Non Vented Mask - Periodic Breathing Disorder - Anyone Else?

Welll..

I got my flex tubing, and my new Adapt SV "Enhanced" Model (Records AHI, HI, etc). Here’s an update to how I’m doing

Note: all 3 nights (with our without the machine I was wearing my dental device)

First night (3 nights ago)

The Flex tubing certainly helped reduce tension and improve comfort, so i was able to get to sleep without too much trouble, and the leake seemed good.

Went to bed around12 and I woke up around 7 and removed the mask, fell back asleep and awoke around 8:30 or so...I felt a bit more tired than normal but nothing signigicant. Again, lungs felt "worked". I reviewed the results from the machine and it reported that my usage was 7 Hours, Leak was 15 (which is good with this setup i guess) and my AHI was 1... 1? 1. Well i dont feel like a 1... on a scale of 1-10 and 1 being the best i felt like a 7...but fine.

Went through the day and by midday i was major dragging and by night i was dead tired. Went to bed early that night.

Night 2 - two nights ago

Bed time a little earlier around 11. This time the mask was fighting back a bit and wasnt getting a GREAT seal but nothing i was too concerned about. took a bit longer to fall asleep this time but eventually did. However, i remembered waking up several times thoguhour the night (around 4-5) and having to adjust and fall back asleep. Again mask off at 7 and out of bed at 8:30.

it felt as though i'd been hit by a truck. All day i was completely lost and out-of-my mind tired. by night it was just curl up and veg out on TV was all i could do. It was MAJORLY windy out last night (60mph gusts here in NH) so i knew we'd lose power. So i didnt try the mask again. I wasnt going to anyways. I dont have a battery backup and i NEEDED SOME semblance of sleep so i could function today.

Woke up today, as per usual, exhausted and dragging out of bed but nowhere near yesterday.



So… what now? I talked to my doc to let him know LAST week (the first three nights I had the machine) I felt worse than before. So, his recommendation was to try ….Klonopin. (Clonazepam – a benzo). Apparantly Klonopin has been prescribed to CSA patients to help increase the tolerance to the fluctuating C02 levels in the blood so that the body doesn’t overbreath, or stop breathing, during these indifferences.

My concern? It works. Now I’m on klonopin for life. Oh, and also, every single side effect of Klonopin is EXACTLY the issues I’m trying to alleviate, including daytime grogginess, fatigue, anxiety, depression,etc, etc, etc, etc, etc, etc, etc……. What the? How does this make ANY sense at all?

So, I ask of you here in CPAP land 2 things

1. Have you, anyone you know, or anyone you’ve heard of had success with treating CSA with the Adaptv SV with or without Klonopin?

2. With xPAP therapy, is it possible I’m going through a normal “adjustment” phase to the treatment and that things are getting worse before they get better? If that’s the case and I KNOW This, then I can deal with anything. I don’t care if it takes a month. I just need to know that I’m on the right path.


I REALLY REALLY REALLY am against taking ANYTHING, especially something as hardcore as Benzos… I’m already not OK with xPAP, but if it works then I’ll do it..i’ll do anything…

Any advice, help, hugs, whatever is greatly greatly appreciated… I’m going to TRY the Klonopin and Adaptv SV combo tonight… but I’m expecting poor results.

Ihave to prepare for the worst, and even expect them, as it’s been 10 years with trial and error and no solution in sight.

Thanks again.. I appreciate you all.

phorts wrote:... I got my flex tubing, and my new Adapt SV "Enhanced" Model (Records AHI, HI, etc). Here’s an update to how I’m doing ...

Sorry it took so long to comment on your post. Things were interesting with work. Also, I have had several nights of VERY bad sleep. Though my ASV unit makes life much better, my neurologist think my neurological condition has increased to where my breathing is not well under control. It appears to be a bit cyclic, which might indicate my central nervous system is trying (and loosing the battle) to better control my breathing. Sigh!

But I slept better this afternoon, so here's hoping I'm on an upswing! I'll post more on that later.

It's WONDERFUL that you were able to get an ENHANCED unit. I know your DME had not provided one. It's GREAT that they got one for you. Whooo Hoooo! Sometimes knowing what to check for can make all the difference in the world.

phorts wrote:... Note: all 3 nights (with or without the machine I was wearing my dental device) ...

Well, as you know, even when you don't sleep with your unit, getting the airway open is essential. Thanks for letting me know that you know. Since you did, I won't chide you as much!

phorts wrote:... First night (3 nights ago)

The Flex tubing certainly helped reduce tension and improve comfort, so i was able to get to sleep without too much trouble, and the leake seemed good. ...

Hey! It's wonderful when some things work right. Now let's see about the rest of it.

phorts wrote:... Again, lungs felt "worked". ...

That's pretty normal. After several nights of not sleeping well, I once again had that same feeling this afternoon. It's amazing how much difference it makes.

phorts wrote:... I reviewed the results from the machine and it reported that my usage was 7 Hours, Leak was 15 (which is good with this setup i guess) ...

It's very good. The following shows the vent rate of a vented mask. Even at a low pressure, the best it does is about 22l/m.

http://www.resmed.com/us/assets/documen ... sa_eng.pdf

So, at 15 your system is leaking less. Of course that was designed to keep the right amount of CO2 in your mask to help decrease the periodic breathing pattern.

phorts wrote:... and my AHI was 1... 1.1? ...

Yup. It really does do that.

phorts wrote:... Well i dont feel like a 1... on a scale of 1-10 and 1 being the best i felt like a 7...but fine. ...

Oh, it's not unusual to feel as if you've been run over by a truck. But since you have a non-vented mask, if you can swing it, I would definitely use a pulse oximeter to keep an eye on things.

phorts wrote:... Night 2 - two nights ago

Bed time a little earlier around 11. This time the mask was fighting back a bit and wasnt getting a GREAT seal but nothing i was too concerned about. took a bit longer to fall asleep this time but eventually did. However, i remembered waking up several times thoguhour the night (around 4-5) and having to adjust and fall back asleep. Again mask off at 7 and out of bed at 8:30.

it felt as though i'd been hit by a truck. ...

Definitely see about getting a pulse oximeter.

phorts wrote:... So… what now? I talked to my doc to let him know LAST week (the first three nights I had the machine) I felt worse than before. So, his recommendation was to try ….Klonopin. (Clonazepam – a benzo). Apparantly Klonopin has been prescribed to CSA patients to help increase the tolerance to the fluctuating C02 levels in the blood so that the body doesn’t overbreath, or stop breathing, during these indifferences. ...

Oooh! You doctor definitely has been around a while. And he definitely knows his "stuff". You might want to ask your doctor if a vented mask with the ASV unit would suffice. I'm not sure you tried that. Combine that with a pulse oximeter. Compare the non-vented with the vented mask.

If the vented mask does not show any benefit, then you might need to consider the medication. But I would also share your concern in your shoes.

phorts wrote:... 1. Have you, anyone you know, or anyone you’ve heard of had success with treating CSA with the Adaptv SV with or without Klonopin? ...

It's funny how questions seem to come in clusters. I just posted the following link to a clinical study that showed the impact of an ASV unit on central sleep apnea. It also examined the effectiveness on periodic breathing, which if I remember is more of your issue than pure CSA. I might be mistaken.

So the link to the article titled "Efficacy of Adaptive Servoventilation in Treatement of Complex and Central Sleep Apnea Syndromes" is:

http://chestjournal.chestpubs.org/conte ... l.pdf+html

The chart C on page 5 tells the story for CSA. In it you will see that consistently the only thing that makes much of a difference is the ASV unit. The graphs on page 5 tell the story. See graph C, which I add a couple notes to highlight below:



So, yes. An ASV unit helps a LOT. There have been several studies that show very similar results.

phorts wrote:... With xPAP therapy, is it possible I’m going through a normal “adjustment” phase to the treatment and that things are getting worse before they get better? If that’s the case and I KNOW This, then I can deal with anything. I don’t care if it takes a month. I just need to know that I’m on the right path. ...

Yes. But since your mask is nonvented, you REALLY need to use a pulse oximeter to be certain you are not having problems. It sounds as if you are on the right path. But do discuss the possibility of using a vented mask.

Again, I am not a doctor. I don't have the information from your sleep study. But it's also possible that things are not quite like what was done during your sleep study. If you have more CO2 buildup than the doctor intended, then you might not do well at all.

I sure hope this helps. I hope you are doing well. And do keep us updated. This can be a very difficult road to travel when it does not go well. So, more than anything know that we are here to listen. Sometimes that is all we can do. But often that makes all the difference in the world.

I have just finished my 10th sleep study am on a vpap set to 8/8 w non vented mask. 2 liters of O2 & a wisper swivel so far they have not got the machine to work correctly w limited knowledge of how to set it up properly my hopes are high this is cutting edge stuff none of it fda approved but if I don't sleep soon I'm gonna eat a bullett I have obstructive & central as well as periodic ill let u know if I ever get a night sleep the non vented mask sound ed easy enough & made sense but as usual its not working im to tired to go over my background severe fatigue up every hour on the hour just was recomended nonvented mask last week