They Tell Me I Need This Machine

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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palerider
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Re: They Tell Me I Need This Machine

Post by palerider » Fri Sep 02, 2016 5:23 pm

ckeith wrote:So when I am NOW told that I must climb a mountain with Roller Skates on, and NOW I must sleep with
this INVASION blowing air into my head, and I KNOW that it is impossible for me to achieve that
- I get angry, very ANGRY - I suppose another person might CRY, but ANGER seems the only response left me
you know, you're just making it worse with all your ranting. it solves nothing and just delays your ability to cope.

get over your "INVASION" and "blowing air into my head", and "I KNOW that it is impossible" bullshit.

first, the mask isn't invasive, isn't inside you at all.

second, it doesn't blow any air into your head, it provides a VERY GENTLE pressure, a tiny fraction of the amount of pressure needed to blow up a balloon, just to keep your airway open, so that your lungs can pull air in, and out. the only air movement is what your lungs cause.

and, third, if you tell yourself it's IMPOSSIBLE, well, what does that say about your chances of success?

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Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.

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JimW159
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Re: They Tell Me I Need This Machine

Post by JimW159 » Fri Sep 02, 2016 5:25 pm

ckeith[color=#FF0040] wrote:I find it Intolerable ![/color]

Right now I feel the only place I can start with my New CPAP machine is to jump up and down on it
I am told that I can't sell the thing on ebay -

People who know me say they appreciate me as a nice calm fellow, nice to be around
I have never been one who is susceptible to temper tantrums or Irrational Rage - at least - NOT until now !

I have recently had a heart valve job and I presently suffer from Atrial Fibrillation and so have been prescribed Apixaban, a blood thinner
I have recently been enduring Chronic Insomnia that seemed to be quickly worsening, so the Doctor recommended a sleep study
The diagnosis was a "Severe Sleep Apnea" Oxegen level drops to 78%, and so a CPAP machine was prescribed

I can't stand it ! - The damded thing sends me into a RAGE ! - I can hardly refrain from jumping up and down on the OFFENCE
I can feel the adrenalin surge, Blood Pressure and Heart Rate go through the roof ! - I'll end up in an ambulance to get
Zapped by the Paddles again, in order to DeFib me at this rate!

I can't sleep Now ! - I get about two hours a night - How in HELL can I be expected to sleep with an INVASIVE Appliance
strapped to my head, that is constantly Blowing AIR up my nose ! - NO WAY on God's Blue Marble !!! -
How can anybody adapt to this THING! - I feel myself incapable. It's like asking me to climb a mountain with roller skates on !

It seems so bloody Stupid to me ! - So counter intuitive !!! -
"Here clamp this thing on, let it blow air up your nose - pleasant dreams !" HA HA HA

I sleep on my side and move around a lot - It blows air all over my face - I can't endure for moire than 5 min. Let alone sleep with it !
I have an appointment with the Sleep Specialist - I expect he will recommend a different mask - I am skeptical

I KNOW I need to control this Apnea - I can't see how it is possible with THAT #@*!%^& THING - getting desperate
Red:
I find it Intolerable ! Of course your comfort is uppermost - far be it for you to experience discomfort in treating your condition - try loosing a leg and finding a prosthetic "intolerable."
Irrational Rage - try rational rage for a while - there are rational arguments for XPAP as a treatment for apnea - use your rationality to overcome your irrationality (at least you admit your rage is irrational)
Oxegen (sic) level drops to 78% - at that very dangerous level the little grey cells are not thriving - perhaps a root to the irrationality
Blood Pressure and Heart Rate go through the roof ! as has been cited earlier, apnea is a strong contributor to elevated BP levels - the treatment is not
I feel myself incapable. At least you are accepting the problem is YOURS, not the modality of treatment
It seems so bloody Stupid to me ! I think you may have misspelled a word - perhaps it should be OF, not TO
I KNOW I need to control this Apnea - I can't see how it is possible If you KNOW, why not accept the wisdom actually TRYING to treat the problems (all of them)

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palerider
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Re: They Tell Me I Need This Machine

Post by palerider » Fri Sep 02, 2016 5:26 pm

ckeith wrote:If I put the mask on it goes to 200-210 - I get the distinct feeling that I am doomed & that Angers me
The mask feels like an INVASION, It seems UNATURAL, with all the air going up my nose I still feel
as though I am choking - perhaps I am rewriting a Classic PANIC attack into a RAGE !!!

But still the Insomnia make it impossible
get over yourself and all your whining and bitching. you want help? people here can help you, but not if all you do is rant and bitch and whine and say it's impossible.

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ckeith
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Re: They Tell Me I Need This Machine

Post by ckeith » Fri Sep 02, 2016 5:52 pm

Janknitz wrote: Most of us when through this anger, it's part of the grief process--you are grieving over the loss of
the healthy person you thought you were until your rude awakening. It's not unusual to feel the way you do.

You have two choices here--work through the anger or get stuck in it.
Which will it be? Do you want to feel this way the rest of your life?

If you want help to get through the anger stage and on to acceptance, we can help.
If you just want to rage, rage on. We'll still be here--the question is--will you?

Those of us who have gone beyond found that the CPAP is saving our lives, one night at a time.
It becomes a comfort instead of a punishment, but not without a lot of hard work, first. When you're ready . . .
Thank You - Good Advice -
You are right - It is Heart Breaking

Maybe if I could loose the Roller Skates - I could climb that mountain - Insomnia being the Rollerskates
I can't see that I am going to be able to address the issue of CPAP until I get the problem of Insomnia solved

But the doctors seem to me to think that the Insomnia is a function of the Apnea
If that is the case - I'm probably a Train Wreck waiting to happen

.

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chronic
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Re: They Tell Me I Need This Machine

Post by chronic » Fri Sep 02, 2016 6:07 pm

I've been on cpap for 12 years. For many years now I sort of look forward to strapping on my mask and going to sleep. Well sort of. When I first started I felt sort of like you do now. I am somewhat of an old man now but 12 years ago I was so upset. I did not see how I could live this way. Believe me when I tell you that all that air pressure you feel now, will go away and you will be like in the eye of a hurricane, very calm, peaceful and quiet.

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Julie
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Re: They Tell Me I Need This Machine

Post by Julie » Fri Sep 02, 2016 6:14 pm

Insomnia is only incidental in some OSA patients, so do this - break your problems into two - insomnia that might (or might not) be related to all your meds (not saying you don't need them, but there are always ways to finesse things), and part two is dealing with Cpap, the mask, etc. etc.

And - for the last time because I have other things to do as does everyone else here - go back to my (and others') specific questions re equipment and whatever else we asked, and then answer them, in point form if you like, or not, but do it. Bye for now.

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ckeith
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Re: They Tell Me I Need This Machine

Post by ckeith » Fri Sep 02, 2016 6:18 pm

JimW159 wrote: as has been cited earlier, apnea is a strong contributor to elevated BP levels - the treatment is not

And as I said - I realized that - I know Apnea blows up the BP levels
But at the moment - for me the "modality of treatment" you speak of
Blows my Blood pressure even Higher - much HIGHER!! than an Apnea attack
JimW159 wrote: It seems so bloody Stupid to me ! I think you may have misspelled a word - perhaps it should be OF, not TO
-
And thanks for the Insult - very helpful

palerider wrote:
ckeith wrote:If I put the mask on it goes to 200-210 - I get the distinct feeling that I am doomed & that Angers me
The mask feels like an INVASION, It seems UNATURAL, with all the air going up my nose I still feel
as though I am choking - perhaps I am rewriting a Classic PANIC attack into a RAGE !!!

But still the Insomnia make it impossible
get over yourself and all your whining and bitching. you want help? people here can help you,
but not if all you do is rant and bitch and whine and say it's impossible.
You are right - Thanking Julie, Janknitz & Chronic - I may indeed find some people here who can help me -
But I will NOT find it at your door Mr Pale

Have to sign out for a while be back
.

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Last edited by ckeith on Fri Sep 02, 2016 6:31 pm, edited 2 times in total.

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Re: They Tell Me I Need This Machine

Post by Cardsfan » Fri Sep 02, 2016 6:26 pm

Hi- glad u joined us.
Would it help if you thought of how much better you are going to be after using cpap? Being so sleep deprived (we have all been there) you must know you are not making good decisions. You don't have the energy.
So, you got to trust us on this. Cpap works. I love feeling good. Keep that goal in mind. Whatever obstacles you face, someone on here has figured out how to deal with it.
So, take a deep breath, and get on board.

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Re: They Tell Me I Need This Machine

Post by JimW159 » Fri Sep 02, 2016 6:33 pm

ckeith wrote: You are right - I may indeed find some people here who can help me - But I will NOT find it at your door
.
Why are you so certain that everyone who has responded are so wrong and you are so right? The cumulative experience and knowledge here is vast - I guess you might scoff at guidance that doesn't cater to your biases. Just because others don't agree with your bias doesn't make them wrong.
If you find sleeping with XPAP problematic, how well do you sleep WITHOUT it? Do you think you are healthier without XPAP than with helping it work?

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Re: They Tell Me I Need This Machine

Post by Julie » Fri Sep 02, 2016 6:35 pm

Jim... that's kind of argumentative right now, not sure it'll 'forward' the situation and he is a little stressed after all...
Last edited by Julie on Sat Sep 03, 2016 4:04 am, edited 1 time in total.

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Re: They Tell Me I Need This Machine

Post by JimW159 » Fri Sep 02, 2016 6:52 pm

Julie wrote:Jim... that's kind of argumentative right now, not sure it's 'forward' the situation and he is a little stressed after all...
If he finds the questions and comments argumentative, sorry - though I fail to see any particular value in catering to a lack of acceptance of the situation. Thus far, in all of his posts, I have seen no serious questions about how to make XPAP work for him. All I have seen are anger and vituperation in his initial post and each of his responses to those either asking for information and offering suggestions and encouragement. My thought is that if he doesn't take ownership of his problems and make a serious attempt to engage the solutions he will fail miserably - and I do mean miserably.

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Re: They Tell Me I Need This Machine

Post by Janknitz » Fri Sep 02, 2016 6:55 pm

Insomnia is not unique to you. Many of us had difficulty sleeping because of our apnea to begin with, and then add in trying to sleep with a chunk of plastic strapped to your face blowing air at you, sleep was unbelievably difficult. For most of us, when we were able to sleep with the machine, sleep improved. I'm not saying it's easy--took me a few months.

Search for a member here named "Roby Sue" if you want to see someone who really battled with the insomnia demon for a good long time. She has a blog addressing it--hopefully someone will send you a link. Roby Sue fought insomnia and still has battles to fight with it. But she didn't give up.

Personally, I think tackling insomnia comes AFTER some basics. If you don't get them down first, good sleep will never happen.

So for now, let's eliminate insomnia from the equation. You need to get used to the mask and the blower first, and this starts when you are wide awake.

1. Make sure you have the right mask. It should be comfortable in whatever sleeping positions you normally move into during the night. It should not cause pressure sores or pain. It should not leak excessively, especially not into your eyes. Learn to adjust it so it's "just tight enough" not to leak and never too tight. Learn how to put it on and off in the dark. Learn how to field strip it for cleaning and put it back together correctly. Learn how it works so you can be assured that you are not going to asphyxiate, so you know what happens if you tighten that strap or loosen another one. Learn how it responds as the pressure increases in response to airway events. Learn what you need to do to improve the comfort--a mask liner (Padacheek, for example), some lanisoh on nasal pillows, a clean face, a special bed pillow, etc.

2. Understand the settings on your machine. Often people don't touch the settings and don't realize that the ramp setting (pressure starts very low and may remain low for a period of time on the theory that you can fall asleep before it's at full pressure--NEVER works that way!) is part of their discomfort because it can make you feel like you're not getting enough air. Download sleepyhead and learn to read your charts. You can learn if you have big leaks, if the machine is adequately addressing your apneas, if it's waking you, etc.). Data gives you some sense of control, and goals to strive for.

3. Now sit in a comfortable chair or on the couch, put on your mask and machine, and just practice not panicking with the mask on your face. Read, watch TV, listen to music. Don't try to sleep, but don't get upset if you do. Your goal is to be calm and comfortable with the mask on. Try to stretch out the amount of time you do this. It may be only 10 minutes at first. Try to get to two hours over time.

4. During this acclimation period you're still going to try to use the machine at night, just as you do in the chair. Again, don't focus on trying to sleep with the mask--it may happen or not. Your goal is just to tolerate the mask.

Yes, you need sleep. But until you can first take off the roller skates by learning not to fight the mask, you aren't going to get up that hill.

I had to do this for weeks. I started with 10 minute increments before I'd rip off the mask and throw it across the room. Gradually I began counting slowly to 10 before I'd rip off the mask, and sometimes I could just keep it on. Sleep came in short bouts, eventually I got to 2 hours at a time, then 3, and so on. It took me a couple of months to sleep through the night. Yes, it was miserable. But in the whole of my life, a drop in the bucket of time.

I use a few aids. I use a mask liner because I hate the way silicone feels against my face. I went through about 8 masks initially until I found something I could sleep with. I hang my hose so it doesn't get in my way. My original machine was kind of noisy, so I learned to sleep with podcasts (an earbud in one ear--now I have "sleep phones") so I didn't focus on the rhythm and sound of the machine. I learned never to pressure myself to sleep--if I wake I listen to the podcast, even if I'm awake all the rest of the night so I'm not "trying" to fall asleep (but now I almost always fall back to sleep within a few minutes).

I made small, daily goals--wearing the mask for 10 minutes while awake. Wearing the mask for 15 minutes while awake. Sleeping 1 hour with the mask. Sleeping 1 1/2 hours, etc.

And my ultimate goal: Putting the mask on and just going to sleep, just like I put on my PJ's. It took a good, long time to get there, but giving up was NOT an option.

Hard, HELL yes! Uphill with roller skates--backwards!

And yes, I whined a LOT. There were some people here who gave me a swift kick in the butt when I needed it, for whom I'll be forever grateful. I'd be dead now, without that. I have no doubt.

Rant or work it. Your choice.
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palerider
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Re: They Tell Me I Need This Machine

Post by palerider » Fri Sep 02, 2016 6:55 pm

ckeith wrote: But I will NOT find it at your door Mr Pale
best of luck to you, then.

I'll put you on the 'ignore' list so I don't have to suffer through your ranting and self destructive behavior.

cheers.

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Re: They Tell Me I Need This Machine

Post by JimW159 » Fri Sep 02, 2016 7:04 pm

ckeith wrote: Maybe if I could loose the Roller Skates - I could climb that mountain - Insomnia being the Rollerskates
I can't see that I am going to be able to address the issue of CPAP until I get the problem of Insomnia solved

.
You put the roller skates on your feet, only you can remove them

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Re: They Tell Me I Need This Machine

Post by 49er » Fri Sep 02, 2016 7:47 pm

CKeith,

Welcome to the forum. Unlike most people on this site, I feel anger is a perfectly acceptable emotion considering everything you have gone through.

Having said that, in order to help you move forward, we need the information that Julie asked for in order to best help you. And her advice to see your MD about the meds possibly causing insomnia is definitely one to follow. Metoprolol might be one of the culprits:

http://www.aarp.org/health/drugs-supple ... omnia.html.

One step at a time.

49er