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Popriv Offline

Members

Posts: 12
Joined: Sep 2014

Machine: S-9autoset
Mask Type: Full face mask
Mask Make & Model: Unsure
Humidifier: H15
CPAP Pressure: 4 - 20
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location:

Post: #1
1st post...
OK, I think I'm into my 3rd month with resmed s-9 autoset.
1 month info is - 23/30 days >4hrs, avg.4.8 hrs, avg. pressure =11, AHI avg. 1.1 ( what does that mean? Hourly or nightly? ) Just barely in compliance.

I had an at home study that I didn't think went well as I couldn't sleep well with equipment attached. A week later doc called and said I needed treatment so they sent out the APAP unit. I see doc next week hoping to get more info? Saw my primary a few weeks ago and he mentioned something in the 60's. I'm guessing my AHI # ? ( how bad is that ) (still learning the terminology ? ) but said I should talk to sleep doc.

I can't make it through the nite without taking the full mask off.
Sometimes I wake, it seems like a lot of pressure. Mouth is blown open like I have my head stuck out the car window with my mouth open and the mask is leaking. I end up taking mask off. ???

Lately, it seems like the humidifier isn't working, dry mouth.
It originally was set to manual and I could set the humidity. Now its in auto. Either I accidentaly reset it or can they do it remotly? ( doubt they would as they are only interested in complience not treatment ) I got my clinicians manual from here and last night set it to manual. Temp is 75 degrees humidity is 5. originally at 5 it would run low/dry on water. Last night on 5 it only went down .25". I've read about defective humidifiers? But it did go down a bit...

I haven't notice a huge improvement, wife says I don't nod off as much? Drowsy driving seems better? Still not a lot of energy.. Very subjective....? Guessing just meeting compliance isn't good enough to get a good night sleep? I usually go to bed around 9:30 to 10:00 and ALWAYS wake up around 4:00am and that it... Even if I went to bed at 1:00am, I'm up at 4 -5 am......

Trying to improve other sleep issues like eating late, tv on at night, exercise... With mixed effort... Lol

I was very skeptical of this as most people I know quit treatment after awhile.
Doc tells me I have a problem I cant see, insurance sells be an expensive product I can't tell if it's doing anything for sure. The perfect scam... But, I see the info on theses boards and am willing to give it a try.. I think I have to get to where I'm using it for most of the night to really evaluate results.

OK, getting long here, just looking for some input...

Thanks

Steve
09-04-2014 04:19 AM
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Tez62 Offline

Monitors

Posts: 837
Joined: Feb 2013

Machine: Resmed S9 Autoset
Mask Type: Full face mask
Mask Make & Model: Resmed Mirage Quattro
Humidifier: Resmed
CPAP Pressure: 5-15
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: Melbourne, Australia

Post: #2
RE: 1st post...
Welcome Steve, your AHI is good, it is the average over your 4.8 hours of usage so around one apnea per hour, you need to compare that against the number of apneas you were recording at your first sleep study. An apnea is recorded when a person stops breathing for 10 secs or more. Sleep apnea is measured by severity 0-5 normal, 5-15 mild, 15-30 moderate and 30+ servere, for example during your first sleep study you had on average 60 apnea's per hour or servere, using CPAP you are now down around 1 per hour. You sound like you need to get your slepp hygeine right, you sound like you know what you have to do, you just have to do it. Sleep hygeine is extremely important for everyone but probably more for us. Just work at improving your compliance and your sleep hygiene and you will get even better results, good luck.
09-04-2014 05:18 AM
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Terry Offline

Advisory Members

Posts: 553
Joined: May 2014

Machine: Philips Respironics RemStar Auto with A-Flex (560P)
Mask Type: Nasal pillows
Mask Make & Model: P/R Nuance & Pap Cap
Humidifier: Integrated
CPAP Pressure: Auto
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location:

Post: #3
RE: 1st post...
> I can't make it through the nite without taking the full mask off.

Some people feel claustrophobic with a mask. You might want to try nasal pillows.

> Sometimes I wake, it seems like a lot of pressure. Mouth is blown open like I have my head stuck out the car window with my mouth open and the mask is leaking. I end up taking mask off. ???

You probably need a chin strap to keep your mouth closed.

> Lately, it seems like the humidifier isn't working, dry mouth.

That comes from having your mouth open. If your mouth is closed, it shouldn't be dry.

> degrees humidity is 5. originally at 5 it would run low/dry on water. Last night on 5 it only went > down .25". I've read about defective humidifiers? But it did go down a bit...

If you don't have big leaks (like an open mouth) it actually uses very little water, so that's good, not a problem.

> I haven't notice a huge improvement, wife says I don't nod off as much? Drowsy driving seems > better? Still not a lot of energy.. Very subjective....? Guessing just meeting compliance isn't
> good enough to get a good night sleep?

Some people need to get their AHI very low to feel better. I feel like crap if mine is much above 0.3.

Also if you're using sleepyhead software, try settting it to use the RDI setting instead of AHI. RDI (Respiratory Disturbance Index) includes Flow Limitations, which can disturb sleep even if they don't turn into apenas.

> I was very skeptical of this as most people I know quit treatment after awhile.

Sucks to be them.

Once you get it working you'll feel like you got a 20 year "reset" on your life. It's amazing.

Terry
(This post was last modified: 09-04-2014 09:12 AM by Terry.)
09-04-2014 08:53 AM
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trish6hundred Offline

Advisory Members

Posts: 6,436
Joined: May 2012

Machine: Resmed S9 AutoSet for Her
Mask Type: Full face mask
Mask Make & Model: Fisher & Paykel Simplus
Humidifier: H5i Heated Humidifier
CPAP Pressure: 10 - 7-20 Cm H2O
CPAP Software: Not using software

Other Comments: I started CPAP in 2008. Totally blind since birth.

Sex: Female
Location: Missouri, USA

Post: #4
RE: 1st post...
Hi Popriv,
WELCOME! to the forum.!
CPAP therapy can take some time to get used to. Here's what you can try. Wear your mask and use your machine during the evening as you read or watch tv. This will help you get used to the mask and machine before you sleep.
Hang in there for more suggestions and best of luck to you with your CPAP therapy, stick with it, it does get better.

trish6hundred
09-04-2014 09:01 AM
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NickDanger Offline

Preferred Members

Posts: 91
Joined: Jun 2014

Machine: Resmed S9 Autopap
Mask Type: Nasal pillows
Mask Make & Model: ResMed P10
Humidifier: 5i
CPAP Pressure: 9
CPAP Software: ResScan SleepyHead

Other Comments: ResMed Chinstrap

Sex: Male
Location:

Post: #5
RE: 1st post...
Welcome, Steve!

Let me see: "wife says I don't nod off as much", "drowsy driving seems better" - those are great results! Keep it up and when you are fully assimilated (Borg from Star Trek...), you likely will feel better and better. It took me almost a year to get to the point that I slept through the night without waking and taking the mask off. Taking the mask off is a bad habit and it is difficult to break - you do it when you are half asleep and your judgment isn't at its best. If you really want to get the total benefit of this therapy, you have to break that habit. I'll let you figure out what approach to breaking bad habits works best for you. This habit is contributing to you not feeling as well during the day as you would like- you are essentially getting 5 hours of high quality sleep, the rest of the night you are getting the same crappy sleep you were getting before you started treatment. Most people feel tired if they only get 5 hours of high quality sleep.

Things aren't perfect. The dry mouth suggests you opening your mouth and breathing through it during the night. I had that problem, too. Getting that under control was the final step in making my therapy work. I use nasal pillows (a full face mask (usually abbreviated as FFM) makes me feel claustrophobic) and when I breathe through my mouth, not only does my mouth get painfully dry, but my therapy isn't effective due to excessive leaks. This also tended to wake me up at night (and, of course, I would take the mask off...). In my case a chin strap was enough to solve that problem (I don't wear it too tight - just tight enough that it is uncomfortable to chew, but not so tight that it is uncomfortable with my mouth closed). With a FFM, you may not be having the excessive leaks I was having, but I am told that mouth breathing with a FFM will still make your mouth very dry. Perhaps a chin strap would help you with that.

Regarding water usage - I'm not sure where you live. I'm in Atlanta and August (well... early September) is a lot warmer and more humid than May/June. The humidifier isn't going to use as much water in those conditions.

It sounds like you are off to a good start, but are having some issues becoming fully acclimated to the treatment. Most people are able to adapt more quickly than you have. But many of us have taken longer - as I said, it took me about a year until it got to the point that I didn't feel right sleeping without the machine and, now, not using the machine actually results in difficulty falling asleep. If you keep it up and solve some of the niggling details (dry mouth, finding a way to go back to sleep with the mask after 4 am), I'm confident you'll also make that 180 degree change in comfort levels.
(This post was last modified: 09-04-2014 09:48 AM by NickDanger.)
09-04-2014 09:36 AM
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joesnowdon Offline

New Members

Posts: 1
Joined: Aug 2014

Machine: ResMed S9
Mask Type: Nasal mask
Mask Make & Model: ResMed Mirage Swift II
Humidifier: s5
CPAP Pressure: 8-14
CPAP Software: Not using software

Other Comments:

Sex: Male
Location:

Post: #6
RE: 1st post...
Hi Popriv -
I have been using APAP since 2006, just joined this forum. Like everyone else has indicated, give yourself some time to get used to this - it's a mechanical correction for a very complex set of biological, parasympathetic system and nervous system issues. It took me a full 2 years before I could get 4 hours of sleep. That first night it got 4 hours was like a revelation I felt so good; the first 8 hour night I got (probably around 2010) was so weird I couldn't believe it.

I just went from nasal pillows to a full face mask. What happens with me is that even with a chin strap my throat closes and sends the pressurized air out through my teeth and lips! I am pretty sure I haven't really had a lot of good sleep because of this. Finding a comfortable full-face mask has been tough, I like the new ResMed Quattro FX I just tried for the first time last night. I'll report back as I get more use.

On apnea and hypopnea events, I have a theory I am working on. The medical description is that with an apnea you stop breathing for 10 seconds, hypopnea is constricted breathing for 10 seconds, the 2 together add up to your AHI index. The docs look for a nightly total below 5.0 to indicate effective treatment. My challenge to this measurement is that the way it works out for me is that I rarely get to sleep deeply enough to have a 10 second event! I stop breathing and wake up before a 10 second event can be logged, so my AHI is below 3.5 most nights. I also wake up when the air blows out through my mouth, so the leak isn't recorded as excessive because I wake up and stop the leak by closing my mouth. This apparently indicates effective treatment - the problem is I never fell fully asleep (with full sleep cycle things like REM, etc.) so I still "wake up" pretty trashed. I have to use the full-face mask to make sure my mouth is not the leak problem.

Once I get used to the full face mask I hope that I will get more deep sleep and be more rested. In the meantime I am also taking up orofacial myofunctional exercises - face, cheeks, tongue and throat exercises to strengthen the whole breathing system. Look on YouTube for Joy L Moeller or orofacial myofunctional therapy.

I hope this is encouraging for you. It takes "work" to sleep for the likes of us. Keep up the work, your life will improve.

Cheers,
Joe
(This post was last modified: 09-04-2014 10:08 AM by joesnowdon.)
09-04-2014 10:03 AM
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Popriv Offline

Members

Posts: 12
Joined: Sep 2014

Machine: S-9autoset
Mask Type: Full face mask
Mask Make & Model: Unsure
Humidifier: H15
CPAP Pressure: 4 - 20
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location:

Post: #7
RE: 1st post...
OP here, 1st, thanks for all your responses. The encouragement helps.

A couple posters mentioned my open mouth contributing to dryness.
I don't think I could breath through only my nose all night.. I am defiantly a mouth breather. That's why I went with the FFM. Imwas really surprised that the mask doesn't bother my, I fall asleep fine. Again I feel like at some point at night the pressure goes way up and wakes me up. Would sleepyhead show this?

Also I prefer to sleep on my stomach which doesn't work with the mask. I am able to sleep on my side if I adjust the pillow. So that's not to bad.

I see my doc for the 1st time since I stated using the cpap, on Tuesday. I will print out a sleepyhead report and bring my sd card. Any other suggestions for that visit?

Thanks for any input.

Steve
09-04-2014 05:23 PM
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retired_guy Offline

Preferred Members-2

Posts: 2,744
Joined: Jan 2014

Machine: ResMed S9 Autoset
Mask Type: Nasal pillows
Mask Make & Model: Resmed Airfit P10
Humidifier: ResMed
CPAP Pressure: 10.6/14, EPR 3
CPAP Software: ResScan SleepyHead

Other Comments: Is it bedtime yet?

Sex: Male
Location: Beautiful, albeit very wet Oregon Coast

Post: #8
RE: 1st post...
Hi Steve,

I see your min/max pressure is set at 4 and 20. I also see your average pressure comes in around 11?

I believe that the default min/max's of 4 and 20 do a disservice to the patient. Generally it is done when a more specific range has not been established. But when things get goofy, the machine can dial it up to 20 which will cause you to think you just walked into a tornado, or down to 4 which will cause you to think you inadvertently went to bed with a plastic bag over your head.

What I would suggest you explore with your doc is setting the minimum pressure to something like 8, and the maximum to something like 14. Then run for awhile and see how your results look. Or, another nice thing to do is set the minimum to 10 and turn the EPR on with a value of 2. In theory that results in the same minimum pressure but I have noticed that it might tend to calm the waters a bit, particularly with the flow-limits.

Now, about that mouth breathing cause the nose doesn't work well thing? Yeah, me too. I was the poster child for "can't breath through my nose." I have a cabinet full of full face masks to help prove that I can't breath through my nose. Then I got a Resmed P10 pillows system, and by golly guess what? I can breath through my nose. As a matter of fact the air pressure keeps my airway open extremely well. As a matter of fact I find I even continue to breath through the nose thru-out the day. Who woulda thought? Well, ok, but I have to go back to the face mask when/if I have a sinus issue, or cold? Not even. Hasn't happened. If anything the pillows mask help me to defeat a coming sinus issue.

I do use a chinstrap to help encourage my mouth to stay shut. My wife would do that but she's usually asleep too. She does her best to help me keep my mouth shut during the day. But that's another story.
09-04-2014 05:53 PM
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Doc J Offline

Preferred Members-2

Posts: 199
Joined: Dec 2013

Machine: ResMed S9 AutoSet
Mask Type: Nasal pillows
Mask Make & Model: ResMed AirFit P10
Humidifier: resMed H5i Dumped and dry daily
CPAP Pressure: 10-15
CPAP Software: ResScan SleepyHead

Other Comments: Knowledge is King and this is the place to find it! Thanks everyone.

Sex: Male
Location: Central Nebraska

Post: #9
RE: 1st post...
You sound like you are on the right track, just being here and working on it tells me that. I was a life long mouth breather so I started with a FFM that I hated it but used for 6 months because I was determined to make it work at all cost. Eventually tried a nasal mask then a nasal pillow mask and I am so glad because it works great for me. The pressure opens my narrow nasal passages and I breath great and the mask is so minimal in size and leaks. I know it won't work for everyone but make sure you try different masks.

So keep up the good work and I think the benefits will keep showing up in many ways. Keep reading and teaching yourself all the fine points and ask for help when needed, there are many smart folks willing to help.

Good Luck!

Doc J (despite my nickname I am not a doctor)

Remember to donate to the board if you can, it has helped a lot of people including myself.
09-04-2014 06:11 PM
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archangle Offline
Wiki Editor
Advisory Members

Posts: 3,159
Joined: Feb 2012

Machine: ResMed S9 AutoSet
Mask Type: Nasal pillows
Mask Make & Model: ResMed Swift FX
Humidifier: ResMed S9 H5i
CPAP Pressure: 16-20
CPAP Software: ResScan SleepyHead EncoreBasic

Other Comments: Happy PAPper

Sex: Undisclosed
Location: USA

Post: #10
RE: 1st post...
(09-04-2014 04:19 AM)Popriv Wrote:  I was very skeptical of this as most people I know quit treatment after awhile.
Doc tells me I have a problem I cant see, insurance sells be an expensive product I can't tell if it's doing anything for sure. The perfect scam... But, I see the info on theses boards and am willing to give it a try.. I think I have to get to where I'm using it for most of the night to really evaluate results.

We've let the whole medical system go to pot. I often use the term "medical mafia," but sometimes I feel I should apologize to the Cosa Nostra Mafia for besmirching their bad name.

It's like dealing with used car salesmen.

However, I firmly believe:

Apnea kills or ruins your health and your life.
If a sleep test says you have apnea, you do have it, and it's harming your life.
CPAP is a true miracle cure like penicillin or insulin.

Unfortunately, for many people, YOU have to take charge of your own therapy in many cases. You need to figure out how to not get screwed with a bad CPAP machine by your CPAP salesman. You need to get software and check your own data to figure out how your treatment is working.

Get the free SleepyHead software here.
Useful links.
Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
09-04-2014 06:38 PM
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