the added burden of this. I know that I am not special, I just feel like it is insult to injury. I will keep trying. You are kind to respond. Maybe some day I will find peace. Reenee

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