A new apnea patient's journey - starting with Provent

SleepingUgly wrote:Neurotropy, where are you????

Woops - sorry, I was on vacation visiting my family. I'm of the age where I can stay off the interw3bz for a week. heh. Overall the trip went well with Provent. I had one non-adhesion night but otherwise went without a hitch!

My Sleep Study Results

NateS wrote: Perhaps you have already received and studied the contents of your sleep study, but you don't mention having done so, nor do you mention its contents. In the interests of the full, fair and illuminating discussion of the issues you raised, and for your own benefit, would you care to share that information?

Best regards, Nate

Nate, I got my sleep study results Tuesday and, as promised, here they are below. It was a split study with a baseline and then CPAP measurements. When I noted the 1% difference in Average SaO2, the Dr. noted that the Sleep Tech was adjusting settings throughout which would impact effectiveness.

Implication: Severe Obstructive Sleep Apnea
All events recorded are hypopnea, not apnea.

Baseline Results:
Total Time: 229 Minutes
AHI: 45
Average SaO2 level: 92%
Lowest Sa02: 85
Total Time below 88%: 3 minutes
Time below 90% SaO2: 23 minutes
Time in REM: none
Sleep Efficiency: 58%

CPAP Results:
Total Time: 176.5 Minutes
AHI: 1.7
Average SaO2 level: 92%
Lowest Sa02: 85
Total Time below 88%: 0 minutes
Time below 90% SaO2: 0 minutes
Time in REM: 58 minutes
REM AHI: 4.1
Sleep Efficiency: 80.2

The most interesting thing to me, which isn't in the summary notes, is that I noticed all of the low SaO2 recordings were when I was on my back (which is general for anyone the Dr. mentioned). If you subtract the time I stay on my back, the baseline AHI drops below 20 which knocks me out of the "severe" range.

I showed the Dr. the same graphs I posted here and she was impressed. Her observation was that I was getting therapeutic benefit from Provent. We discussed the 20-45 minutes of snoring per night on Provent and agreed that, combined with the sleep study results, this is likely occuring when I'm sleeping on my back and breathing through my mouth. We agreed that a chin strap would likely improve results. I will likely need a chin-strap if I use a CPAP machine too.

We will also be doing a sleep study with Provent in a couple months. I suggested a split study with CPAP so we can see which is the most therapeutic option for me and she agreed. My ego liked that she felt I was very informed on the topic and am aware of the limitations. While I feel Provent has been very effective for me, I know it may not be the most effective therapy compared to the Gold Standard of CPAP.

She prescribed a chin strap, an SaO2 monitor and another round of Provent. I'll be doing 3 tests over the weekend:
1st Night: SaO2 monitoring with Provent
2nd Night: SaO2 monitoring with Provent + Chinstrap
I may also do a night as baseline, though I don't really want to and the doctor didn't ask for it. My curiosity to know what my baseline levels for at-home sleep are may override reason. Heh

Well, there you have it. Carry on.

SleepingUgly wrote:

ozij wrote:Wishing you lot's of success with Provent, SU. I hope you too will share your results with us. It would be so wonderful if this worked better for you than CPAP has.
When are you getting yours?

I should be finding out today when I will get them. Hopefully it won't take too long. I was planning to start a thread about my experience with Provent once I get started.

I also saw those graphs from the makers of Provent, showing how much it reduced the AHI of mild, moderate, and severe groups. I mentioned to my doctor that considering my AHI is in the severe range during REM, it might not lower it into the normal range (all this assuming I can even tolerate the apparatus!). I didn't get a very specific answer to that, other than the impression that it's hard to know who it will help and who it won't, and it's worth a try. And as you would say, aggregate data doesn't always generalize to individuals! For me, it would be a miracle if I can (1) tolerate it, and (2) it reduces my EDS. If I can get through those two steps (please, please, please), then I would have a sleep study with them. Without CPAP my SaO2 is 92-93%, so I am not too worried about anything other than whether it helps me symptomatically. At this point, if I have a significant residual AHI in REM, but I am not tired during the day and my SaO2 is good, I will feel like I've won the lottery, as that's better off than I am now.

I will report back when I start using them.

Sorry if I post in here and have very bad misconceptions of the situation. There are quite long discussions of provent in many threads and I also looked at proventtherapy.com. But I must say I am so sorry for your condition and the pain you are suffering through. You are very determined and I only hope you find perfect relief soon.

I don't know what kind of lungs I have, but the best solution appears to be to breathe very shallowly so that an inhale takes 3 seconds max and then the exhale will only take 15 seconds or whatever as opposed to half a month. It's the loooooooooooong exhale that's aggravating to deal with while awake. Actually, the best idea seems to be not to breathe at all. Perhaps a fanny pack and a noose would be the perfect combination therapy.

Hell if I'm giving up yet, though.

That quote in particular caught my eye and you certainly need some relief from the problem.

Now about my possible misconceptions, I understand you have been compliant with CPAP for more than three years and you are very active in cpaptalk and are very educated about CPAP and sleep disorders. You have one of the best machines on the market which is very flexible in offering different treatment options.

Given all this I have to ask why you continue your trials with provent? It seems to be promoted as a moderately effective therapy for those who do not tolerate CPAP; for use by CPAPers while traveling; for use by snorers; and for use by CPAP users in emergencies such as power failure. You do not fit these profiles and I have to wonder why, given that you were CPAP compliant, that someone gave you the idea that provent might treat your condition effectively?

I know you have a lot of stress presently so please don't feel you have any obligation to respond to this old man's musings. You have made many posts under this subject and if I were to read them all I might agree that a thorough provent trial is appropriate for you.

In any case my wishes for a quick resolution to your sleep problems.

Sleep2Die4 wrote: But I must say I am so sorry for your condition and the pain you are suffering through. You are very determined and I only hope you find perfect relief soon.

Thank you.

Now about my possible misconceptions, I understand you have been compliant with CPAP for more than three years and you are very active in cpaptalk and are very educated about CPAP and sleep disorders. You have one of the best machines on the market which is very flexible in offering different treatment options.

Given all this I have to ask why you continue your trials with provent? It seems to be promoted as a moderately effective therapy for those who do not tolerate CPAP; for use by CPAPers while traveling; for use by snorers; and for use by CPAP users in emergencies such as power failure. You do not fit these profiles and I have to wonder why, given that you were CPAP compliant, that someone gave you the idea that provent might treat your condition effectively?

Why did I start my Provent trial or why do I continue my Provent trial? I started Provent because I get aerophagia from CPAP at any pressures above about 10cm. While 10cm and below helps my EDS, I still have some EDS. If I can tolerate Provent and if it eliminates my EDS or improves it beyond CPAP, that will be good for me. As for why I continue my trial despite difficulties, I do so in part because I am desperate for it to work and in part because I am stubborn!

It may be promoted as a therapy for those who don't tolerate or are not compliant with CPAP or travelers, but I assume part of the reason for that is that CPAP is more effective so they don't want to advise CPAP-compliant patients who are benefiting from CPAP to go off it. That's not the case for me.

I am not sure that to say that it is "moderately" effective is accurate. I think it's more accurate to say that for some people it's highly effective, for others less so, and for some probably not at all.

SleepingUgly wrote: I am not sure that to say that it is "moderately" effective is accurate. I think it's more accurate to say that for some people it's highly effective, for others less so, and for some probably not at all.

SU, as usual, you are spot-on. And that neither Provent nor your sleep doctor have any defined criteria for who it WILL work for makes it more of a personal choice I think. If CPAP is working for you than there really isn't a reason to switch, though you may want to try it out for travel or emergencies. I didn't have positive experience with CPAP and have with Provent. That's not going to be the case for everyone.

Therapy That (doesn't) Stick.
A Call with Provent Customer Care

As I mentioned on the thread previously I've been having adhesion issues while using Provent. I had a 40% loss of the Provent strip on my 10-pack starter kit, which to me was unacceptable. So I gave them a call to find out what could help improve adhesion and to find out what their replacement policy was.

Aventus thinks their customers are thieves
The call didn't start off well, the customer care representative (rep) blamed me for not putting them on right. She said Aventus' policy is not to replace them because they think their customers are are lying about it not adhering to shill them out of free Provent packs. Well, as someone in customer care, I was taken aback by this fairly firm stance and disavowment of any possible issues with the product. I don't see how any company could be looking for adoption to drive insurance coverage and have this kind of take when a paying customer is calling them with a serious concern.

Aventus refuses to admit there may be a problem in design flaw or occasional issues with the adhesive
I stressed to her how much I want Provent to work and that, when it sticks it works great and I have a whole wonderful new world. But when it comes off I am the one paying the price of a day of exhaustion and being right back to pre-treatment status. I iterated quite a few times that I find it hard to continue with a product that the parent company, Aventus, refuses to back-up or admit there may be a problem with. If they are looking to drive adoption for insurance purposes this isn't the way to go.

While the call never got heated and neither of us lost our cool, we were two people at opposite ends of agreement. A true use of the word "argument" applied wherein we both laid out our cases and stood at opposite ends. I was looking for a solution to the adhesion issue and replacements since each lost Provent is an additional expense. With an annual cost around $820, this issue is costing me over $320 (yes, I ran the numbers before the call). And she was looking to blame me for every instance of lack of adhesion and disavow any corporate liability.

A bending of wills
We finally got to a point where we reviewed the process I use to put them on every night: Wash my face with soap, use isopropyl alcohol as an added astringent , stretch my lip down and apply then from the bottom-up. I mentioned, in my experience, if there's going to be a leak it's going to be where the bottom of the nose meets the philtrum. She agreed that was the most common area for leakage. She also said my application process appeared to be a good one and started to soften on the replacement issue. She even took notes when I mentioned how the tabs ARE oriented even though common guidelines is that they are not.

A recommendation and partial agreement
At the end of the call she said she was assured I was applying them correctly.She recommended using Witch Hazel instead of Isopropyl Alcohol. I agreed to try it and thanked her for working through this with me. She asked me to call back in a couple of weeks to let her know whether it helped. And said if there was still an issue she would consider seeing if we could get replacements for me.

Results
It's been a couple of weeks and I have been on a new 30-day pack since that call. I've been using the Witch Hazel consistently and do have improved adhesion. Witch Hazel caused the Provent to itch some after I put them on so I added a water rinse which solved that. The rate of fall-off while I'm sleeping is down to 20%. Still, that's 1 out of every 5 days - but great improvement over my starter pack. It was weird to me that it was the last three of the starter pack I had this issue with in a row so still wonder if something was up with the manufacturing.

It could also be a design issue. If they know it comes loose around the philtrum ,why aren't they looking at adding an additional tab to secure it more? It seems like it should be a simple fix but I'm sure there are other issues too. Perhaps it's just my funny button-nose

If you're having problems call the help line
I'll be calling next week with the results and let ya'll know how it goes. I'll also write up some guidelines for putting them on too. She was really knowledgeable and once we agreed to disagree the call went well.

If you are having adhesion issues, don't hesitate to call the number on the box. If you are opting out of using Provent before calling them because the "Therapy That Sticks" isn't sticking, how are they going to know it's a general issue they need to address? I think they could resolve a lot of these problems by adding in Witch Hazel Towelettes to the packs. I'll suggest it.

neurotony wrote:She even took notes when I mentioned how the tabs ARE oriented even though common guidelines is that they are not.

What do you mean about this?

I hope the adhesion issue isn't a pervasive issue. I'm still on my first box and have had 0% adhesion problems. One day it even ripped some skin off my nose! Also I find the adhesive sticks to my nose a bit, and I'm rolling/peeling some of it off the next day. I really hope my next box won't have the issues you're having.

SleepingUgly wrote:

neurotony wrote:She even took notes when I mentioned how the tabs ARE oriented even though common guidelines is that they are not.

What do you mean about this?

I'm writing it up with diagrams too. I explained it in an earlier post which I doubt I can find now

SleepingUgly wrote: I hope the adhesion issue isn't a pervasive issue. I'm still on my first box and have had 0% adhesion problems. One day it even ripped some skin off my nose! Also I find the adhesive sticks to my nose a bit, and I'm rolling/peeling some of it off the next day. I really hope my next box won't have the issues you're having.

Are you sleeping through the night now? I don't recall you keeping them on long enough to have experienced it. For me they are falling off 2-3 hours after I go to bed and up to a couple hours before I wake up.

It may be partially caused by skin type and I may be more moist and oily than you Though I think the Witch Hazel has fixed if that was the issue. The issue now seems to be the comes loose where the plugs overlap and meets the philtrum. You can tell when you have a good adhesion and when you don't. From the previous posts, I know I'm not the only one with the adhesion issues. At least you are lucky in that.

Though I've never had it stick so hard to my nose that it left adhesive.

What's your skin type? I'll have to ask a cosmetologist since i have no idea.

What's the lot number on your box? Mine's "31325 s03".

neurotony wrote:Are you sleeping through the night now? I don't recall you keeping them on long enough to have experienced it.

I have logged more than 8 hours with them on, although "sleeping through the night" is not how I would describe it. It's definitely not the # of hours that is making the difference in adhesion, though, as you say yourself:

For me they are falling off 2-3 hours after I go to bed and up to a couple hours before I wake up.

The issue now seems to be the comes loose where the tabs overlap and meets the philtrum.

By tabs do you mean the little part that sticks out from the circle? Those are supposed to point toward your eye, or at least your ear, not down toward your lip.

What's your skin type? I'll have to ask a cosmetologist since i have no idea.

I would call it "combination" with the T-zone being a little more oily than the rest of my face, but that's during the day and I don't think I'm waking up oily.

What's the lot number on your box? Mine's "31325 s03".

31380 S03.

SleepingUgly wrote:
By tabs do you mean the little part that sticks out from the circle? Those are supposed to point toward your eye, or at least your ear, not down toward your lip.

I meant plugs - had "tabs" on the brain. They overlap on my nose and where they meet at the center bottom is where I'll likely have a leak if there is one.

neurotony wrote:My Sleep Study Results

NateS wrote: Perhaps you have already received and studied the contents of your sleep study, but you don't mention having done so, nor do you mention its contents. In the interests of the full, fair and illuminating discussion of the issues you raised, and for your own benefit, would you care to share that information?

Best regards, Nate

Nate, I got my sleep study results Tuesday and, as promised, here they are below. It was a split study with a baseline and then CPAP measurements. When I noted the 1% difference in Average SaO2, the Dr. noted that the Sleep Tech was adjusting settings throughout which would impact effectiveness.

Implication: Severe Obstructive Sleep Apnea
All events recorded are hypopnea, not apnea.

Baseline Results:
Total Time: 229 Minutes
AHI: 45
Average SaO2 level: 92%
Lowest Sa02: 85
Total Time below 88%: 3 minutes
Time below 90% SaO2: 23 minutes
Time in REM: none
Sleep Efficiency: 58%

CPAP Results:
Total Time: 176.5 Minutes
AHI: 1.7
Average SaO2 level: 92%
Lowest Sa02: 85
Total Time below 88%: 0 minutes
Time below 90% SaO2: 0 minutes
Time in REM: 58 minutes
REM AHI: 4.1
Sleep Efficiency: 80.2

The most interesting thing to me, which isn't in the summary notes, is that I noticed all of the low SaO2 recordings were when I was on my back (which is general for anyone the Dr. mentioned). If you subtract the time I stay on my back, the baseline AHI drops below 20 which knocks me out of the "severe" range.

I showed the Dr. the same graphs I posted here and she was impressed. Her observation was that I was getting therapeutic benefit from Provent. We discussed the 20-45 minutes of snoring per night on Provent and agreed that, combined with the sleep study results, this is likely occuring when I'm sleeping on my back and breathing through my mouth. We agreed that a chin strap would likely improve results. I will likely need a chin-strap if I use a CPAP machine too.

We will also be doing a sleep study with Provent in a couple months. I suggested a split study with CPAP so we can see which is the most therapeutic option for me and she agreed. My ego liked that she felt I was very informed on the topic and am aware of the limitations. While I feel Provent has been very effective for me, I know it may not be the most effective therapy compared to the Gold Standard of CPAP.

She prescribed a chin strap, an SaO2 monitor and another round of Provent. I'll be doing 3 tests over the weekend:
1st Night: SaO2 monitoring with Provent
2nd Night: SaO2 monitoring with Provent + Chinstrap
I may also do a night as baseline, though I don't really want to and the doctor didn't ask for it. My curiosity to know what my baseline levels for at-home sleep are may override reason. Heh

Well, there you have it. Carry on.

Thanks for the update.

Good luck to you in your endeavors!

Nate

I did a sleep study monitoring my SP02 levels and pulse using an Oximeter with the Provent strips at home. My doctor requested it to see if my levels were staying up.

1st night I stayed consistently above 90, which is good. 2nd night, they fell off and my Sp02 levels dropped consistently into the 80's from the time (i assume) they fell of to when I woke up without them on. This period lasted for about an hour and a half. And I felt it that morning - I slept in later than normal and felt the fog that had lifted start to descend. It's therapeutic as long as "The Therapy That Sticks" actually sticks, which isn't consistent enough. Of course, I expect Provent to blame me and assume I am trying to steal from them since that's how they perceive their customers.

Not sure if Provent is going to be the solution if they're going to keep falling off. From this thread and others, I know I'm not the only one this happens to. And Aventus' customer care is anything but caring. I'll give Aventus a call next week and see what they say. Will post a follow-up afterward.

Overall I feel much better. I keep testing my memory and have misplaced something twice over the past two months. Once it was a glass of tea I was certain I had put outside . Well, it was outside - on the stairs. The other time was a friend's glasses, which I had sworn I put on the end table to not loose them. Well, I couldn't find them until I realized they were behind the clock on the end-table. So, my new"super-brain" was close but still not close enough. Both of these instances happened on days the Provent strips fell off.

To Provent's credit, I still haven't lost my keys, forgotten my bus pass or any of the other myriad things that filled my days with the act of "looking". I haven't said "I hate you" to myself once in two months. Not too shabby.

I like apnea therapy. I'm just not sure if Provent is going to be THE therapy at this stage since they keep falling off. If it was once a month I might be okay with it, but once or twice a week I'm not okay with.

Too bad we can't combine our experiences. Mine don't fall off if I use rubbing alcohol but I can't keep my mouth shut, making it a very difficult therapy to deal with (either dry mouth and repeated awakenings or chinstrap over my mouth and both mouth and nose occluded, with mouth opening when possible behind chinstrap). Are you using a chinstrap?

neurotony wrote:I did a sleep study monitoring my SP02 levels and pulse using an Oximeter with the Provent strips at home. My doctor requested it to see if my levels were staying up.

1st night I stayed consistently above 90, which is good. 2nd night, they fell off and my Sp02 levels dropped consistently into the 80's from the time (i assume) they fell of to when I woke up without them on. This period lasted for about an hour and a half. And I felt it that morning - I slept in later than normal and felt the fog that had lifted start to descend. It's therapeutic as long as "The Therapy That Sticks" actually sticks, which isn't consistent enough. Of course, I expect Provent to blame me and assume I am trying to steal from them since that's how they perceive their customers.

Neurotony

If you can get the stickiness to work, it looks pretty good. Would you be able to post your Oximeter readings for both nights. I'm very curious as to how well Provent works.

Thanks.

It's been a few months now since went on Provent. The overall effect is positive but I get a general feeling it's not working a well. I did a sleep study last week with Provent and get the results tomorrow. It was a split study, 4 hours on Provent and 4 hours on a Bi-level machine. Unlike the previous sleep study, I slept well on both. Unlike the CPAP machine I easily tolerated the Bi-level.

The previous study and the at-home study I did with the Snore Monitor app both show that my main hypopneic events occurr while I am sleeping on my back. We made sure that on both tests that I spent time on my back. Which I apparently did naturally. thankfully.

I changed sleep centers to one in Portland which has experience with Provent. So I can take some forum questions with me. The Dr mentioned I was only the 4th of his patients to stay on Provent this long. I'm not sure how large the population of his patients that tried it but that's not very promising for Provent.

The sleep study review is at 2pm PST tomorrow, does anyone have any questions they want me to ask or results to ensure I get?

.