A new apnea patient's journey - starting with Provent

The Choker wrote:We had a number of people post brief testimonials and I am sure that some of them were employees of Ventus and their posts could not be trusted.

NightMonkey wrote:You had a sleep study. What was your AHI? What levels of desats did you have? What was your RDI?

I'm getting the Provent tomorrow, I think! I look forward to being accused of being an employee of Ventus and to undergoing a rigorous interrogation! I don't want to hijack, so I'll start a new thread once I've used them. I sure hope I don't have to report that I couldn't even tolerate wearing them... Yikes.

Good luck SU.

neurotony wrote: After I put the Provent plugs in I kept feeling wind on my lips and kept thinking the seal was broken. It was one of the vents that was pushing my exhale downward over my mouth, but it still bothered me.

That would bother me too! What's the trick to not having it vent downward? (Course upward toward the eye doesn't sound good either!)

sleepingugly, no one would question you with over 3000 posts. it's the people that come one with one or two post with the latest non-cpap miracle that make our eyebrows go up a bit in skepticism. Where are you people getting samples? The "authorized dealer clinic/DME I had to go to refused to do that and their excuse was that it took weeks to get use to them. Sample people would never return. Only a few places have them and I had to go to someone 30 miles away.

neverbetter wrote:Where are you people getting samples?

A doctor near me dispenses them. I don't know if I'm getting samples or a month's supply. I guess I'll find out tomorrow. The proventtherapy.com site lists dispensers by zip code, I believe.

SleepingUgly wrote:

neurotony wrote: After I put the Provent plugs in I kept feeling wind on my lips and kept thinking the seal was broken. It was one of the vents that was pushing my exhale downward over my mouth, but it still bothered me.

That would bother me too! What's the trick to not having it vent downward? (Course upward toward the eye doesn't sound good either!)

The first night the air was exhaled out and away, so I didn't feel it. There are tabs on the Provent, so they may be oriented. I thought I did them right, but wondering if I switched the nostrils which kinda makes sense that the air would be going down and in rather than up and away. I am hoping I was the problem.

I'd like to think if you can tolerate a CPAP machine that you'd have little problems with this. But I may be that "fluke" patient who just took to the Provent plugs easily - and I'm not going to argue with that

SleepingUgly - please post a link to your study in this thread. Let's see if we can kind of post the same types of readings.

The graphs I'm posting are just coming out of a sleep monitor app on my iPhone. I strap it to my chest with an Ace bandage and schedule it to start recording 45 minutes if I wake up in the night and stop it. And schedule it up to an 1.5 hour after I lay down if I'm watching TV. I want to catch myself sleeping, not going to sleep.

Do you have an oximeter? I am seeing if I can get one locally instead of waiting to get it shipped via online. Oximeter readings seem to be more of a gold standard.

I'm excited for you and fingers-crossed!

I do have an oximeter, but off CPAP my SaO2 is 92-93%, so I'm not sure an oximeter is going to be super helpful. If I adjust to this and seem to be doing well, I will try the oximeter, but early on I won't need any other uncomfortable paraphernalia on me.

SleepingUgly wrote:

neverbetter wrote:Where are you people getting samples?

A doctor near me dispenses them. I don't know if I'm getting samples or a month's supply. I guess I'll find out tomorrow. The proventtherapy.com site lists dispensers by zip code, I believe.

My Sleep Clinic hadn't heard of Provent, so I had to do the footwork myself. I found a local distibutor by going to the Provent "health care provider site" (yes, even though I'm not a provider - gasp!). They list the distributors there in the search box in the "Prescribing Information" section of the site (no, I'm not posting a link). That's how I found where to get mine. There are two distributors in Portland where I live. One was $22 and the other was $25 for the trial pack, so you may want to call around first. Once I confirmed they had it, I gave their info to my sleep clinic and they called in the prescription and I picked it up.

I got a prescription for the 10-day Trial and for the 30-day. The cost per plug is about the same. I just picked up the Trial and we'll see how this week goes as to whether I pick up the 30 day pack.

SleepingUgly wrote:I do have an oximeter, but off CPAP my SaO2 is 92-93%, so I'm not sure an oximeter is going to be super helpful. If I adjust to this and seem to be doing well, I will try the oximeter, but early on I won't need any other uncomfortable paraphernalia on me.

So besides the snore app, anything else you recommend we use to assess ourselves? I'm still kind of a newbie to the apnea thing so any suggestions are welcome. I'm looking for an oximeter mainly because it's what the other interested posters are asking information about.

If you didn't have much of a drop in your oxygen levels on your sleep study you may be in the same boat that SleepingUgly is that adding an oximeter may not show you a lot.
Now if you had some significant desats...then for sure an oximeter would be useful to have.
Has anyone mentioned drops in Oxygen levels to you? I know you don't have a copy of your sleep study yet but was just wondering if someone mentioned Oxygen levels.

neurotony wrote:

SleepingUgly wrote:

neverbetter wrote:Where are you people getting samples?

A doctor near me dispenses them. I don't know if I'm getting samples or a month's supply. I guess I'll find out tomorrow. The proventtherapy.com site lists dispensers by zip code, I believe.

My Sleep Clinic hadn't heard of Provent, so I had to do the footwork myself. I found a local distibutor by going to the Provent "health care provider site" (yes, even though I'm not a provider - gasp!). They list the distributors there in the search box in the "Prescribing Information" section of the site (no, I'm not posting a link). That's how I found where to get mine. There are two distributors in Portland where I live. One was $22 and the other was $25 for the trial pack, so you may want to call around first. Once I confirmed they had it, I gave their info to my sleep clinic and they called in the prescription and I picked it up.

I got a prescription for the 10-day Trial and for the 30-day. The cost per plug is about the same. I just picked up the Trial and we'll see how this week goes as to whether I pick up the 30 day pack.

Now you've got me really confused. Doctors don't write prescriptions without first making a diagnosis. And they don't make a diagnosis without first studying the lab results. So, with all due respect to you and to your doctor, if your doctor already has the lab results from the sleep study, why don't you?

Respectfully, Nate

neurotony wrote:So besides the snore app, anything else you recommend we use to assess ourselves? I'm still kind of a newbie to the apnea thing so any suggestions are welcome. I'm looking for an oximeter mainly because it's what the other interested posters are asking information about.

As Pugsy said, unless you have significant desaturations, an oximeter may not be that useful. I can't think of any device that can help you other than just determining from use whether (1) you tolerate it and (2) you feel better (assuming you have daytime symptoms without treatment). If yes to those, I'd undergo a sleep study with them.

NateS wrote:
Now you've got me really confused. Doctors don't write prescriptions without first making a diagnosis. And they don't make a diagnosis without first studying the lab results. So, with all due respect to you and to your doctor, if your doctor already has the lab results from the sleep study, why don't you?

Respectfully, Nate

As hard as this may be, take it at face value Nate. I did the sleep study this past Thursday (a week now) and started Provent Tuesday night. I don't have my post-study consultation, when I get my results, until May 22nd. The preliminary results were enough for the Dr to prescribe Provent, which was at my request. We both see it as experimental in nature and I am thankful she was willing to prescribe it so I have results from it before the consultation. If I waited for the post-study consult, I'd be getting no therapy at all for over 3 weeks.

I did call the sleep center today to get the AHI, desat and RDI numbers to post here. But the office has a minimum 10 business day wait policy to even have the results available - and they stood by it. I might be able to get the numbers next week but they told me to wait until the consultation. I will post them when I have them, so hold your horses I think it's funny no one has really even discussed the actual results so far. T

Yes, it's only been two nights and last night was admittedly a bust. But. Still. C'mon people - I'm inviting you all on this fairly intimate journey with me. If you aren't interested, please don't read the thread. If you are cynical, hold off posting and just watch as the experimental journey unfolds - you are learning all this along with me and I don't have all the answers. If you are interested and curious, post something constructive and helpful - we're on this journey together. I've learned a lot from the forum members already - and thanks!

I have a lot of hope wrapped around Provent since I really don't want a CPAP machine (my bias). If it doesn't work, it doesn't work and I'll move forward from there. The first night was promising, the second kind of an experimental bust since the plugs fell out - let's see how the rest of the experiment unfolds, shall we?

Special shouts out to Pugsy and SleepingUgly - you've made the journaling worthwhile. I'll go on another experimental journey with you two any day!

SleeipingUgly I'm looking forward to seeing your Provent experience too. Godspeed!

neurotony wrote:

NateS wrote:
Now you've got me really confused. Doctors don't write prescriptions without first making a diagnosis. And they don't make a diagnosis without first studying the lab results. So, with all due respect to you and to your doctor, if your doctor already has the lab results from the sleep study, why don't you?

Respectfully, Nate

…C'mon people - I'm inviting you all on this fairly intimate journey with me. If you aren't interested, please don't read the thread.…

I don't understand you chiding me for asking questions, questions which I think are helpful and instructive to you.

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.

If you are cynical, hold off posting and just watch…

That's not how the Socratic Method, the principal form of education in the Western Hemisphere, works, neuro.

The Socratic method …, is a form of inquiry and debate between individuals with opposing viewpoints based on asking and answering questions to stimulate critical thinking and to illuminate ideas.

http://en.wikipedia.org/wiki/Socratic_method

Nate

Nate, I'm over the non-topic related posts. I think I answered your question as to when I'll get my results. 'Nuff said.

Back to the order at hand, I was a research neuroscientist for about 10 yrs (about 12 years ago), and PubMed was one of my core sources for current research information, especially since it includes the briefs which precede an article's publication. Having been in the medical research field, I KNOW some of the best treatment options aren't even on the market yet - which is frustrating. But they do all need to be tested and PubMed has the most recent research results.

My "newer is better" leaning may be why I am prone to try the newest new-fangled gadget, like Provent. I set that aside and did some research for Nate tonight and learned a bit myself. The research was based on your rather pertinent question here:

NateS wrote: Clearly, cpap did not treat my Central Sleep Apnea, but made it worse. Is there any evidence suggesting that Provent treats Central Sleep Apnea? If not, what are the consequences of leaving it untreated? Is it possible that, like cpap, Provent may make Central Sleep Apnea worse? These are the questions I asked myself, which led to me reluctantly abandoning my resistance to the mask and machine and my initial plan to try Provent. (And although I was surprised to find that my adjustment to an ASV machine (S9 VPAP Adjust) was much easier than I had expected, that is not my point here.)

I searched pubmed for the terms epap (the type of treatment Provent is) and central sleep apnea and didn't find much direct research. There was a published study in Dec 2011 which sought to "compare the performance of the advanced servo-ventilator (BiPAP autoSV Advanced) with conventional servo-ventilator (BiPAP autoSV) in treating central sleep apnea (CSA)." Interesting thing is, the "advanced" part of the new SVA machine is that it has an EPAP component:

The features of autoSV Advanced include an automatic expiratory pressure (EPAP) adjustment, an advanced algorithm for distinguishing open versus obstructed airway apnea, a modified auto backup rate which is proportional to subject's baseline breathing rate, and a variable inspiratory support

The conclusion was that it was more effective than the conventional machine, but they didn't attribute that to a single "advanced" feature like EPAP. Here's the abstract link:
http://www.ncbi.nlm.nih.gov/pubmed/22131607


Another article coupled EPAP with BPAP (whatever that is) to study it's effect on CSA on patients with heart failure. Again, not a direct study of EPAP on patients with CSA and it's combined with another form of treatment, BPAP (I'm still not sure what that is). Still, it was more effective then BPAP alone:

Flow-targeted dynamic BPAP support (mean EPAP, 6.5+/-1.7 cm H2O; maximal IPAP, 21.9+/-2.1 cm H2O) further reduced the AHI to 4+/-1/h of sleep compared to the untreated (p<0.001) and CPAP or BPAP night (p=0.002). After the first night of flow-targeted dynamic BPAP support, patients rated on an analog scale (range, 0 to 10) the treatment as comfortable (6.9+/-0.6), and the sleep quality as improved compared to previous nights (7.4+/-0.6).

Of course they conclude the "Flow-targeted dynamic BPAP" was effective. Here's the link to the summary:

http://www.ncbi.nlm.nih.gov/pubmed/17951617

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.

Nate, maybe an EPAP device alone isn't the answer; perhaps, as these studies show, it may be beneficial as part of a hybrid treatment strategy. The EPAP seems to be effective with obstructed airway apnea, which seems to be the bulk of the advancements for the "BiPAP autoSV Advanced" and the "dynamic BPAP" treatments in these articles. Both are interesting articles though I'd like to see what EPAP device they used (they don't mention Provent by name). I hope it helps you a bit to see what's out there. You may want to search for central sleep apnea to see what other things are on the rise for CSA treatment.

Nate, why didn't you ever try Provent? To me, it's something I have to try before moving to a machine. I realize not everyone has that choice. Provent seems to have the Apnea researchers confused, cuz they don't know who or why it works for who it works for. As Rapaport mentioned it kind of rattles the cages a bit since there's some underlying reason they haven't discovered why it works - or doesn't.