One year -- whazzup with these numbers?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
User avatar
Pugsy
Posts: 63941
Joined: Thu May 14, 2009 9:31 am
Location: Missouri, USA

Re: Seven months -- whazzup with these numbers?

Post by Pugsy » Tue Aug 18, 2015 10:50 am

Don't blame you at all for being a grouch. I would be bordering on bitch if it were me.
And yes, sad as it is your thoughts on how it would go if you called them are probably spot on.
I think this whole thing is a big fishing expedition...but sometimes we get lucky and land a fish.

If you are going to use the full face mask and go with apap more open I would do at least 8.5 or 9.0 minimum and open the max to 20.
It's obvious that 8.5 with full face mask and sleeping on your back is not nearly enough so I wouldn't drop the minimum at all.

Is there any possible way of getting the nasal pillows and the nasal cannula things crammed in the nostril and maybe secured somehow with tape?

_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier
Additional Comments: Mask Bleep Eclipse https://bleepsleep.com/the-eclipse/
I may have to RISE but I refuse to SHINE.

If you want to try the Eclipse mask and want a special promo code to get a little off the price...send me a private message.

User avatar
RubySnooze
Posts: 162
Joined: Tue Jun 02, 2015 9:58 pm

Re: Seven months -- whazzup with these numbers?

Post by RubySnooze » Tue Aug 18, 2015 11:13 am

Pugsy wrote:Don't blame you at all for being a grouch. I would be bordering on bitch if it were me.
And yes, sad as it is your thoughts on how it would go if you called them are probably spot on.
I think this whole thing is a big fishing expedition...but sometimes we get lucky and land a fish.

If you are going to use the full face mask and go with apap more open I would do at least 8.5 or 9.0 minimum and open the max to 20.
It's obvious that 8.5 with full face mask and sleeping on your back is not nearly enough so I wouldn't drop the minimum at all.

Is there any possible way of getting the nasal pillows and the nasal cannula things crammed in the nostril and maybe secured somehow with tape?
I doubt there's any way the wires and nasal pillows can be crammed in together. All four wires are surprisingly thick (they're each multiple strands of thin wire; very pokey!). But I'll pull out that XS pillow I've never used (was using the small last night) and see if it might allow enough space for the wires. And can be shoved in and/or taped on well enough to seal. Maybe I'll have more success working on this in daylight without wires and equipment all over my body.

Meanwhile, your open range suggestion of 8.5 or 9 minimum is brilliant. Thankyouthankyou.

Hubs just asked if the doctor even knows I'm using nasal pillows. Did it come up at our first and only appointment? Don't think it did. I know I tried a couple times to tell him things that seemed significant to me, but he always cut me off saying we needed to stick with his intake form. So I don't think he knows I'm using nasal pillows, I know he doesn't know I've been battling leaks, he doesn't know I was allergic to neoprene, or that the rash that first showed up in October is still giving me trouble.

But I need to keep reminding myself that he's the smart and educated one who knows all and is going to fix everything.

_________________
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: Started ASV 10/15/15 after an unsuccessful year on APAP

User avatar
OSAHell
Posts: 143
Joined: Wed Jun 17, 2015 8:56 am

Re: Seven months -- whazzup with these numbers?

Post by OSAHell » Wed Aug 19, 2015 6:38 am

Hi RubySnooze,

Sorry to ear about your sleep study struggle. There's a lot of things I don't understand about your new doc "system". How on hell do they think you can fit a nasal pillow with sensor in your nostril?? When you said they ask you to go in jammies, I really thought they would put some wires on your head to get your sleep stages... Your test look alike like my first sleep study (without the machine) and they gave me 5-10 min explanation on how to hook up the sensors and sent me home with all the stuff in a carrying case, no need to go there in jammies. My second test was an other story, they ask me to wear what I'll be wearing during the night, they literally glue sensor on my head and some other places, it was an hour job! Those extra wires were mainly for sleep stages. Anyway, I'm really curious (and scratching my head) as to what your doc will achieve with that test, only future will tell... Also don't worry to much about the number (except leaks), IMHO, if your number are to good he might say that everything is fine... I'm also wondering if your mouth breathing with your full face mask how accurate those nostril sensor will be? Your doc is surely well educated but lets wait and see how smart he is! He might just do this test to justify an other kind of machine like bi-level or ASV for all I know but a titration would have been easier from my point of view.

How was your second night?

2 nights down one to go... Do you know how long before you'll be hearing back from him after there test night?

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: SleepyHead on Mac OSX, Resmed S9 VPAP Adapt (36037), EPAP 5 fixed, PS 4-10

User avatar
RubySnooze
Posts: 162
Joined: Tue Jun 02, 2015 9:58 pm

Re: Seven months -- whazzup with these numbers?

Post by RubySnooze » Wed Aug 19, 2015 10:34 am

OSAHell wrote:How on hell do they think you can fit a nasal pillow with sensor in your nostril??
Gets even funnier. Hubs finally got exasperated with the problems and called the doctor's office yesterday and asked how I was supposed to get the nasal pillows to work on top of all those wires. The technician didn't know anything about nasal pillows and didn't want to say anything in error, so gave him a number for her supervisor, the senior sleep technician in their sleep lab. Senior guy didn't understand why I would have a problem putting the pillows on top of the wires. He finally told hubs he would call the people who make the sleep study test kit and ask them how it works. He would call hubby back. That, of course, didn't happen.

With no additional information, I did night two with the FFM and an open pressure of 9 / 20. Will put SH charts below.

Per your info on the different levels of home testing (thanks!), this is clearly the most basic test.
OSAHell wrote:Also don't worry to much about the number (except leaks), IMHO, if your number are to good he might say that everything is fine...
I'm not concerned about the numbers being too good, they've been kinda awful, but worried that they don't seem at all representative of my usual problems. Not sure any three nights can give this guy an accurate picture though. I can't believe he's bothering with this when he has ten months of data from my machine that he's never looked at. Aaargh.

OSAHell wrote:How was your second night?

2 nights down one to go... Do you know how long before you'll be hearing back from him after there test night?
Thanks for asking. It's surprisingly difficult to do this. At least we approached night two a little wiser than night one. I'm very lucky to have a tech-minded husband who basically hooked me up and got me settled. The unit turned itself on before we took it out of the closet, which it shouldn't have done. Nothing is going quite like we were told. I doubled up on sleep meds to get me past the tangle of wires, weight of equipment, and inability to sleep on my side but still had crappy sleep. As you say: only one night to go.

I won't hear anything more until I see Doc Wonderful the middle of September. I have a breathing test next week and he's making me get a chest xray. I'll get results on all three of those things at our next appointment. Meanwhile, lack of sleep, and I'm betting lack of oxygen, keep me feeling so yukky and exhausted and headachy and unable to think... Yikes! I better not go down that road. I need to get some work done, even though I'd rather spend the day whimpering in bed. Get it together, girl!

Here are last night's SH results:

Aug 18
Pressure opened up to 9 / 20 (thank you, Pugsy!)
Quattro FX FFM
Small mask leaks were really disturbing my sleep; miss my pillows


Image

_________________
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: Started ASV 10/15/15 after an unsuccessful year on APAP

User avatar
RubySnooze
Posts: 162
Joined: Tue Jun 02, 2015 9:58 pm

Re: Seven months -- whazzup with these numbers?

Post by RubySnooze » Thu Aug 20, 2015 8:05 am

Final night of the home sleep study is done. Thank god. Will post SH below.

I had such an awful headache yesterday afternoon that I laid down for about 45 minutes in the afternoon to load up on oxygen. Didn't sleep. That's the early session you see. Actual night sleep sessions were 1 hr 15 mins, 11 mins, 1 hr 22 mins. That looks like a total of 2 hrs 48 mins. Bleh.

I'll load a closer SH of the actual sleep parts.

Very happy I'll be able to return to nasal pillows tonight. Thank you guys for helping me through!!!

Aug 19
Pressure 9 / 20
Quattro FX FFM
Afternoon oxygen refueling session

Image


Image

_________________
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: Started ASV 10/15/15 after an unsuccessful year on APAP

steeve
Posts: 41
Joined: Sun Dec 16, 2012 6:07 pm
Location: SE Tennessee

Re: Seven months -- whazzup with these numbers?

Post by steeve » Thu Aug 20, 2015 8:39 am

Hello RubySnooze:

I have been following your "ordeal" and admire and am amazed at your tenacity.

And I thought I wasn't getting much help from my Dr.& DME...Hopefully your new Dr. will surprise us all with the solution to your sleep struggles...Miracles do still happen!!!

Praying for that Miracle.

I am so amazed and thankful for the knowledgeable people here so willing to help. Will not attempt to name names knowing I would leave someone out. With these helping I can't help but know you will have the solution soon.

Ahh sweeet sleeeep, not just a bygone dream but a soon returning reality

Praying for that Miracle; Steve

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Tried the Silent Nite OA for 4 mos. before starting CPAP Therapy on 3/11/13 APAP Pressure set to 8-14

User avatar
RubySnooze
Posts: 162
Joined: Tue Jun 02, 2015 9:58 pm

Re: Seven months -- whazzup with these numbers?

Post by RubySnooze » Thu Aug 20, 2015 1:07 pm

steeve wrote:Hello RubySnooze:

I have been following your "ordeal" and admire and am amazed at your tenacity.

And I thought I wasn't getting much help from my Dr.& DME...Hopefully your new Dr. will surprise us all with the solution to your sleep struggles...Miracles do still happen!!!

Praying for that Miracle.

I am so amazed and thankful for the knowledgeable people here so willing to help. Will not attempt to name names knowing I would leave someone out. With these helping I can't help but know you will have the solution soon.

Ahh sweeet sleeeep, not just a bygone dream but a soon returning reality

Praying for that Miracle; Steve
Steve,

Thank you so much for the kind words and encouragement. It's a challenging journey, for sure. And you are so right: the smart and generous people here on the forum make all the difference. Don't even want to think where I'd be without them. Just very, very grateful. And adding you to that list!

I am officially making "sleep...a soon returning reality" my mantra.

_________________
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: Started ASV 10/15/15 after an unsuccessful year on APAP

User avatar
RubySnooze
Posts: 162
Joined: Tue Jun 02, 2015 9:58 pm

Re: Seven months -- whazzup with these numbers?

Post by RubySnooze » Fri Aug 21, 2015 8:09 am

Reunited with my Swift FX!

Aug 20
Pressure back to 8.5 / 8.5
Swift FX (oh how I missed you!)
with "x" application tape
First session: 6 hrs and 9 mins

Image

_________________
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: Started ASV 10/15/15 after an unsuccessful year on APAP

User avatar
Pugsy
Posts: 63941
Joined: Thu May 14, 2009 9:31 am
Location: Missouri, USA

Re: Seven months -- whazzup with these numbers?

Post by Pugsy » Fri Aug 21, 2015 8:15 am

6 hours...that has to be close to some sort of record for you. Congrats.
Amazing what 3 nights of crappy sleep will end up giving you on that 4 th night.

You know if you say you slept at least halfway decently and feel halfway decent (given your history) I would be doing a happy dance for sure about last night.

_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier
Additional Comments: Mask Bleep Eclipse https://bleepsleep.com/the-eclipse/
I may have to RISE but I refuse to SHINE.

If you want to try the Eclipse mask and want a special promo code to get a little off the price...send me a private message.

User avatar
RubySnooze
Posts: 162
Joined: Tue Jun 02, 2015 9:58 pm

Re: Seven months -- whazzup with these numbers?

Post by RubySnooze » Fri Aug 21, 2015 10:28 am

Pugsy wrote:6 hours...that has to be close to some sort of record for you. Congrats.
Amazing what 3 nights of crappy sleep will end up giving you on that 4 th night.

You know if you say you slept at least halfway decently and feel halfway decent (given your history) I would be doing a happy dance for sure about last night.
Yep, happy dance happenin' here!

And yes, I did feel like I got fairly decent sleep. And I could've gone even longer if the cat hadn't dropped an aromatic gift in the box down the hall. [How come the hub can sleep through those and I can't?? ]

Also, did it without rx sleep meds. I figured since I was nearly comatose after the sleep study, it was the perfect moment to starting letting go of those.

See how far you've gotten me?

_________________
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: Started ASV 10/15/15 after an unsuccessful year on APAP

User avatar
RubySnooze
Posts: 162
Joined: Tue Jun 02, 2015 9:58 pm

Re: Seven months -- whazzup with these numbers?

Post by RubySnooze » Sun Aug 23, 2015 11:31 am

Behold Friday night and Saturday night:

Pressure 8.5 / 8.5
Swift FX
Tape in "x" application

Image

Image


Still happy dancin' over here...

_________________
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: Started ASV 10/15/15 after an unsuccessful year on APAP

User avatar
RubySnooze
Posts: 162
Joined: Tue Jun 02, 2015 9:58 pm

Re: Seven months -- whazzup with these numbers?

Post by RubySnooze » Tue Sep 01, 2015 10:50 am

Last night's SH stats below. Obstructives and hypopneas have been running neck-in-neck lately.

Aug 31
Pressure 8.5 / 8.5
Swift FX with 3M Micropore tape

Image

_________________
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: Started ASV 10/15/15 after an unsuccessful year on APAP

User avatar
RubySnooze
Posts: 162
Joined: Tue Jun 02, 2015 9:58 pm

Re: Seven months -- whazzup with these numbers?

Post by RubySnooze » Wed Sep 02, 2015 12:21 pm

Did a little pressure experiment last night. Changed it up from 8.5 / 8.5 to 9 / 11. Mostly because I woke up several times the previous couple of nights feeling like I'm not getting enough air. And also because I can't get AHI below 5 on any consistent basis. And a little bit because I'm incurably curious.

Felt like I got some high quality sleep. Even though it came in five sections, the longest of which was 2 hrs 48 mins. Much of the sleepus interruptus was the cat. Who is still not well and continues to be demanding.

Here's what Sleepyhead had to say. Any input most appreciated!

Sep 01
Pressure 9 / 11
Swift FX with 3M Micropore tape

Image

_________________
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: Started ASV 10/15/15 after an unsuccessful year on APAP

User avatar
Pugsy
Posts: 63941
Joined: Thu May 14, 2009 9:31 am
Location: Missouri, USA

Re: Seven months -- whazzup with these numbers?

Post by Pugsy » Wed Sep 02, 2015 12:29 pm

Other than the increased activity right at the beginning of the night the report itself looks pretty darn good.
So we know it can work. Just need to get more nights at these settings to see if it will continue the good pattern.

_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier
Additional Comments: Mask Bleep Eclipse https://bleepsleep.com/the-eclipse/
I may have to RISE but I refuse to SHINE.

If you want to try the Eclipse mask and want a special promo code to get a little off the price...send me a private message.

User avatar
RubySnooze
Posts: 162
Joined: Tue Jun 02, 2015 9:58 pm

Re: Seven months -- whazzup with these numbers?

Post by RubySnooze » Wed Sep 02, 2015 11:44 pm

Pugsy wrote:Other than the increased activity right at the beginning of the night the report itself looks pretty darn good.
So we know it can work. Just need to get more nights at these settings to see if it will continue the good pattern.
Cool. Thanks so much for the input, Pugsy! I will hang out here at 9 / 11 for a few nights and see how things go.

_________________
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: Started ASV 10/15/15 after an unsuccessful year on APAP