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If Apnea were Hell, I could sure use a Virgil...

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If Apnea were Hell, I could sure use a Virgil...

Postby mothersongbird » Sat Mar 31, 2012 2:58 pm

Hi, everyone! I've been reading this forum for the last day or so, just to make sure I don't ask a repeat question. Still, I wanted to come out of the woodwork because even some of the really basic stuff is over my head.

I thought I knew about sleep apnea. My mother has it something fierce. I used to wake her up all the time because she'd stop breathing long enough that it worried me. My maternal grandmother had it equally bad, but she had a CPAP machine. Then my mother remarries and her husband has it, but I've never known him without the machine. The only other young person I know who has sleep apnea is over 500lbs. So I thought I knew. If you had apnea, you had to sleep with a mask and a hose and you couldn't move around much. If you had apnea, you were too fat to sleep like a normal person.

I lost 120 lbs after lap-band surgery. No more high blood pressure. No more "pre-diabetes". I'm still obese, but all those medical issues just rolled off me. Only now, what was formerly a collection of non-weight-related quirks has become disruptive and driven me to have a sleep study, and part of the results indicate that I have "mild sleep apnea". That's tacked on to a larger diagnosis of narcolepsy, but I don't think the two are related. If anyone knows/suspects/opines differently, please share! I am as unversed in narcolepsy as I am in sleep apnea.

My doctor showed me some of my report. I never woke up. I'm assuming that means I never stopped breathing enough that I roused. Aside from my REM bursts, what he talked about were my O2 levels. They dipped down to 89 a couple times and once to 79 before they put the mask on. I'm assuming that's what categorizes "mild" because I can't find any info on diagnostic criteria.

He also said I tolerated the full mask in the study. Of course, after a panic attack using the nasal pillows, "tolerated" doesn't carry a whole lot of meaning for me. Still I asked the tech if I could at least try the pillows again. The less equipment and drugs and interference the medical world has in my life, the better. Considering my current medical problems, I'll settle for a slightly less cumbersome mask. That leads me to my first question:

How long should I give myself to get used to a setting, a mask, the machine, etc?

Some people are saying a month. I don't have a month. I feel miserable now. My mother, her husband, my grandma, my friend, all said they felt better immediately and would never go off the machine. And it's not just waiting to feel better. I actually feel worse.

I haven't slept through the night in 3 nights. I never have problems sleeping. Ever. While I'm waiting for insurance to approve the narcolepsy medication, I'm on inadequate medication for the daytime sleepiness. So further complications to my sleep are not being "tolerated" very well. I also despise sleeping on my back, but if I sleep on my side or my stomach, the mask shifts and leaks. So I wake feeling stiff and uncomfortable and slightly panicky. And with a glorious headache. I've also been congested since using the CPAP machine. The day after my sleep study, I was stopped up all through the daytime nap test. I've also had nasal and chest congestion every day since receiving the machine. I was thinking it could be because spring is here, but I've never had allergies, and I don't believe in coincidence. I'm also waking feeling bloated. Because of my lap-band, I'm more prone to feeling some tightness in the mornings anyway, but it's been exaggerated lately so that I can't even drink my breakfast shake until I've been up about 4 hours.

So has anybody had these kinds of experiences starting out? Do they go away? How long does it take? Is there something I should try to adjust with the machine? Is there something I should adjust about myself? If my apnea is mild, is it likely to go away if I lose the rest of my extra weight?

Is there anybody here who has experience with narcolepsy and CPAP? Lap-band and CPAP? Being 25 and CPAP?

Between the interrupted sleep, panic, body aches, headaches, congestion, and bloating, I think I'd rather just have apnea. The very idea of CPAP making my sleeping worse seems like anti-depressants causing depression, but I'm determined to stick it out as long as I can. As unsexy as it is to bring someone home and see a Hannibal Lecter mask hanging from my headboard, getting fired for falling asleep at work is even less attractive. I just need to know what direction to go in with all this to make it work.

Aside from all that, is there some sort of sticky post on one of the boards that can explain all these abbreviations and technical terms? I don't see my doctor for another month, and I want to be able to kick this around with him.
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mothersongbird
 
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Machine: ResMed S9
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Year Diagnosed: 2012

Re: If Apnea were Hell, I could sure use a Virgil...

Postby Linda » Sat Mar 31, 2012 3:36 pm

We have a list around here somewhere, but for now, here is a link to some sleep terms:
http://www.ucmc150.uchicago.edu/sleep/terms.html
Here is a link to a more extensive listing of sleep study terms:
http://www.sleepnet.com/definition.html

Did you get a copy of your sleep study report? If not, I urge you to ask for one, those reports give a lot of detail about your condition. I'm guessing there are separate summary reports for the overnight sleep study and the daytime narcolepsy study.

I don't have many answers for you, especially since your sleep apnea is compounded by the narcolepsy issues, so perhaps others here might have more information.

The answer to how long does it take depends. Not the answer you want to hear. But not everyone has that wow, immediate improvement of symptoms. Some feel it immediately and dramatically, some feel it gradually over time, and still others don't feel a difference until a time when suddenly they feel improvement. And keep in mind that I'm referring to treating the sleep apnea, I don't know much about narcolepsy. But success with CPAP depends on your comfort level with the mask and machine, how often you're able to sleep with it, whether you have the appropriate and best fitting mask for you, and a little hopefull attitude thrown in for good measure. That's why it's good you're asking questions. This is a time to be watching for improvements, and to get any issues with breathing with the machine and mask worked out. And follow-up appointments are important too.

Understand your sleep study results can help.

And welcome to the forum!


Linda
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Re: If Apnea were Hell, I could sure use a Virgil...

Postby mothersongbird » Sun Apr 01, 2012 12:05 am

Hi, Linda! Thanks for the links! The sleepnet list was especially useful. I've got an even longer list of questions now for the tech at the sleep center. I can't do anything about the narcolepsy as long as the insurance company is pitching its little hissy fit, but I can do something about this.

I'm trying to figure out if I have APAP, BPAP, or CPAP. Lots of letters, sheesh... My doctor told me that the machine senses when I'm breathing out and lessens pressure. Is that BPAP? Because I don't notice a change in pressure. Nor do I see a change in pressure on the machine. I sat and watched it for a few minutes. He also said that the machine would sense when I needed more pressure and give it to me. Is that APAP? Not terribly sure it matters- I'm just curious.

I read the manual cover to cover, but I can't seem to find an option on ramping. Is this something I have to have turned on or does it just not come on all models? With all the stuff this machine is supposed to do, I want to see if it will make me breakfast or send my faxes. :roll:
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mothersongbird
 
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Machine: ResMed S9
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Year Diagnosed: 2012

Re: If Apnea were Hell, I could sure use a Virgil...

Postby robysue » Sun Apr 01, 2012 11:14 am

mothersongbird,

I'm sorry that things are going so rough for you. It took me a very, very long time to start feeling better with PAP than without it----as in months and months. But perseverance does pay off and now PAP therapy is finally a net positive in my life rather than a negative.

mothersongbird wrote:I'm trying to figure out if I have APAP, BPAP, or CPAP. Lots of letters, sheesh... My doctor told me that the machine senses when I'm breathing out and lessens pressure. Is that BPAP?
Chances are the doc means that your machine has something called EPR (Exhale Pressure Relief) on it. Chances are he assumes the tech turned it on OR set the machine up so that you can turn it on.

Because I don't notice a change in pressure. Nor do I see a change in pressure on the machine. I sat and watched it for a few minutes.
Even when EPR is turned on, the machine is only going to tell you what the current pressure setting is when you are breathing through the mask. As for noticing a change in pressure: Some people notice it right away and others don't. Some only notice the EPR-drop in pressure after they've compared how it feels to breath against the machine when EPR is turned completely OFF. The whole idea behind EPR is to make it easier to exhale, not to make the drop in pressure so noticeable that it calls attention to itself. More on this later.

He also said that the machine would sense when I needed more pressure and give it to me. Is that APAP? Not terribly sure it matters- I'm just curious.
Since the machine is supposed to figure out when you need more pressure, my guess is that you've been set up with an APAP machine. (But is it the Escape Auto or the AutoSet? Makes a big difference in the data that's recorded.)

I read the manual cover to cover, but I can't seem to find an option on ramping. Is this something I have to have turned on or does it just not come on all models? With all the stuff this machine is supposed to do, I want to see if it will make me breakfast or send my faxes. :roll:

You need to get to the point where you feel as though CPAP is something that you choose to do for your health rather than feeling like CPAP is something being done to you. One stop in that process is learning about your equipment and your prescription.

So: Call the sleep doc's office on Monday and ask exactly how your prescription worded. In particular, you want to know what your prescribed pressure is and whether it is a fixed number (7cm) or a pressure range (4-10cm) Ask for a copy of your prescription by the way. You might need it at some point in the future.

Now to get much more comfortable with and more knowledgeable about your machine, do the following far away from bedtime:

1) Unplug the machine and take the humidifier tank out. (Dump the water while you're at it and maybe even wash the humidifier tank.) With the humidifier tank out of the machine, you can turn it every which way.

2) Turn the machine over and examine all four sides. Write down all the information you find listed on the machine's various tags even if you don't fully understand what they mean at this point. Locate the slot for the SD card. Pop the SD card out and put it back in. Practice taking the humidifier and the blower apart and putting them back together. Find out where the air filter is. Take it out and put it back in.

3) Turn the machine back upright and look carefully at the top of the blower unit. Somewhere near the On/Off button the machine should say one of the following: Escape, Elite, Escape Auto, or AutoSet. There's also a small chance that it says VPAP S or VPAP Auto. This is the name of the model of the S9 series that you are using. Write this down. The capabilities of the machine depend on the model name. Once you know what the model is, post here and we'll tell you what kinds of information you can get off the machine's LCD.

4) Now put the machine back together. Put water into the humidifier tank. Now plug the machine back in and let it boot up. And attach you hose and mask as usual. You should see the Home screen on the LCD. On the LEFT side of the LCD you should see a House icon, a Tear Drop/Tear Drop with Thermometer (Humidifier/Climate control) icon, and a Triangle (Ramp) icon. On the RIGHT side of the LCD there is the Info button and Set up button that has two check marks on it, along with the so-called Push Dial---the large button that twists and can be pushed into to select a menu item. On the home screen, these buttons are labeled.

5) Turn the Push Dial. Watch how the House icon is unselected and the Ramp icon is selected. Click when the Ramp icon is selected. And the LCD display should change to the Ramp set-up menu.

IMPORTANT NOTE ABOUT RAMPING: If your pressure is set to 4cm OR if you are using an Auto range where the minimum pressure setting is 4cm, then the ramp will be disabled. The reason why is simple: The minimum, initial ramp pressure is 4cm. So if you are starting out at 4cm, there's no where to ramp up to.

You will see the Ramp icon with a Ramp time listed. By turning the Push Dial you can increase or decrease the Ramp time. (You are not allowed to change the initial Ramp pressure; that can only be changed from the clinical menu.) Once you have the desired ramp time showing in the window, click the Push Dial to select the Ramp time. The Ramp will come on anytime you turn the machine on. If you wake up in the middle of the night and want to turn the ramp on, just hit the power button twice---once to turn the machine off and then to turn it back on. If there is no Ramp icon on the Home menu, that means the tech who set up the machine locked you out of controlling the ramp. You need to take the machine back to the DME and have the tech unlock the ramp setting.

6) Once you are back to the Home menu, use the Push Dial to select the Humidifer/ClimateControl icon. What you see here will depend on whether you are using the ClimateLine heated hose or just the default SlimLine hose. Play around with the settings for a few minutes and go back to the original setting. If you decide you need more/less humidity or a warmer/cooler air temp, this is where you set them. Notice that to pre-warm the humidifier, you can press the On/Off button and hold it down for 3 seconds.

7) Now push the Info button by itself. The icons on the left side of the screen should change. Step through each of these icons using the Push Dial to select them. You'll be able to get at the Short version of the Sleep Quality report from this menu, among other things. If the Sleep Quality menu does NOT show an AHI value, then the tech has locked you out of your own data OR you have an S9 Escape. If you see an AHI value, the tech has given you access to the therapy data recorded by the device. If you want more data than is shown on the short Sleep Quality report and your owner's manual is confusing, post here and we'll let you know how to get to it.

8) Now push the Set-up button by itself. The icons on the left side of the screen should change. As you step through the icons on this screen you will have the option to change the patient comfort settings the tech has allowed you to change. Since you are switching back and forth between two mask types, the mask type setting is important to know about. Other options the tech may have allowed you to change include: Ramp time (if you're not starting at 4cm), hose type, the EPR level, the ClimateLine settings, the Mask Fit, and SmartStart settings. Before changing any of these settings, write them down. That way if the change makes you less comfortable, you can always change it back.

NOTE ABOUT EPR: You've asked specifically about EPR---the setting that allows the machine to drop the pressure when you start to inhale. If your initial starting pressure is 4cm, then EPR will not kick in until the machine raises the pressure: The minimum pressure at all times will be at least at great as 4. And that may explain why you are not noticing any pressure drop. Once your pressure has been adjusted up to 5, the EPR will provide a 1cm drop (back down to 4cm) on exhale. If we assume that EPR = 3, then once your pressure is increased to 6, the EPR will provide a 2cm drop on exhale. And once your pressure is increased to 7 (or more), the EPR will provide a 3cm drop on exhale.

If the tech has allowed you to control the EPR, you will see a menu item for EPR under the Patient Set up Menu that is one of the items you should see when you press the Set up button. If EPR is not set to 3, then increase it to 3 and see if you can then feel the drop in pressure when you are exhaling. If EPR is already set to 3, turn it off (i.e. set it to 0), and see if you notice a difference when you are exhaling again. But keep in mind, that if your pressure is currently at a level less than 7, the pressure will NOT drop below 4cm on exhale.

Best of luck
current settings Min EPAP = 4, Max IPAP = 8 and Rise time = 3

8/1/2010 sleep study results:
AHI = 3.9 [AHI = (#OA +#CA + #H w/desat) per hour]
RDI = 23.4 [RDI = (#OA +CA + #H w/desat + #H w/arousal) per hour]
Dx: Moderate OSA
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Year Diagnosed: 2010

Re: If Apnea were Hell, I could sure use a Virgil...

Postby Mobytheminnow » Sun Apr 01, 2012 10:11 pm

If you get congested take the white filter off the Cpap and just use the foam one some are allergic to it like me.
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Re: If Apnea were Hell, I could sure use a Virgil...

Postby mothersongbird » Thu Apr 12, 2012 8:31 pm

Oh, wow. Since my last post, I went to the sleep tech and asked him a few things. He suggested I go off the machine for a little bit and wait until I started my new meds for narcolepsy. I was getting ready for holy week, and the choir rehearsals are already tiring. Now that I've been on new meds for a week and the season is over, I'm going to start back tonight. Maybe it'll be better.

The screen says "AutoSet" when I turn it on. And it's at 8.0. I've taken the thing apart and put it together and flipped through all the menus. Unfortunately, no ramping options or access to the reports or EPR options. I think I've gotten the low-tech, hands-off version of machines. Now that I've gotten a week of sleeping through the night and medication in the day, I feel a little more determined to try this again until my next appointment in a couple weeks.

I really appreciate all the info. When I go back into the doctor, I feel like I can ask about all these things that might make this more possible.
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mothersongbird
 
Posts: 6
Joined: Sat Mar 31, 2012 1:02 pm
Location: Nashville
Machine: ResMed S9
Mask: SwiftFX Pillows/Mirage Quattro Face
Humidifier: H5i
Year Diagnosed: 2012

Re: If Apnea were Hell, I could sure use a Virgil...

Postby robysue » Thu Apr 12, 2012 9:01 pm

mothersongbird wrote:The screen says "AutoSet" when I turn it on. And it's at 8.0. I've taken the thing apart and put it together and flipped through all the menus. Unfortunately, no ramping options or access to the reports or EPR options. I think I've gotten the low-tech, hands-off version of machines. Now that I've gotten a week of sleeping through the night and medication in the day, I feel a little more determined to try this again until my next appointment in a couple weeks.

Since the screen says AutoSet, you've got the top of the line, full efficacy data, APAP on the market.

But the tech who set your machine up locked you out of all the goodies. And indeed, if there's no access to reports, then the tech has also set this state-of-the-art machine to run like a lowly brick and record nothing but compliance hours.

Since turning on the sleep quality report and gaining access to the ramp and EPR require going through the clinical menu, take the machine back to the DME and tell them that you want them to set the machine up so that you have full access to your efficacy data (AHI and leak data) and that you want full access to the patient comfort features including both the ramp and EPR. These are all things that can and should be set to in such a way to give the patient access. If the DME gives you grief, call your sleep doc's office and tell them that the DME will not set your machine up to record the efficacy data and that they have also prevented you from being able to use both the ramp and EPR. And tell the doc's office that you believe these features will help you become more compliant in both the long and the short run.
current settings Min EPAP = 4, Max IPAP = 8 and Rise time = 3

8/1/2010 sleep study results:
AHI = 3.9 [AHI = (#OA +#CA + #H w/desat) per hour]
RDI = 23.4 [RDI = (#OA +CA + #H w/desat + #H w/arousal) per hour]
Dx: Moderate OSA
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robysue
 
Posts: 1330
Joined: Tue Aug 24, 2010 6:47 pm
Location: Buffalo, NY
Machine: PR System One BiPAP Auto
Mask: Swift FX for Her
Humidifier: System One Heated Humidif
Year Diagnosed: 2010



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