Especially for newly diagnosed - Dealing with Change

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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idamtnboy
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Location: Idaho

Re: Especially for newly diagnosed - Dealing with Change

Post by idamtnboy » Sat Apr 14, 2012 10:03 pm

Thank you to everyone who has commented during the past several months. It is gratifying to learn that my discussion is helpful and encouraging to so many of you. I wish all of you the best in your therapy.

_________________
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

Aaron Taylor Sleeps

Re: Especially for newly diagnosed - Dealing with Change

Post by Aaron Taylor Sleeps » Thu Apr 19, 2012 9:07 pm

If a significant person truly cares for you then, they would want to make sure you do not sleep a night without your therapy. A healthy life, with a healthy heart gives strength to a healthy meaningful relationship. My wife is sleeping much better knowing that I'm taking care of my health -and her and our kids' future - by treating my sleep apnea. The mask is no big deal -and look at the alternatives - ill health, exhaustion, severe co-morbidity. And, my kids aren't scared or worried - they know that dad's mask is what helps him have the energy to play with them and joke around.

yellowhammer
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Re: Especially for newly diagnosed - Dealing with Change

Post by yellowhammer » Fri May 04, 2012 10:45 am

Like some others here, I think I skipped right into acceptance. I have the benefit of a supportive wife (she made the appointment for me to go to the sleep study) and several friends who use CPAPs and sing their praises. Obviously, I'd rather not have sleep apnea but once diagnosed there was no question about dealing with it.

attictbuh

Great Forum

Post by attictbuh » Mon May 28, 2012 10:07 am

wow what a great forum.

child
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Re: Especially for newly diagnosed - Dealing with Change

Post by child » Fri Jun 01, 2012 11:48 pm

Thank you for your sharing

keithwood99
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Re: Especially for newly diagnosed - Dealing with Change

Post by keithwood99 » Tue Jun 05, 2012 9:49 am

Hello, I am new to this forum and am grateful that it is here. I have been suffering with sleep apnea for over a year, probably much longer. It got so bad that when I went to bed, I immediately fell asleep. I would wake up exhausted. I fell asleep at work, luckily I have an office so it was concealed. I also dosed off during driving at times which is horrible, and took naps when I got home.
I went to a pulmonologist and told him I think I have sleep apnea. He measured my neck and asked a lot of questions and had me also fill out a long questionaire.
I was scheduled for my sleep test and when the morning came, the specialist said I was severe. It turned out that when they set it to 20.0 , I was finally able to achieve REM sleep. My doctor read the results 2 days later and immediately had a CPAP machine ordered for me. I was also told I must wear it 4 hours a night for insurance to approve it. I jumped in head first and decided, this is something I need and will have to get used to. I am still having issues with the mask and must wear it tight because of the high pressure. For those that are nervous about the CPAP machine and sleep study, don't be. I wasnt nervous, infact I was looking forward to it. I am starting my 4th week with the machine and it has made a world of difference. I am no longer tired during the day and do not take any naps. I have not only been given back my life, but more time to do things I want. I am still getting used to the mask and seem to have a few leakage problems, but it is getting better. My suggestion is acknowledge the issue and then use the machine.

Thanks,
Keith

sooootired

Re: Especially for newly diagnosed - Dealing with Change

Post by sooootired » Thu Jun 14, 2012 11:32 pm

II
I felt so much more normal after reading your piece. I was diagnosed with Severe Sleep Apnea in January 2010 and quite frankly, it has dominated my life since then. I have a very small face and it took my wonderfully devoted Respiration Therapist 29 masks until he found one that was small enough to fit me. Eve then, it left a bright red mark on my nose and made it very sore.

As you mentioned, I had been correctly diagnosed by my PCP at least six months prior to my agreeing to go to the Sleep Lab to have the first testing done. When I finally agreed, I was sure I would be able to go to sleep with wires connected to me. I actually would have been willing to lie down on her floor - forget a bed - and go to sleep.

My Pulmonologist had been convinced that I was going to be a very interesting case he was very

Guess what? I'm falling asleep! Yeah! More later!

Sharp
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Re: Especially for newly diagnosed - Dealing with Change

Post by Sharp » Wed Jul 04, 2012 1:45 pm

Thank you for the insight about accepting change. God Bless.

Mr Snufalufagus

Re: Especially for newly diagnosed - Dealing with Change

Post by Mr Snufalufagus » Wed Jul 04, 2012 11:27 pm

Hi all

Firstly, great site and forum, reading this has stopped my throwing in the towel today, thankyou to all concerned!

I am 48 and I don't have the usual tiredness associated with the condition, but have had two major heart attacks and bad reflux, slightly overweight also, so it is hard to keep motivated when there is no apparent improvement.

Was diagnosed a few weeks ago and am conducting a CPAP trial for my "Moderate" condition! Wow what a learning/change curve! I am freaking out to be honest, my sleep has been woeful since using the machine, and I feel like I am never going to get comfortable with it...

According to the info on this site, just about all that can go wrong, is!
I am using the "nasal prong" (excuse lack of lingo) but this makes it difficult to sleep on my side which is my preference.
The "trunk" gets all tangled, and pulls at the device, and as I travel for work twice a week each bed and bed head is different, so getting it right is hard.
I feel like I am drowning all the time
I cant breath out fully with comfort
My mouth opens sometimes at night depleating all the water in the humidifier and I sound like steam train pulling in at a station, WOOOOOOOOOOOOOOOOOOOOOOSSSSSSSSSSSSSSSSSHHHHHHHHHHHHH
I wake in a panic occasionally
I hate something on my face, and normally like to sleep naked and free (TMI?)
Most of the time I JUST WANT TO TEAR IT OFF AND CURL UP IN A BALL SOBBING!!!

My condition has surfaced because my poor wife is at the end of her rope, and we rarely sleep in the same room, apart from those nights it goes WOOSH she has had the best leep in years, which is motivation enough eh?

I go back to the sleep clinic tomorrow with the data and hopefully as stated in the forum and site information, it will just be a matter of tweaking...

Please tell me it will get better?

Mr Snufalufagus

keithwood99
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Re: Especially for newly diagnosed - Dealing with Change

Post by keithwood99 » Thu Jul 05, 2012 11:17 am

It sounds like your mask is not adjusted correctly if you feel you are drowning. If the nasal pillow is not correctly seated on your nostrils, you will lose air and will get the feeling of drowning. If it doesn't get any better, I would suggest a full face mask that covers your nose and mouth. Tell your DME company that supplied the equipment and they will probably set you up with a different mask. Also, my pulmonologist told me that if I wanted to try different masks, to call the sleep center and set up an appointment.

Hope it works out for you!

Guest

Re: Especially for newly diagnosed - Dealing with Change

Post by Guest » Tue Jul 10, 2012 2:39 am

Hey Keith


Thanks for the advice....Recently had another visit with the Sleep Clinic and they adjusted flow settings lower for first 20 min, really helped, getting a better result, but still long way to go!

Had one great night with 7 hrs solid, WOW what a day I had after that, cant wait to get a consistent result!


Thanks again

Snufalufagus

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Blessed2BeeAlive
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Location: AZ4ME

Re: Especially for newly diagnosed - Dealing with Change

Post by Blessed2BeeAlive » Sun Jul 22, 2012 11:12 am

Thanks. I have yet to read it. I can't deny it, 'cause my husband & I both need this. I suppose the hardest part of this for me will be trying to sleep with something attached to my face & the process of changes I will have to go through. I've never cared for changes much.
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123.Shawn T.W.
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Re: Especially for newly diagnosed - Dealing with Change

Post by 123.Shawn T.W. » Sun Jul 22, 2012 6:00 pm

Blessed2BeeAlive wrote:Thanks. I have yet to read it. I can't deny it, 'cause my husband & I both need this. I suppose the hardest part of this for me will be trying to sleep with something attached to my face & the process of changes I will have to go through. I've never cared for changes much.
Yeah, but it will be GOOD for you! And soon it will be the new normal!

And it will be a blessing when we get to feeling better too!

I'll be praying for you!
"I am a man of peace, but if war comes to my door it will find me home." - Winston Churchill

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Blessed2BeeAlive
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Re: Especially for newly diagnosed - Dealing with Change

Post by Blessed2BeeAlive » Sun Jul 22, 2012 6:14 pm

123.Shawn T.W. wrote:
Blessed2BeeAlive wrote:Thanks. I have yet to read it. I can't deny it, 'cause my husband & I both need this. I suppose the hardest part of this for me will be trying to sleep with something attached to my face & the process of changes I will have to go through. I've never cared for changes much.
Yeah, but it will be GOOD for you! And soon it will be the new normal!

And it will be a blessing when we get to feeling better too!

I'll be praying for you!
I'm hoping it will be a temporary fixation & that through a healthy diet, I will someday get off of it. Mind you I'm not on this until @ least tonight.
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Roch369
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Re: Especially for newly diagnosed - Dealing with Change

Post by Roch369 » Thu Jul 26, 2012 9:34 am

Tonight will be the third night using the mask. I had a terrible time with the sleep study - the first one and then the tritation. for the initial sleep study, I was given ambien, but due to my anxiety level , it didn't help me much. After two weeks with about 1 hour sleep a night, I was about to go crazy and showed up at the drs office crying. I had severe sleep apnea and was waking up every two minutes, with 14 apneas, and 130 hyopneas. They got me in for the tritation and i had to take valium - I was so anxiety riden that woke up half way through with chest pains and had to take another valium. The technician was scared to continue - but i thought if i leave now - I'll have to start over. Got the OPUS Nasal Pillows Monday (I was too scared for the nasal or full mask). With my anxiety level the dr said I should desensitive myself to use it. The first week sit in the TV room with it on for an hour, the 2nd week bring it in the bedroom and keep it on 30 minutes and try to sleep with it the first night. Well the first night I brought it in the bedroom and watched tv for an hour and then slept with it another half hour. Then I talked myself into just closing my eyes (with it off - i see this being a problem cause it will lead to more time off!) I woke up 3 am so tired and told myself, this woudl be the best time to use it when I'm exhausted and woke up 3 hours later. Couldnt believe it. Last night was a little harder just went to bed with it for an hour, then another half hour, and off and on. I'm so used to waking up all night tossing and turning and couldn't get tired last night. I've been taken melatonin and Chamomille tea seemed to help (didn't try that last night). It seems you have to be in the right frame of mind (relaxed) when you are breathing or will get freaked out.

I don't like the situation I'm in with being hooked up to a machine -- change. i hate change and don't deal well with it. I've talked to so many people that sleep apnea (never knew how common it was).