A new apnea patient's journey - starting with Provent

NateS wrote: I am speaking from personal experience. After I had taken my sleep study, I got a call from the lab manager asking me to come in and be set up with a cpap machine which they had all set up and waiting for me. Repeated calls. I made clear that I was not undertaking any form of therapy until after I had been given a copy of the complete report and had a chance to study it. I waited. When I finally got the report and studied it, I contacted my sleep doctor and asked why am I being "prescribed" a cpap when I read my report and it has diagnosed me with central apneas and I have read that a cpap machine would make them worse? He was "astonished" that a Rx had been issued by his office for a cpap, agreed with me that it would make things worse not better for me and I wound up with an ASV, which had to be special-ordered through a different DME.

Nate that's an awesome tale of how being informed can make all the difference in your treatment. Apparently I'm not the only one who is getting "CPAP Is The Apnea Treatment, You Will Assimilate." I do feel like it's being shoved down my throat. Thankfully you knew better and your doctor listened to you. It just makes me wonder how many other folk are being prescribed CPAP when it's simply not appropriate or even the cheapest option. I'm still a noob so I can't say much, this is just my first take on the state of apnea therapy.

Did anyone else have to initial in their patient forms that they were aware that the doctor may have a beneficial relationship or be part-owner (e.g., stock holder) with the companies who make the therapy treatments offered? That's kind of stuck in my head as an odd thing for me to have to acknowledge and initial.

I made it a condition of my treatment that CPAP will be the last form of treatment I try - not the first. Though I started with CPAP WILL NOT be a form of treatment, I've softened a bit to accept it may ultimately be my final option.

Kudos to you for taking control and having the presence of mind and knowledge to steer your treatment in the right direction.

neurotony wrote: Interesting thing is, the "advanced" part of the new SVA machine is that it has an EPAP component:

SU, I believe your present therapy is bi-level without ASV. Can you cofirm that your non-ASV machine has EPAP and IPAP?


NOTE: If you're unfamiliar with IPAP and EPAP (I don't mean you SU, I mean people who are new to this site and to CPAP in general) they stand for Inhale Positive Air Pressure and Exhale Positive Air Pressure.

http://www.phcentral.org/medical/glossa ... r-pressure

NOTE II: If you're unfamiliar with p values, don't believe what neurotony tells you. A p value only stands for how sure you are the effect is not due to chance. A p value of p<=.002 means you're sure and p<=0.001 simply means you're twice as sure that the effect you're observing is not due to chance. The effect can be miniscule. Uber confident, maybe. Uber effectifve -- no way.

http://www.eval.org/summerinstitute/06S ... Online.pdf

neurotony wrote: It just makes me wonder how many other folk are being prescribed CPAP when it's simply not appropriate or even the cheapest option.

You might not want to be too cocky at this stage since you have entirely overlooked the easiest, most comfortable (for most people), most widely used, and cheapest option that anyone in your situation should absolutely try first.

Admittedly I know nothing about central sleep apnea and ASV, so take my question in that context... How can Provent possibly be effective in central sleep apnea when its purpose is to stent the airway and the airway is already open during a central apnea?

ozij wrote:SU, I believe your present therapy is bi-level without ASV. Can you cofirm that your non-ASV machine has EPAP and IPAP?

Yes, it has IPAP and EPAP settings. For example, I am using Auto-VPAP setting of IPAP maximum 10, EPAP minimum 4, PS=4, so the pressure ranges from 8/4 to 10/6.

neurotony wrote:NOTE: If you're unfamiliar with "p" value, it's a measure of significance against the null hypothesis. In practice, any number below .005 is considered statistically significant - meaning the treatment being studied has shown to be more effective against the control treatments. So "p=.002" is pretty significant and p<0.001 is uber-effective.

Neurotony, I think you mean that p<.05 is considered a statistically significant difference. Ozij is correct that statistical significance doesn't always mean clinically meaningful (i.e., "effective"). A very small, meaningless difference can be statistically significant under certain conditions. And sometimes a clinically meaningful difference is statistically insignificant simply because there's not enough power.

The Choker wrote:You might not want to be too cocky at this stage since you have entirely overlooked the easiest, most comfortable (for most people), most widely used, and cheapest option that anyone in your situation should absolutely try first.

You should call yourself The Joker, as you're such a joker. If Neuro can adjust to Provent and if it solves his problem, that is the "easiest, most comfortable" option. At this point it might not be the cheapest, but if that's not an issue for him, then that's not a consideration. I couldn't believe it when my eye doctor told me that a contact lens I tried costs $2 a day! I would gladly pay that much for a good night's sleep.

I am THRILLED beyond measure to see research into alternatives to CPAP. This is a great thing for all of us. It's wonderful that you, and many others here, have adapted to CPAP, and if you want to wear yours until you hit the veil, that's fine. But I have an 8-year-old on CPAP who asked me, "Am I going to have to wear this mask until the day I die?" I want that answer to be NO!

SleepingUgly wrote:

The Choker wrote:You might not want to be too cocky at this stage since you have entirely overlooked the easiest, most comfortable (for most people), most widely used, and cheapest option that anyone in your situation should absolutely try first.

If Neuro can adjust to Provent and if it solves his problem, that is the "easiest, most comfortable" option.

Not true! You are overlooking the obvious. You are the one who is stuck on the CPAP paradigm and is oblivious to "the easiest, most comfortable (for most people), most widely used, and cheapest option that anyone in your situation should absolutely try first."

ozij wrote: NOTE II: If you're unfamiliar with p values, don't believe what neurotony tells you. A p value only stands for how sure you are the effect is not due to chance. A p value of p<=.002 means you're sure and p<=0.001 simply means you're twice as sure that the effect you're observing is not due to chance. The effect can be miniscule. Uber confident, maybe. Uber effectifve -- no way.

http://www.eval.org/summerinstitute/06S ... Online.pdf

If you're unfamiliar with p values don't believe what ozij tells you. Heh. Actually, it looks to me like we're splitting hairs and I do like the use of "confident" over "effective", so touche'.

Fact is, there is a range of "significant" p-values and it's related to the rejection of the null hypothesis - which are the control conditions. The test condition (hypothesis) and control conditions (null hypothesis) can't be separated, and this is the "chance" we are looking at.

It was an effort to keep the explanation simple. Our lab used .003 as the desired statistical significance, so it does vary. Either way we split the hair, p=.002 shows a high confidence that the addition of EPAP to BPAP therapy was more effective than just BPAP alone.

For even more on "p" values, trudge through this - it's pretty good: http://en.wikipedia.org/wiki/P-value

05/03 Night's sleep on Provent



This is about a 5.5 hour recording which cut in around 12:30 and ends around 5 am. Overall I slept comfortably and woke up only once last night. As on the first night, I woke up before my alarms (yes, plural) - which is kinda nice.

Also as during the first night, there is about a 30 minute interval of snoring. You can see it between 3 and 3:30. The two spikes just after 3:30 are not snoring, it's me turning in the bed. The spike around 4 am is when I woke up, checked to make sure it was recording and went back to sleep. The other spikes throughout the night are me moving.

I'm not sure why the normal breathing is so close to the calibration point in this night's graph. Maybe I had the phone closer to my chest or maybe my breathing volume was higher. But nice to hear no snoring on the recording.


Since we are on the 4th page of this thread, I'm reposting the control graph again. Though you could also look at 05/02's night sleep since the plugs fell out:



This is just 1.5 hours of sleep during a nap I took and the snoring was always above the calibration point (a fake snore). There's constant snoring throughout the entire period.

The Choker wrote:

SleepingUgly wrote:

The Choker wrote:You might not want to be too cocky at this stage since you have entirely overlooked the easiest, most comfortable (for most people), most widely used, and cheapest option that anyone in your situation should absolutely try first.

If Neuro can adjust to Provent and if it solves his problem, that is the "easiest, most comfortable" option.

Not true! You are overlooking the obvious. You are the one who is stuck on the CPAP paradigm and is oblivious to "the easiest, most comfortable (for most people), most widely used, and cheapest option that anyone in your situation should absolutely try first."

Uhm... that almost seems to be the opposite of what you said in your previous post. Which is classic Troll behavior - and is what you are coming across as. SleepingUgly is by no means oblivious as she is one of the more respected forum members on this thread.

I've never been one to jump on the band-wagon of the "most widely used". So far it appears to be "most widely used" because it's the most widely prescribed and apnea patients don't appear to be given a choice. In my experience, the Provent plugs are WAY more comfortable than that infernal suffocation machine you guys refer to as a "CPAP". If more people try Provent and it works, it will become more standardized and the cost will likely go down. When a critical mass occurs it will likely become covered by insurance. I don't mind helping to pave that path - though still too early to see if that's the path I'll take.

I don't mind being a guinea-pig since I would otherwise not be getting treatment at the moment. I waste $60 per month easily, so can go without a latte every other day or take my lunch to work for a few days to pay for it. So far, with only two applicable nights of trying Provent, it seems worth it.

The Choker wrote:Not true! You are overlooking the obvious. You are the one who is stuck on the CPAP paradigm and is oblivious to "the easiest, most comfortable (for most people), most widely used, and cheapest option that anyone in your situation should absolutely try first."

What would that be? To go gentle into that good night?

The Choker wrote: You might not want to be too cocky at this stage since you have entirely overlooked the easiest, most comfortable (for most people), most widely used, and cheapest option that anyone in your situation should absolutely try first.

I don't know why you want to play games but the only thing you could be talking about is avoiding backsleeping - sleeping only on your sides or stomach. It is very cheap and it is widely used by snorers. It is also prescribed by some sleep doctors when the sleep study indicates it.

I routinely advise anyone who has a problem to avoid backsleeping until they get the results of their study and a therapy plan. Personally, if I were waiting on study results, avoidance of backsleeping is what I would do in the interim. Trying Provent would be premature IMO.

I think it might also be discovered that, in general, avoidance of backsleeping is more effective than Provent without the cost or the aggravation -

NightMonkey wrote:I think it might also be discovered that, in general, avoidance of backsleeping is more effective than Provent without the cost or the aggravation

Where is there evidence that avoidance of supine sleep in anyone other than someone with positional apnea would be more effective than Provent? And obviously on Provent, one can avoid back sleeping as well. In fact, I wouldn't recommend back sleeping to anyone with apnea, unless they know something about gravity that I don't.

SleepingUgly wrote: Where is there evidence that avoidance of supine sleep in anyone other than someone with positional apnea would be more effective than Provent?

It is in every decent sleep study that has ever been undertaken where the patient slept in more than one position. A meta analysis of tens of thousands of studies from one good sleep lab would show it.

Remember this type of therapy has a very low threshold of success to meet to be as effective as Provent. These are just median numbers (half did worse):

SleepingUgly wrote: In fact, I wouldn't recommend back sleeping to anyone with apnea

Of course not. The whole point is to avoid backsleeping until the OP knows the results of her study and starts a therapy based on the study.

SU, At this point it seems strange that you want to enter into a debate promoting the benefits of Provent. You said you are getting Provent today and will try them. That makes perfect sense to me. You will (hopefully) be able to determine whether Provent is an improvement over your current therapy or whether it is less effective. Debate at this point is meaningless.

You seem to have suffered a lot. I hope you are one of the outliers for whom Provent is a highly effective solution.

NightMonkey wrote:

SleepingUgly wrote: Where is there evidence that avoidance of supine sleep in anyone other than someone with positional apnea would be more effective than Provent?

It is in every decent sleep study that has ever been undertaken where the patient slept in more than one position. A meta analysis of tens of thousands of studies from one good sleep lab would show it.

You said non-supine sleeping is more effective than Provent, not that non-supine sleeping is more effective than supine sleeping.

SU, At this point it seems strange that you want to enter into a debate promoting the benefits of Provent. You said you are getting Provent today and will try them. That makes perfect sense to me. You will (hopefully) be able to determine whether Provent is an improvement over your current therapy or whether it is less effective. Debate at this point is meaningless.

I'm not promoting the benefits of Provent. I'm promoting the benefits of truth. If you tell people that tennis balls are more effective than Provent, some certain percentage of people will believe that baseless statement, and may even act on it.

You seem to have suffered a lot. I hope you are one of the outliers for whom Provent is a highly effective solution.

Thank you.

neurotony wrote:…Nate, why didn't you ever try Provent? To me, it's something I have to try before moving to a machine. …

Prior to testing my significant other reported snoring and numerous episodes of my stopping breathing during the night, followed by sudden gasps for air. And during the daytime, I was repeatedly falling asleep, even in mid-conversation and even while I myself was speaking, sometimes in mid-sentence. On one occasion, we had a frightening experience with me repeatedly starting to fall asleep while driving on the Interstate, and having to pull off the road.

Yet, I woke up each morning insisting that I had had a wonderful 7-8 hours of sleep and felt totally refreshed. I happily bounded out of bed each morning! So I was convinced that after testing I was going to make a pitch for trying Provent.

Until I got back my written results.

My diagnosis was as follows:

1) Central Sleep Apnea complicating CPAP treatment of Obstructive Sleep Apnea (Central Sleep Apnea Due to Medical Condition, Not Cheyne Stokes (327.27))
2) Obstructive Sleep Apnea (327.23) (AHI=29.0 events/hour)
3) Periodic Limb Movement Disorder (327.51) (PLM Index=15.9 events/hour)
4) Physiological Hypersomnia (327.10) — ESS=16/24)
5. Nocturnal Premature Ventricular Contractions (427.69)
6. Nocturnal Premature Atrial Contractions (427.61)

Comments: …The degree of sleep fragmentation and disruption of sleep architecture places the patient at risk for cognitive impairments and metabolic sequelae including hypertension, cardiovascular disease, diabetes, and the metabolic syndrome.

Respectfully, Nate