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[CPAP] Ailu, the CPAP outlaw, mask and all
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Ailu Offline

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Posts: 159
Joined: Oct 2013

Machine: Philips Respironics System One (60 Series) RemStar Auto with A-Flex
Mask Type: Nasal pillows
Mask Make & Model: Fisher Paykel Pilairo Q
Humidifier: System One Heated
CPAP Pressure: Auto-CPAP: 8-9
CPAP Software: SleepyHead EncoreBasic

Other Comments:

Sex: Female
Location: Sierra Nevada Mountains

Post: #1
Surprised Ailu, the CPAP outlaw, mask and all
Hi! I am new here but love this forum and especially that Physicians are not equated with Gods here. Even so - I may likely still get flamed here, but I really do need your help. I have no insurance, and no money for insurance. And truly, I don't need a doctor to tell me I have sleep apnea - I wake up several times a night gasping for air. Scares the bageebers outta my husband.

My sleep apnea has become so bad, I often only sleep 4 hours or less, because it feels better to be awake breathing than to sleep suffocating without any air. I realized, if I don't try a "do it yourself" I'm gonna wake up dead. Even if a sleep study was available, I've seriously got to get started now.

Fortunately, a friend gave me her old CPAP machine (a ResMed S8 Elite), along with all the nasal and full face attachments. I have access to the clinical menu. I have the software. My big question is - what pressure is the safest to start out with??? I'd like to start there, and then adjust based on the results.

Now I realize, that even attempting to help me with this might not be quite "PC" and may open you up to criticism as well - so please, if you have advice but are nervous about posting it, you are welome to PM me instead. I am appreciative and open to your experiences and suggestions.

Thanks much,
Ailu
(This post was last modified: 10-13-2013 07:14 PM by Ailu.)
10-13-2013 07:04 PM
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Tez62 Offline

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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: Ailu, the CPAP outlaw, mask and all
Ailu, welcome, I'm not a Dr just another SA sufferer like you, I know what you mean about waking up every 4 hours or so, for me it was every hour or two. I understand about the money issue the first bit of advice everyone will give you is get it done properly as this is your life we are talking about. Having said that without knowing your AHI (how many times you stop breathing per hour) it will be difficult, I would start at 4 or 6 and work you way up either half or one at a time. If you stay on 4 for a week or so it will give you an idea how many apneas you are having but there is no real rule as to the numbers of apneas = how much pressure as we are all different) and you don't know whether you have obstructive sleep apnea, central sleep apnea or both. After a week if you can post your results we may be able to offer more advice. At least you are willing to give it a go which is a good start, stay positive and be patient and good luck.
10-13-2013 07:30 PM
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Ailu Offline

Preferred Members-2

Posts: 159
Joined: Oct 2013

Machine: Philips Respironics System One (60 Series) RemStar Auto with A-Flex
Mask Type: Nasal pillows
Mask Make & Model: Fisher Paykel Pilairo Q
Humidifier: System One Heated
CPAP Pressure: Auto-CPAP: 8-9
CPAP Software: SleepyHead EncoreBasic

Other Comments:

Sex: Female
Location: Sierra Nevada Mountains

Post: #3
RE: Ailu, the CPAP outlaw, mask and all
Thank you Tez62! Really, really appreciate you giving me some sort of baseline to start with.

I do not believe my sleep apnea is obstructive. It's more like my lungs go to sleep and don't have the will to inflate, esp. when I am in my deepest sleep. But when my nasal passages are clogged, it is definitely worse. I've had neurological problems in the past, so based on that, it's likely to me that I have a bit of both.
10-13-2013 07:36 PM
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jgjones1972 Offline

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Posts: 516
Joined: Nov 2012

Machine: ResMed S9 AutoSet
Mask Type: Full face mask
Mask Make & Model: ResMed Quattro FX
Humidifier: ResMed H5i
CPAP Pressure: 18 - 20
CPAP Software: ResScan SleepyHead

Other Comments: CMS50I PulseOx

Sex: Male
Location: Ohio - USA

Post: #4
RE: Ailu, the CPAP outlaw, mask and all
If it were me, under these circumstances, I would set the machine up early one evening and set it to 4cmH20 and play around with it getting the mask on right (and picking which one if I had more than one to choose from), getting used to the feel etc. Then I would slowly start bumping the pressure up in small increments to see what it feels like and where it gets uncomfortable and where it seems intolerable. Then I would probably settle on a pressure where it might be uncomfortable, but I could feel like I could deal with it enough to get to sleep. For some that might be 4cmH2O, for others it might be considerably higher. You have to start somewhere, and with nothing to go on I figure the important part is just getting started so you can get some feedback (data from machine) and then the real work can start using the nightly/weekly/monthly data to get the pressure tuned in properly. The process would be much easier with an Auto, but it is what it is - just don't expect any miracles. It might take quite a while to get it tuned in. At least you have a data capable machine so you aren't flying blind.

Sleep-well

EDIT: I just saw your most recent post. Please be aware that CPAP will NOT treat your apnea unless it is obstructive and may cause you harm if you have central apnea!
(This post was last modified: 10-13-2013 07:48 PM by jgjones1972.)
10-13-2013 07:42 PM
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me50 Offline

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Posts: 2,559
Joined: Aug 2013

Machine: resmed S9 VPAP Auto
Mask Type: Nasal mask
Mask Make & Model: Wisp and Silicone Head gear
Humidifier: resmed H5i
CPAP Pressure: 18/8
CPAP Software: SleepyHead

Other Comments:

Sex: Undisclosed
Location: USA

Post: #5
RE: Ailu, the CPAP outlaw, mask and all
(10-13-2013 07:04 PM)Ailu Wrote:  Hi! I am new here but love this forum and especially that Physicians are not equated with Gods here. Even so - I may likely still get flamed here, but I really do need your help. I have no insurance, and no money for insurance. And truly, I don't need a doctor to tell me I have sleep apnea - I wake up several times a night gasping for air. Scares the bageebers outta my husband.

My sleep apnea has become so bad, I often only sleep 4 hours or less, because it feels better to be awake breathing than to sleep suffocating without any air. I realized, if I don't try a "do it yourself" I'm gonna wake up dead. Even if a sleep study was available, I've seriously got to get started now.

Fortunately, a friend gave me her old CPAP machine (a ResMed S8 Elite), along with all the nasal and full face attachments. I have access to the clinical menu. I have the software. My big question is - what pressure is the safest to start out with??? I'd like to start there, and then adjust based on the results.

Now I realize, that even attempting to help me with this might not be quite "PC" and may open you up to criticism as well - so please, if you have advice but are nervous about posting it, you are welome to PM me instead. I am appreciative and open to your experiences and suggestions.

Thanks much,
Ailu

you could always go to the ER when this happens and they can check this out. There are a lot of factors that come into play with SA (or it could be something else along with SA) and I have been told that CA has to be treated with a different type of CPAP machine than you have. Going to the ER (at least in the states) will get you checked out and maybe even admitted. There are also programs that discount the bill based on income. Even using the machine that you are using, you can still cause other health issues b/c you don't know what kind of apnea you have, whether there are other medical illnesses along with or without apnea.

Are you and your family eligible for state aid for medical insurance? If you are, and you don't have it right now, they can sign you up for it and your current medical expenses will be covered as long as you are eligible for it.

I don't know what else to suggest to you because I wouldn't recommend a specific pressure or anything b/c you could have other medical issues that are causing this (and, you should have your heart/lungs checked to see if there has been any affect on them).

Do you fall asleep during the day (on nights that you don't stay awake all night), are you sleepy when you wake up, etc. etc.

I wish you the best and hope that you can find the answers to your medical issues. Keep us updated okay?
10-13-2013 07:46 PM
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me50 Offline

Advisory Members

Posts: 2,559
Joined: Aug 2013

Machine: resmed S9 VPAP Auto
Mask Type: Nasal mask
Mask Make & Model: Wisp and Silicone Head gear
Humidifier: resmed H5i
CPAP Pressure: 18/8
CPAP Software: SleepyHead

Other Comments:

Sex: Undisclosed
Location: USA

Post: #6
RE: Ailu, the CPAP outlaw, mask and all
(10-13-2013 07:36 PM)Ailu Wrote:  Thank you Tez62! Really, really appreciate you giving me some sort of baseline to start with.

I do not believe my sleep apnea is obstructive. It's more like my lungs go to sleep and don't have the will to inflate, esp. when I am in my deepest sleep. But when my nasal passages are clogged, it is definitely worse. I've had neurological problems in the past, so based on that, it's likely to me that I have a bit of both.

This is what I am talking about. You can cause yourself a whole lot of damage in your case because you don't have a diagnosis. You don't think you have obstructive sleep apnea so treatment with the machine you have may not help you at all. If it is your lungs, as you mention, then you need to find out what is causing them not to have the will to inflate. That coupled with the fact that you have experienced neurological problems in the past, you really could be causing yourself a world of harm.

As an example, I had a friend that found a lump in her breast. She, like you, did not have insurance. A friend of hers said for her to take birth control pills and even gave her some. When she didn't get better, she went to the doctor, was diagnosed with cancer and was told the birth control pills she took was the worst things she could have done. This is why I say I had a friend as she did not survive.

It would be different if you had a diagnosis of SA and what type of apnea you had but you don't so I would hesitate to give you any advice other than to find out what the cause of this is FIRST and you can always go to the ER and not have to pay them then and can ask for financial assistance, state aid, etc. (I don't know what state/country you live in).
(This post was last modified: 10-13-2013 07:56 PM by me50.)
10-13-2013 07:54 PM
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jgjones1972 Offline

Preferred Members-2

Posts: 516
Joined: Nov 2012

Machine: ResMed S9 AutoSet
Mask Type: Full face mask
Mask Make & Model: ResMed Quattro FX
Humidifier: ResMed H5i
CPAP Pressure: 18 - 20
CPAP Software: ResScan SleepyHead

Other Comments: CMS50I PulseOx

Sex: Male
Location: Ohio - USA

Post: #7
RE: Ailu, the CPAP outlaw, mask and all
I completely agree with me50 on this. I jumped the gun with my earlier advice as I had not yet read that there is a possibility that the apnea is not obstructive and there are prior neurological problems.

Please disregard my earlier advice and use your energy to figure out how to be examined by a doctor.

Sleep-well
(This post was last modified: 10-13-2013 08:06 PM by jgjones1972.)
10-13-2013 08:05 PM
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trish6hundred Offline

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Posts: 6,452
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: #8
RE: Ailu, the CPAP outlaw, mask and all
Hi Ailu,
WELCOME! to the forum.!
Hang in there for more responses to your post and I hope you can somehow get things straightened out with your health.

trish6hundred
10-13-2013 09:03 PM
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Ailu Offline

Preferred Members-2

Posts: 159
Joined: Oct 2013

Machine: Philips Respironics System One (60 Series) RemStar Auto with A-Flex
Mask Type: Nasal pillows
Mask Make & Model: Fisher Paykel Pilairo Q
Humidifier: System One Heated
CPAP Pressure: Auto-CPAP: 8-9
CPAP Software: SleepyHead EncoreBasic

Other Comments:

Sex: Female
Location: Sierra Nevada Mountains

Post: #9
RE: Ailu, the CPAP outlaw, mask and all
Sincerely appreciate all the replies. But what is the difference between obstructive & neurological apnea, as far as treatment is concerned? I assumed the treatment was similar...
10-13-2013 09:07 PM
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me50 Offline

Advisory Members

Posts: 2,559
Joined: Aug 2013

Machine: resmed S9 VPAP Auto
Mask Type: Nasal mask
Mask Make & Model: Wisp and Silicone Head gear
Humidifier: resmed H5i
CPAP Pressure: 18/8
CPAP Software: SleepyHead

Other Comments:

Sex: Undisclosed
Location: USA

Post: #10
RE: Ailu, the CPAP outlaw, mask and all
(10-13-2013 09:07 PM)Ailu Wrote:  Sincerely appreciate all the replies. But what is the difference between obstructive & neurological apnea, as far as treatment is concerned? I assumed the treatment was similar...

The treatment is different for Central Apnea. BUT, first you have to determine that it is apnea causing your issues.

Hopefully, someone can answer your question better but without a diagnosis, suggestions on treatment would be difficult, especially since you mentioned other health issues in the past and that it feels as if your lungs may be a problem. Apnea and lung issues are 2 separate issues and you may have issues with your lungs and not actually have apnea or you could have both. And knowing that you have apnea and what kind of apnea and how bad it is as well as whether you have other neurological issues and lung issues would or could change your treatment. Oxygen could be needed, etc. It is hard to help you without a diagnosis.
10-13-2013 09:21 PM
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