Why doesn't APAP respond to apneas?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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OutaSync
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Re: Why doesn't APAP respond to apneas?

Post by OutaSync » Tue Oct 21, 2008 11:41 am

I thought nacolepsy was when you just fall asleep at inappropriate times. My mom falls asleep when we are talking to her. But I don't do that. I don't even take naps because I have that can't move when I wake up feeling and I always feel worse after taking a nap, so I just stay up until I can go to sleep for good.

Bev
Diagnosed 9/4/07
Sleep Study Titrated to 19 cm H2O
Rotating between Activa and Softgel
11/2/07 RemStar M Series Auto with AFlex 14-17
10/17/08 BiPAP Auto SV 13/13-23, BPM Auto, AHI avg <1

-SWS
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Joined: Tue Jan 11, 2005 7:06 pm

Re: Why doesn't APAP respond to apneas?

Post by -SWS » Tue Oct 21, 2008 11:53 am

OutaSync wrote:I thought nacolepsy was when you just fall asleep at inappropriate times. My mom falls asleep when we are talking to her. But I don't do that. I don't even take naps because I have that can't move when I wake up feeling and I always feel worse after taking a nap, so I just stay up until I can go to sleep for good.

Bev
That's stereotypical narcolepsy, Bev. And that stereotypical presentation of narcolepsy is highly atypical of many narcoleptic patients---perhaps most. There just may be a genetic component involved here if your mom is also experiencing what narcoleptic patients typically refer to as "sleep attacks". Okay, take the detour to very carefully review the possibility of narcolepsy with your doctor---thanks to SAG.
Last edited by -SWS on Tue Oct 21, 2008 11:54 am, edited 1 time in total.

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Snoredog
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Re: Why doesn't APAP respond to apneas?

Post by Snoredog » Tue Oct 21, 2008 11:53 am

OutaSync wrote:My sleep Dr. called me. He wanted to know why I had requested the raw data from the PSGs. I told that i suspected that the BiLevel titration was flawed because I had so much disturbance from the ill fitting mask that I was awake most of the night. He agreed, but said I was doing fine now. He said my tidal volume was fine and he would prefer that I set the SV to a Back-up of 8 or 9 because he did not understand how the auto worked.
He said "why don't you bring your machine in and we'll tweak it here".
I said "you mean an overnight titration?"
He said, "No, just bring it in and we'll adjust it.
" I said, "if I'm awake how are you going to know what to adjust it to? Can't you just give me the number and I can adjust it at home. The thing is huge and I don't want to move it"
He said, "All right, I'm just shooting in the dark here, but let's set the EPAP to 4."
I said," I thought the EPAP was supposed to be set to eliminate all apneas. "
He said ,"Well that would take 16/12."
I said, "Don't you think I should have a proper tiration?"
He said, "Yes, but I don't think your insurance will pay for it." Try these settings for a month and call me back to set up a face to face meeting. EPAP and IPAP at 7, Max IPAP 17"

They agreed to give me my data.

Bev
Most doctors would have developed a "chip" on their shoulder asking or probing for that raw data, your doc sounds like a pretty good guy and wants to work with you, I see that as a good sign. Be sure to remind him you are chasing that residual excessive daytime fatigue. He might have thought about putting you on the SV but couldn't due to Insurance limitations. I would take him up on his offer but I'd watch it a bit closer than call me in 30 days. SWS is probing the Sleep paralysis aspect a bit more for a better understanding, you may not realize you have a particular condition, I would send him the info via PM if you are more comfortable with doing that (I don't need to know nor do you need to discuss it in public, you are a real trooper as it is, a lot of people are learning from this, so thanks in advance), but I think you said those symptoms subsided after you went on CPAP. Many times the effects and symptoms of severe sleep deprivation "mimic" the symptoms of those found associated with narcolepsy and other disorders, cataplexy is just another aspect, SWS is simply trying to rule those out, what he was asking about doesn't necessarily occur in sleep, you could be at a party laughing. For example; say if you were at work or elsewhere and you got really excited/upset and had similar symptoms like Sleep paralysis but away from the sleep scene, you may feel like you would freeze for a few seconds during that period of adrenaline rush, this could happen just about anywhere, anytime usually associated with some kind of demonstration of emotion including periods of laughter. If you are easy going low key type person that may never show up.

Interesting though your doctor is suggesting much lower EPAP than even 9 we started with. That is of interest, but he could be on track with that (I wouldn't go down to 4 cm, but I would try 6.5, it certainly would help your aerophagia). While I think you have gone over the preverbal titration hill to the other side he may think along the same lines. This hill would show up on your APAP reports using Skinners AHI vs Pressure report. If it creates a bell curve and plots the AHI along the way, you have a dip before the bell curve and if you miss it you may not find it again until you get over the bell curve at the next dip and for some reason that seems to always have 16 cm pressure found as being good, but it doesn't remain stable for very long.

I wouldn't totally rule out your doctors suggestion, the game has changed now you are asking him pertinent questions and keeping him on his toes, I see that as a good thing.
someday science will catch up to what I'm saying...

-SWS
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Re: Why doesn't APAP respond to apneas?

Post by -SWS » Tue Oct 21, 2008 12:04 pm

Just to underscore that true cataplexy, unlike sleep paralysis and EDS, is pretty much exclusive to narcolepsy. And that apnea patients can also have narcolepsy.

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OutaSync
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Re: Why doesn't APAP respond to apneas?

Post by OutaSync » Tue Oct 21, 2008 12:09 pm

"For example; say if you were at work or elsewhere and you got really excited/upset and had similar symptoms like Sleep paralysis but away from the sleep scene, you may feel like you would freeze for a few seconds during that period of adrenaline rush, this could happen just about anywhere, anytime usually associated with some kind of demonstration of emotion including periods of laughter. If you are easy going low key type person that may never show up. "

I can't say that has ever happened to me. I do have what I assume is anxiety attacks where I get a rush of adrenaline and feel weak all over. That is what the lexapro was for. And sometimes I'm so tired I can't move, but if I wait a few minutes I'm okay. I've dozed off at seminars, but that is because they were BORING.

Bev
Diagnosed 9/4/07
Sleep Study Titrated to 19 cm H2O
Rotating between Activa and Softgel
11/2/07 RemStar M Series Auto with AFlex 14-17
10/17/08 BiPAP Auto SV 13/13-23, BPM Auto, AHI avg <1

jnk
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Re: Why doesn't APAP respond to apneas?

Post by jnk » Tue Oct 21, 2008 12:10 pm

Just a few quotes that may help:

From http://www.sleepdisorderchannel.com/nar ... ptom.shtml
. . . Some people may not actually fall asleep but struggle with extreme sleepiness throughout the day. . . .
. . . sleep pattern, which include an increased number of arousals, sleep maintenance insomnia, . . .
. . . Cataplexy, the most prevalent secondary symptom of narcolepsy, is almost exclusive to narcolepsy. . . . In mild cases, the loss in muscle strength can be quite subtle, . . . loss of muscle function may not be evident, and the patient may experience only a vague feeling of weakness. Cataplectic episodes usually last from a few seconds to 30 minutes; rarely does an attack last longer. . . .
. . . It is extremely rare for cataplexy to occur independently of narcolepsy. Indeed, excessive daytime sleepiness and cataplexy are sufficient for a diagnosis of narcolepsy. . . .
So it might be worth looking into.

I like it when Snoredog plays good cop.

Whatever we're paying SAG, it isn't enough.

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Snoredog
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Re: Why doesn't APAP respond to apneas?

Post by Snoredog » Tue Oct 21, 2008 12:12 pm

I'd take this up with SWS in a PM.
someday science will catch up to what I'm saying...

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OutaSync
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Re: Why doesn't APAP respond to apneas?

Post by OutaSync » Tue Oct 21, 2008 12:21 pm

I don't want to get diagnosed with narcolepsy. Won't they take away my driver's license? Isn't xPap supposed to help me sleep so I won't be so sleepy during the day.

I've often thought (and even said) that if anyone offered me a nice, soft, satin lined box to lie in, close the lid and I would sleep forever, I would take it. I'm always that tired.

Bev
Diagnosed 9/4/07
Sleep Study Titrated to 19 cm H2O
Rotating between Activa and Softgel
11/2/07 RemStar M Series Auto with AFlex 14-17
10/17/08 BiPAP Auto SV 13/13-23, BPM Auto, AHI avg <1

-SWS
Posts: 5301
Joined: Tue Jan 11, 2005 7:06 pm

Re: Why doesn't APAP respond to apneas?

Post by -SWS » Tue Oct 21, 2008 1:03 pm

You may very well not have narcolespy, Bev. If you have narcolepsy, I can very easily see how your sleep doctor would have missed it with your lacking SOREM periods. SAG points out that Lexapro may have artificially suppressed sleep-onset REM periods. There are plenty of other reasons that a narcoleptic might not present SOREM periods in a sleep study. If that's genuine cataplexy you're experiencing (and it may not be) then you are probably narcoleptic.

Your mom may simply be falling asleep because she has EDS unrelated to narcolepsy. She may have terrible sleep architecture herself because of pain, apnea, RLS/PLM, etc. However, ask your mom if she quickly enters a dream state when she unexpectedly falls asleep in the daytime that way. If she does quickly enter a dream state, then she is probably experiencing SOREM periods typical of narcolepsy. I'd ask her about other symptoms typical of narcolepsy as well:
http://med.stanford.edu/school/Psychiat ... ptoms.html

Lastly, there's a genetic marker test that is often used to help diagnose narcolepsy:
http://med.stanford.edu/school/Psychiat ... aq1.html#6

---------------------------------------------------------

So you can have apnea and narcolepsy. And xPAP will address the apnea only. So what was your untreated AHI? Let's make sure you belong on CPAP. It's highly unlikely but perhaps possible that unneeded CPAP is inducing your AHI here.

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Snoredog
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Re: Why doesn't APAP respond to apneas?

Post by Snoredog » Tue Oct 21, 2008 1:18 pm

OutaSync wrote:I don't want to get diagnosed with narcolepsy. Won't they take away my driver's license? Isn't xPap supposed to help me sleep so I won't be so sleepy during the day.

I've often thought (and even said) that if anyone offered me a nice, soft, satin lined box to lie in, close the lid and I would sleep forever, I would take it. I'm always that tired.

Bev
They can if your doctor can't show it is controlled. Once a diagnosis is rendered, your doctor may have no choice in the state you live to report it to DMV. It can also make it nearly impossible to obtain health insurance in the future and/or if you do obtain it, cost a lot more. Same for Life Insurance. It is a diagnosis you really don't want to have, but they have medications which can help you tolerate it better.
someday science will catch up to what I'm saying...

jnk
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Re: Why doesn't APAP respond to apneas?

Post by jnk » Tue Oct 21, 2008 1:20 pm

Bev,

As the experienced posters said, you may not have it. Or it may be very, very mild. But as for one of your questions of concern . . .
OutaSync wrote:. . . Won't they take away my driver's license? . . .
. . . here is a quote from the National Sleep Foundation:
"Diagnosed and medically treated persons with narcolepsy appear no more at risk for crashes than the general public. If your state restricts driving by people with narcolepsy, proving that you can remain alert may help you get (or keep) your driver's license. This may require a letter from your doctor, whom you should keep informed about your ability to drive safely."--http://www.sleepfoundation.org/site/app ... 7D&notoc=1
The same applies in some states to a diagnosis of sleep apnea, for that matter.

But I'll leave the rest to the experienced posters, who, in my opinion, have ALL done a beautiful job in their helping you. Few people on the planet have the benefit of the kind of insightful friends you have here, seems to me.

jeff

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OutaSync
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Re: Why doesn't APAP respond to apneas?

Post by OutaSync » Tue Oct 21, 2008 2:14 pm

I've only seen my mom (who is 85) a few times since I was 16, since she lived in Taiwan and only came to the US about 10 years ago and lives in another state. I remember, as a child, when she would read to us, she would fall asleep in the middle of a sentence. She always has her tatting (hand made lace)in her hands( which takes a lot of dexterity) and she can fall asleep and a few seconds later keep on tatting right where she left off. She will never admit that she has fallen asleep. But, I'll ask her anyhow.
"Once a diagnosis is rendered, your doctor may have no choice in the state you live to report it to DMV. It can also make it nearly impossible to obtain health insurance in the future and/or if you do obtain it, cost a lot more. Same for Life Insurance."

That's a good reason, right there, to not mention anything to my Dr. I think I just have symptoms of poor sleep. Even when I sleep 12 hours I don't feel rested. And, yes, Snoredog, I don't do that anymore. I set an alarm for Saturday and Sunday. Ten hours max
I don't remember what my preCPAP score was. It was mild, as I recall


Bev
Diagnosed 9/4/07
Sleep Study Titrated to 19 cm H2O
Rotating between Activa and Softgel
11/2/07 RemStar M Series Auto with AFlex 14-17
10/17/08 BiPAP Auto SV 13/13-23, BPM Auto, AHI avg <1

-SWS
Posts: 5301
Joined: Tue Jan 11, 2005 7:06 pm

Re: Why doesn't APAP respond to apneas?

Post by -SWS » Tue Oct 21, 2008 2:47 pm

We can see an untreated AHI of about 15 at 0 cm pressure here: 152.6 minutes total recording time at 0 cm

CPAP sounds warranted. And there are plenty of symptoms that sort of sound like cataplexy that really aren't cataplexy after all.

Wonder if Walgreens carries over-the-counter tests for either CSF hypocretin levels or HLA subtype DQB1*0602 yet... (just kidding)

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OutaSync
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Re: Why doesn't APAP respond to apneas?

Post by OutaSync » Tue Oct 21, 2008 5:58 pm

My SV is version 1.3
Diagnosed 9/4/07
Sleep Study Titrated to 19 cm H2O
Rotating between Activa and Softgel
11/2/07 RemStar M Series Auto with AFlex 14-17
10/17/08 BiPAP Auto SV 13/13-23, BPM Auto, AHI avg <1

-SWS
Posts: 5301
Joined: Tue Jan 11, 2005 7:06 pm

Re: Why doesn't APAP respond to apneas?

Post by -SWS » Tue Oct 21, 2008 7:51 pm

OutaSync wrote:My SV is version 1.3
Would other AutoSV owners/clinicians mind chiming in if they have a firmware version later than 1.3? Thanks.

Sure hope version 1.3 is bluetooth, firewire, SATA, USB2, and 64-bit Vista compatible...