UARS, low numbers bad sleep, MMA, now on CPAP

patrissimo wrote: If I can't normalize my breathing, even after trying Bipap/ASV, then I will probably try it. But I'm scared to try it now. Like what if sleep restriction increases my proportion of REM, which is when my breathing is the worst?
Anyway, I will continue giving APAP more time.
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Have you tried these machines in all of their modes, not just the obvious and expected ones ? It's possible that if you are easily anxious, getting a mostly regular pressure and rhythm from your machine might help you sleep better. What I mean is for instance is, setting pressure limits on the ASV so that it does not have much freeplay in varying pressures, and works kind of like a BiPAP machine,(though with a much more rapid response to events, and with centrals support). Or even, using an ST machine for regular breathing cycles and pressures, though some Dr.s say it is labeled for COPD.

Also, as regards UARS, I've read that using circular breathing strengthens the upper respiratory muscles that cause UARS when they are weak. It's an exercise to do during the day, but the resulting improvement in muscle tone would be beneficial at night. Singers practice it; I have found it very difficult to do, but you might look into it and be successful.

patrissimo wrote: I had a bunch of lung studies done for some reason perhaps 10 years ago, and they said I only had about 75% the lung volume expected for my age, height, etc based on a CT scan. I have low peak expiratory flow performance even when I'm healthy.

You might want to hang onto those results as baseline for years-later comparison. My understanding is that major increases/decreases in TLC, FRC and RV are worth noting.

As a side note, below are contraindications listed for Respironics' current ASV model:

• Inability to maintain an open airway or adequately clear secretions
• At risk for aspiration of gastric contents
• Diagnosed with acute sinusitis or otitis media
• Allergy or hypersensitivity to the mask materials where the risk from allergic reaction outweighs the benefit of ventilatory assistance
• Epistaxis, causing pulmonary aspiration of blood
• Hypotension

And below are contraindications listed for Resmed's current ASV model:

• severe bullous lung disease
• pneumothorax or pneumomediastinum
• pathologically low blood pressure, particularly if associated with intravascular volume depletion
• dehydration
• cerebrospinal fluid leak, recent cranial surgery, or trauma.

Looking at the Respironics text, I'm thinking it would be nice if you somehow affected improvement with nighttime GERD/LPR before an ASV trial. I also agree with the general advice posters mentioned about giving CPAP/APAP more time.

-SWS wrote: As a side note, below are contraindications listed for Respironics' current ASV model:

• Inability to maintain an open airway or adequately clear secretions
• At risk for aspiration of gastric contents
• Diagnosed with acute sinusitis or otitis media

This seems to point to problems caused by pressure shoots, which would get more powerful if there is increased nasal obstruction, such as during allergic reactions or illness. I thought the Resmed did shoots, not the PR ASV.
Does the PR ASV normally do pressure shoots? if so, do they come as a pressure support action during patient-triggered breaths, or only during the backup actions?

If the ASV shoots when sensing obstruction, it seems that putting max limits would properly protect the patient

49er wrote:In my own situation, it looks like moving the time I take my vitamin D to late morning and slightly increasing the dose, may be the key to my ability to stay asleep on the machine.

I'd be really interested to see your experiments with things like vitamin D dose and timing. Ideal would be to randomize the amount and timing and graph AHI or # of awakenings or whatever seems to be a key output metric for you. My experience with trying a zillion things like vitamins, exercise, bed tilt, etc. over my years of sleep problems is that none of them worked, presumably because they were not treating my sleep apnea. I totally believe that for someone whose sleep WASN'T disturbed by nightly mini-suffocations, things like that would have measurable and significant effects. But my experience has been that they either weren't addressing the right problem, or weren't large enough effects, to be significant for me.

49er wrote:Regarding UARS, since I felt that was an issue in addition to apnea even though I didn't have any solid proof, I decided that a straight cpap pressure would probably work best for me as I feel I need as few disruptions as possible. So I used my bipap machine (which can be run in the cpap mode) to titrate myself since it has more information about all events than the Devilbiss.

Straight CPAP pressure is an experiment I'd like to do at some point. Perhaps soon. I'm about ready to do a randomized titration test, was going to do min & max pressure, but maybe I'll throw straight CPAP in as a possibility.

49er wrote:By the way, I realize my information is very preliminary and I am not making claims about anything. I am just trying to point out that sleep issues are very complex and it takes an awful lot of detective work to figure things out particularly if your situation doesn't seem to fit standard medical situations.

It sounds like you are in a similar situation Patrissimo and that is why I am intently following your posts.

I think sleuthing on complex sleep issues is why some of us are here. I will continue to do experiments and collect data and report back on my progress...

Hi Patrissimo,

I'd be really interested to see your experiments with things like vitamin D dose and timing. Ideal would be to randomize the amount and timing and graph AHI or # of awakenings or whatever seems to be a key output metric for you. My experience with trying a zillion things like vitamins, exercise, bed tilt, etc. over my years of sleep problems is that none of them worked, presumably because they were not treating my sleep apnea. I totally believe that for someone whose sleep WASN'T disturbed by nightly mini-suffocations, things like that would have measurable and significant effects. But my experience has been that they either weren't addressing the right problem, or weren't large enough effects, to be significant for me.

No, I don't think Vitamin D treats sleep apnea. But it does seem like for some people, it helps with insomnia which is the effect I might have received when I was rudely awakened by a mask leak a few days ago.

The next day, even though I unintentionally took my alternative mask off due to the pressure being set too low after two hours, I still slept 6 hours. Ok, that isn't great but it still leads me to believe that taking Vitamin D at lunch is key.

Yesterday, I tried splitting the dose between lunch and dinner and had horrible sleep. However, instead of doing to bed after dinner when I was tired which I did the other day ago, I tried to fight through it and fell asleep prematurely for close to an hour. I think that may have disrupted my sleep.

Today, I am going back to taking it all at lunch which I did the other day. I am also going to go to a late afternoon activity so I can at least have a reasonable chance of staying awake until 9pm. Currently, I feel extremely drugged after eating dinner even though I eat very lightly which I think is due to the constant sleep deprivation. So I am trying to change the script even though I won't be able to do this every day.

I hear you about trying a zillion things. We probably crossed paths in doing so

Straight CPAP pressure is an experiment I'd like to do at some point. Perhaps soon. I'm about ready to do a randomized titration test, was going to do min & max pressure, but maybe I'll throw straight CPAP in as a possibility.

Yup, one thing at a time. I don't have tremendous evidence that CPAP is better. Just a gut feeling and of course, since I feel I was on my way to great sleep before the bleeping mask leak with a straight CPAP pressure, of course, I want to stay with that.

I think sleuthing on complex sleep issues is why some of us are here. I will continue to do experiments and collect data and report back on my progress.

Great!

I desperately want to report a success story with my data to inspire other people who have encountered similar situations. But I feel there is no point in my posting anything until then because I am satisfied with my pressure, AHI, and lack of other events. The other sleep issues I have to work out on my own.

49er

Once I felt that I was at the right pressure (8.5), I switched back to the Devilbiss. I was using that machine when I felt I would have had a great night of sleep if I hadn't been woken up prematurely.

Not to change the subject, but I found that the supposed "ideal" pressure that the APAP "automatically" finds for you may not be that ideal after all. I was struggling with aerophagia and decided I would manually reduce the pressure on my APAP while tracking my AHI. The APAP had me at an average pressure of around 13. I was able to decrease the pressure to around 9 while not negatively affecting my AHI (around 1.0). Therefore, don't assume the APAP automatically has you at the right pressure if you decide to self-titrate.

blueh2o wrote:

Once I felt that I was at the right pressure (8.5), I switched back to the Devilbiss. I was using that machine when I felt I would have had a great night of sleep if I hadn't been woken up prematurely.

Not to change the subject, but I found that the supposed "ideal" pressure that the APAP "automatically" finds for you may not be that ideal after all. I was struggling with aerophagia and decided I would manually reduce the pressure on my APAP while tracking my AHI. The APAP had me at an average pressure of around 13. I was able to decrease the pressure to around 9 while not negatively affecting my AHI (around 1.0). Therefore, don't assume the APAP automatically has you at the right pressure if you decide to self-titrate.

But what about flow limitations? My AHI is < 1.5 at any pressure from 8-14, but I still have a lot of FL and associated unstable breathing. I'm increasing the pressure to see if that affects the FL, on the theory that the FL is disrupting my sleep (UARS). Unfortunately my FL has been steadily increasing for a week, while I moved my pressure up and then down, so it seems like something else is affecting it.

I've learned to be cautious of any experiment that is correlated with time, rather than being done randomly. ie if you increase pressure 0.1mm / day, an effect you might think is due to the pressure change could be just something else changing over time (weather, gaining/losing weight, getting sick/well). If you instead randomize pressure each night, say between 8 & 11, then you've decoupled the pressure experiment from whatever trends are active for your sleep right now. I just started this last night...

Just to interject a couple things. I, too, found Vitamin D taken earlier in the day seemed to be promote deeper, more restful sleep than when it was taken later. To me, this makes sense. Afterall, we would normally get our Vitamin D indirectly from sunlight, which is obviously stronger at mid-day. I also found, through experimentation, that changes in Vitamin D dosages resulted in short term changes in the quality of sleep. Both increases and decreases would be disruptive. Overall, it seemed that some Vitamin D supplementation was beneficial so I decided to supplement with an amount that would hold my serum level at about 60. I now take 2000 IU daily.
The other thing is that I also found CPAP to be more comfortable and just as effective as APAP. I used APAP for titration, switched to CPAP, and gradually lowered the pressure in steps while maintaining the same AHI. I started with an APAP pressure of 10 and I am now at a CPAP pressure of 8. Same AHI - around 2.
J

But what about flow limitations?

Patri,
Sorry, I wasn't tracking the details like FL. I've tried to stay focused on the forest and not the trees. Having said that, I may need to get in to those details in the future and I'll know who to go to...

Jay - I switched to CPAP the last two nights (APAP with min = max so the machine tracks FLs still). I do find it more comfortable and relaxing than APAP, I felt like my dream sequences were longer for example. I still wake up frequently, but I have the sense that CPAP is more comfortable for me. I'm going to keep trying CPAP at various pressures for a bit and see what happens.

patrissimo wrote:Jay - I switched to CPAP the last two nights (APAP with min = max so the machine tracks FLs still). I do find it more comfortable and relaxing than APAP, I felt like my dream sequences were longer for example. I still wake up frequently, but I have the sense that CPAP is more comfortable for me. I'm going to keep trying CPAP at various pressures for a bit and see what happens.

Good, I know you're anxious for quick results, but I encourage you to make changes slowly. Pick a pressue and stay there for several days, let your body acclimatize. Then move 1/2 to 1 cm. I had better luck starting high and working down.

Good luck,
J

4betterO2 wrote:Also, as regards UARS, I've read that using circular breathing strengthens the upper respiratory muscles that cause UARS when they are weak. It's an exercise to do during the day, but the resulting improvement in muscle tone would be beneficial at night. Singers practice it; I have found it very difficult to do, but you might look into it and be successful.

I tried the didgeridoo thing for some months, including learning circular breathing. It was fun, but it didn't seem to help my SDB (this was pre-CPAP), and it's quite time-consuming.

Hey everyone, quick update. I'm 44 days into my APAP, with 34 days of 60%+ CPAP use, and an AHI < 2 19 of the last 22 days (from 5 in sleep study, and 3-4 at lower pressures). I still feel terrible, and have been averaging 10+ hrs of sleep for most of the past three weeks, getting up with my partner in the morning, and usually falling back asleep after she goes to work. (I know, I shouldn't, but I'm so exhausted every morning). My Flow Limitation has been quite high after the first few days with my new data-capable machine (had for about 2 weeks now), and I've been fighting off a cold much of that time, so that could be a factor (causing UARS-related sleep fragmentation).

So either 1) I need to be more patient (and will feel better when I don't have a cold), or 2) APAP isn't working, or 3) I need sleep restriction (maybe just to 8 hours, not necessarily extreme). I kinda feel like all of these are contributing factors.

On (3), I will continue trying my darndest to get up and stay up in the morning. This morning I took 50mg provigil and still fell right back to sleep for an hour. On (2), I spoke to Dr. Krakow's sleep lab about getting an ASV/BiPap titration study, and they informed me that I need to start with a virtual consultation with Dr. Krakow. It will take me some time to update my sleep health history documentation and get that going, which will give time for (1) and (3).

Also on (1), I'm only a few weeks of benzos, it may just take longer for my neurotransmitters to recover. And someone on the other forum said that Kaiser's intro CPAP materials state that it takes 2 months of CPAP for sleep fragmentation to consolidate. But it's hard to be patient when I feel like my whole life is on hold, and I have responsibilities (professional, parental, etc) which I cannot meet in this zombie state.

One thing that's weird is my Zeo shows me getting plenty of Deep (18%) & REM (28%) compared to many people with unrefreshing sleep. Given that I wake up fully many times a night, perhaps my consolidation is very poor.

In my experience, Provigil doesn't kick in terribly rapidly (maybe in an hour for me). Maybe you could stay up without going back to sleep if you took caffeine and Provigil immediately upon awakening, with the caffeine helping until the Provigil kicks in?

patrissimo wrote:Given that I wake up fully many times a night, perhaps my consolidation is very poor.

Until you can get the sleep fragmentation issues resolved you are going to have a tough time having even a chance to feel better.