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General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Mark55
 
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Which way did you sleep better?

Postby Mark55 on Sat Nov 11, 2017 10:40 am

I'm sure I'm not the only person here that has wondered if their study results were correct. Roughly three months ago I was diagnosed just barely in the moderate range at 16, and I was dealing with some pretty extreme fatigue by late afternoon, but wasn't having problems with the act of sleeping itself.

Just this past week I turned my machine in to Crapria per my insurance company instruction. I told them how worthless the DME and my sleep doctor both were, and was told to find another doctor and DME and start over again with a new scrip for a machine. In the meantime I have purchased one for cash which I will use in the interim (might take months to go through the whole process again), and then keep for a backup after I get a new machine through my insurance. The machine I paid cash for won't be here until Monday.

I quit using cpap as of Wednesday, so I am three nights into a nice five night break with nothing at all on my face. I am immediately back to my old sleep pattern which is,... go to bed around 11:00pm,... drop off in five minutes,...wake around 3:00am for a bathroom break,...immediately back to sleep,... and wake naturally just after 5:00am, right before my alarm at 5:15am.

While I don't feel any different fatigue wise, I sure have slept better, and actually have been looking forward to going to bed instead of dreading it. I have zero phobias about using the cpap so my bad experiences with the machine are not influenced by anything of that variety. I wake up over and over when I use these damn machines,... whether it's because of a movement of the hose,... a dry/sore throat,... not feeling like I am free to move into whatever position I want to,...noise,...air leakage,...etc. By the time morning comes, I find myself more tired than when I sleep naturally.

I just hope I am able to find a good sleep doctor, that can set me up with a better DME provider, and between the two of them can lead me to a way of being able to sleep like a normal human with one of these intrusive devices on me all night,... every night.

If I really have this condition, I also hope I am able to reach the point that some of you have,... where you seem to revel in comfort, looking forward to sleeping with this device on, and feel significantly better upon awakening. So far for me, this experience has been a huge disruption to my quality of life, as well as a big PIA. I guess I've been previously spoiled by doctors that I can get in touch with if I need to, and their office actually answers their phones. I honestly have never experienced anything like Apria, and this farce of a sleep doctor I had.

Sorry for my 'mini rant' interruption,......carry on! :wink:

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Goofproof
 
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Re: Which way did you sleep better?

Postby Goofproof on Sat Nov 11, 2017 11:41 am

You don't need a sleep doctor as much as you need the software Sleepyhead, so you can get your machine set up correctly. People here can guide you if you post the data from the program.

Also it would help to know how what the setting are you use. If you have sleep apnea, you aren't doing yourself any favors ignoring it. Not using the machine will only reinforce none use. Jim

Many times the machine settings, Ramp, start pressure ect, are incorrect for you or not needed, usually there are better ways to set up your machine.

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coconur
 
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Re: Which way did you sleep better?

Postby coconur on Sat Nov 11, 2017 12:43 pm

Mark55 wrote:I honestly have never experienced anything like Apria


Wow! It was almost 9 years ago that I handed my machine back to Apria and started buying all of my equipment on cpap.com. It was right after they admitted to restarting the rent to own agreement at zero when we changed insurance companies at about a year into my therapy.

Edit: Forgot to mention that they were charging $2000 for an M series machine, that I saw on cpap.com for $500.

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Mark55
 
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Re: Which way did you sleep better?

Postby Mark55 on Sat Nov 11, 2017 1:36 pm

Goofproof wrote:You don't need a sleep doctor as much as you need the software Sleepyhead, so you can get your machine set up correctly. People here can guide you if you post the data from the program.

Also it would help to know how what the setting are you use. If you have sleep apnea, you aren't doing yourself any favors ignoring it. Not using the machine will only reinforce none use. Jim

Many times the machine settings, Ramp, start pressure ect, are incorrect for you or not needed, usually there are better ways to set up your machine.

Oh,...I plan on going back to using a machine by the middle of next week, as bad as I hate to. My new machine is another of the same listed below.

My settings are: CPAP mode at a constant 8cm pressure.
EPR on constant reduction of 3cm.
Ramp is on and set to auto.
Autostart is enabled.

I have the SH software, and know how to post here as I have done it previously. I also know how to enter the clinical menu and make changes,....I just haven't done it to date with my previously 'rented' machine.

I think I really need a FFM, as that is what my titration study was done with, but I have been unable to find one I can tolerate so far either due to unstoppable leakage, and/or the thing making my nose bridge and/or forehead sore. I am NOT claustrophobic in the least so that isn't an issue. The one I remember the name of was a Mirage Quattro, and while it didn't leak badly, it killed the top of my nose, and left a blood red place on my forehead after my titration where I managed to sleep about 4 hours.

My Brevida nasal pillows do not leak on me, but I have an issue with my mouth dropping open. I tried a chinstrap, and it worked for a couple of days, after that back to leaking and a sore throat again. I then added one of those hair things over my mouth as suggested by another member. In combo with the chin strap it cut the leakage way down, but I find it impossible to have any quality of sleep with a mask over my nose,...a chinstrap over and behind my head,...and a hair band around my neck and mouth. I felt like I was in the hands of kidnappers instead of trying to sleep.

I'm going to give it a year, and keep trying until things either get better, or I decide 'quality' of life is more important than length.

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Arlene1963
 
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Re: Which way did you sleep better?

Postby Arlene1963 on Sat Nov 11, 2017 1:54 pm

Have you tried a soft cervical collar? Really helped me to reduce mouth leaks and eliminate the horrible dry mouth which resulted from those and kept waking me up umpteen times per night.

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Gryphon
 
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Re: Which way did you sleep better?

Postby Gryphon on Sat Nov 11, 2017 2:03 pm

I never could use the mirage quatro as it was. I always would modify the forehead pad with fleece. Much softer and no marks on my forehead. You want to loosen the forehead nob so the mask gently rests on your nose not s lot of pressure. Helps a lot with marks on your nose.

luvsbluberries
 
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Re: Which way did you sleep better?

Postby luvsbluberries on Sun Nov 12, 2017 1:40 pm

Have you tried the Fisher & Paykel Simplus?

The frame comes up to the forehead, but it does not touch your skin. This allows the cushion to 'do it's thing' on the bridge of the nose, which is sort of telescope to fit wherever it needs to fit. It's hard to explain. The forehead strapping is only used to align the frame in space, NOT to hold it against your face.

The bridge of my nose is very sensitive due to a bone having been removed during reconstructive surgery. I feel no pressure at all when wearing the Simplus.

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Mark55
 
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Re: Which way did you sleep better?

Postby Mark55 on Sun Nov 12, 2017 2:33 pm

luvsbluberries wrote:Have you tried the Fisher & Paykel Simplus?

The frame comes up to the forehead, but it does not touch your skin. This allows the cushion to 'do it's thing' on the bridge of the nose, which is sort of telescope to fit wherever it needs to fit. It's hard to explain. The forehead strapping is only used to align the frame in space, NOT to hold it against your face.

The bridge of my nose is very sensitive due to a bone having been removed during reconstructive surgery. I feel no pressure at all when wearing the Simplus.

Thanks for the suggestion, as the mask itself looks pretty comfortable for the nose bridge. Unfortunately that forehead anchor location would drive me nuts.

I think I'm going to try the Airfit F10 at some point since it doesn't have that forehead bar.

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Re: Which way did you sleep better?

Postby Pugsy on Sun Nov 12, 2017 2:48 pm

Is your question as to which way do I sleep better a choice between with cpap or no cpap?
If so, the answer is with cpap I sleep better. Without cpap I snore and wake myself up all the time and have a boatload of apneas and my oxygen levels drop and I wake up with massive headache.
So sleep quality is poor in general and I wake up feeling horrible.
Not to mention hubby sleeps better when I use cpap because of the snores if nothing else. :lol:

That's now....now back when I was first starting cpap and I was having to get used to the mask and the air and all that....it did take me about 4 months to get to a point where the machine and/or the mask were no longer causing little wake ups. Takes a while for the brain to come to grips with the new alien being stuck on its human's face blowing air up the nose. So initially when I was new to therapy the mask and machine did cause some sleep disturbances but I knew what would happen if I didn't use it so I hunkered down and worked through it. Eventually it becomes second nature though and the brain won't keep waking you up to let you know that there is an alien plastered on your face.

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Re: Which way did you sleep better?

Postby xxyzx on Sun Nov 12, 2017 3:08 pm

Mark55 wrote:
luvsbluberries wrote:Have you tried the Fisher & Paykel Simplus?

The frame comes up to the forehead, but it does not touch your skin. This allows the cushion to 'do it's thing' on the bridge of the nose, which is sort of telescope to fit wherever it needs to fit. It's hard to explain. The forehead strapping is only used to align the frame in space, NOT to hold it against your face.

The bridge of my nose is very sensitive due to a bone having been removed during reconstructive surgery. I feel no pressure at all when wearing the Simplus.

Thanks for the suggestion, as the mask itself looks pretty comfortable for the nose bridge. Unfortunately that forehead anchor location would drive me nuts.

I think I'm going to try the Airfit F10 at some point since it doesn't have that forehead bar.

========

the forehead bar is there to prevent trauma to the nose
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Mark55
 
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Re: Which way did you sleep better?

Postby Mark55 on Sun Nov 12, 2017 7:28 pm

Pugsy wrote:Is your question as to which way do I sleep better a choice between with cpap or no cpap?
If so, the answer is with cpap I sleep better. Without cpap I snore and wake myself up all the time and have a boatload of apneas and my oxygen levels drop and I wake up with massive headache.
So sleep quality is poor in general and I wake up feeling horrible.
Not to mention hubby sleeps better when I use cpap because of the snores if nothing else. :lol:

That's now....now back when I was first starting cpap and I was having to get used to the mask and the air and all that....it did take me about 4 months to get to a point where the machine and/or the mask were no longer causing little wake ups. Takes a while for the brain to come to grips with the new alien being stuck on its human's face blowing air up the nose. So initially when I was new to therapy the mask and machine did cause some sleep disturbances but I knew what would happen if I didn't use it so I hunkered down and worked through it. Eventually it becomes second nature though and the brain won't keep waking you up to let you know that there is an alien plastered on your face.

I know that it will take me time to get used to using this thing every night, and I am prepared to keep trying of course. Your description of how you slept without cpap is what I would expect of someone with apnea, and I also can see how it would make a huge difference once you got used to the 'alien' as you call it. :lol:

I never felt that way though. No snoring, no waking up multiple times during the night (except for 1 or 2 bathroom breaks depending upon fluid intake), no headaches, no waking up gasping for air, no bounding pulse,....etc.
I can go to bed and be asleep in 5 minutes, and go back to sleep after a bathroom break in even less time. I sleep through the whole night, changing positions very few times. My only symptom is extreme fatigue and sleepiness by afternoon which I seem to have whether I'm using cpap or not.

Of course I have no way of knowing what my SpO2 levels are doing throughout the night, but I'm not getting the normal symptoms of desaturation events,...I don't even have memory problems, and I hardly ever sleep more than 5 to 6 hours a night. The functioning of my memory is very important in my business, so it would be a major thing if I was having problems there.

I'm just really confused right now, and one thing I intend on ordering very soon is a recording oximeter, to see if I am having desats or not. Since I'm not waking all the time, it seems that would be my main worry?

I know I sound like a person that is looking for a reason to quit using the cpap machine, but that really isn't the case. I'm just one of those folks that needs to know what the truth really is. IF I really have OSA, I will get used to the lousy machine one way or the other,....but if I don't, your darn straight I don't want to be tethered to one of these things for no dramatic reason.

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Re: Which way did you sleep better?

Postby Pugsy on Sun Nov 12, 2017 7:45 pm

So what is your diagnosis and how did you end up with the machine in the first place?
You must have met some sort of criteria to get a DME and insurance involved for them to take the machine back.
They don't dispense that stuff without some sort of diagnosis to back it up.

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Re: Which way did you sleep better?

Postby Julie on Sun Nov 12, 2017 7:48 pm

One important thing to think about - having a carb heavy lunch - it will definitely make you feel sleepy and useless in the afternoon, apnea or no apnea, and many people forget about that.

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Mark55
 
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Re: Which way did you sleep better?

Postby Mark55 on Sun Nov 12, 2017 8:21 pm

Pugsy wrote:So what is your diagnosis and how did you end up with the machine in the first place?
You must have met some sort of criteria to get a DME and insurance involved for them to take the machine back.
They don't dispense that stuff without some sort of diagnosis to back it up.

Oh,...I have a diagnosis alright. It's of OSA with an AHI of 16. I had a sleep study done in a local sleep center owned by the Doc I was referred to.

Basically at this point, I guess I don't really trust the study after my experience with this guy and Apria. In over three months, I never had another appointment set up, I never received a follow up phone call, and not even a return call after numerous attempts to contact someone. Seems like they just ran up a bill, and shipped me off.

My study was a really bad experience as well. In addition to the seeming hundreds of wires everywhere,...this place was flat out noisy. People banging up and down the halls talking all night. I'm one of those folks that needs it dark, AND quiet to be able to sleep. They also made me sleep flat on my back with one of those pancake thin hotel pillows. I tried to tell the dufus that I DO NOT sleep that way. I start out the night on three pillows, and reduce by one after my first bathroom break in the wee hours. I do this due to GERD that I have had for many years, even though it is controlled now. I guess I'm just used to it after doing it for years. They finally gave me some sort of sleep aid (which I never take), and I managed to 'sleep' for MAYBE 2 hours tops. They swear it was long enough for a diagnosis though.

I returned for a titration study that was equally bad, but managed to sleep almost four hours this time, because they let me use my own pillows. Actually I demanded to use my own pillows to be honest.

I constantly wonder if any of those conditions could have created a false positive, such as the 'sleep aid' for instance. My body is not used to such drugs, and I am not used to sleeping flat as a pancake either. I was also under the impression that a sleep study required 'at least' four hours of continuous sleep to be considered legit. Also I don't rule out plain and simple fraud to be honest with you.

They called me three weeks after the studies sounding extremely serious about my diagnosis,...so serious that it took another month and a half to get a call from Crapria about picking up my machine. My insurance company had approved it immediately, as I checked by phone.

This is what happened to me, and is a big reason I have questions. These people seem as dumb as a box of rocks,....heck, they could have been looking at another persons results for all I know. :lol: Seriously!! :roll:

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Re: Which way did you sleep better?

Postby Pugsy on Sun Nov 12, 2017 8:31 pm

Ahhh....I understand now.

You know if anything the poor sleep would be more likely to have given you a false negative than a false positive....or maybe under valued your AHI of 16 meaning if you had got more sleep/better sleep it might have been higher.

The criteria needed to earn a flag is pretty cut and dry and it's unlikely that the sleep aid would have maybe made the apnea events "worse".
Sleep aids don't change the patency of the airway and are quite commonly dispensed to help people get some sort of sleep in the foreign environment of whatever sleep lab you might be in.

So false positives are exceedingly rare and I can't see that happening. Now a false negative because of poor sleep I can see happening fairly easily.

Now is the sleep apnea the cause of your unwanted symptoms...dunno. It might be and it might not.
Is the poor sleep because of mask or machine comfort issues worse than the sleep apnea sleep??? That's the million dollar question isn't it?

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