Non Vented Mask - Periodic Breathing Disorder - Anyone Else?

(Note: This is a long post with a lot of info, thanks for reading and offering any insight you may have)

I've recently been set up to have a sleep study done with a Non Vented CPAP Mask (most all masks have valves to allow for the proper ventilation of CO2 so that is is NOT rebreathed, however, these types of masks are setup so that a certain amount of CO2 IS rebreathed). This is supposed to help with certain type of Sleep Apnea called Periodic Breathing Disorder. Before this there were only 2 (1. Obstructive - Anatomical and 2. Central - Lack of communication to breathing system from Brain).

I've had about 6 studies to date and NONE of them were analyzed as closely as my last one was which determined that i have this pattern of periodic breathing. Which basically means that i'll start to have an apnea where my breathing levels out and then there is no effort to breath (indicated by no thoracic movement on the polysomnogram)...then as C02 in my blood rises this tells my brain to BREATHE! then i breath like crazy and i wake up (not all the way but enough to pull me out of whatever stage sleep i'm in) causing fragmented sleep. (to the tune of 15 AHI currently, and this is with a dental device in!)

Now, this was explained to me briefly as most of the appt was taken up by the dr going over the study and analyzing it, which i had to ASK him to do. I told him that i'm sick of throwing darts at this issue and i want to know EXACTLY what is happening by identifying the EXACT POINT of when and what was happening and then, if that appears to be the cause of my fatigue, then attack it with a very precise and direct treatment. They really dialed into the study and looked as close as 3 second intervals to determine that I had this particular issue. Why don’t other dr’s SEE THIS!? It’s gbeen 10 years and I’ve had 5 STUDIES!? Ugh.. regardless..

So, they offered up a few options.

1. Co2 supplements - Hikers that climb to high altitudes take this to help their bodies and lungs adjust to the lack of oxygen and resulting hyperventiliation. same idea with me.. kind of confusing but i wasnt really buying it and that wasnt their first option.

2. Klonopin - Take before bed - this would supposedly and hopefully keep me asleep during these events so that i wouldnt wake from them. The idea was that my body and brain are hypersensitive to these CO2/Oxygen levels in my blood that it tends to overreact quicker and more intensely then the average joe. I wasnt FULLY on board witht his as a treatment plan as i didnt really want to take Klonopin the rest of my life, but i was interested in finding out if it helped with fatigue and was OK to use it as a diagnostic tool. However, they recommended the following

3. CPAP study with Non Vented Mask - This mask would basically allow me to rebreath the CO2 that i expel at night (some/most of it) so that the balance remains stable and i dont have any of the non effort events that cause the levels to get out of whack. Again, i'm not sure i understand it fully but it sounded good while i was talking with them and i didnt have enough time to get in depth with questions.

I read up a lot about it since the appointment but haven’t been able to make heads or tells of it so i wanted to come here. I have a couple questions for the community if you wouldn’t mind answering if you've heard of, are dealing with or know anything about this

Thanks for your consideration and time!

1. What type of non ventilated masks are there out there? I imagine the suply is limited due to the relative newness of the diagnosis and low number of diagnosed sufferes

2. Has anyone been diagnosed with this brand of Sleep Apnea and have found ANY releif with any of the above treatments or other? Please, please, please email me or post here. Thank you!

3. Any other information on this would be greatly appreciated.

I have provided more information on m my history below, hopefully this helps.


I’m 31 years old and have been dealing with Sleep Apnea and severe Chronic Fatigue for over almost 10 years. Not overweight, non smoker, don't drink a crazy amount and otherwise healthy.

I've had about 6 sleep studies to date.

1. Determine whether or not i had Sleep Apnea - Results- 30 AHI
2. Titration for CPAP Machine - Results - went home w/ CPAP and FF Mask but did not tolerate (nor did i want to give it a shot as I was just doing this to appease the health insurance company so they would allow me to get the surgery)
3. Post UPPP and Tonsillectomy Surgery - Results 15 AHI - Minimal Fatigue Relief
4. Another CPAP Titration with Mask to retry CPAP – This time for real – Results: gave it the college try for about 2 months and tried 5 different masks (was finally able to tolerate the Hybrid Mask) I was able to tolerate and keep the mask on throughout the night for about 2 weeks, every night getting worse and worse… not only was I not getting any relief but iw as actually getting WORSE ( I guess this is also a problem with this type of apnea, as it helps with the Obstructive part but exacerbates the Co2 balance issue). I gave up for a few years after this
5. Check up Sleep Study to see where I was at and see if Sleep Apnea was still an issue – Results – 25 AHI – Went to get fitted for Dental Device – in which the use of resulted in minimal results – I’m still wearing one today after about 1.5 years only because when I DON’T wear it, I snore and feel worse. So, it IS doing SOMETHING, but isn’t getting it ALL
6. Sleep study WITH Dental Device to see if it really WAS doing something – Results – Inconclusive as Dental Device fell out at some point in night and they were not able to tell when. Useless waste of time
7. Another study with Dental Device in – Different dr (I seeked out a specialist in Boston as I was sick of the other drones – Results: AHI of 15 even with dental device – Results showed OSA, Central as well as these periodic lapses of breathing effort followed by crazy breathing and arousal.. yay.


So…that’s my story.. and I’m stickin to it. Again, I’m hopeful about this treatment but I don’t like not knowing. Like, what mask will I use and what CPAP machine?

I guess there’s a machine called an Adapt SV which “Thinks” with the user and actually breaths with them but is not like an APAP where if it detects an obstruction it just blows your face off… but, the problem is it’s $6000 and my insurance will only cover $750/year AFTER my $1000 deductible…so..regular CPAP w/ Non Vented Breathing mask is what they’re prescribing..

Anyone with any info? Sorry for the long post but it’s been a long road… I just wanna sLEEEP!!!

THANK You so very much

Hi, phorts.

Sorry, but I can't speak to the non-venting mask that you're asking about. Hopefully, those here who can provide more info will chime in.

But your experience sounds similar to my own. Five sleep studies in the past 27 months. My diagnosis is in my signature line. I've been on therapy for just over two years now at a fixed pressure, still not feeling like I think I should.

Like you, I considered an ASV machine for my sleep issues, but I couldn't afford to buy one out-of-pocket. (Even if I could afford it, my doctor wouldn't write a script for an ASV because I don't "need" it.) So I could only search sites like CraigsList, with hopes I'd find a gently used one at a good price. It took months of constant searching, but I just found and bought one; got it on the 14th.

If you decide to search for an ASV you can afford, just know that they're not easy to come by on sites like CL. But if you can get a prescription, you'll be able to buy one on http://www.cpapauction.com (where they show up a lot more often than they do on CL) or another online medical supplier who has a gently used unit for sale at a decent price.

After 2+ years of therapy (adequate, but nowhere near optimal, with AHI often >5), sleep study after sleep study, APAP trial after APAP trial, I'm already calling my new machine "Houdini." The ASV hasn't disturbed my sleep once, even though it pushes way more pressure (at times) than I'm accustomed to, in order to keep me breathing steadily. The pressure surges are really fast, but the transition is extremely smooth, and I don't even notice them. It seems to be just the thing for what ails me, regardless of what my doctor thinks. If you'd like to see the data I've gotten from my ASV so far, see this post: viewtopic.php?p=442782#p442782.

I wish you the best of luck going forward. Don't give up!

I agree with SleepingUgly (whose answer qualifies a name change to SleepingBeauty !).

Though I do not have problems with periodic breathing, I have SERIOUS problems with central apneas. I have been complaining about my sleep problems for years, but it has not been addressed. I finally got emphatic about the need to address my symptoms. That led to a sleep study with an ASV unit (Respironics BiPAP AutoSV). It was wonderful.

So, my sleep specialist prescribed an ASV unit (with humidifier and mask and ...). And the result was WONDERFUL sleep. I no longer have any apneas! None! Nada! Do you get the sense that I'm an enthusiastic user? Oh, it's going to take me months to get back to very, very good sleep, but I'm once again able to function.

So, talk with your sleep specialist about an ASV unit. It was designed to treat Periodic Breathing and Central Apneas. Here are a few links:

http://www.resmed.com/us/products/vpap_ ... c=patients

http://bipapautosv.respironics.com/
http://bipapautosvadvanced.respironics.com/

phorts wrote:(but, the problem is it’s $6000 and my insurance will only cover $750/year AFTER my $1000 deductible…so..regular CPAP w/ Non Vented Breathing mask is what they’re prescribing..

The billing code, billing rate, and reimbursement rate for a cpap is different from the bipap. Are you sure the $750 cap would apply to this bipap also? Is this $750/yr applied to the purchase of the machine or a cap on the rental? Some insurances have an appeals process for when the policy as stated does not meet your medical necessity, and payments can be approved by those with that authority. Not sure how often it really works. Also, if your insurance has an 80/20 setup, consider the long term cost of the machine, comparing rented to purchased. And inquire if your insurance will permit an outside purchase with reimbursement. You may end up finding that getting a good used bipap on cpapauction would be more economical in the long run.

I know nothing about non-vented masks. I'm assuming they are equipped to ensure a proper balance of Co2 and o2. Maybe someone else can help you with that.

JohnBFisher wrote:I agree with SleepingUgly (whose answer qualifies a name change to SleepingBeauty !).

I think you're confusing Bleeping Beauty with Sleeping Ugly... I really need an Avatar.

I recall a cpaptalk member called lubman (I think) who had the issue of needing a re-breathing mask. Also I recall we had another person called frequentseeker who used modified masks.

Lubman as I recall, had a special modified full face mask with an extra airline tube the ran back from the mask & it had the effect of capturing a portion of the breathed out CO2 which got sucked back in on the next inhale. The length of this tube was tuned to the amount of re-breathing that was desired. I never did hear if it worked for him but he did show it to me. Lubman ended up with a Vpap Adapt SV as well as the modified mask.

Rebreathing CO2 is a complex issue. Before any of us goes to far on this topic I would hope that Muffy gets involved as this is an area Muffy specializes in and I believe is going to offer the most useful insights and comments.

DSM

This link may offer some extra insights ...

http://www.talkaboutsleep.com/sleep-dis ... ract23.htm

DSM

Adding this from another thread.

>>
In aerobic metabolism, the body uses oxygen to produce energy and generates carbon dioxide as a metabolic by-product. The physiological purpose of respiration in this regard is to maintain the proper concentrations of oxygen and carbon dioxide in the blood and other body tissues. As blood flows through the lungs, oxygen from inspired air is absorbed into the blood, while carbon dioxide is removed and blown off during expiration. A principal way in which the rhythm of respiration is regulated is through the respiratory center in the brainstem (in the pons and upper medulla). The respiratory center has chemosensitive areas that respond mainly to the concentration of carbon dioxide in the blood. When blood carbon dioxide increases, the respiratory center sends neural signals to the muscles controlling inspiration and expiration to cause an increase in the depth and/or rate of respiration and vice-versa when blood carbon dioxide decreases.

In certain individuals, a dysfunction in the respiratory control mechanism described above produces a pathological condition known as periodic breathing. One type of periodic breathing, Cheyne-Stokes breathing, is characterized by alternating cycles of hyperventilation and hypoventilation. When hyperventilation occurs, the pulmonary blood becomes excessively depleted of carbon dioxide. After some period of time, the pulmonary blood reaches the respiratory control center in the brain and/or respiratory chemoreceptors in the vasculature to cause suppression of respiration. The resulting hypoventilation then causes carbon dioxide in the pulmonary blood to rise excessively. After a transit time to reach the respiratory control center in the brain, the excessive carbon dioxide in the blood causes hyperventilation that starts the cycle again. In normal individuals, the cycles of hyperventilation and hypoventilation as just described do not occur because the transit time for pulmonary blood to reach the brain is short and the carbon dioxide concentration in the tissues is maintained by the circulation in a manner that buffers increases in the carbon dioxide concentration of pulmonary blood. In certain situations, however, the respiratory control mechanism becomes impaired so that Cheyne-Stokes respiration occurs. In patients with heart failure, cardiac output is decreased below normal and blood flow is correspondingly slow, causing the transit time for pulmonary blood to reach the brain to increase. Cheyne-Stokes respiration frequently occurs in heart failure patients and has been shown to be associated with a poorer prognosis and increased mortality. Abnormally elevated chemoreflex sensitivity associated with increased sympathetic activity is another cause of Cheyne-Stokes respiration, and increased sympathetic activity commonly occurs in heart failure patients. Another cause of Cheyne-Stokes respiration is damage to the respiratory control center in the brain that impairs the feedback mechanism for controlling inspiration and respiration. Damage to the respiratory control center can also cause a related condition known as central sleep apnea in which breathing ceases for prolonged periods during sleep.
<<

***************************************************************************

I also came across this rather technical link but think it was posted recently by one of our regulars. It goes into a lot of the detail related to use of non-vented masks in controlling SDB. Not being in the profession I can at best offer my interpretation of what it is saying but am confident that what gets said is a fair interpretation.

http://www.medscape.com/viewarticle/515202_8

A small extract on the topic of masks ...

>>
Minimizing Hypocapnia

The most critical component of any therapy for complex disease associated with CO2 dyscontrol is to minimize hypocapnia. Strategies include using the lowest pressure that allows reasonable control, avoiding modalities that destabilize (continuous and bilevel pressure may be less or more effective in individual patients; automatic continuous pressure machines should be avoided), the use of a nonvented mask, the use of enhanced expiratory rebreathing space, and controlled increases of CO2 concentrations in the inhaled air.

1. Nonvented mask: Vented masks prevent CO2 rebreathing or even reduce physiologic dead space in the setting of positive airway pressure therapy. The use of a nonvented mask may be enough to minimize hypocapnia-induced respiratory instability during positive airway pressure titration, and it is always worth a try. The selection available for these masks is currently limited.

2. Enhanced expiratory rebreathing space: Dead space alone has been reported to control central sleep apnea and heart failure-related Cheyne-Stokes respiration; however, the need to use 500 to 600 ml added inspiratory volumes is not a practical long-term option, and the numerous beneficial effects of positive airway pressure are not obtained.[39] When this is used with positive airway pressure, 100 to 150 ml is sufficient, which suggests synergistic effects of the modalities (Fig. 4). There are significant differences between this form of use and dead space alone, including the following: (i) Reduced rebreathing volumes are required. (ii) Continuous washout restricts effective dead space to expiration only (inspired CO2 does not increase). (iii) There is an absolute requirement for a very tight fit of the mask. (IV) Patients do not notice the added rebreathing space, which suggests that the positive pressure support counters this respiratory sensation.

3. The positive airway pressure gas modulator: This experimental device provides flow-independent and precisely controlled increases in CO2 in the inspired air. It is used with positive airway pressure and provides immediate stabilization of respiratory instability (Fig. 5). When available for clinical use, it will offer an option for the use of CO2 in clinical practice for complex hypocapnic sleep-disordered breathing
<<

DSM

BleepingBeauty wrote:If you decide to search for an ASV you can afford, just know that they're not easy to come by on sites like CL. But if you can get a prescription, you'll be able to buy one on http://www.cpapauction.com (where they show up a lot more often than they do on CL) or another online medical supplier who has a gently used unit for sale at a decent price.

Oooh, there's one now:

http://www.cpapauction.com/auction-list ... idity.html

Muffy

SleepingUgly wrote:... I think you're confusing Bleeping Beauty with Sleeping Ugly... I really need an Avatar.

No, no. It's a compliment. I meant that you found exactly the right answer. Sometimes a cheaper solution that a patient can afford (instead of insurance) is the best solution. As Muffy just observed, one is available now.

Even if you miss that one, the 6000 number (5500, actually) is MSRP and not the "real" price.

As Kathy says, find out exactly what your insurance pays, and when all is said and done, given the life of an xPAP machine, even if your insurance coverage is horrible it's probably only gonna cost you about 2 bucks a night in the long run.

Muffy

Thank you everyone for your prompt and insightful responses. I have read through everything and even the included links and feel I have a little better understanding of what I may be dealing with. I have responded to each of your posts individually as I would like to pick your brains about this stuff. So, thanks again and hopefully I can get some relief and someone in the future will benefit from this thread.

Bleeping:
1. You said your diagnosis is in your "Signature" line. What did you mean by that? I remember the doc saying i have mixed apnea and when he zoomed in close he could see that my breathing would flatten out, then i would have no effort for a period of time (not sure how long maybe 10 seconds or so?), followed by hyperventilation (or hypo whichever one means to breath out heavy and fast) and an arousal. There wasnt a RIDICULOUS amount of these events but there was a siginificant amount to be concerned about he said

2. Your post suggests you have a Resmed Adapt SV, but your signature says you have a BiPAP Auto SV. Are these the same type of machine just different manufacturers?

3. So you had no luck with APAP, did you try CPAP? What was your luck with that? My first trial was with CPAP and i didnt even give it a REAL try as i couldnt tolerate the mask and was really just doing it to get the surgery. The second trial was with the APAP and i often found myself waking up to the thing blowing a hurricane in my face. Even when i was able to keep the mask on all night, i felt like CRAP (worse than usual) the next day. I'm curious, what made you go back for another sleep study and what gave them the impression that the Adapt SV machine would help. Did they not see during the titration of the APAP that your breathing wasnt stable and that you were still having fragmented sleep?

JohnBFisher
1. Again, what showed up on the results from your studies with APAP/CPAP? Did it still show apneas (Central or Obstuctive?) If Central, why did they send you home with that unit? Makes no sense to me
2. Did you feel NO relief from APAP/CPAP? If not, why did you continue to use it for 18 years? What do you notice different about your experience with the ASV?


Regarding Insurance:

I will definitely dig more into the insurance thing once I find out what machine is medically necessary for me. If indeed it’s the ASV, then I will go that route. Unfortunately, I think the doctors are having me trial a CPAP or APAP (not sure) with a non-vented mask with added deadspace to increase the amount of Co2 that is rebreathed. So, if that works, then I guess I don’t need an ASV. But, again, I’m skeptical (as one gets after 10 years of no relief)
So, thank you for your insight on insurance. I may need to find out anyways regarding the purchase/rental of just a regular CPAP/APAP

DSM:
Thank you for providing those links. I have tried to read up as much as possible on this issue. I’m still a bit confused of the diagnosis I was given and to the treatment protocol. I guess their thinking is that I have a combination of both Central and Obstructive so I need the CPAP but also need to balance my Co2 levels. My fingers are crossed more than ever on this one.


Muffy:
Thanks for finding this for me. I will monitor the auction, however, I’m not sure I should buy it (even if it looks like it can be had for a reasonable price) because I’m not sure that this solution will work for me.




If it’s an Adapt SV that treats me and gets me back to full health, well then I’d chop off my left arm if that’s what it cost. I’m sure some of you have been there at some point and it gives me hope to hear your success stories. It’s what keeps me going after a solution. I simply refuse to accept the notion that this is how I must live. I’m no good to anyone, not even myself. I’m trying to run a business, I’m getting married, looking to have kids, etc… right now the only thing that matters is getting healthy enough to handle these things, and right now I cant.

So, thank you profusely again for all your help
Thank you
Keith

phorts wrote:... JohnBFisher
1. Again, what showed up on the results from your studies with APAP/CPAP? Did it still show apneas (Central or Obstuctive?) If Central, why did they send you home with that unit? Makes no sense to me
2. Did you feel NO relief from APAP/CPAP? If not, why did you continue to use it for 18 years? What do you notice different about your experience with the ASV?
...

The disadvantage of a forum is that it sometimes takes a long time to clarify my own personal history with xPAP therapy.

About 20 years ago I was diagnosed with obstructive sleep apnea. Even during those initial studies I had some central apneas. But they were not frequent enough that it was a problem. I used CPAP quite successfully for many years.

Then after several years, I started to develop some neurological problems. Part of that was increased probelms with sleep. A follow up sleep study showed that I needed BiPAP. I used BiPAP for quite a few years. A follow up sleep study indicated my central apneas were increased. Unfortunately that sleep specialist thought that since CSA is very rare, I could not have it. Even though the sleep study showed I have problems with it. Go figure.

In the meantime, I was diagnosed (after tons of tests) with Sporadic OPCA. It means it is not inherited. And the diagnosis is more a definition of the area of the brain having problems than an understanding of the problem. It is degeration of the cerebellum and brain stem. It did not appear to be progressing very quickly, so I decided to just live with the situation as is.

I used BiPAP for quite some time until that unit died. So, to get a replacement machnie I had another sleep study. At that point I had lots of problems with central apneas. Still they thought a new pressure would help. Between issues with my insurance and the DME at the time and miscommunication (on my part due to brain fog) with my new sleep specialist, I did not return to discuss ongoing problems wiht sleep - that the BiPAP did not address.

Remember, CSA is pretty rare. As a result if is often not addressed. The normal knee jerk reaction is to act as if the obstructive issues (which I still have) are the most important.

This time around I got VERY insistent that my symptoms must be addressed. A BiPAP titration study showed six times the number of central as obstructive apneas. My sleep specialist / neurologist then scheduled the ASV titration. It made a huge difference.

Do I feel no relief from CPAP/APAP/BiPAP/BiPAP Auto? Sure it stops the obstruction. But when I have a central apnea six times as frequently as an obstructive apnea, who cares? You see my neurological symptoms have progressed (in many different ways). And part of that progression appears to be dysregulation (poor control) of my breathing and sleep architecture. It's normal for a neurological condition that involves the brain stem.

But it took my insistance before my neurologist took it seriously. And he is actually quite good. Once I made it clear the problems I had during BiPAP titration were not going to get better by trying a different pressure, he decided to check artieral blood gasses and my pulmonary function. The pulmonary function could be better. I am definitely overweight. That does not help. But the ABGs (blood gasses) test confirms I have more CO2 buildup than I should (due to low respiration rate). I don't have heart problems (again thank goodness). It's just a decreased respiratory drive. I don't have periodic breathing. My breathing just slows and stops. Then I remember to breathe and start breathing normally. No hyperventilation (that often accompanies periodic breathing). Just reduced drive to breathe.

Fortunately, the ASV unit makes a huge difference. Otherwise I might need to look at a much more radical solution (tracheostomy). It makes a huge difference in my case. An ASV unit is not needed for most people. The RT notes that many people find and ASV unit difficult to use - because of the wide swings in pressure. But I actually find it's ability to help me continue to breathe - even when my body fails to make the effort - very comforting.

Hope that helps explain the situatino.

dsm wrote:I recall a cpaptalk member called lubman (I think) ........
DSM

Good DSM.

Here are some posts where Lubman mentions his Mirage NV FF Mask.

viewtopic/p443081/search.php?st=0&sk=t& ... or_id=5272

phorts, I hope you can find something in there that helps you.

Thank you very much for taking the time to detail your history and current situation. It definitely sheds some light on my situation, even though it probably opens up more questions then answers..heh

I just got a call from the sleep lab, originally my sleep study was scheduled for February, now it's scheduled for tomorrow night with Dr surveillance. He'll be in his office, remotely, but connected to the study so that he can review the live results and make changes to machine, settings, tubing, etc on the fly so that we can find the right combination of equipment and configuration that provides the best stabilization of breathing and control of apneas.

Atleast, that's what i got out of the conversation i had with the sleep tech/scheduler.

I called the dr's office and asked to speak with him directly, as this was not discussed in depth when we met (again because of short time).

I asked what mask they will be using and mentioned that i had success with compliance and fit with the Hybrid Mask. They said any mask can be modified to provide the required results, so mask selection is not an issue, whatever works for me.

The sleep tech said that they will be controlling the Co2 saturations by adding/removing tube length. I just find it very hard to beleive that adding more tube is going to be the difference between a hellish experience with CPAP, and a successful treatment.


I seriously would subject myself to a month in a sleep lab so that they could get the right combination for me to sleep soundly through the night... if this doesnt work, it honestly seems that i'll be out of options.

Anyone that that can provide any further insight into what i'm about to go through ..success or failure stories would be greatly appreciated..and if there's anything i should ask my doctor regarding my specific condition and treatment.

THANK YOU SO EVERY MUCH!!!
Keith

One of the questions I can answer for you is about the two different machines. The ResMed Adapt SV and the Respironics BiPAP SV. They are both 'servo ventilator' machines designed to treat conditions like yours. (Too bad it so long to get your periodic breathing recognized). As described to me, the Adapt SV machine tries to enforce a constant tidal volume by aggresively controlling pressure, on a breath-by-breath basis. The BiPAP SV machine, which seems more common here, is a little less aggressive, but can still quickly adapt to changes in your breathing. Both of these machines will attempt to 'jumpstart' breathing when you stop breathing; it is specifically for central apnea issues and periodic breathing.

The BiPAP SV has a lot more fine tuning 'handles', and is a newer machine design. But some people find they like how the Adapt SV feels. The Adapt SV is a fairly old design, and requires an odd power supply voltage and an older (but still useful) computer interface.

Users of both of these machines report that they really help them.