Feel Much Worse on ASV: Help?

Hi friends,

I’ve posted occasionally over the past 4 years but am at the end of my rope, so I thought I would try again to see if folks have any suggestions or at least can relate to my experience.

Short story: after 6 sleep studies across 3 sleep centers (including Stanford), an oral appliance, CPAP, BIPAP, ASV, and even UPPP, I’ve made no progress. I have treatment-emergent centrals when on xPAP, hence the ASV, and while it does what it’s supposed to objectively (AHI<3, low PB), I subjectively feel markedly worse when using it. This isn’t an issue of an adjustment period or "getting used to it"; I have about a year of time logged with ASVs, including the past 40 days consecutively with Respironics’ current DS960 model.

Thus far, no one has offered any sort of explanation for this, let alone a solution. People have pointed to exacerbating conditions (e.g., mediocre diet, poor sleep sleep hygiene, treatment-resistant depression), but none of these explain why I feel WORSE on xPAP than not. Nuvigil or other stimulants can cut through it a little, but not enough. I'm a zombie, and I feel damned if I do and damned if I don't.

Given that surgery and an oral appliance didn't help, and the AHI reduction from Provent (which someone on here recommended a while back) is insufficient to treat my moderate-severe apnea, I'm looking for anyone who might have insights on explaining this phenomenon. The docs all just shrug their shoulders. I think some of them don't believe me and think this is just me not wanting to be complaint—which is absurd given the time I've spent on xPAP over the years now.

Here's some standard Q&A type stuff to answer some of the usual questions that come up:
• Other conditions: Hypertension (well-treated) and depression (I've tried 14 different medications, none of which have helped).
• Medications: Lisinopril-HCTZ and Amlodipine Besylate for blood pressure. Nuvigil PRN. Ambien and clonazepam PRN, but taken very rarely.
• Bloodwork: All the standard stuff comes back fine. Some supplementary tests were suggested in my previous thread, but the docs poo-poo'd those.
• ASV settings: Pretty standard. Min EPAP=4, Min PS=2. I've tried a bunch of settings in the past, including higher EPAP and higher PS. I can tell you that the higher the pressure, the worse I feel. (My third PSG was a BIPAP titration where they idiotically left me on 20/16, and I felt like I'd been hit by a train every day.)

Thanks to everyone in advance for your replies.

Do you have copies of the prior sleep studies?
If so, what do they say about arousals and the cause? If the arousal rate is high, this could contribute to feeling lousy since your sleep would be fragmented.

Do you have and use Encore Pro software? If you do, you can easily look at the wave data to see arousals by the change in breathing patterns. You can do it in SleepyHead, but its more difficult.

Is your untreated blood pressure uniformly high or does it vary quite a bit?
Same question re treated pressure.

You mention poor sleep hygiene. Was that just a suggestion or is that descriptive of your habits?
I'll think some more and review the prior thread.
Maybe something will jump out.

BrianinTN,

I may be shooting in the dark but going through several med changes with antidepressants can make you feel bad, particularly if you have been doing it for quite awhile.

I am sorry you have had such a hard time and dealt with insensitive doctors. I know the feeling unfortunately.

49er

BrianinTN wrote:Hi friends,

I’ve posted occasionally over the past 4 years but am at the end of my rope, so I thought I would try again to see if folks have any suggestions or at least can relate to my experience.

Short story: after 6 sleep studies across 3 sleep centers (including Stanford), an oral appliance, CPAP, BIPAP, ASV, and even UPPP, I’ve made no progress. I have treatment-emergent centrals when on xPAP, hence the ASV, and while it does what it’s supposed to objectively (AHI<3, low PB), I subjectively feel markedly worse when using it. This isn’t an issue of an adjustment period or "getting used to it"; I have about a year of time logged with ASVs, including the past 40 days consecutively with Respironics’ current DS960 model.

Thus far, no one has offered any sort of explanation for this, let alone a solution. People have pointed to exacerbating conditions (e.g., mediocre diet, poor sleep sleep hygiene, treatment-resistant depression), but none of these explain why I feel WORSE on xPAP than not. Nuvigil or other stimulants can cut through it a little, but not enough. I'm a zombie, and I feel damned if I do and damned if I don't.

Given that surgery and an oral appliance didn't help, and the AHI reduction from Provent (which someone on here recommended a while back) is insufficient to treat my moderate-severe apnea, I'm looking for anyone who might have insights on explaining this phenomenon. The docs all just shrug their shoulders. I think some of them don't believe me and think this is just me not wanting to be complaint—which is absurd given the time I've spent on xPAP over the years now.

Here's some standard Q&A type stuff to answer some of the usual questions that come up:
• Other conditions: Hypertension (well-treated) and depression (I've tried 14 different medications, none of which have helped).
• Medications: Lisinopril-HCTZ and Amlodipine Besylate for blood pressure. Nuvigil PRN. Ambien and clonazepam PRN, but taken very rarely.
• Bloodwork: All the standard stuff comes back fine. Some supplementary tests were suggested in my previous thread, but the docs poo-poo'd those.
• ASV settings: Pretty standard. Min EPAP=4, Min PS=2. I've tried a bunch of settings in the past, including higher EPAP and higher PS. I can tell you that the higher the pressure, the worse I feel. (My third PSG was a BIPAP titration where they idiotically left me on 20/16, and I felt like I'd been hit by a train every day.)

Thanks to everyone in advance for your replies.

JDS74 wrote:Do you have copies of the prior sleep studies?
If so, what do they say about arousals and the cause? If the arousal rate is high, this could contribute to feeling lousy since your sleep would be fragmented.

Yes, I have them all. Almost all of the arousals are attributed to apnea. In one study, I had a decent number of PLMs, some of which did cause arousals. I tried both Mirapex and Requip (as well as clonazepam), but subjectively didn't feel an increase in quality of sleep with either one. In the other five PSGs, PLMs were either few to non-existent, or not associated with arousals.

JDS74 wrote: Do you have and use Encore Pro software? If you do, you can easily look at the wave data to see arousals by the change in breathing patterns. You can do it in SleepyHead, but its more difficult.

I have both, although for some reason I've had difficulty getting Encore Pro (even the latest version) to recognize the data card with my newest ASV. SleepyHead has no problem.

JDS74 wrote:Is your untreated blood pressure uniformly high or does it vary quite a bit?
Same question re treated pressure.

I can't speak well to the untreated, since I've been taking meds for it for about a decade. Before the meds, it did vary. Now, there's some variance while being treated, although obviously not as much.

JDS74 wrote:You mention poor sleep hygiene. Was that just a suggestion or is that descriptive of your habits?

Both. Especially when on xPAP, lying down when I'm not tired is futile. I'll stare at the ceiling for hours. If I'm distinctly not tired, even Ambien doesn't cut through it anymore. (Seroquel does, but for a variety of reasons associated with that medication, I really refrain from using it.) So I go to sleep when I'm tired. I would say that compared to my previous thread (when I was in grad school), my bedtime has become quite a bit more regular. However, my wake-up time isn't—especially when on xPAP and I feel like a zombie in the morning. And, with my doc's permission, I'm back to taking some naps in the afternoon (because while on xPAP I'm utterly non-functional without them sometimes).

Thanks for the suggestions and taking the time. I really do appreciate it.

49er wrote:I may be shooting in the dark but going through several med changes with antidepressants can make you feel bad, particularly if you have been doing it for quite awhile.

Yeah, I definitely can relate to that. Unfortunately, that isn't the culprit here. Most of those medication changes have been during concentrated periods of months when I'm actively trying to work on the depression issue. Most of the time—including now—I'm not on anything.

How long did you try the PLMD meds?
All you mentioned can have dpressive symptoms for some people.
What dosage for Mirapex? At 1.5 mg of mirapex, I had no change. I'm currently trying 5 mg dosage now but can't tll if it is helping. Waiting on PSG results to see if there is any change.

All of them require a considerable period after discontinuing to get them out of your system.

Do you notice awake periods at night? I'm trying to track mine using my ASV unit as a notebook.
Each time I wake up, I reach out and turn it off, wait a few seconds (typically less than 5 seconds), and then turn it back on and try to go back to sleep. SleepyHead will note each time period as a session. On bad nights, I see a wakeup every 45 minutes to 60 minutes. I feel better now I'm on ASV but still get tired on bad days.

If your BP is controlled but still varying more than say 30 points on the systolic side, what do your docs suggest the underlying cause is?

Both of your BP meds can cause fatigue. I don't see any interaction between them though. Does your doc say you need both? Have you checked with your pharmacist for other interactions? Including any OTC meds. Sometimes mildly bad things can happen.

2 factors not seen in your Q&A, might shed some light (no pun intended):
__do you get enough sunlight? We often forget that a daily dose of natural sunlight is essential for children's development (thymus gland), and is still an important health factor in adulthood. Try to get a daily (or so) dose of natural, golden afternoon light around you, and see if that makes you feel better and helps your sleep. Many people come to get more sensitive to that God-given gift later in life when aging, maybe it is more important also, when there are health problems, especially depression. (As a matter of fact, luminotherapy is used quite seriously, in "gloomy" northern Europe).
__do you follow an exercise program? If not, you could try with easy exercises, doing them with just a feeling of effort, not too much at first. Aqua therapy is great, doing them in water makes exercises easier on the body. I started doing that over a year ago and after a few months I saw some dramatic improvements in chemical profile tests... exercising is something that we REALLY need, it is not "optional" really, if we want to preserve whatever health we have, or improve it. Sorry if you are already doing that, in that case I hope this will help someone who is not

I know there are a ton of parameters on ASV that you can change.

I have heard some ASV users say that changing one or another of the more obscure settings made a big difference for them. Just be sure you document the settings before and after you change them.

Lisinopril could be a part of the problem. Question - do you have asthma? I do & was on this drug for over a year & felt like hell. Turns out the combo of asthma & Lisinopril makes you feel awful, no energy, feel bad & sleep makes you feel like you just need more sleep. My asthma doc was the one who picked up on this when he asked me who the hell put me on this. It was my primary & apparently this is a dicey drug for asthmatics. Even if you don't have asthma, you might want to consider this drug as a possible suspect.

Jen

Thanks again to everyone for the responses. My answers to the questions are below. For the sake of clarity, let me rephrase my original post into two questions, since I think all the Q&A so far really only addresses the first question:
1) Why, other than apnea, do I experience fatigue and sleepiness?
2) (The real brain-bender) Why do I consistently feel worse when using xPAP than not?

JDS74 wrote:How long did you try the PLMD meds?

This was over the period of a few months back in 2010, when I was first diagnosed. In the subsequent 4 PSGs, PLMs either weren't present or didn't generate arousals, so I haven't been back on the meds in quite some time.

JDS74 wrote:What dosage for Mirapex?

Amazingly I found this in an old email with a former RPSGT. It was .375mg of Mirapex ER--so the baby starter dose.

JDS74 wrote:Do you notice awake periods at night?

It depends heavily on the night and my level of exhaustion. I would say most nights I'm consciously aware of waking up a few times. This happens somewhat more on xPAP, but it also happens when I'm not.

JDS74 wrote: If your BP is controlled but still varying more than say 30 points on the systolic side, what do your docs suggest the underlying cause is?

They have no idea on the cause, but it doesn't generally vary quite that much. I would say it's a 10-15 point variation two thirds of the time.

JDS74 wrote: Both of your BP meds can cause fatigue. I don't see any interaction between them though. Does your doc say you need both? Have you checked with your pharmacist for other interactions? Including any OTC meds. Sometimes mildly bad things can happen.

Yup, no interactions and both meds are required. I started with Lisinopril-HCTZ, but it didn't get the job done even at 20/25, so that's why the Amlodipine was added. I asked my neurologist/sleep doc about looking for a BP medication that doesn’t have these as side effects, but she indicated (a) the incidence of fatigue for both is low enough to be considered negligible, and (b) all BP meds are likely to behave similarly in that regard. Her words, not mine.

4betterO2 wrote: __do you get enough sunlight?

I definitely try, since I know it affects my mood. I'm certainly happier when spring and DST come along. Last year I purchased a light therapy box, but it didn't seem to help me much if at all. Being outside lifts my mood, although it doesn't help with my sleepiness.

4betterO2 wrote: __do you follow an exercise program?

Yup, I lift a couple times a week and try to walk a couple times a week as well—although I've been bad about that since I broke my foot this summer and the heat and humidity has kicked up.

jencat824 wrote:Lisinopril could be a part of the problem. Question - do you have asthma? ... Even if you don't have asthma, you might want to consider this drug as a possible suspect.

I don't, but that's an interesting idea. You and JDS74 both pointed to that. Maybe I should try a month just on the Amlodipine and see if I feel better.

BrianinTN wrote:Hi friends,

Short story: after 6 sleep studies across 3 sleep centers (including Stanford), an oral appliance, CPAP, BIPAP, ASV, and even UPPP, I’ve made no progress. I have treatment-emergent centrals when on xPAP, hence the ASV, and while it does what it’s supposed to objectively (AHI<3, low PB), I subjectively feel markedly worse when using it. This isn’t an issue of an adjustment period or "getting used to it"; I have about a year of time logged with ASVs, including the past 40 days consecutively with Respironics’ current DS960 model.

Thus far, no one has offered any sort of explanation for this, let alone a solution. People have pointed to exacerbating conditions (e.g., mediocre diet, poor sleep sleep hygiene, treatment-resistant depression), but none of these explain why I feel WORSE on xPAP than not. Nuvigil or other stimulants can cut through it a little, but not enough. I'm a zombie, and I feel damned if I do and damned if I don't.

I'm terrified... Your story mirrors mine, except I went so far as MMA surgery on top. The ASV is making me feel awful and I've tried every medication, complimentary therapy, settings change, you name it.

Some doctors shrug and say CFS/MS. But then why do I feel *worse* on ASV despite my Complex Sleep Apnea diagnosis!

This is beyond frustrating. I totally feel your pain.

justinjustin wrote: I'm terrified... Your story mirrors mine, except I went so far as MMA surgery on top. The ASV is making me feel awful and I've tried every medication, complimentary therapy, settings change, you name it.

Some doctors shrug and say CFS/MS. But then why do I feel *worse* on ASV despite my Complex Sleep Apnea diagnosis!

This is beyond frustrating. I totally feel your pain.

Thanks for replying. That sounds exactly like mine. No one's been able to articulate any suggestion whatsoever, other than to say that there's some small, single-digit percentage of patients that might simply be intolerant of xPAP therapy for unexplained reasons. That isn't much help to either of us.

What's really sad is how this whole thing has changed me. Not to toot my own horn, but I used to be an absurdly smart and accomplished guy. Now I feel just about useless as a human being, and any treatment takes me from a bad place (sort of tired) to a terrible place (utterly exhausted). Of course, the pulmonary and neurological sleep docs don't condone me sleeping without xPAP for health and liability reasons, but the idea that I'm going to stay on it for the rest of my life feeling like a zombie is absurd. What's the point of staying alive and healthy if you don't feel really alive?

A family member suggested that I see a rheumatologist, and that's not a crazy idea...but like you, it doesn't explain why I feel worse when treating my apnea.

Brian,

I don't have your problems but I do have mysterious issues that doctors haven't been able to explain. So I definitely understand your situation regarding feeling useless.

Here is another one of those shooting in the dark ideas. Google ketogenic diet as for many people, it helps improve brain function.

The other day, when I was able to stick with it, I noticed that even though I got crappy sleep on the machine (another post), my mental function was better than I would have expected. Unfortunately, because I was so frustrated over various issues yesterday, I cheated. But I intend to try it again and see what happens.

I don't make any promises and obviously what I am offering is a strictly anecdotal experience and nothing more. But based on everything you have mentioned, what do you have to lose?

49er

PS - JustinJustin - Sorry to hear about your situation also. My heart goes out to you.

Help was offered:

ITYS

You chose not to take it (or believe it).

justinjustin wrote:The ASV is making me feel awful and I've tried every medication, complimentary therapy, settings change, you name it.

ITYS2.

So I guess that "Real Story" thing didn't work out, huh?