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Appreciate help adjusting settings (UARS) - cmcphee - 09-05-2019
Hi folks,
I'm new to the forum and have been so impressed by the level of knowledge here compared to anywhere else on the web. I'm hoping someone might be able to take a look at my data and let me know your thoughts. I am experiencing fragmented sleep (1-4 conscious arousals a night) and constantly waking up feeling exhausted, with clouded thinking, a headache (dull pain/pressure in forehead and behind eyes). I get really tired by early afternoon but am unable to nap. I have been on disability from work because of the exhaustion and brain fog. I’d appreciate any ideas you have for how to adjust my therapy to reduce arousals and improve how I feel when I wake up, as I need to return to work ASAP.
Here’s my backstory:
I was originally diagnosed with UARS in 2016 after an at home sleep study. Doctor’s notes: “This study reveals an abnormal RDI in presence of normal AHI and ODI which suggests the possibility of upper airway resistance syndrome. Trial of decongestants or nasal steroids may be beneficial. Results of this study may also indicate mild Obstructive Sleep Apnea. Favorable compliance and response to treatment depend in part on the severity of sleep disturbance as manifested by daytime hypersomnolence. A therapeutic trial of CPAP is an option if the patient manifests severe sleep disturbance and/or daytime hypersomnolence. Total Sleep Time= 7 hrs. 44 min. AHI= 0 RDI= 11 ODI= 0 (REM AHI= 1 NON REM= 0). Time<90%= 0 <80%= 0 <70= 0. Estimated body mass index is 18.76 kg/(m^2) as calculated on 12/5/16 from a height of 5'3" and weight of 105 lb 14.4 oz (48.036 kg).”
Things I’ve tried since this diagnosis:
- ENT consultation: I have large turbinates but the doc says they should not be waking me up and surgery is optional (I have not had the surgery yet)
- Bladder consultation: everything looks normal
- Allergy consultation: I’ve removed all potential food and environmental allergens. I’ve tried nasal sprays (Azelastine, Flonase) and Claratin. I am off all of them now except Flonase in the morning.
- Neuropsych consultation: I tried Trazodone and Lunesta but the former stopped working and I didn't want to risk dependency of the latter.
Details of my current situation:
Today, my height and weight have remained stable. My current insurance will not cover a full polysomnography, but will cover a CPAP because of the high RDI from the study a few years ago (on a different insurance provider). Two weeks ago, I started on the Resmed Airsense 10 Autoset for Her.
- I’ve been working on cognitive behavioral therapy for insomnia to try to reduce my middle of the night wakeups and sleep efficiency. When I started in May this year, I was sleeping 3.5 hours, waking up 3-4x a night, and generally sleeping at 40% efficiency. Now, I'm around 85% efficiency at 6 hours and 45 mins and waking up 1-3x a night. I've made progress! But, given that I’m 33, my doctors would like to see 7-9 hours of sleep with 0-1x wake ups at 85-90% efficiency.
- I don’t find my nasal pillow uncomfortable or take it off in the middle of the night (P10 - slightly better results from using size M over size S, as seen from switch on Sept 1 and 2). I clean it daily.
- My husband and I don’t think I mouth breath (rarely wake up with a dry mouth). I also don’t snore.
- I’ve been wearing the Caldera Releaf Neck Rest to ensure it is not a chin position
- My hose hangs from above so it doesn’t get in my way
- I started my settings at 6-12 with an EPR of 3 per doctor’s orders and am now at 8-12 with an EPR of 3
- Doctor thought the CPAP would pick up RERAS. However, I’m seeing centrals? I tried setting the User Event Flags - both are at 50% and 5 seconds. Happy to update to a different setting if this is wrong.
The CPAP has definitely made me feel the best I’ve felt on a few days of my first two weeks of therapy - in particular, Monday/Tuesday Sept 1-2 and one weekend night the week before when I didn’t have my SD card yet. I’ve noticed I don’t have brain fog on nights with a lower RDI and fewer wakeups.
Sincerely appreciate any advice you have to offer on how to get to a better spot. I’ve posted my daily data as well as close ups of my wakeups and a few central events. Thank you!!
With gratitude,
Chiara
Additional data attached. Previous couple of days (full view), and one other wakeup. I have 5 more wake-up specific photos that I can post as well, if helpful.
Thanks,
Chiara
RE: Appreciate help adjusting settings (UARS) - slowriter - 09-05-2019
I'm a UARS newbie myself, so not qualified to give advice.
But if you read through my story (with focus on end), you'll appreciate my conclusions:
- The Resmed does not pick up RERAs with any accuracy. Mine consistently said I had 0, but a recent in-lab study showed I still had a ton (haven't seen the report yet, so can't quantify that), even with CPAP. You need an EEG for that.
- My doc pretty much suggested my concerns were in my head, and scoffed when I said I need more pressure and pressure support. Titration study proved me right.
- I failed CPAP, now on to bilevel.
I think practical question for you is whether 3 EPR is enough, and whether you need bilevel.
Others should be able to help with that.
RE: Appreciate help adjusting settings (UARS) - Melman - 09-05-2019
It looks like you may not have RERAs turned on. Click the down arrow in the gray rectangle in the bottom left corner of the graphs section and make sure the RE tab is green. If not click on it to turn it green. The reports should now display RERAs
RE: Appreciate help adjusting settings (UARS) - slowriter - 09-05-2019
(09-05-2019, 01:01 PM)Melman Wrote: It looks like you may not have RERAs turned on. Click the down arrow in the gray rectangle in the bottom left corner of the graphs section and make sure the RE tab is green. If not click on it to turn it green. The reports should now display RERAs
Just to repeat, though: it probably won't, at least not with any accuracy.
I had to install Rescan just to confirm the machine was in fact reporting 0, and it was.
I ended up (probably too focused) on more subtle suggestions of RERAs, like the detailed flow graphs, and flow limitation reports.
RE: Appreciate help adjusting settings (UARS) - Melman - 09-05-2019
My S10 autoset reports RERAs and they appear to be RERAs on close inspection. IMHO saying "without any accuracy" is an overstatement. Does it miss some? Perhaps.
RE: Appreciate help adjusting settings (UARS) - slowriter - 09-05-2019
(09-05-2019, 01:28 PM)Melman Wrote: My S10 autoset reports RERAs and they appear to be RERAs on close inspection. IMHO saying "without any accuracy" is an overstatement. Does it miss some? Perhaps.
Yes, maybe overstatement; granted.
But it missed them completely in my case, and am just saying, don't allow the doc to assume they're accurate, because that assumption can have a big impact on the treatment the OP gets.
RE: Appreciate help adjusting settings (UARS) - alexp - 09-05-2019
(09-05-2019, 01:28 PM)Melman Wrote: My S10 autoset reports RERAs and they appear to be RERAs on close inspection. IMHO saying "without any accuracy" is an overstatement. Does it miss some? Perhaps.
I don't have a Resmed but a DreamStation and I can't tell you the same thing. It can catch a couple of RERAs at best but ignores the vast majority of what I think are probable RERAs (I had lot of them during my sleep study). Central and RERA are two numbers I'm always highly suspicious of in Oscar. You can't really diagnose those two types of events without an EEG. Anyway, I don't want to derail the thread so I'll stop here
RE: Appreciate help adjusting settings (UARS) - skiajl6297 - 09-05-2019
UARS sufferer here also. I am JUST getting to the point where I am getting a ResMed Airsense 10 Auto, switching from my Dreamstation, which hasn't done it for me. I am similar in that my AHI numbers don't always explain my FEELING on waking.
I have had a number of the items you mention above - both turbinate reduction (electro cautery), and septoplasty plus further subtle turbinate reduction to try to address my chronic congestion. Vast improvements were made with both surgeries, and neither surgical experience was bad enough for me to suggest avoiding it. However, I also had an exceptional ENT surgical chief do my work, which went very well thankfully. I still have UARS post-op, but I would do it over again for the results I got.
Even after all of that, I struggle with congestion. A simple spray or two of Afrin usually gives me a good night, but nothing else seems to work so consistently well. I have tried the allergy meds as well. I take Azelastine (nasal antihistamine) and Flonase. I was later scripted Singulair, and have found that to help somewhat as well. But I still have UARS even with my meds. Both help during my constant allergy seasons, but none truly resolves my nighttime issues inside my face and throat.
You look to be doing quite well in terms of XPAP based on the charts. Best of luck to you, and I am sure others will chime in with helpful feedback beyond what I can provide.
RE: Appreciate help adjusting settings (UARS) - cmcphee - 09-05-2019
Thanks, @melman. I'm not seeing an option to add RERAs. Uploaded a screenshot of the dropdown - is there a setting I'm missing maybe? Appreciate your help!
RE: Appreciate help adjusting settings (UARS) - cmcphee - 09-05-2019
Also @melman - I do already have RERAs already turned on in the preferences (has been turned on since the start of my use). Maybe they only show up as an option on the graph if the machine picks them up? @slowriter thanks for the links - to confirm, did your machine pick up zero RERAs as well? I'm seeing zero RERAs ever over the past few weeks - which is inconsistent with my sleep study.
Any adjustments you'd recommend I try with my existing machine?