A new apnea patient's journey - starting with Provent

[osako]

Congrats neurotony, on finding a therapy that seems to be helping. I wonder, have you thought about how to monitor the effectiveness of the treatment over the course of months or years? One nice thing about the data-capabile CPAP machine is that it does give you some detailed information about your therapy. I see that you've found an app to help monitor snoring activity . Do you see that as a viable long term solution, or perhaps you have something else in mind? Not being critical, just curious.

[Therapist]

He doesn't even have his diagnosis yet so he can't know what the solution is.

[SleepingUgly]

He doesn't even have his diagnosis yet so he can't know what the solution is.

He does have a diagnosis: OSA.

[jimcb8]

I purchased a 10 day a starter kit from an online subscriber for 23 +shipping. I used it the first night and had the following experience.
The adhesive on the patch does not stick too well, even after you wash you nose with soap and water as suggested. The correct positioning of the patch did cause me some minor problems, but again due the lack of adhesion on the patch. I chalked that up to inexperience with the patch and perhaps I handled it too often. I did not sleep well at all the first night, mainly due to the change in breathing pattern, from a cpap machine. With Provent you must breathe at first through your mouth only and when you fall asleep you automatically start to breathe thru your nose for the patch to work. Well, I could not fall asleep.
The second night was a little bit better. I still had issues with the adhesive on the patch, it would not create a seal. I loved the freedom from the hoses on my cpap machine etc. and I did start to get used to the new breathing pattern.
After 2 nights I decided that I would use Provent only when I traveled. It would free me from lugging my cpap thru the airport and finding distilled water when I arrive at my destination. The online supplier(EZ something) sells a 30 day supply for $60 +8.95 shipping.
It is hard for Provent to beat my Resmed Fx nasal pillow and the restful sleep I receive from it.
It is a great solution for travel and too costly for everyday use, compared to my Resmed CPAP. I don't know if continued use of the patches would have eventually be as restful as my FX nasal pillow, I doubt it.

[SleepingUgly]

jimcb8, I wash and dry my face, and also wipe my nose with rubbing alcohol, and I haven't had problems with the stickers sticking. I was told some people get two nights out of the stickers, but I'm not ready to try that, as I don't want to compromise my "experiment" with them. I think if you aren't used to using them, and don't take the time to adapt to them, trying to use them while traveling will only make for a miserable, sleep-deprived trip...but that's just a guess.

[RandyJ]

neurotony,

While I find this thread interesting, I wanted to comment on one thing that I thought of when reading your first post: a first experience with cpap in the sleep study setting is quite far from the reality of using cpap at home. I too experienced the sensation of not getting enough air when they first fitted a mask to my face. What I learned later and which explained a lot was that they started my titration at 6cm pressure. I was eventually titrated at 14cm. I had to try to fall asleep getting only 6cm; for me it felt like no air at all. Even today when I put on the mask, I never use ramp, I just start at 14cm, which feels fine to me.

If the Provent doesn't work out for you, I just wanted you to be aware of this. I told the tech at my sleep study that regardless of the outcome, I couldn't imagine myself wearing a mask to sleep. Now I can't imagine going to sleep without it. If you find that you still have lots of desats on Provent, don't dismiss cpap without giving it a try. I promise you, it's not the same as a sleep study. I sleep like a baby with cpap.

[NateS]

Nate, I've never heard of a custom Ruby. Do you just mean that you buy it in small, medium, or large? How is it better than the adjustable one? I would think it would stretch out over time and become too loose. Have you had yours long enough to speak to that?

I didn't mean it was a custom-cut. Sorry if I gave that impression. I originally purchased an adjustable Ruby. I could never get it to stay on right. It seems to have been cut from a somewhat different pattern if you compare them both up closely. I keep it as a spare. I am using a Large Ruby which i got afterwards. Here is my review of my fixed-size Ruby, which I have now been using for about 3 months. It doesn't appear to have stretched any so far:

This is a high quality product and really works, because of its unique design, when most chin restraints fail because they slip off in the middle of the night.

Sleep Restfully was very helpful in making sure that I got the right size, which was important because the sizes tend to run a lot smaller than regular hat sizes, because of the stretchy nature of the material and the need for it to fit snug to work.

Here are the fitting instructions they sent me to make sure you get the right size:

Sizing Instructions for TMS-09 Series Chin Straps
You will require a cloth tape measurer and an assistant
Have the assistant measure1/2 head circumference, follow these 2 steps:

1. Place end of tape measurer in middle of chin -- have patient hold this end to their chin
2. Measure going toward patient's ear and continue to top middle of head.

(However I just measured all the way around and then divided by 2)

TMS-09S (Small) 10" to 11"
TMS-09M (Medium) 11" to 12"
TMS-09L (Large) 12" to 13"

ADJUSTABLE CHINSTRAPS:
TMS-09ADJ 12" to 13"
TMS-09 ADJXL 14" and above

UPDATE: I'd better pass on this tip. This chinstrap has turned out to be even better than I had originally thought, since I discovered that I was putting it on wrong!

My natural inclination was to put my head through the largest of the three openings, with the label ending up in the back of my head, but near the top. But this caused the front vertical straps to come down annoyingly close to my eyes.

Now I have discovered that this was wrong!

Instead, I put my head through the middle-sized opening, with the label ending up in the back of my head but way down near my neck. That puts my face through the largest opening, allowing the front vertical straps to stay out of my face and end up on the side of my head just in front of my ears.

This is much, much more comfortable all the way around, and holds my chin a little snugger too.

Hope this helps!

Regards, Nate

[NateS]

I'm not sure I really need to stop all snoring since I feel better overall…

Yeah, right. My snoring has never bothered me either.

But my girlfriend sure had an opinion about it.

Nate

[SleepingUgly]

Ooops, forgot to post a link to my thread about Provent:

viewtopic/t77581/My-experience-with-Pro ... ml#p706661

[ChicagoGranny]

In clinical practice, the clinician is frequently
faced with having to make a decision between a therapy
that has a better success rate (such as CPAP therapy) and other
available treatments that have relatively lower response rates
but are more likely to be used by the patient. In this context,
the device represents a welcome addition to the available armamentarium
to treat these patients.

In continuing to read about Provent something struck me as scary. About a week ago I had a cold (or maybe pollen allergies) for two nights and my nose was totally stuffy. But thanks to my FFM, I was able to breathe through my mouth for most of the two nights and still get treatment.

The scary thought was about being dependent on Provent and not having treatment for those two nights???

As a person who has successfully used CPAP, I would not consider Provent as a viable alternative. Not even for traveling.

But then I am one of those people who feels soothed by my pressurized mask each evening.

[SleepingUgly]

The scary thought was about being dependent on Provent and not having treatment for those two nights???

A person could still use a CPAP when they had a cold, even if they typically used Provent. Frankly, I have no solution for when I have a cold right now, as I've never met a FFM that worked for me. So far I've managed with nasal pillows even with colds... knock on wood...

I don't think anyone here is advocating that those who are having no issues with CPAP abandon CPAP and come over to the dark side of Provent. I think it's a consideration for anyone who is not doing well on CPAP or doesn't want to use CPAP.

Options are always good.

[the_nap_ster]

Options are always good.

This is a simple truth. Not everything will work for everyone, but the more options there are, the better for everyone.

I am having a hard enough time making nasal pillows work, so Provent probably isn't in my short-term future. BUT! I do live in an area prone to earthquakes and other exciting disturbances. (Thank you, Los Angeles!) I have, in the past, been without power at my place for four+ days at a time.

Now, I have a backup S9, and will be buying a battery shortly, but the reality is that no matter how prepared I am to keep my APAP going, power options might not be sufficient. This is another place I think Provent might be helpful.

I know it's an adjustment to use, but it is most likely better than nothing. It is not pricey for me to keep some in our emergency kit, and I think that is just what I'm going to do. So thank you all for doing the testing/learning/teaching. You are doing a service to the entire OSA community.

[neurotony]

I purchased a 10 day a starter kit from an online subscriber for 23 +shipping. I used it the first night and had the following experience.
The adhesive on the patch does not stick too well, even after you wash you nose with soap and water as suggested. The correct positioning of the patch did cause me some minor problems, but again due the lack of adhesion on the patch. I chalked that up to inexperience with the patch and perhaps I handled it too often.

Jim - it's not your inexperience, I had the Provent plugs fall out on my 2nd night in, see the post here and the graph - viewtopic.php?f=1&t=77392&st=0&sk=t&sd=a&start=27. Last night I went through three packs, they just kept falling off. I even shaved at 3 am just in case it was my light stubble. So that makes 4 out of 10 duds in my trial pack. If there's a 40% failure in the adhesive that's not good. I'll start using SU's suggestion of wiping with isopropyl alcohol too.

I have figured out the best way for them to go in. After you take them out of the package, you hold it out in front of you with the nose-plugs facing you (the back of the board) and the little tabs pointing up (which are on the flip-side of the board). Essentially you are looking at the back of the card and see the tabs in the mirror. That's exactly how they go in. I also start from the bottom of the nostril and go up, since the bottom where the nose meets the upper philtrum is the hardest to get the fit right.

In my experience, if there's going to be a leak it occurs where the two plugs meet at the upper part of the philtrum. And repositioning doesn't work since the adhesive doesn't appear to be strong enough to handle reapplication. Again, I'll take SU's suggestion on that one and see if there's improvement with adhesion.

I'll do more updates tomorrow.

[neurotony]

The scary thought was about being dependent on Provent and not having treatment for those two nights???

As a person who has successfully used CPAP, I would not consider Provent as a viable alternative. Not even for traveling.

But then I am one of those people who feels soothed by my pressurized mask each evening.

I think you touched on a valuable point - choice and preference. We're lucky to have these options available and to be able to pick one over the other without much impact is nice. I realize Provent isn't right for everyone, but I know a machine isn't right for me.

It's going to be a small sub-set of the Apnea community that Provent may work for. Of the 50% that it works for and then the subsequent 50% that it's shown to be effective treatment for I wonder how many of those are going to be excluded due to sinus or nasal issues?

But for those of us where it's working, it's the right treatment. The sleep medicine community doesn't seem to have the criteria down for when it's appropriate treatment. Which is kind of why it's up to those of us who have willingness to try it. We'll be the one's suffering the next day if it doesn't work, we can't tolerate it or when it doesn't stick. It was a perfect storm of sorts for me that I am taking it now, before my sleep study results are in to have a baseline to discuss. I think I am my doctor's first patient on Provent, so she's learning right along with me - though I'm sure at a faster pace. But I'm the one putting it on every night and monitoring myself.

I'm hoping it's enough to do another study with to see how effective it is. I can see that my snore level is down. I can feel that I'm alert and awake throughout the day. But is it enough? I can't say that with authority. So far though, it's my preferred option over a machine. I'm thinking a mouthpiece maybe as a back-up, we'll see.

[SleepingUgly]

Neurotropy, where are you????