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APAP & Mask Help for Catathrenia

This area is for CPAP Mask and CPAP Machine Related Questions used in the treatment of Sleep Apnea.


APAP & Mask Help for Catathrenia

Postby PatrickCT » Wed May 21, 2008 10:06 am

Since Catathrenia isn't considered a disease yet, it is not covered by insurance. That means no titration study and no mask fitting since I'll be paying for everything out of pocket.

I'm looking for some "best bet" recommendations for an APAP machine and interface.

So far, I'm leaning towards an Respironics M Series Auto A-Flex with the heated humidifier, but I'm really stuck on the type of mask to get.

If it helps, I'm a stomach/side sleeper.
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Postby Vicki » Wed May 21, 2008 10:29 am

I didn't know what Catathrenia was so the definition from the American Sleep Association (not us the American Sleep Apnea Association) follows for anyone who needs info. also. The description mentions PAP use in the last sentence.

Patrick, I have several thoughts and questions since your condition is completely opposite what we experience. There will be others who can talk about masks for stomach sleepers, but I believe most masks work on your side (everyone will correct me if I am wrong).

You need to be seeing a doctor who is accredited in sleep disorders by the American Board of Sleep Medicine. Call them to find someone near you, www.absm.org. Since you groan when you exhale, do you open your mouth? If you do, then you will need a full face mask to maintain your airway pressure on exhalation. Also, confer with your doc. but I don't believe APAP mode is what you should be running. You can run your PAP in CPAP mode and I believe you should. The algorithms for all APAPs are designed to detect inhalatory apneas and air flow decreases. The algorithm will not work properly in your case where your issue is during exhalation. Maintaining a constant pressure will.

Vicki

Catathrenia Definition from the ASA:
Catathrenia, or nocturnal groaning, is a relatively rare and undocumented parasomnia, in which the subject groans during their sleep - often quite loudly. This disorder is long lasting, and seems to occur nightly in most people. It can occur during any stage of sleep, but seems to happen with the most frequency during REM or deep sleep. It can come and go during the night, and restless sleep with a lot of tossing and turning may actually ward it off, as it’s been documented that subjects who move around a lot experience breaks in the groaning after shifts in position. This also may tie into the contention that it occurs mostly during deep sleep.

Contrary to snoring which occurs during inhalation, groaning occurs during exhalation, and one groan can last as long as 30 seconds. The groans are usually succeeded by a snort or sigh at the end. Groaning usually comes and goes in stretches, with any one stretch lasting as long as an hour.

Groaning is not related in any way to sleeptalking. It has also shown no connection to general breathing problems or sleep related breathing problems, any abnormal brain activity or mental disorders, or any other sleep related disorders in general. What causes the groaning in people is still a relative mystery.

The groaning bears no connection to any mental anguish or dream state the person may be in, a common misconception. Though people in these states have been known to make small groaning noises, they are not related to catathrenia. Other sleep related groaning type noises that could be misinterpreted as catathrenia include some types of snoring, and the moaning noises that may be made during an epileptic seizure. People with catathrenia usually have calm facial expressions and peaceful sleep despite the noise. The easiest way to distinguish snoring from catathrenia is that snoring occurs while inhaling, and groaning while exhaling. A careful examination of a partner’s breathing pattern in conjunction with the noises should be able to clarify which of the two it is.

Most people with catathrenia are not bothered by their own groaning, and will not rouse due to it, though it may be quite loud and potentially sleep disturbing to a bed partner. Most people with catathrenia will not even be aware of the disorder unless told by a bed partner, and likely will not believe the partner when told. Groaning appears to affect more males than females, and can start at any age. It appears in most cases that the groaning remains for many years. Subjects may wake up with sore throats the next morning, depending on the extent of the groaning the night before.

As the catathrenia has little to no effect on a person’s sleeping quality, and bears no connection at present to any other disorders that may be causing it, or that it may lead to, it may be unnecessary to have it looked into. If the disorder is causing distress to a bed partner, the easiest course of action may be for the partner to wear ear plugs while sleeping.

If it is decided to have a doctor look into it, they will need to know to the best of your knowledge when the groaning started, any medications you may be taking and any other sleeping disorders you may have. There is some thought that medication use may cause catathrenia in some patients, but there are no statistics to support this yet.
You may be asked to take an overnight sleep study to give the doctors a sense of the severity of the groaning, and to help detect any other sleeping disorders that may be present. As catathrenia is considered separate from other disorders, and unrelated to any other medical issues, this may be unnecessary.

There is limited data on effective treatment plans, but there is some evidence to suggest that positive airway pressure (PAP) may be beneficial in limiting the frequency and ferocity of catathrenia.

Reviewed September, 2007
Being defeated is often a temporary condition. Giving up is what makes it permanent.
Marilyn Vos Savant

That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.
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Postby PatrickCT » Wed May 21, 2008 10:51 am

Yes, Catathrenia acts like an obstruction on exhalation. The APAP was suggested by my doctor after my initial sleep study, but you make a good point about how it works. My doctor has been certified by the American Board of Sleep Medicine, but even he admits this is his first diagnosis of Catathrenia. Now I wonder if I should avoid anything with exhalation relief.

Right now, the only person that is close to an expert on Catathrenia is Dr. Christian Guilleminault. Unfortunately, he's in CA while I'm in CT. I wish I knew what he used in the following study.

http://www.journalsleep.org/ViewAbstrac ... ionid=3456

I do occasionally open my mouth when I sleep, so it looks like it'll be some sort of full face mask for me.
Last edited by PatrickCT on Wed May 21, 2008 12:07 pm, edited 1 time in total.
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Postby PatrickCT » Wed May 21, 2008 11:02 am

Vicki wrote:As the catathrenia has little to no effect on a person’s sleeping quality, and bears no connection at present to any other disorders that may be causing it, or that it may lead to, it may be unnecessary to have it looked into. If the disorder is causing distress to a bed partner, the easiest course of action may be for the partner to wear ear plugs while sleeping.


This information may be dated. I just wanted to add, at least in my case, this is completely untrue. Depending on severity, just like OSA, Catathrenia and Sleep Apnea share the same symptoms.
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Postby Bearded One » Wed May 21, 2008 1:00 pm

Even though you may occasionally sleep with your mouth open without CPAP, it is possible that you will not mouth breath with CPAP. When I had my most recent sleep study, two different sleep technicians said that CPAP can help you to keep your mouth closed while you sleep. I have no idea whether there is any basis for them to say this or not.
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Postby PatrickCT » Wed May 21, 2008 1:22 pm

Bearded One wrote:Even though you may occasionally sleep with your mouth open without CPAP, it is possible that you will not mouth breath with CPAP. When I had my most recent sleep study, two different sleep technicians said that CPAP can help you to keep your mouth closed while you sleep. I have no idea whether there is any basis for them to say this or not.


Hmmm, I'm not a mouth breather at night. The only time I actually open my mouth (I'm told), is when I exhale after an extended breath hold.

I suppose I should play it safe and for my first mask, get a full face one.
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Postby Vicki » Wed May 21, 2008 3:10 pm

I am sure you realized that the info. was from the ASA and not me. It sounds like it disrupts your sleep plenty.

I would think that exhalatory relief would be contradicted in your case. Like I said, I would think a constant pressure would serve you best.

Another thought. Groans usually involved opening your mouth as do sighs. If the sounds you make include opening your mouth, then you need a full face mask to maintain the pressure. I don't think most people sigh and then take a breath through their nose. I would think that that is the theory as to how a CPAP would help in your situation.

What did they see you doing during your sleep study?

Vicki
Being defeated is often a temporary condition. Giving up is what makes it permanent.
Marilyn Vos Savant

That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.
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Postby PatrickCT » Wed May 21, 2008 3:28 pm

Vicki wrote:I am sure you realized that the info. was from the ASA and not me. It sounds like it disrupts your sleep plenty.

I would think that exhalatory relief would be contradicted in your case. Like I said, I would think a constant pressure would serve you best.

Another thought. Groans usually involved opening your mouth as do sighs. If the sounds you make include opening your mouth, then you need a full face mask to maintain the pressure. I don't think most people sigh and then take a breath through their nose. I would think that that is the theory as to how a CPAP would help in your situation.

What did they see you doing during your sleep study?

Vicki


Sorry, yeah... I knew it was from the ASA.

Groaning isn't my primary concern, although it is annoying. I take a deep breath through my nose, hold it for 30 seconds to well over a minute, then slowly exhale through my nose while making a low humming/groaning sound. Unfortunately, we didn't get oxygen desaturation values during my study. I was so uncomfortable and in such a light sleep that my own moaning startled me awake.
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Postby PatrickCT » Wed May 21, 2008 8:18 pm

Talked with a "witness" to my breathing. She says I do exhale through my mouth...
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Central Sleep Apnea

Postby EricBWI » Wed Jun 04, 2008 4:03 pm

I was just diagnosed with catathrenia today and found your post in my search for more information. My doctor also diagnosed me with central sleep apnea, which differs from obstructive (the more common kind) in that the brain doesn't signal to breath (vs. the airway collapsing.) CSA is recognized by insurance companies and this will help in getting the CPAP treatment. (We were told maybe 80% coverage, though we haven't found out for sure.)

When asked if catathrenia exists without CSA, her response was that she believes that it is only diagnosed that way by a less experienced technician that didn't know how to recognize the CSA. Perhaps you could ask your doctor about the possibility of you having Central Sleep Apnea?
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Postby PatrickCT » Wed Jun 04, 2008 4:32 pm

Can I asked where you were diagnosed?

Most places have never heard of Catathrenia before.

I've read every article on Catathrenia that I could get my hands on and none mentioned an association with CSA. Unfortunately, however, I don't have access to some of the more technical publications like those in Journal Sleep.
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Postby PatrickCT » Wed Jun 04, 2008 4:43 pm

FWIW

Tonight will be my third night with the APAP. I went with the DeVilbiss IntelliPAP since it was cheap, quiet, and didn't have exhalatory relief. For the mask, I got the Fisher & Paykel FlexiFit HC431.

The machine came setup for 4 - 12cmH2O per my prescription. I'm definately not feeling any better yet, although I'm only sleeping about 4 hours per night with it. I go to bed around 9PM and the machine runs at 4cmH2O. I then wake up around 1AM and notice the APAP is at the maximum 12cmH2O.
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Postby tsleep » Tue Oct 20, 2009 10:29 pm

I have catathrenia too, and the description fits me to a TEE. I've tried CPAP but while it resolves my problem I can only tolerate it for 4 hours - which means I am EXHAUSTED whenever I use CPAP, and feel much worse with it than without it.

I've had the surgery already and I have started the oral appliance. The oral appliance takes time to get used to it and they slowly adjust the setting on it so that your lower jaw comes forward.

Catathrenia is ruining my life ... I can't sleep in the same bed as my boyfriend, I'm afraid to fall asleep anywhere ... camping, planes, etc. I'd love to talk about my experience and hear about other people's experiences.

I don't want to post my email here, but please join the catathrenia yahoo group. It is extremely difficult to find others who suffer from this, or even to find a professional who has ever heard of catathrenia, so let's learn from and support each other.

T
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Catathrenia

Postby sive » Wed Oct 28, 2009 7:17 pm

I have been diagnosed w/Catathrenia. I would like to add that when I wake up in the morning I feel like I have been beat up. This is contrary to those that say there is little to no affect to ones health or quality of life. I have had it since 1984. I wake up groggy, sometimes w/puffy lips and feel like I have half of a brain. I have had two sleep studies, two surgeries and would like more attention and research given to this condition.
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Postby PatrickCT » Fri Nov 27, 2009 4:08 pm

Thought I'd post a quick follow up to this since a search for "Catathrenia" on Google still puts this post relatively close to the top.

I wore my APAP consistently for a year without any improvement. I experimented with pressures all the way up to the maximum 20cmH2O. I would still hold my breath under the mask no matter what the settings on the machine.

Despite reports, a CPAP is not a cure for Catathrenia. It may cure expiratory snoring, but not breath holding.
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