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Help Please! First post.
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Harlon Offline

Members

Posts: 19
Joined: May 2016

Machine: ResMed S9
Mask Type: Full face mask
Mask Make & Model: Unsure
Humidifier: ResMed H5i
CPAP Pressure: 8
CPAP Software: Not using software

Other Comments:

Sex: Male
Location:

Post: #1
Help Please! First post.
Hi. My name is Harlon. I'm new to the site so I guess this is my hello!! I was diagnosed with sleep apnea 5 years ago. Like many of you here (I'm sure) I thought the sleep study was a stupid waste of time. Come to find out I stop breathing 23 times a minutes. They say that is moderate. IDK. But they gave me a CPAP (ResMed S9). When I picked it up they just handed it to me and said "thanks". Now 5 years later I can't hardly use the thing (I swear I sleep better without it). I find it bulky, awkward and I feel that my exhaling against the pressure tires me out as much as snoring. I don't know what to do. I don't even know what my pressure is supposed to be. I realize this is a serious issue. My dad died suddenly at 63, and I'm pretty sure sleep apnea was a reason for that. I'm 46 and suddenly worried about my health. I can't keep this heavy snoring thing up. I walked into my (only) local sleep doctor and told him "I'd like to try a BiPAP. Maybe multiple pressures is what I need". He says "cool" and does the paperwork. Insurance is now pushing back. And I don't even know what the hell a BiPAP is. I just saw it on a website. Now I see something called APAP. Please - I need to start learning what this is I'm dealing with and what I need to do to treat it. I have had zero help. I want to give up, but I also do not. I have 2 daughters who think I'm super dad (I am, by the way) and now a grandson who thinks I'm the greatest thing since doggie kisses. And so I'd like to figure this out and make good and intelligent decisions and hang around a while. Can anyone recommend a doctor in the Houston area that can actually tell me what this is I'm dealing with and what this pain in the butt machine does for me???? Thank you. Sorry to ramble and to come off as an idiot. But I want this to improve my life. I'm tired of being tired. I'm tired if my wife sleeping in another room. I'm tired of not being able to concentrate. Etc. Etc. Etc. Thank you!
05-04-2016 02:41 AM
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DeepBreathing Offline
Wiki Editor
Moderators

Posts: 2,295
Joined: Sep 2013

Machine: Resmed S9 VPAP Adapt
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: Resmed H5i
CPAP Pressure: EPAP: 9 - 15 PS: 3 - 10
CPAP Software: ResScan SleepyHead

Other Comments:

Sex: Male
Location: Perth, Western Australia

Post: #2
RE: Help Please! First post.
G'day Harlon, welcome to Apnea Board.

Sleep apnea is an insidious thing that creeps up on you and ends up wrecking your health. You're still young enough to take charge and beat it. CPAP is the gold standard treatment for apnea, and it works well, but many people can't hack it and there's something like a 50% drop-out rate. But you already have the drive and motivation to get on top of your apnea and not be a drop-out.

I can't tell you about doctors in Houston, but I'm sure somebody will chime in with some suggestions. In the mean time I can tell you a little bit about apnea, how it works and how the machines work. Probably best is to watch one of Resmed's excellent videos such as this one, which goes into a lot of detail about what is actually happening during an apnea: https://www.youtube.com/watch?v=_kmTmXuM6NE

In terms of the types of machine, the Resmed S9 series has a name printed near the power button. The most common are Escape, Elite or Autoset. The Escape is what we call a brick. It will maintain a set pressure all night but won't record any useful data to allow you to monitor and fine tune your treatment, Avoid these like the plague. The Elite also maintains a fixed pressure but records highly detailed data. The AutoSet is an APAP. Like the name suggests it will automatically set the optimum pressure (within prescribed limits) to meet your needs over time. These are great machines. Each of these has a feature called EPR (expiratory pressure relief) which can drop the pressure a little bit as you exhale to make make breathing easier.

A bilevel machine (BiPAP) takes the EPR concept further by giving you a much greater range between inhale and exhale using a concept called pressure support (PS). These are used if you need a very high pressure, to make breathing easier, or if you have certain respiratory conditions on top of your apnea. Lastly there is a special type of BiPAP called ASV (adaptive servo ventilation) which is used for treating central apnea.

There are a lot of factors which come together to make your CPAP therapy successful or otherwise. Obviously you need to have the right pressure setting, which is where the APAP is a good idea - it can adjust your pressure as needed. You can play with the EPR setting to make exhaling easier and more comfortable. You can change your humidifier settings to get the air to a comfortable temperature and humidity. And you can choose from a wide range of masks to find one which is comfortable and which doesn't leak. For most of us that's the hard part.

Perhaps most important for apneacs is a support network of people who have been there and done that. We all know what it's like to have a plastic alien strapped to our face every night, blowing air at us from a compressor. we've all struggled with hoses that like to wrap themselves around our necks. And we all get "hose hair" (well, those of us with any hair left) Wink

At this stage I've got a couple of suggestions to help you reignite. First, find out what model S9 you have and let us know. Second, get hold of the clinician manual (there is a link at the top of this page). That will allow you to interrogate your machine and find out what your actual pressure and EPR settings are. Third, so long as you don't have an S9 Escape, download and install SleepyHead software (link at the top of the page). This is a brilliant program which will give you an enormous amount of information and allow you to fine tune your therapy. There are a lot of people on this forum who can view and interpret SleepyHead output and offer some very sound advice on the way forward.

Best of luck!

DeepBreathing
Apnea Board Moderator
www.ApneaBoard.com


Bed

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
05-04-2016 04:10 AM
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zonk Offline

Advisory Members

Posts: 7,908
Joined: Feb 2012

Machine: A10 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Activa LT
Humidifier: Integrated /ClimateLineAir
CPAP Pressure: 9/13
CPAP Software: ResScan

Other Comments: CPAP since Nov 2010

Sex: Male
Location: Australia

Post: #3
RE: Help Please! First post.
Hi Harlon
Since the machine is 5 years old, you might qualify for a new machine as 5 years is the period for machine replacement
Here are some machines recomendations http://www.apneaboard.com/wiki/index.php...ne_Choices

You can find accredited sleep doctor in your area http://www.sleepeducation.org/find-a-facility

Being proactive is important for successful therapy, you get out what you put in

Welcome
05-04-2016 04:43 AM
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sdb7802 Offline

Advisory Members

Posts: 199
Joined: Jan 2016

Machine: PR DreamStation Auto
Mask Type: Nasal pillows
Mask Make & Model: ResMed AirFit P10
Humidifier: built-in with heated hose
CPAP Pressure: 9.5-14 C-Flex 3
CPAP Software: SleepyHead

Other Comments: Retired Electrical Engineer; began using cpap in 2001; FlashAir wifi card and FlashPAP app

Sex: Male
Location: Georgia, USA (The Margravate of Azilia)

Post: #4
RE: Help Please! First post.
Welcome, Harlon

Ask your doc to consider arranging a trial with a:

Philips-Respironics DreamStation Auto

and/or

ResMed AutoSense 10 AUTOSET for Her


I've found the DreamStation easier to tolerate than some of the other machines.

Some users report similar results with the "A10 for Her".

Also the ResMed P10 nasal pillows work really well for some users.

Not pushing any particular brands here; Just offering tangible options that have worked for me.

Good luck and let us know how things go.

Just my personal opinion. My posts are not medical advice or a statement of fact. Please consult a qualified physician or other qualified medical personnel. Please comply with all applicable laws, codes, regulations, and protocols.
05-04-2016 05:53 AM
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PaulaO2 Offline
Wiki Editor
Moderators

Posts: 8,065
Joined: Feb 2012

Machine: S9 Autoset
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: H5i
CPAP Pressure: 14-20
CPAP Software: SleepyHead

Other Comments: Ehlers-Danlos Syndrome, Hypermobility Type; chronic sarcasm

Sex: Undisclosed
Location: western NC, USA

Post: #5
RE: Help Please! First post.
After 5 yrs, your needs have changed. It definitely sounds as if your pressure needs to be adjusted. If you have not seen your sleep doc since the diagnosis, I suggest you see him/her. Sometimes they can be useful.

PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
05-04-2016 11:19 AM
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shewhorn Offline

Preferred Members

Posts: 79
Joined: Feb 2016

Machine: ResMed AirCurve 10 ASV
Mask Type: Full face mask
Mask Make & Model: F&P Eson & ResMed AirFit F10
Humidifier: Integrated
CPAP Pressure: 4 - 19
CPAP Software: SleepyHead

Other Comments:

Sex: Undisclosed
Location:

Post: #6
RE: Help Please! First post.
(05-04-2016 02:41 AM)Harlon Wrote:  Now 5 years later I can't hardly use the thing (I swear I sleep better without it).

First, ditto what DeepBreathing said. Now to comment on the above...

I have a somewhat similar history. I was prescribed a machine about 5 years ago (ResMed S9 AutoSet)... used it for a few months, and couldn't tolerate it. Due to other health concerns, I found myself at a neurologist's office. In the process of bringing him up to speed on my symptoms, I brought in a binder of various things. I'd unintentionally had my sleep study in there which I'd completely forgotten about as in the past, I'd seen 2 sleep doctors, had multiple sleep tests, and meh. Anyhow, this guy knew what to do with the data and he knew which buttons to press to get me to pay attention.

My father has diabetes and sleep apnea and I'm sure the sleep apnea has lead to the diabetes. I don't want to get it... so, this time I was committed to making it work.

I had a study done in January, but before that, I dug my S9 Autoset out and started using it again... my sleep got worse. After the sleep study I was prescribed a ResMed Airsense S10 Autoset. No better... the same... waking up groggy AND... now with headaches. My AHIs with treatment were often above 5, sometimes going 18 for the night. Using the SleepyHead software, I was able to see that I was experiencing these giant clusters of Central Apnea events in the morning hours... my AHI was around 30 to 40 sometimes in the last 2 hours of sleep and my time in apnea for the night was around 15 to 18 minutes... now, since that's 15 to 18 minutes condensed into about 2 hours or less... not surprising why I started waking up with headaches.

Using the data from SleepyHead it was easy to make the case for an Aircurve ASV which is a machine designed to treat central apneas. My doc went through the insurance formalities (which included another sleep study... of which I only slept 30 minutes but apparently he got enough data to convince my insurance) and I got my new ASV machine on Friday. I've used it for 5 days now. In those 5 days I have consistently slept over 8 hours (not contiguously... but only waking up once each night which is really good as I was waking up on average 4 to 5 times every night before the ASV machine) and all of my AHIs have been in the range of 0.12 to 0.8. Pretty good!

After the insurance monitoring period is over (and once I've accumulated so solid data with SleepyHead), I'll post a few screen shots here to see if anyone has suggestions for tweaks to dial out the remaining events I'm experiencing (which appear to be mostly hyponeas now).

But anyhow, just wanted to validate your experience that you feel like your sleep is worse when using the machine. It happens. The next step is to collect some data if your machine allows you to do so, and/or consult a doctor to try and find out what's going on. Persistence is key as I've discovered, this is a bit of a slow process.

May the 4th be with you! Smile
05-04-2016 11:43 AM
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FrankNichols Offline

Advisory Members

Posts: 714
Joined: Mar 2016

Machine: AirSense 10 Autoset
Mask Type: Full face mask
Mask Make & Model: Resmed F10 and/or P10
Humidifier: Builtin
CPAP Pressure: 17-19
CPAP Software: ResScan SleepyHead Other Software

Other Comments: I've figured out how to get my AHI down to 5, I quit sleeping!

Sex: Male
Location: Live Oak, Florida

Post: #7
RE: Help Please! First post.
[quote]
I had a study done in January, but before that, I dug my S9 Autoset out and started using it again... my sleep got worse. After the sleep study I was prescribed a ResMed Airsense S10 Autoset. No better... the same... waking up groggy AND... now with headaches. My AHIs with treatment were often above 5, sometimes going 18 for the night. Using the SleepyHead software, I was able to see that I was experiencing these giant clusters of Central Apnea events in the morning hours... my AHI was around 30 to 40 sometimes in the last 2 hours of sleep and my time in apnea for the night was around 15 to 18 minutes... now, since that's 15 to 18 minutes condensed into about 2 hours or less... not surprising why I started waking up with headaches.
{/quote]

Except for this being my new machine and it's an Airsense 10 Autoset, your symptoms sound almost exactly like mine, down to the big clusters in the morning that run up to 50 to 75 AHI during the cluster. I have a followup meeting with the doctor Friday, and plan on discussing this with him, especially since my AHI is averaging around 7.5 with almost all of it in the clusters. And I am feeling worse since starting therapy with this machine a month ago - it might all be coincidence but sure sounds familiar to me...

I am not a Medical professional and I don't play one on the internet.
Started CPAP Therapy April 5, 2016
I'd Rather Be Sleeping
05-04-2016 11:50 AM
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Harlon Offline

Members

Posts: 19
Joined: May 2016

Machine: ResMed S9
Mask Type: Full face mask
Mask Make & Model: Unsure
Humidifier: ResMed H5i
CPAP Pressure: 8
CPAP Software: Not using software

Other Comments:

Sex: Male
Location:

Post: #8
RE: Help Please! First post.
Thank so much for the replies and suggestions. I do have the S9 Autoset. And I wasn't even aware of what that SD card was for until now. I will put one in tonight and then download SleepyHead. Hopefully I won't inadvertently take my mask off in my sleep (I seem to do that from time to time) and I'll have some data tomorrow. When I do I'll post here and see what y'all think. And I'll check out all the the links and models y'all have suggested above. I really appreciate the help! And knowing others here have gone down this same road and figured it out.

Also - how big of a card do I need? Exactly how much data is stored on it?
(This post was last modified: 05-04-2016 12:08 PM by Harlon.)
05-04-2016 12:07 PM
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Harlon Offline

Members

Posts: 19
Joined: May 2016

Machine: ResMed S9
Mask Type: Full face mask
Mask Make & Model: Unsure
Humidifier: ResMed H5i
CPAP Pressure: 8
CPAP Software: Not using software

Other Comments:

Sex: Male
Location:

Post: #9
RE: Help Please! First post.
Nevermind the size of card question. I just realized it already has a card - it just wasn't plugged in.
05-04-2016 12:27 PM
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Sleeprider Online
Wiki Editor
Advisory Members

Posts: 3,340
Joined: Dec 2014

Machine: Resmed Aircurve 10 Vauto
Mask Type: Nasal pillows
Mask Make & Model: Resmed Airfit P10
Humidifier: Resmed Climateline
CPAP Pressure: Auto Bilevel 18/9, PS 3
CPAP Software: ResScan SleepyHead EncoreBasic

Other Comments:

Sex: Male
Location: Where they make Respironics

Post: #10
RE: Help Please! First post.
Harlon, the S9 Autoset will accept SD cards from 2 to 8 GB (maybe larger), but you only need the small capacity ones. There is a link to Sleepyhead software at the top of the page that you will want to download. The software and data will immediately let you understand the effectiveness of your treatment.

To access settings on your machine, check out this: http://www.apneaboard.com/resmed-s9-cpap-setup You want to know what mode, and pressure ranges are in use, and whether you are using Exhale Pressure Relief (EPR). Your machine does provide up to 3 cmH2O pressure relief in exhale, but you have to set it. You may find EPR immediately improves your comfort. It works on the same principle as bilevel, but has a more limited range.

It may well be that a bilevel machine would be a better option for you, but understanding it, and optimizing your current machine will give you a better chance of arguing for the upgrade. The machine you have is pretty respectable when setup correctly.

______________________________________________
Organize your SleepyHead Data
Post your SleepyHead Data from Imgur
Robysue's Beginner's Guide to Sleepyhead
05-04-2016 12:30 PM
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