UARS w/nasal CPAP?

[bensommer]

Hey folks!

Question I'll lead into shortly...might my residual Respiratory effort Related Arousals (RERAs) be eliminated with a full face CPAP mask, from a stuffed nose?

I just got two follow PSG home studies done - one on side/supine w/out CPAP, and the other w/my nasal CPAP. I NEEDED to get to the bottom of the inexplicable arousals I was still experiencing on CPAP in the early AM, even though my machine read out was 0 AHI, etc. I was still miserable after 5 months on CPAP...

So...both studies showed 0.4 and 0 AHI! I.e. my non-CPAP study proved I could treat the SA by side sleeping...wow that's great, right?

So - I got to my neurologist, and she's like "nice job - your sleep looks great". Except, I still felt tired AF the day after that side sleeping study (and the CPAP one as well).

Turns out that both studies showed 20-24 RERAs each night. And I remember awaking each time. How on earth does that many abrupt arousals at night equal "great sleep"??? These arbitrary clinical definitions of apnea/hypopnea/RERA etc are truly baffling. If you're waking up suddenly, your sleep and associated biology is not well!

Anyway - I'm willing to keep to the CPAP for a while anyway, if I can figure out how to squelch these RERAs. Has anyone moved from nasal pillow to full face mask successfully to treat a similar circumstance? Or that PLUS position adjustment?

Thanks in advance!!!

[bensommer]

Well - fwiw - first night experiment with full face mask sleeping on side was pretty decent. Slept 2.5 hrs to start like a corpse. When I woke up to pee had that complete "amnesiac sleep" experience I don't remember having in years. Sleepy head confirmed no flow limits at this time either, thought the rest of the night was a little rough. Will try again tonight.

[jnk...]

. . . inexplicable arousals I was still experiencing . . . arbitrary clinical definitions of apnea/hypopnea/RERA etc are truly baffling. If you're waking up suddenly, your sleep and associated biology is not well! . . . if I can figure out how to squelch these RERAs. . . .

Discussions of flow limitations and RERAs often cannot be cut and dried because of the variations in the nature of individual responses to less-than-hypopnea "events" across the population. Simply put, different people are more prone, or less prone, to disturbed sleep, and that is true whether the discussion is about breathing or is about noise or about movement of a bed partner or about how dark or cold or hot a bedroom is on any given night. So a doc may comment on how "good" a person's breathing seems to be during sleep based on average responses by average people based on AHI, since that is mostly the only type of events that payers allow docs to use to judge one's breathing during sleep. Some docs are creative in finding ways around that payer-limitation when it comes to addressing flow limitation, but once a treatment machine is being used, the basic choice set before doc and patient is, How high does pressure need to be to give this one person the best sleep-breathing possible to lessen the likelihood of what seems to ruin the sleep of this one particular person? The reports from home machines are only part of the picture in figuring that out. And APAP algorithms aimed at the center of the bell curve may not be all that useful for that type of person. A relatively high set pressure that remains constant may be better. And the user has to experiment a bit to find ways of getting the best sleep possible by addressing everything that may be disturbing sleep (noise, movement, temperature, etc.), not just treatment-machine measurable aspects of breathing. Often someone sensitive enough to be disturbed by relatively minor changes in breathing is also sensitive enough to be disturbed by relatively minor noises and other slight changes in environment. And although it is true that slight changes in breathing can disturb sleep, it is equally true that other things that disturb sleep will often also disturb the person's breathing, making the measurements in breathing a bit of a chicken-and-egg conundrum in documenting what is actually happening for an individual. The industry has had to settle on definitions for standard documentation purposes, but that doesn't mean that the definitions themselves are somehow magically the full summary of what any individual is experiencing.

[bensommer]

Brilliantly said. That perfectly addresses the general medical care question

As to my specific situation, as usual I left out all other variables:

With nasal mask I wear a head strap and tape my mouth shut, and cinch the mask tight so there is NO leaking.

I also sleep in a black room, usually without a partner, super cold, etc

Also - I have long history of allergies, underwent 6 years of immunizations, and still have seasons (late fall) where I’m still a mouth breather because of it

So I was sure it had to be my nose clogging.

To confirm, the other night I took the mask off mid way but keep my mouth taped shut, rolled over on my side and fell asleep. Woke up twice abruptly with a constricted nose and panic feeling. That’s proof enough to me

Also - I’m in contact with my allergist about possibly getting back on shots. The tail end of my treatment 2 years ago, I was sleeping like a baby. Total amnesiac sleep, 7 hours max, total energy, 8% body fat, etc. it’s only been a theory, but I’m starting to believe that the marginal difference the final
Year or two of active immunizations made are what finally brought me that perfect sleep I’ve been chasing since then

[jnk...]

If allergies are clogging a nose, and there is variation in that condition, that would generally take a detailed examination of less-than-hypopnea "events" off the table for many docs, I believe, since that condition trumps the concept of further exploring super-sensitivity of the nervous system during sleep. It is possible both are equally in play, but the allergy situation would have to be eliminated as a factor before the other could even be discussed further medically, I would think. Or put another way, for the docs willing to consider interplay of allergies and UARS:

Many authors agreed that procedures should address anatomical regions that cause upper airway obstruction and that UARS treatment consists of approaching the causes of the upper airway anatomical problems such as treatment of nasal allergies, . . . -- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4608900/

I just started a third attempt at allergy shots myself a few months ago. I have high hopes that I will respond better now that I am on PAP therapy. Before I started the shots, a generic form of Flonase was my go-to way of keeping my nose working well enough for PAP therapy.

But if you have personal evidence that allergies are disturbing your sleep, you will likely get better payoff from thinking of your situation in those terms before looking further at RERA/UARS questions and definitions, IMO. Every doc understands the concept of allergies messing with sleep, but docs are all over the place on accepting UARS definitions:

During the last twenty years, the definition of UARS has varied . . . Currently [2015], UARS is subsumed under the diagnosis of Obstructive Sleep Apnea Syndrome (OSAS) by the American Academy of Sleep Medicine (AASM). Its diagnostic criterion is still not defined and some authors believe that UARS is part of a continuum between primary snoring and OSAS whereas others believe that it is a distinct syndrome from OSAS. Some authors support that both UARS and OSAS have the same symptoms and as their pathophysiology do not significantly differ from each other, UARS is not a distinct disease. Nevertheless, other authors believe that UARS patients present different features than other Sleep related Breathing Disorder (SRBD). -- [same as above] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4608900/

But I ain't no doc. And certainly no neurologist. I wouldn't know a neurolog if it bit me on the nose.

My limited understanding is that some need to remain on a monthly maintenance dose of allergy immunotherapy for many years, perhaps indefinitely, to get full benefit.

[bensommer]

Agreed on all points. I'm basically off the medical grid now. Those two at-home PSG studies I did (full EEG/ECG) were on my dime, I own my CPAP, etc. My full-time dedicated, medically illiterate ass is more capable of diagnosing and treating my sleep problems than the 15-minute attention span of a sleep neurologist.

My allergist told me to go back on two Zyrtec a day, and flonase at night for a month. If no better, then he'll try me back on shots.

Good luck on your shots. My allergies are definitely better, but I must admit I am VERY frustrated that after 6 years of all that pain, inconvenience and cost, I still have to take pills and flonase to stay symptom-free. Perhaps I do need an additional year or two of shots

[jnk...]

There are advantages to being on-grid. But there are advantages to being off-grid too. You are approaching the situation with logic and determination, so I truly hope things go well for you in time.

I added a line above: "My limited understanding is that some need to remain on a monthly maintenance dose of allergy immunotherapy for many years, perhaps indefinitely, to get full benefit."

Your concomitant sleep disordered breathing may nudge the allergist in that direction.

[bensommer]

I don't think indefinite immunization is a normal thing. Standard course is 1 year ramp up to full dose, then monthly full dose maintenance for 5 years, which I did. Allergist said that is standard, and that 90% of patients respond adequately to that. So - maybe I'm the unicorn.

Thanks a ton!!!!

[jnk...]

I don't think indefinite immunization is a normal thing. Standard course is 1 year ramp up to full dose, then monthly full dose maintenance for 5 years, which I did. Allergist said that is standard, and that 90% of patients respond adequately to that. So - maybe I'm the unicorn.

Thanks a ton!!!!

Relapse is a thing, though, and although the standard is a certain period of time, individuality of response must always be considered. Insurance will not want to acknowledge a need for indefinite continuation of immunotherapy, since it defeats the concept of it, on some levels. But just as you say, individual needs often differ from what is standard.

Duration of treatment. Summary Statement 24: The patient’s response to immunotherapy should be evaluated on a regular basis. A decision about continuation of effective immunotherapy should generally be made after the initial period of 3 to 5 years of treatment. Some patients might experience sustained clinical remission of their allergic disease after discontinuing immunotherapy, but others might relapse. The severity of disease, benefits sustained from treatment, and convenience of treatment are all factors that should be considered in determining whether to continue or stop immunotherapy for any individual patient. -- https://www.aaaai.org/ask-the-expert/du ... otherapies

Personally, I would put the response to allergen immunotherapy, in general, at closer to 85% than to 90%, but that is my nitpicking nature. And I would not consider relapse to be all that uncommon, even for those who are considered responsive to allergen immunotherapy. For some, it merely lowers the severity of the allergy, and that can be considered "success." However, that might not be considered successful "enough" for the SDB comorbid.

[David1447]

Similar situation here - clogged nose, years of bad sleep, 10.8 RDI with a low AHI in my sleep test. Trying all sorts of things right now to get a good night's sleep. Can't offer much in the way of advice, I'm treating my nose with a corticosteroid spray (fluctisone propionate 0.05%) which seems to work well. Was on afrin for a while but it didn't bode well for my nose. I will be watching this thread though for new developments and wish you much luck.

[bensommer]

fluctisone = Flonase. Same thing we're on. Beware of dry winter season on that spray as well. I was on it all last winter, and got chronic bloody/scabby nostrils until spring, which I think scarred over and narrowed my nostrils even more!

[jnk...]

I run two humidifiers in my apartment all winter to keep RH above 40%. But I make up for that by running two dehumidifiers to keep RH below 50% the rest of the year. And when I get bored, I do as the comedian once said and run them all at the same time just to see which ones win.

For the cheapest generic Flonase, Costco is often the place in the U.S., by the way, as I've posted a few times before. viewtopic.php?f=1&t=173251&p=1271491#p1271491