Time to refreshed sleep on ASV? If ever?

[justinjustin]

Hi all,

After a lengthy journey through many sleep docs and studies, I finally flew from Canada to see Dr. Krakow about my UARS. And wow this guy knows his stuff.

His lab scored me at an AHI of 20 and RDI of 30, when other labs had me at AH/RDI around 5.

I've qualified for ASV, as they've diagnosed ComplexSA. I've now done a titration on ASV and doing a second tonight.

I woke up on the ASV being told I slept *very* well for 8 hours with AHI of 0.2 and good REM. Yet I still feel rough waking up.

My question: How long until most people experience the 'ahhh!' refreshing mornings of having a good sleep? The next night? A week? Month?


Thanks!
Justin

[lostsheep]

It took about a week for me. I had been feeling terrible for 9 months with a CPAP and then BiPAP, then the ASV. I was titrated by Krakow as well.

[bwexler]

I got my ASV machine in Oct 2013.
I am still wondering about the answer to your question.
I sleep 8-9 hours a night, fall asleep in 10-20 minutes or less, usually wake for 1 bathroom break.
I still crave an afternoon nap unless I am very busy at something.

I think the first hundred years is the hardest, then you settle in.

[sawinglogz]

It took me a couple of days to sleep through the night (getting used to the sound, the mask, etc.). Then I had about a 1-week honeymoon of fantastic rebound sleep, where I felt "great" in the morning. (I went straight from insomnia to ASV, no CPAP/BiPAP.) In retrospect, I was still pretty tired, but I felt so much better than I had previously.

After that week where my body and brain were desperately craving sleep, it took about 2 or 3 months before I didn't feel tired when I woke up. Now (about a year later), I have some mornings where I feel sleepier than others, but in general I'm sleeping well.

But other than when I have a bad night (aerophagia or leaks or aliens), I always feel better in the morning than when I did before ASV. Not always "aaaaah" refreshed, but at least passable.

[JDS74]

This reply is anecdotal, i.e., personal experience not scientifically verified.
I used an Auto BiPap for almost three years and mostly didn't feel refreshed in the morning. I was, however, able to drive down my AHI to consistently below 5.0 and many times below 3.0.

Switched to ASV nine months ago (approximately) and, after about three months, started to get up in the morning feeling better than before. I generally have more energy and am more alert and thinking more clearly (but not always and, in particular, not today ). AHI hovers well above 5.0 on the ASV machine with a significant part of that in Hypopneas. I think, (just my opinion) that detecting excess Hypopneas is one of the things that occurs on one of these machines as they (mine?) seem to be super-sensitive to variations in breath frequency, etc.

So, it can take a while. I never had an aha! moment when I woke up and felt wonderful. It just crept up over time.

[Sir NoddinOff]

Justin: your ASV complaint is very common on this forum. I don't have a lot to add to what others have said (and even then it's all anecdotal), however it took me a long time to get adjusted to the ASV experience. Even now I still have some occasional bad nights when things just don't seem to work. This can all be very challenging but the rewards are usually superior - that is - if you can adjust to the therapy. As a caveat for other readers out there: your apnea condition must warrant ASV or else you are adding multiple layers of complexity and expense to your therapy. Kind of like training for an Iron Man marathon if you only want to tone up your abs Talking to your sleep doctor about your issues would be a good first step, then come back here for some fine tuning.

[justinjustin]

your apnea condition must warrant ASV or else you are adding multiple layers of complexity and expense to your therapy. Kind of like training for an Iron Man marathon if you only want to tone up your abs Talking to your sleep doctor about your issues would be a good first step, then come back here for some fine tuning.

Yep, I was diagnosed by Dr. Krakow (an ASV expert) and was found to have Complex Sleep Apnea. He did two separate night titrations on the ASV machine. Apparently my breathing looks perfect now, but my first night with the ASV didn't give me an instant and noticeable benefit, despite adjusting very well to it and sleeping for 7 hours on ASV.

I'm just hoping this is going to be a solution for me and not the beginning of months/years of more tweaking and stumbling and fatigue.

[Sir NoddinOff]

I'm just hoping this is going to be a solution for me and not the beginning of months/years of more tweaking and stumbling and fatigue.

I wish I could tell you that once you slap on the mask all the problems are over. Sorry, I can't in good faith do that. On the plus side, I don't think you are looking at years of adaptation but a certain number of months is about normal for ASV, at least from what I've heard and experienced. For example: Mask performance is big issue with ASV... you'll have to stay on top of leaks, new technology, cushions wearing out early, dealing with the skin/silicone interface and so on and so forth. IMO, with CPAP or ASV there is rarely a 'magic bullet'... that's why this forum is so inundated with new members asking for help. You seem to have an inquisitive mind and a will to succeed which I suspect will yield positive results very quickly. You'd be surprised how many people can't meet the challenge and throw up their hands in defeat (approx 50%). I don't think that's the way you operate. Please keep us updated.

[Cowboy Casey]

i have been using my ASV for a month, 4 masks later I think I found a winner that works for me and my machine... (pilairo Q) It has gotten better for me, but I think I really wanted this to work... maybe I have willed it to work..

Screenshot 2014-07-11 18.39.19 by cowboycasey, on Flickr

[justinjustin]

[quote="Cowboy Casey"]i have been using my ASV for a month, 4 masks later I think I found a winner that works for me and my machine... (pilairo Q) It has gotten better for me, but I think I really wanted this to work... maybe I have willed it to work..

Assuming I find the perfect/right mask, are you saying that it would take a month to feel better?

What I'm really asking is how many nights of good ASV therapy do most people take before they notice a difference in their fatigue?

[Cowboy Casey]

Justin, we all wish there was an exact time it took.. if every person felt better at 30 days I think everyone would be doing it..

Every person is different... I have been doing this for over 3 years and just now feeling a difference... nothing earth shattering but I am starting to feel better and not so tired.. allot has to do with me, my ASV taking care of centrals, and taking control of my therapy just like you are trying to do... Just keep at it and it should get better... learn everything you can...

[justinjustin]

Justin, we all wish there was an exact time it took.. if every person felt better at 30 days I think everyone would be doing it..

Every person is different... I have been doing this for over 3 years and just now feeling a difference... nothing earth shattering but I am starting to feel better and not so tired.. allot has to do with me, my ASV taking care of centrals, and taking control of my therapy just like you are trying to do... Just keep at it and it should get better... learn everything you can...

Thanks. Yes I understand those points definitely. I feel though that there should be some general consensus on timelines to improvement. Hearing that it takes 3 months doesn't make sense to me intuitively. If the therapy is working and you're fully compliant, it would stand to reason well that you'd notice an immediate difference.

Congrats on your success though.

[Sludge]

Justin, we all wish there was an exact time it took.. if every person felt better at 30 days I think everyone would be doing it..

Every person is different... I have been doing this for over 3 years and just now feeling a difference... nothing earth shattering but I am starting to feel better and not so tired.. allot has to do with me, my ASV taking care of centrals, and taking control of my therapy just like you are trying to do... Just keep at it and it should get better... learn everything you can...

Thanks. Yes I understand those points definitely. I feel though that there should be some general consensus on timelines to improvement. Hearing that it takes 3 months doesn't make sense to me intuitively. If the therapy is working and you're fully compliant, it would stand to reason well that you'd notice an immediate difference.

That is correct.

Significant improvement should be seen after one night, and you should be caught up in 48-72 hours at most.

Even if you subscribe to the Dement Concept of Sleep Debt (which certainly sounds theoretically attractive), you're still talking about maybe 2 weeks.

It boils down to:

• What is the problem; and
• What are you doing to try to fix it.

If you have SDB resulting in disrupted sleep architecture and arousals, then the answer is as above.

If you don't have SDB, or the ASV does not control it, or you have co-morbidity, then the time to reverse sleepiness (and it corrects sleepiness, not fatigue), then the time is x.

At the risk of generalizing, the Krakow approach relies upon correcting the above-noted co-morbity:

Treatment outcomes and intercurrent treatment factors At the point of this chart review for the 39 ASV users with data downloads, the average duration of adherence to this advanced device was 1.31 (SD 0.21) years. Among these 39 ASV users, insomnia and sleepiness questionnaires compared intake to post ASV implementation. ISI scores decreased significantly (16.8 vs. 9.7; p=.001; d=1.40), and ESS scores showed a trend toward a medium-sized decrease (11.2 vs. 9.3; p=0.11; d=0.37). Both these adherence and outcome findings must be viewed cautiously, however, due to intercurrent treatment influencing results. Specifically, among the 56 patients, 50 (89.3%) received coaching for insomnia, 35 (62.5%) utilized education materials for insomnia, 26 (46.4%) were started on an intensive nasal hygiene regimen, 22 (39.3%) were treated with medication for leg jerks, and 4 (7.1%) attended our nightmare treatment clinic.

Adaptive Servo-Ventilation Therapy in a Case Series of Patients with Co-morbid Insomnia and Sleep Apnea

as his concept of "expiratory pressure intolerance" is absurd.

[49er]

Justin, we all wish there was an exact time it took.. if every person felt better at 30 days I think everyone would be doing it..

Every person is different... I have been doing this for over 3 years and just now feeling a difference... nothing earth shattering but I am starting to feel better and not so tired.. allot has to do with me, my ASV taking care of centrals, and taking control of my therapy just like you are trying to do... Just keep at it and it should get better... learn everything you can...

Thanks. Yes I understand those points definitely. I feel though that there should be some general consensus on timelines to improvement. Hearing that it takes 3 months doesn't make sense to me intuitively. If the therapy is working and you're fully compliant, it would stand to reason well that you'd notice an immediate difference.

That is correct.

Significant improvement should be seen after one night, and you should be caught up in 48-72 hours at most.

Even if you subscribe to the Dement Concept of Sleep Debt (which certainly sounds theoretically attractive), you're still talking about maybe 2 weeks.

It boils down to:

• What is the problem; and
• What are you doing to try to fix it.

If you have SDB resulting in disrupted sleep architecture and arousals, then the answer is as above.

If you don't have SDB, or the ASV does not control it, or you have co-morbidity, then the time to reverse sleepiness (and it corrects sleepiness, not fatigue), then the time is x.

At the risk of generalizing, the Krakow approach relies upon correcting the above-noted co-morbity:

Treatment outcomes and intercurrent treatment factors At the point of this chart review for the 39 ASV users with data downloads, the average duration of adherence to this advanced device was 1.31 (SD 0.21) years. Among these 39 ASV users, insomnia and sleepiness questionnaires compared intake to post ASV implementation. ISI scores decreased significantly (16.8 vs. 9.7; p=.001; d=1.40), and ESS scores showed a trend toward a medium-sized decrease (11.2 vs. 9.3; p=0.11; d=0.37). Both these adherence and outcome findings must be viewed cautiously, however, due to intercurrent treatment influencing results. Specifically, among the 56 patients, 50 (89.3%) received coaching for insomnia, 35 (62.5%) utilized education materials for insomnia, 26 (46.4%) were started on an intensive nasal hygiene regimen, 22 (39.3%) were treated with medication for leg jerks, and 4 (7.1%) attended our nightmare treatment clinic.

Adaptive Servo-Ventilation Therapy in a Case Series of Patients with Co-morbid Insomnia and Sleep Apnea

as his concept of "expiratory pressure intolerance" is absurd.

Can you say more about why you feel this way?

Thanks!

49er

[Sludge]

Can you say more about why you feel this way?

What, the "EPI" thing?

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