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Newbie-Please look at my charts [Catathrenia]
#1
Newbie-Please look at my charts [Catathrenia]
I've used my machine for 10 nights straight, averaging 5 hours a night. I typically get around 7 hours of broken sleep. I have a rare sleep disorder called catathrenia.  I hold my breath, and then exhale very slowly for up to 30-45 (even 60) seconds with a groaning or squeaking sound. The machine seems to be unhelpful for these events despite what the research shows (that it can help catathrenia).

1. Please look at my overall chart and let me know how I can improve. The numbers don't look great to me. I appreciate any help so much!

2. I seem to be suffering from aerophagia. It's lasting all day and is incredibly uncomfortable and exacerbating IBS type symptoms. Keep this in mind when suggesting changes. Also, sometimes air bubbles/leaks out of my lips and sometimes I can't keep my tongue locked while I'm asleep.

   

3. I have attached 4 close-up charts of some events that look odd to me. I put the expiratory rate instead of flow limit, as this could be important if it is actually a catathrenia event. I don't know what a true apnea event looks like on a chart. Perhaps the machine is reading a catathrenia event as an OA. In actuality it would be closer to a central apnea (I know the machine can't register a CA).

4. A few times a night I wake up to me holding my breath and the machine on a higher pressure. The machine is reading this as an apnea increasing the pressure which doesn't stop the breath hold, but rather just wakes me up and makes me feel full of air and very panicky. Aside from an ASV, I know the machine can't do anything for me if I'm holding my breath. I don't know why I'm holding my breath. It could be the start of a catathrenia event.


   

   

   

   
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#2
Newbie-Please look at my charts [Catathrenia]
I don't have experience with the vauto and I don't know your history.  maybe aerophagia and ca are reasons you maintain a fixed cpap pressure.  more-experienced members may suggest using the vauto capabilities for a better outcome.  edit: I see now the fixed pressure is in your profile, not your chart; you might want to update your profile.

I just wanted to comment generally on breath holding etc.  I was diagnosed with ca in 1987 but wasn't offered any effective treatment until late 2016 after I had developed oa as well as ca.  before apap and asv treatments I used to describe my apnea as holding my breath.  also for a couple years before apap/asv I used a phone sleep app to monitor sleep and record noise.  I often heard my slow, slow, eerily slow exhale, usually accompanied by vocalization (moan, groan).  sometimes thrashing about could be heard.  these exhales would last longer than I would have thought humanly possible.  I didn't/don't know about catatherenia; I always thought of these as hypopnea.  but my point is that I think they all but disappeared with apap and I'm pretty certain they have with asv, suggesting that some form of properly tuned cpap should give you some relief.  wish I could offer a practical suggestion but I'm sure one of the resident experts will join in.
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#3
Newbie-Please look at my charts [Catathrenia]
(06-21-2019, 01:33 PM)sheepless Wrote: I don't have experience with the vauto and I don't know your history.  maybe aerophagia and ca are reasons you maintain a fixed cpap pressure.  more-experienced members may suggest using the vauto capabilities for a better outcome.  edit: I see now the fixed pressure is in your profile, not your chart; you might want to update your profile.

I just wanted to comment generally on breath holding etc.  I was diagnosed with ca in 1987 but wasn't offered any effective treatment until late 2016 after I had developed oa as well as ca.  before apap and asv treatments I used to describe my apnea as holding my breath.  also for a couple years before apap/asv I used a phone sleep app to monitor sleep and record noise.  I often heard my slow, slow, eerily slow exhale, usually accompanied by vocalization (moan, groan).  sometimes thrashing about could be heard.  these exhales would last longer than I would have thought humanly possible.  I didn't/don't know about catatherenia; I always thought of these as hypopnea.  but my point is that I think they all but disappeared with apap and I'm pretty certain they have with asv, suggesting that some form of properly tuned cpap should give you some relief.  wish I could offer a practical suggestion but I'm sure one of the resident experts will join in.

I fixed my profile. Thanks for pointing that out.

Your version of catathrenia is EXACTLY mine. Including the thrashing about (which is exactly what I call it!). So now you do know about catathrenia! I’m sorry it took so long for your sleep issues to get treated. I can’t imagine! I’m glad you have hope mine can be treated as well.

I’ve been having catathrenia since childhood but only during stressful times or when I was overly tired. It never seemed to interfere. I also have always snored with my mouth closed. My husband used to roust me during a groan, but I’ve moved to my own room to help get better sleep and in doing so get worse sleep because there’s no one to nudge me when I’m snoring or groaning. The irony! I have it sometimes 20+ times a night. How many for you untreated? Did you have bad effects from it? I feel like I do. They say it’s harmless but I disagree. The one night it never showed was my in-lab sleep study. I don’t have a sleep doctor currently. I bought my machine. I think it’s going to boil down  to me needing an ASV.
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#4
Newbie-Please look at my charts [Catathrenia]
I'm not sure I was ever aware of the catathrenia, if that's what it was.  I only know about it from some audio recordings during the worst of my untreated apnea.  at it's pre-cpap worst I was sleeping only 9 minutes at a time (only slightly tongue in cheek; I rarely exceeded an hour and almost never reached 2 hours without waking), groaned, mumbled, whined, swore, rolled back and forth, jerked spasmodically, and hit myself something awful in the struggle to breathe.  I had significant daytime dis- or in- abilities as well.  I don't think I can distinguish the effects of any particular element of my condition so I can't say how much the slow vocal exhale affected me.  if I had to guess I'd say the breath holding occurred quite frequently (I had central apnea after all) and the long slow vocal exhales maybe a few to a dozen or so times a night.  

my wife has taken up snoring with some enthusiasm over the last 10-15 years.  only in the last year or so have I noticed her having mild obstructive apnea.  but she tends to build up to a good snore, frequently beginning with vocalized exhales.  regular, not long exhales; I'll have to pay more attention but I don't think she's holding her breath before hand.  invariably the vocalizing would morph into full scale snoring.  not sure what that means exactly but it makes me think vocalizing is a precursor to snoring and maybe apnea. intuitively it seems to me that pressure keeping the airway open would help ease the vocalizing if not the breath holding.  I believe an asv would eliminate the breath holding, assuming the ca indicated in your chart is not treatment emergent.  

how long have you been papping?    did you have any clear airway or central apnea during your sleep study?  

you mention that you used to experience it when stressed.  it makes sense that we might respond to tension / anxiety etc. by holding our breath, awake or asleep.  that suggests a few avenues toward relief to explore (e.g., exercise, meditation, anti anxiety meds, etc....).

in your first post above you said: "4. A few times a night I wake up to me holding my breath and the machine on a higher pressure. The machine is reading this as an apnea increasing the pressure which doesn't stop the breath hold, but rather just wakes me up and makes me feel full of air and very panicky..."

I had runaway pressure quite a lot on apap; no more with asv.  I suspect your vauto can be adjusted better for you.  as I said I know little about the vauto but I have seen ca afflicted members coached to better results with the vauto they already had.  hopefully you will hear from the more-experienced folks soon and that will be your experience too.
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#5
Newbie-Please look at my charts [Catathrenia]
Bumping this thread.  
Bump2
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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.
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#6
Newbie-Please look at my charts [Catathrenia]
esme17,

Welcome to the Apnea Board. I know this probably won’t help right now, but FWIW I’ll be keeping tabs on this thread as ASV was mentioned. Since I’ve got that device, if/when needed or otherwise appropriate I could give pointers on obtaining the ASV and share experience about it. Like sheepless I’ve never been aware of your particular medical issue prior to now.

Again welcome and best wishes on success.

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#7
Newbie-Please look at my charts [Catathrenia]
Let's work on the theory that the throat collapses on exhale causing a restriction and the noise? This is because the PAP can't fix anything else that is doing it. To fix this you would increase the air splint pressure, that keeps your throat open.
I would raise the min epap to your 95% pressure of 8.6 and see if it helps. There is also a leak worth fixing. There are CA that also need to be observed.

My throat blocks then releases on exhale and this is how I resolved it. I kept increasing the min pressure/epap till it stayed open. I need a min pressure of 12
mask fit http://www.apneaboard.com/wiki/index.php...ask_Primer
For auto-cpap, from machine data or software. You can set the min pressure 1 or 2cm below 95%. Or clinicians commonly use the maximum or 95% pressure for fixed pressure CPAP, this can also be used for min pressure.
https://aasm.org/resources/practiceparam...rating.pdf
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#8
Newbie-Please look at my charts [Catathrenia]
Catathrenia is an issue that I have seen on the forum before, but have not researched for a cause or solution.  You are using a Vauto at 5.8 to 25 pressure and PS 3.  Based on the statistical median and 95% pressures, this seems like a reasonable range.   Have you tried adjusting cycle sensitivity?  Your machine can be adjusted to change the sensitivity for trigger and cycle, and Ti Control to manage the time of inspiration (Ti Max Ti Min).  The clinical manual for the Resmed Aircurve 10 S, Vauto and ST has a good discussion of these features and their use, and you should consider requesting this from the CPAP Setup Manuals link at the top of the page.

I am very unsure how to leverage these settings to assist you.  Your median respiratory statistics are a normal 18.4 BPM, and I:E ratio of 1 to 2.  The machine is reading a maximum expiratory time of 5.2 seconds, which is not abnormal, but according to your charts is probably an error. So let's discuss how we might use these settings to help, and also look closer at your comments about your experience with Vauto.  My inclination would be to set Trigger to Very Sensitive, and  Cycle to normal.  Your Ti Min can be left at 0.3, and the Ti Max should be around 1.6.


Quote:1. Please look at my overall chart and let me know how I can improve. The numbers don't look great to me. I appreciate any help so much!

Your AHI for the charts shows is less than 4 per hour, primarily OA and CA events from extended expiratory time. 



Quote:2. I seem to be suffering from aerophagia. It's lasting all day and is incredibly uncomfortable and exacerbating IBS type symptoms. Keep this in mind when suggesting changes. Also, sometimes air bubbles/leaks out of my lips and sometimes I can't keep my tongue locked while I'm asleep.

We will note the discomfort, and the leaks are not at a level that should interfere with normal therapy. 

Quote:3. I have attached 4 close-up charts of some events that look odd to me. I put the expiratory rate instead of flow limit, as this could be important if it is actually a catathrenia event. I don't know what a true apnea event looks like on a chart. Perhaps the machine is reading a catathrenia event as an OA. In actuality it would be closer to a central apnea (I know the machine can't register a CA).

The events are recorded as apnea because flow is less than 10% of normal minute vent. An apnea is classified as obstructive, when the pressure oscillation is interpreted as a closed airway, and as a CA when the FOT evaluates the airway is open.  I would think a slow steady expiration or groan would result in a CA event, while an OA is more likely if your tongue is blocking the airway or it is truly obstructed.  During either type of event, the Vauto will not change pressure or switch to IPAP, but will deliver the EPAP pressure throughout the event. 

Quote:4. A few times a night I wake up to me holding my breath and the machine on a higher pressure. The machine is reading this as an apnea increasing the pressure which doesn't stop the breath hold, but rather just wakes me up and makes me feel full of air and very panicky. Aside from an ASV, I know the machine can't do anything for me if I'm holding my breath. I don't know why I'm holding my breath. It could be the start of a catathrenia event.

As said above, the machine does not raise pressure until after the event.  You are experiencing the EPAP pressure during the event, and your maximum IPAP pressure appears to be about 11 cm. 

The definition of Catatrenia is:  a rapid eye movement sleep parasomnia consisting of end-inspiratory apnea (breath holding) and expiratory groaning during sleep.

Nearly all of the close-up charts you posted show an inspiration, followed by expiration and a CA or OA apnea.  In some cases there were inspiratory flow during the apnea event, that did not show expiration, and this would result in a breath-holding as you describe.  I think in most cases,  your are having apena at the end of expiration, and in every case you are at EPAP pressure.  You can see the actual pressure oscillation from IPAP to EPAP by using the Mask Pressure graph rather than the Pressure graph.

I think an in-clinic sleep study might be needed to confirm your self-diagnosis of Catatrenia. While your symptoms and experience may point to that, clinical observation could confirm this as a diagnostic that your doctor can act on.  Without that, I tend to agree with Ajack that we need to treat this as conventional obstructive sleep apnea, and centrals, that is generally within efficacy limits for CPAP treatment.  With that said, my recommendation for now is to moved to a fixed bilevel pressure to eliminate the variability of auto pressure, and to keep pressure out of the range where you complain of aerophagia.  My suggestion is S Mode at 9.0 IPAP, 6.0 EPAP, Easybreathe On, or Vauto at IPAP max 9.0, EPAP min 6.0, PS 3.0.   I don't know that this will make things a lot better, but it should make it easier to identify the problems.
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#9
RE: Newbie-Please look at my charts [Catathrenia]
Wow! This is wealth of knowledge. Thank you so much! I will try the settings you recommended until I get some good data, then I will post the charts here to see what you think. When I post the new charts, I will answer any questions or comments you had within your post. Again thank you! I really appreciate the help.
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#10
RE: Newbie-Please look at my charts [Catathrenia]
Thank you for your help. I’m going to try Sleeprider’s suggestion, then post the charts as soon as I have some “good” ones. I’d love to hear what you think about them. Thanks again!
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