Can’t treat my UARS — need suggestions

[Etirpsakdov]

Since you are discussing masks here. Mine leaks a little bit at the top swivel connector on the minimalistic philips nasal mask. I think the same one as you have. Is that normal? When I hold my finger to it, I can hear hissing.

Yeah that’s normal. All masks have to have a “vent” part where it lets out a little air. Some are louder than others IME.

---

A few sleep studies later, I’ve confirmed that I have UARS......this is good!

I’ve tried an APAP and now onto a BiPAP......great machine, the best one for UARS, from what I have learned in my own case and observed in this Forum, even better than ASV, in my opinion.... Roughly 10 masks... nasal and full face.....I would insist on full face, maybe airfit f20 or f30.... Can’t get more than a few hours of sleep without ripping it off, and that’s IF I even get to sleep in the first place with the mask. I wake up 1-2 hours after sleeping consistently with the CPAP........my experience: I started 1 year ago; had many claustrophobic issues, worked out with minor doses of clonazepam until get acquainted with the machine. I guess getting an oral appliance is the next best option besides surgery, right?.....in my opinion , this would be the very last option; I think you would still have lot of room to go yet.....

My only issue is, my sleep study came back with a 0.0 AHI didn’t record RERAs. ....lower  AHI is one of the clinical diagnostic point to assure UARS presence.....flagged RERA is a rare thing, in my opinion; majoritty are unflagged. The metrics for UARS would be how many times you have arousal/awakenings, no AHI or flagged RERA's......

Is there some way I can get this study re-scored to show RDI so I could be covered by insurance for the mouthpiece? Everything else has been out of pocket for me but the mouthpieces are a bit more. .....in my modest opinion, you already have the best tool to treat UARS: the aircurce VAUTO.

y suggestions would be greatly appreciated. I just don’t know the next step I should even be taking, but, I’ve got an apt with dentist coming up. Just worried I won’t even be covered for the mouth piece because my study doesn’t show RDI.......

----- all I said above  is general statements; could be validate only after you post your chart here.

all the best

You say you had claustrophobia issues with the machine. What was your experience using the machine before you were fully used to it? We’re you only able to get a few hours of sleep or unable to fall asleep at all?

I’ve been trying to make the CPAP work for me for over a year. I’m getting to the point where I don’t think it’ll ever work for me. I’ve tried APAP and BiPAP and over 10 masks. Can’t stay asleep for more than a few hours. Maybe it’s configured wrong, but I doubt it.

[mper6794]

Hi,
_ actually, I started CPAP (brick) some 2.5 years ago: lost some 1.3 years with nasal mask, mouth breathing, and leaks, claustrophobia, wrong parameters, wrong machine, shooting in the dark without OSCAR at those times, pretty much no results....woke up every 1.5 to 2.0 hours for trips to bathroom (so many years of nocturia);

_ then, beggining of 2019, moved to Autoset (some 2 months); no way to handle Flow limitation (my UARS) with this machine: close to the end of this period, I moved from nasal to FFM four-air (leaks and some claustrophobia still), and to FFM f20 (instant feeling of wonderful results, mask wise).

_and finally BiPAP Vauto (1.1 years), when my true therapy started up, alternating between F20 and F30 (rarely);

_still today, even the soft collar sometimes brings me some claustrophobia; have to take off some nights. However, no problem with the F20 anymore;

_still learning a lot from daily 1.5 hour observations on my OSCAR charts; very happy with results (from time to time still need 0.5 Clonazepam to tame PLMS). Quite recently, amazingly to myself, I found out that IPAP 12.4/PS 5.2/EPAP 7.2 was bringing me some awakenings. Moved to 11.4/4.2/7.2, which gave pretty much same results with much more comfort, so that I believe wrong parameters can bring significant problems, in particular, for highly sensitive UARS persons.

all the best

[Max Maker]

I will do that. Thanks.

[Etirpsakdov]

Hi,
_ actually, I started CPAP (brick) some 2.5 years ago: lost some 1.3 years with nasal mask, mouth breathing, and leaks, claustrophobia, wrong parameters, wrong machine, shooting in the dark without OSCAR at those times, pretty much no results....woke up every 1.5 to 2.0 hours for trips to bathroom (so many years of nocturia);

_ then, beggining of 2019, moved to Autoset (some 2 months); no way to handle Flow limitation (my UARS) with this machine: close to the end of this period, I moved from nasal to FFM four-air (leaks and some claustrophobia still), and to FFM f20 (instant feeling of wonderful results, mask wise).

_and finally BiPAP Vauto (1.1 years), when my true therapy started up, alternating between F20 and F30 (rarely);

_still today, even the soft collar sometimes brings me some claustrophobia; have to take off some nights. However, no problem with the F20 anymore;

_still learning a lot from daily 1.5 hour observations on my OSCAR charts; very happy with results (from time to time still need 0.5 Clonazepam to tame PLMS). Quite recently, amazingly to myself, I found out that IPAP 12.4/PS 5.2/EPAP 7.2 was bringing me some awakenings. Moved to 11.4/4.2/7.2, which gave pretty much same results with much more comfort, so that I believe wrong parameters can bring significant problems, in particular, for highly sensitive UARS persons.

all the best

Interesting. Your story reminds me a lot of mine. What size f20 and f30 do you wear? How did you settle on those pressure settings? I’m familiar with Oscar but not sure what to look for when configuring my BiPAP and what to tweak. 

You give me hope that I might be able to make it work for me still. Used an APAP for a year and now onto the BiPAP. Always waking up an hour or two into sleep and ripping the mask off

Do you have any nasal congestion isssue?

Thanks

[mper6794]

Hi,
_Interesting. Your story reminds me a lot of mine. What size f20 and f30 do you wear? How did you settle on those pressure settings? I’m familiar with Oscar but not sure what to look for when configuring my BiPAP and what to tweak. you give me hope that I might be able to make it work for me still. Used an APAP for a year and now onto the BiPAP. Always waking up an hour or two into sleep and ripping the mask off. Do you have any nasal congestion isssue?

_ medium size for both;

_ pressure settings: that was another interesting experience. After "loosing" some  some 8 months trying/experiencing a lot, all kind of combinations of EPAP IPAP and PS, on Jan 28th this year, I simply decided to start all over again by trying Resmed titration protocol for Vauto S-mode (not sure when this protocol was published, but I did not know about it). Within some 15 days I got my tailored parameters, by carefully observing daily outcomes on OSCAR.

_I shown the graph in somebody else thread here. During those first 8 months I had already perceived that pressure fluctuations does not work for me; does not pay off sleep instabilities/minor leaks/etc added during pressure bumps/punches in  my face;

all the best

_

[Etirpsakdov]

I’ll try the titration protocol. I’ve found a few resources online... do you have the one you used handy by any chance?

I’ve been doing the same for the past year. Time to start fresh with a new approach I guess. 

Glad to hear you’ve fixed your sleep though.

[mper6794]

hi,
Has patient been on CPAP therapy?.....I would suggest you say no here, while going for the titration.....
Initial settings:
IPAP = 4 cm H2O above EPAP
EPAP = CPAP level at which obstructive apneas were eliminated
Are events central?
Decrease pressure to previous setting, observe for 20 min
If centrals persist, consider ST, ASV or iVAPS based on patients
underlying diseases*
For obstructive apneas:
• Increase EPAP by ≥1 cm H2O every ≥ 5 min
• Increase IPAP to maintain 4 cm H2O difference between IPAP/EPAP
For hypopneas, RERAs or snoring:
• Increase IPAP ≥ 1 cm H2O every ≥ 5 min until resolved
Initial settings:
IPAP = 8 cm H2O
EPAP = 4 cm H2O
For SpO2 < 90% with all respiratory
events eliminated:
• Increase IPAP by ≥ 1 cm H20 every ≥
15 min until ≥ 90% SpO2 is reached
• Follow sleep lab protocols for adding O2
Observe patient and document final settings, including IPAP/EPAP pressures
and TiControl settings if altered from default
YES
YES
NO
NO
S Titration protocol
Things to consider
For accurate results:
• Ensure the mask is fitted properly and leak is minimized.
Additionally, verify that the mask setting is the mask type
used. For example, if you are using a full face mask, be
sure you select full face mask.
• A higher starting IPAP and EPAP may be selected for
patients with an elevated BMI.
Addressing various conditions:
• If the patient is having central apneas look to see if the
patient meets the definition of complex sleep apnea.
If so, consider moving to ASV.
• If the patient presents with both nocturnal hypoventilation
and central sleep apnea, consider moving to iVAPS


https://www.resmed.com/us/dam/documents/...er_eng.pdf

[mper6794]

this was mine.....

[mper6794]

..... "Do you have any nasal congestion isssue?"

_ apologies, forgot to answer this: usually I don't have nasal congestion currently; but used to have more common, very few times, actually, in the past.  Almost always in the left nostrill, which has slightly deviated septum toward it. Easily work out by take off the mask and cleaning with water and some expiratory pressure (blocking the other side). If more intense, it may worth going for a rinsing 1 hr before bedtime; with 150 ml  midly warmed filtered water + 1 tea spoon of  NaCL + 1/2 spoon of sodium bicarbonate.

all the best

[Etirpsakdov]

Very interesting. How did you track all that info? I really need to be doing something like that.

I've heard a lot of good things about nasal rinsing and will have to give your suggestion a try. I usually use Afrin nose spray which pretty much clears it all up though.

Now as far as that titration protocol goes, I obviously can't monitor for events and increase the pressure every five minutes. Did you up the pressure by 1 each night after reading over your OSCAR data and going from there?

When I used just an APAP on starting pressure of 4cm, it would often work its way up to 9-10 cm by the time I woke up. Maybe this is a sign that I should be starting out with 8-10 as my EPAP? And perhaps a PS of 4? I definitely feel like I'm struggling to get air on 4cm and doubt I'd be able to sleep unless I started on 5 or 6cm.


I've been trying to get a full night's sleep for over a year with the machine and still haven't succeeded. At best I'll get 3 hours or so of sleep, but usually struggle to fall asleep at all or rip the mask off less than in hour into my sleep. I really feel like I should just be able to use the prescribed settings of EPAP 4 and PS 6 and get a decent night's sleep, but it just doesn't work for me. For people with UARS, are our bodies that "picky" to where I'm going to struggle to get any kind of good sleep unless I'm on pretty much my ideal settings...? I really feel like everybody else can just use whatever settings and still get 7-8 hours of sleep, which has literally been impossible for me in over 200 nights of usage.

I feel like one of my other problems is ENT related... I often feel an "obstruction" in my throat when I'm exhaling. This isn't as bad with the BiPAP as it was with the CPAP, however, I feel like it's nearly impossible to find the settings that will avoid this obstruction on exhale but also provide enough air to resolve any airway resistance. I believe this would be called a palatal prolapse... have also heard of things such as a "floppy epiglottis" causing such obstructions on exhales. If this were the case, I don't know if having surgery to fix that issue would just help me use the CPAP or treat my sleep problem itself.

I guess my next step is to try a cervical collar. I doubt an ASV machine would be necessary but have heard they're good for UARS. Anybody go from BiPAP to ASV with success after struggling to use a BiPAP or CPAP?