Any ASV people actually feel rested?

[Kody]

The sleep dept. people said they are done with tweaking my ASV machine, it's as good as it's going to get for me. She told me you can't expect consistently low numbers with an ASV, unlike regular Cpap use. Been through both RT's and their sleep dr. The OA's & CA's are basically gone with the settings I have now which is great. However still have the Hypopneas which make my AHI's anywhere now from 4.-13. Averages now are 7. I do feel at least 60% better than before starting xpap, however there are still days where I can barely get out of bed I feel so tired. Some days I feel great with all kinds of energy, other days feel like I'm dragging all day long and very tired. Even started experimenting with a nasal mask to try to lower numbers further, but that hasn't been working for me, for various reasons.

So is she right that ASV users will never have consistently low AHI"s? Am I expecting too much, and should just accept that some days I will feel great, and others very tired? Do any of you ASV people actually feel rested most of the time?
Once again thanks for your input.

[JohnBFisher]

Hmmmm.... In itself, the question is relative.

Compared to prior to ASV, yes. I do feel much better. Compared to what I was like when I was 20. Nope. I could do with a lot more rest.

Part of the variability is just the variability of the body. In my case that's compounded by my neurological problems. Some days are better than others. The bad days require an afternoon nap. On the good days, I tend to overdo a bit and tire myself out.

So, what's one to do with this. Well, I try to make lemonade out of the lemons. I take the good days and do as much as I can with them. And then when I have bad days, I lower my objectives ... and then sometimes overachieve on those days. On really bad days, if I stay out of trouble, I'm happy!

Again, compared to prior to ASV, I feel MUCH better - even on my bad days.

But then that's just me. Your mileage WILL vary. Hope that helps.

[ameriken]

Well Kody, I always appreciate hearing from you because I think you and I are fighting very similar battles.

My answer to your question: I'm still not there. Even with the addition of O2, something just isn't right. It's still very difficult for me to roll out of bed and get going. While I do have better cognitive function and more energy during the latter part of the day and evening, I know that something is sorely missing.

Ever since I raised my IPAP, my AHI's have ALWAYS been under 5 (last night was a 1). Yet, how I feel hasn't improved that much.

For OSA, it's simply a matter of opening the airway...like fixing it is a mechanical problem. However, for those who are on ASV there are more complex issues with their breathing, and I think it's those issues that cause us problems and the ASV cannot fix all of them. I often wonder if it may have to do with the exchange of gases in the lungs (O2 to CO2) that could cause problems if that function doesn't operate properly.

I don't know. All I know is, I'm not there yet.

[máirtín]

Count me as "NO" after two years on CPAP and 8 months on ASV.

My sleep doctor's response is: CPAP treats sleep problems, not tiredness problems. In his opinion, my central sleep anea is well controlled and I should stop bellyaching. My response is: the apparent success of the ASV means that other problems are ignored - putting me at higher risk for stroke and heart failure than without CPAP (ASV Miracle Paradox Syndrome).

[teknomom]

I just had my first follow up visit yesterday and they told me that the Respironics over counts hypopneas. My AHI was 5-7 over 2 weeks and looking at my daily data and wave forms it looked like many of the hypopneas were mislabeled. The RT and NP seemed to dismiss my hypopnea numbers. Maybe they're right and maybe they dont want to be bothered. Who knows?

As far as treating symptoms... Sometimes I feel that the medical community only wants to look at numbers on paper and not real people.

[Mr Bill]

For the last month, my AHI has ranged from 1-9, avg=4, because of this Sinus Asthma thingy. But typically its <= 2. Despite that, I often find it really difficult to get enough sleep. Its hard to really fall asleep unless I am just wasted tired. So I stay up late and the only way to get rested that way is to sleep late. Fortunately, with today's economy, my boss is fine with me coming in at noon each day and not having to pay for the first 4 hours of the work day. I asked my regular doctor if my heart is OK now that I have this central dominated sleep apnea. He said, oh yeah, its been 5 years, time for a new treadmill test.

Edit: that's <=2

[Newbie Woman]

Count me as a yes. I think my machine is a wonder drug.

[SleepingUgly]

There was a woman who posted here under the name Bleeping Beauty who definitely would have said that the ASV changed her life.

[Cindy Lou Who]

Kody, I'm not an ASV user (or a health professional) but experienced an improvement in energy levels and other things by taking 2000 IUs of Vitamin D3. Also take B6 and 12. Perhaps you are already doing this. Check with your primary care Dr., or pharmacy, if you are taking prescription meds to be sure there is no conflict. Sure hope you find an answer...
Best wishes,
Cindy

[Bons]

Took a full year, and a lot of tweaking, and finally finding a solution to my PLM's, but on the nights when I can actually get to bed at a decent time and don't have to set an alarm in the morning, I wake up on my own after about 8 hours and feel rested.

Now if I can only get a few more of those nights without late night or early morning work times....

[Bright Choice]

Count me in as a definitely better. My AHI is consitently zero. While on CPAP I still had spo2 desats and still felt bad the next day. With a good ASV titration, I no longer have any sp02 desats and really feel much better. I am thankful that with the ASV properly titrated I did not have to add supplemental O2 at night.

Give it some time. Do you feel that your sleep lab / doc are really familiar with ASV titrations? Some are not and that could be a reason for not getting the results you have expect.

Good luck!

[Kody]

Thanks for all your responses on this. Seems most people are much better with their ASV's including myself, although to what extent varies which I guess would be pretty normal. The your millage may vary thing, as there are other factors that also seem to play a role in how well you feel, some known, some unknown. Maybe part of the "fun" in this journey is trying to uncover more of the unknown factors and using them to our benefit if possible.

[Mr Bill]

Hmmmm.... In itself, the question is relative.

...Compared to prior to ASV, yes. I do feel much better. Compared to what I was like when I was 20. Nope. I could do with a lot more rest....

This hits the nail right on the head.

[máirtín]

I think a lot of my issues have to do with the mask rather than the machine.
The mask is a a piece of crap interface for this magnificently engineered machine.
Every night I have to wear a bandaid on my nose to prevent scarring. I wear a chinstrap to keep my mouth closed and to stabilize the mask during bursts of high pressure. Every morning my eyes are sore from air blowing into them (probably through tear ducts). Every aspect of this experience is uncomfortable and yet the machine reports close to zero apneas. I am not disappoint with the machine - I am very disappointed with mask design.
I wish Resmed would turn the machine engineers loose in the mask design area.