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#11
Sleepster, RonWessels, and jorgea,
Thanks for the replies and advice.
I won't be able to get a new machine without a recommend/prescription from my doctor following another sleep study. And if the current machine will handle the new variables at that time, I will likely have to pay out of pocket if I want the fancier, data-capable one. Thus says Tricare and my DME/referring doctor who I spoke to today.
No biggie...yet. Like you have said, I need to get back to wearing the mask and using the machine as much as possible. Can't say it is not working for me when I am not wearing it. I am going to "play around" with the C-flex settings and even try it without C-flex, as I have a feeling that C-flex may not have been used during my sleep study, when I at least slept longer than 15 minutes.
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#12
New users must get comfortable with the device. My advice is this. When you are wide awake and watching baseball on a Saturday afternoon, practice. Get your machine on your face and wear it, breath and watch tv. Do this often. Do it at night in bed even when you are not ready to fall asleep. Get comfortable with the device. One of these trials will find your fast asleep by accident!
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#13
(07-28-2013, 05:59 PM)artension Wrote: Anyhow, here are some of the numbers:
..
AHI was 123.4 (Most apneas were OSA, about 10% were CSA)

Hi artension, welcome to the forum!

If without pressure your Central Apnea Index (CAI) was about 12 (10% of 123.4), what was your CAI when under pressure? Was it lower? Or higher? Often the CAI will be get larger when we are under pressure.

Usually, over the beginning months of therapy the CAI will eventually decrease to a small amount (well less than 5), but I think this rule of thumb might apply only to people who do not have a significant amount of Central Sleep Apnea during their baseline sleep study, when sleeping without pressure.

I think it unconscionable that your doctor prescribed a "brick" to someone who displayed severe OSA and significant CSA during their baseline sleep study. To optimize your therapy your doctor should be monitoring the breakdown of CSA events versus OSA events, so he should have prescribed a fully data-capable machine which reports clear airway events. Actually, I wish more in the medical community would develop greater concern for patients' welfare and would prescribe use of only data-capable CPAP devices.

Is there any way you can change your doctor? Perhaps explain to him that if he won't go to bat for you to get a fully data-capable device (and pay attention to the data), then you really see no reason to give him more of your business? Until he loses enough patients he might not re-think his approach.

Your Sleep Apnea is especially severe. Since essentially this is your life which is at stake here, even if you need to save up several hundred dollars and buy a used but fully data-capable auto-titrating machine out-of-pocket, that would be better than dealing with an uncaring doctor who may only want you to come back every few months so he can make more money off you. Even if you were to pay out-of-pocket for a fully data-capable machine, probably he would at most look at the AHI numbers, and it is clear that even looking at AHI is "unnecessary" in his view. He will not invest a minute more in you than he considers is necessary to his welfare (not yours).

It is not like you are powerless here. A "Gently Used DS560 REMstar Auto AFLEX Machine without Heated Humidifier" (I think this is the Series 60 version which would use your present humidifier) is just $389 at Supplier #2. They would be happy to set it to your present prescription (CPAP mode with pressure of 13) and you or your new new doctor would have full data to optimize your treatment.

(07-29-2013, 01:48 PM)RonWessels Wrote: As well, feel free to set your CFlex setting to its maximum of 3. That provides exhale relief only, and does not interfere with your treatment. [ Actually, there is at least one study that says that it improves treatment. ]

I think Flex can improve AHI in many people, but I think this might only apply to people who are not very susceptible to CSA events. Many have found that their CAI becomes lower the less Flex or EPR they use, so they eventually learn to live without Flex or EPR.

(But especially in the beginning, it may be more important to use whatever amount of Flex or EPR is most comfortable.)

(07-29-2013, 01:48 PM)RonWessels Wrote: As for getting used to your mask, don't just wear it at bedtime. That is eating into valuable sleep time to acclimate yourself to the treatment. Wear the mask and turn the machine on while watching TV or some other distracting activity. Learn to treat the mask as your new normal.

(07-30-2013, 12:09 AM)Mark Risley Wrote: New users must get comfortable with the device. My advice is this. When you are wide awake and watching baseball on a Saturday afternoon, practice. Get your machine on your face and wear it, breath and watch tv. Do this often. Do it at night in bed even when you are not ready to fall asleep. Get comfortable with the device. One of these trials will find your fast asleep by accident!

Ditto.

Take care,
--- Vaughn
Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
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#14
Well, it is about 2 weeks later, and I have not used my CPAP in August. Life threw some stresses my way, work schedule got screwed up, and worst of all, I convinced myself that I was sleeping better. Having dreams and everything. I know I am only kidding myself.
Thanks for all the advice you gave me in the previous entries. I have read them again today and will refer to them. I am sorry for wasting your time this past few weeks. Now I will have to pretty much start from scratch...not gonna be fun, but it is exactly what I deserve.
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#15
I hope you manage to get in the habit of using your CPAP machine whenever you sleep.
Sleepster
Apnea Board Moderator
www.ApneaBoard.com


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.
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#16
3 weeks on the hose now AHI was 110 before I started and less than 1 now and I feel 100 % better. Still getting used to it so fingers crossed I stick with it. Found it difficult for the first few nights but getting used to it now. Great to be in the same bed as the wife every night too :grin: any advice would be appreciated nite nite Sleep-well
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#17
Chicobro, well done, 110 would have been murder, it was bad enough for me at 30+, you don't seem to need much advice at the moment, just try to do everything consistenly like you have been and follow good sleep hygiene and general health rules like exercising, it sound like another good news story
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#18
(08-12-2013, 06:41 PM)Chicobro Wrote: Great to be in the same bed as the wife every night too :grin: any advice would be appreciated nite nite Sleep-well

Keep up the great work! You'll continue to feel better and reduce the risk of cardiovascular disease.
Sleepster
Apnea Board Moderator
www.ApneaBoard.com


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.
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#19
Hi Chicobro,
WELCOME! to the forum.!
What Sleepster said.
Best of luck to you.
trish6hundred
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#20
(07-28-2013, 05:59 PM)artension Wrote: So.....I have had it a few weeks now, and have only used it 7 or 8 times. The most I have been able to wear it so far was 3 nights ago when I wore it for 45 minutes, and then, a few minutes later, for another hour. Why such a poor job?

I DO NOT want to give up on this.

Your are more wise than you know to not give up.

I've was diagnosed just 3-1/2 months ago, and started Bipap therapy 2-1/2 months ago. The hope here is to give your problem a little perspective. Maybe you will find a bit of your story in mine.

My dentist, on a routine visit, started asking me a bunch of questions to determine if I would be a candidate for a sleep study. Prior to her questions, I was fairly confident that sleep apnea was something other people had, and that I was just a light sleeper, and had been for decades. I only slept 4 hours at a time.

Well, the sleep study came back: Severe sleep apnea. Min SPO2 was 75, AHI was 57. My Apnea was severe. (Yours sounds worse).

Right away, because it was my dentist (and long time personal friend) who sent me to the sleep study, she called and told me that I was in danger and needed to get on a CPAP without delay. She suggested that I stop driving. She would discuss a dental appliance later. Right away, I enlisted the services of a pulmonologist (I didn't even know what that was a few weeks earlier) to (1) determine whether there were more serious underlying problems, and (2) write me a prescription for an Respironics Auto Bipap machine that I researched on the Internet in general and this forum in particular.

The pulmonologist at large California hospital, told me, "you know, that left untreated, your condition is fatal, but if you use this machine, you will feel like you're 10 years younger in just a short time. I promise." I felt like crap anyway, and took him at his word. After seeing my sleep study results, he asked me if the BIPAP I had chosen had a few key features (ramp, etc.) and wrote a prescription straightaway.

I took that prescription and purchased my Bipap machine outright, determined to mind my own risks and not screw around with others gate-keeping me and pinching pennies. For something this important, I reasoned, $1500 was a drop in the bucket. I'll figure out the insurance later. I needed to make the decision. The doctors and insurance companies were my helpers not my bosses.

I went on this forum to get a clinical manual so that I could adjust the pressures in my new machine. I started with pressures that the sleep study doctor had ordered. In a couple of weeks, I set it on auto, and dropped the pressure slightly, but kept minding my scores nightly.

The first night, I fought with that f@#@@J machine for about 4 hours trying to find out what it wanted. Being a problem solver by nature, and having the commentary from my pulmonologist regarding the high stakes involved, I figured I had two choices: (1) get along with this thing or (2) face the inevitable consequences. Option (2) didn't sound good, so I chose option (1) -- get along with the thing.

For the first few hours that Respironics DS760 was noisy and sounded asymetric. It rattled and complained. I kept saying to myself, "Just what does this stupid thing want?" After a few hours, I relaxed, let it fill my lungs completely, and just kept breathing out again and again. The machine breathed in. I breathed out. What a deal! Everything was quiet with a regular "beat".

Then with a ill-fitting mask, my nose started to ulcerrate. Another problem to be solved. Put silver laced sponge material over the ulcerated area, covered with a bandaid, and the mask on top. It started to heal quickly. But there were problems with the mask, and getting it to seal. In the meantime, get the right size mask with the help of a local DME dealer that a friend had recommended.

So, back to the forums. Another problem to be solved. Remember, Option (2) was just not on the program for me. Well the mask leaked like crazy. Well, tried some liners, and it still leaked some, but the farting noise stopped. OK. This got better with time.

A short time later, I visited my family physician of 30 years. He had only seen me awake and had missed my apnea. But when he saw my now burgeoning medical record, he said, "The results are unequivocal. You know, with SPO2's in the 70s, you can throw a clot even without blockage. If it lodges in your brain, it's a stroke, in your heart, it's a heart attack." So Doctor #2 had the same story as before -- Option (1) or Option (2).

Then I had aerophagia (air in the stomach). This was a hassle. But it's been abating slowly. Remember, Option (1) not Option (2).

Since receiving the machine, I decided on 100% compliance. This can be done. People do it all the time. If they can, I can too.

Consider. Choosing Option (2) means engaging hope and self-deception as a stragegy. Choosing Option (1), learning, growing, solving your problems, and choosing the longer term over today's comfort.

It's 90% attitude. I looked at it as choosing reason over self-deception. For me, this makes the answer simple: Option (1).

And the pulmonologist was right. I feel 10 years younger and it's just a short time later.

Here's just one person's story. There are many others on this forum with varied ones that may mesh with your own. Your story is being written in the flesh right now.

Oh, and by the way -- I used to occasionally have acid reflux. With a CPAP, that's a thing of the past.

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