86yr old mother adapting to CPAP - doubts & questions

[Dulcecica]

Hello everyone,

First of all I want to thank everyone in the forum, it's a treasure trove of information.

I'm from Barcelona, Spain. My mother is 86 years old and dependent on someone 24/7. Before covid-19's shelter in place order she had a lady taking care of her at night and and another in the morning. In the afternoons me or my brothers would stay with her. Since mid March none of the carers has come and I take turns with one of my brothers nursing our mother.

A silver lining of this whole situation has been that only two nights after sleeping next to my mother I realized there was something very wrong with her breathing, she seemed to be choking and waking up constantly. I bought a VITACOM ring and saw that indeed her breathing and oxigen level were all over the place. I got in touch with a Pulmonologist and she ordered a sleep test at home. Turns out my mom has severe apnea with an AHI of 52. The doctor prescribed a CPAP (no auto, she said studies favored plain CPAP) with a ramp of 20 min and max pressure at 10.

Why on earth no one noticed her irregular breathing before is anybodies guess... when asked, the lady said that she had no breathing problems and that it was a phlegm problem... ah well...

After doing some homework I decided to get for her a dreamstation auto with humidifier and a dreamwear cushion mask. I ignored the doctors call for a plain CPAP, and decided at my own risk to get her the auto, thinking she had a better chance of adapting. The first night was like a miracle, 99% mask fit and an AHI of 2.8. She also awoke very refreshed. But from then on it has been downhill. The leaks have increased and the AHI as well going to 6 then 8 then 16 and last night 18.7. I also have to occasionally turn off the machine and restart it, so that she gets the ramp again because once she awakens she finds the high pressure too much.

The machine is set with a 20 min. ramp starting 4 with a max of 10. After the first night I increased to 11 but she seemed overwhelmed by that so I brought it back down.

This past (and worst) night we had changed the mask from the normal dreamwear nasal cushion to the gel pillows hoping to improve on the leaks. It has been the worse AHI ever since she started, but paradoxically the phone app says the mask fit was 100%.

I don't know if, because the seal was so good (or not, if you look at the charts it doesn't look like no leaks... another thing I don't understand) she felt like she had to open her mouth and that's why the AHI went up. We are waiting for the dreamwear frame with arms to get here on Monday (it's not sold in Europe so I had to get it in the US), for I feel that perhaps with that frame the seal of the pillow will be better, and she will be happier, the gel cushions are after all very annoying.

This is a screenshot of the first night:

First night with autocpap

Oscar_6May2020_FirstNight.JPG (232.87 KiB) Viewed 1815 times

A night in between:

Oscar_10may2020.JPG (252.86 KiB) Viewed 1815 times

And last night:

Last night with autocpap

Oscar_12may2020.JPG (242.34 KiB) Viewed 1815 times

Any and all advice will be welcome. I feel like she wants to give up on the treatment and that would not be good.

Thank you in advance,

Cristina

[Pugsy]

Despite what the phone app (DreamMapper I assume) is showing ....there are significant periods of large leak. See the LL line on the events graph? That's large leak per the machine sensors....and see the periods of gray blocks on the other graphs...those are large leak times also.

Either she's mouth breathing/opening causing the leaks or the mask itself is simply moving around a lot and losing the seal.

The leaks are happening even at the low minimum pressure so we can't blame higher pressure for the cause of the leaks.

The leaks are bad enough they could be disturbing her sleep and causing arousals which in turn could be causing false positive event flagging...which might account for the higher AHI.
You might want to watch the videos here and learn how to evaluate flow rate for asleep breathing vs awake/arousal breathing.
http://freecpapadvice.com/sleepyhead-free-software
While it is talking mainly about central apnea false positive....it can be any event category that can get a false positive flag. It's not limited to centrals/CAs.

Did her DreamWear mask package come with the side fleece wraps? If it did...are they being used?

Does she ever sleep on her back? Especially at the end of the night?

[LSAT]

According to the charts you posted...the pressure setting on your mother's machine is minimum 4 and maximum 10.. In my opinion, the minimum should be at least 6 maybe higher and the maximum at least 15. Ramp is starting at 4 for 20 minutes...With a minimum pressure of 4, ramp is really doing nothing.... We'll let Pugsy comment on the pressure.

[Pugsy]

I am not quite ready to comment on pressure settings until I get more information.
The first night...quite acceptable so makes we wonder what happened to get thing so far in the toilet.
It's not like there never was a decent night.

[zonker]

Hello everyone,

cristina, welcome to the zoo! your mother is VERY lucky to have you as a daughter. you've found the problem and you are taking steps to help her out. good for you!

i'm so glad you didn't listen to the stupid doctor who wanted your mother on straight cpap. you did the right thing in getting her an auto adjusting machine.

listen carefully to pugsy. she is the moderator of this forum. she's also one of our top people. she'll have you on the right path very soon.

good luck!

[Julie]

And listen to LSAT re pressure settings.

[kaiasgram]

Dulcecica, you said that your mom's doctor originally prescribed a CPAP with no auto -- what pressure setting did the doc prescribe? You mentioned "maximum 10" but if the doctor was prescribing a single-pressure machine, there's really no "maximum." I'm wondering if the doctor prescribed a straight CPAP pressure of 10, in which case the minimum pressure setting of 4 that you have now on the auto machine might be too low. I agree the leaks are a problem, but it will also be helpful to clarify what pressure setting the doctor originally prescribed, and whether that setting was actually based on a sleep study.

[Dulcecica]

Hi everyone,

Thank you for taking the time to read my long message and offer suggestions.

Here are the answers to your questions:

Pugsy, I suspect my mother does occasionally breathe through her mouth, she also tends to have her hand in front of her face, which doesn't help. I will look at the link you sent me to see if we have false positives. She is using a small frame and small cushion/pillow, and she is using the fleece wraps too. She never sleeps on her back, always one side or the other.

Lsat, The minimum of 4 seems to be subjectively too much, as when she wakes up to go to the bathroom and tries to reconnect she complains that the pressure is too much... I dread increasing the pressure...

Kaiasgram, concerning your question

you said that your mom's doctor originally prescribed a CPAP with no auto -- what pressure setting did the doc prescribe? You mentioned "maximum 10" but if the doctor was prescribing a single-pressure machine, there's really no "maximum." I'm wondering if the doctor prescribed a straight CPAP pressure of 10, in which case the minimum pressure setting of 4 that you have now on the auto machine might be too low. I agree the leaks are a problem, but it will also be helpful to clarify what pressure setting the doctor originally prescribed, and whether that setting was actually based on a sleep study.

I just now realize that the info I gave you was wrong. Her report (for insurance purposes I guess, although I've bypassed insurance altogether -still waiting on their call-) says (I've translated from Spanish): "Please authorize treatment with nasal CPAP at a pressure of 7 cm H2O, since she presents a Syndrome of severe sleep apneas with a IAH 52, sat O2 mean of 94% and sat O2 minimal of 83. It would be convenient set a pressure of 7 cm H2O with conventional CPAP, nasal type mask and adjusting the ramp to 20 minutes."

And now I remember she told me, when asked about auto CPAP, that they only use the auto CPAP to test, after a month or so, if the pressure needs to be readjusted. I have no doubt in my mind that the auto CPAP is the best thing for my mom, and I'm happy I didn't let my mom be the guinea pig of this woman's theory that conventional CPAP is better (I honestly could not find any definitive studies pointing in that direction).

I feel this is a marathon and not a sprint, and I don't want to scare my mother away from the machine. She has a tendency to be her worst enemy, and I wouldn't put it past her to ditch the treatment altogether... that is something I want to avoid at all costs. Later today I will post last nights report, my brother says it has been the best night since he's been there, she let him readjust the mask (back to the cushion) but at 7 am she said enough, although she had asked to have the mask back on, she then said that the pressure was excessive, so off it went.

Thank you all again for helping me (us)! It's wonderful to have help and not feel so alone and lost.

[Pugsy]

I would like for you to try an experiment with your mom while awake and not under any stress to fall asleep.
Just want to try something that might help here with her feelings of the 4 cm starting pressure being "too much".

Turn on EPR....set it to 2...full time...set the minimum pressure at 6 cm. Have her just try inhaling and exhaling and see what she says about any difficulties she might be having.

[Dulcecica]

Thank you Pugsy, I will try to find out what EPR is... a setting on the cpap machine? And have her test it during the day while sitting down (is that the idea?).

Another question I have is, has anyone tried Melatonin? The pulmonologist prescribed one every night at 22pm (my mom usually goes to sleep between midnight and 1am)... she declined to try it, but I was wondering what you guys think.

[zonker]

Thank you Pugsy, I will try to find out what EPR is... a setting on the cpap machine? And have her test it during the day while sitting down (is that the idea?).

Another question I have is, has anyone tried Melatonin? The pulmonologist prescribed one every night at 22pm (my mom usually goes to sleep between midnight and 1am)... she declined to try it, but I was wondering what you guys think.

melatonin is one of those things that vary from person to person in its effect. i use it in liquid form so i can control my dose more closely.

i take less than 1 mg at night, right before lights out.

what dosage is your mom taking? is it having the desire affect? you may have to experiment to see what works best for her. it's not quite like a sleeping pill in that it will knock her out. but it can help with sleep, particularly the falling asleep part.

good luck.

[Pugsy]

If you don't know about EPR...it's explained in the clinical/provider manual which can be found here.
https://www.respshop.com/manuals/ResMed ... %20her.pdf
It's a form of exhale relief and I know it may sound counter productive but using a starting pressure of 6 with EPR activated so that inhale is at 6 and exhale is at 2 cm will be easier to deal with than just inhale at 4 and exhale at 4.
It's the actual physical drop that offers ease in exhaling. Without a physical drop it's harder to deal with.

[Dulcecica]

Hi again,

Pugsy, I don't think my mom's DreamStation has the setting your mentioning. This is the applicable manual: https://www.westcaremedical.com/wp-cont ... Manual.pdf
Am I missing something? I have the A-Flex setting on at the maximum setting of 3, to make her exhaling easier.

Zonker, you ask

what dosage is your mom taking? is it having the desire affect? you may have to experiment to see what works best for her. it's not quite like a sleeping pill in that it will knock her out. but it can help with sleep, particularly the falling asleep part.

The thing is that my mom has not tried it yet, and the prescription does not mention the strength... perhaps there is only one strength available in Spain?... She also falls asleep quite quickly, although goes to bed really late, she used to dread going to sleep... now we know why!

This is the screenshot of last night, AHI quite improved to 8.78. Anyone can explain to me those gaps in the data? Is that a major leak?

Oscar_13may2020.JPG (233.19 KiB) Viewed 1714 times

But... if they're supposed to be major leaks, how does it explain the SpO2, that remains pretty stable during those grayed out time periods, and only gets out of wack when the CPAP is turned off? Check it out:

Oscar_13may2020_detail.JPG (162.56 KiB) Viewed 1714 times

My moms main issue are hypopneas, that accounts for 42.9 of her 52 AHI, I don't know if it makes any difference.

Thanks again for all the input!

Cristina

[Pugsy]

Sorry...my bad. The DreamStation has exhale relief called AFlex....for some reason I was thinking ResMed machine.

Try A Flex set to 2 or 3 with minimum pressure of 6 and see how she does with it while awake.

Hyponeas are just OAs that don't quite make the criteria to earn the OA label.

Hyponeas....40 to 79% reduction in air flow caused by airway tissues blocking the airway that lasts for at least 10 seconds.

Obstructive Apneas....80 to 100% reduction in air flow caused by airway tissues blocking the airway that lasts for at least 10 seconds.

[kaiasgram]

I just now realize that the info I gave you was wrong. Her report (for insurance purposes I guess, although I've bypassed insurance altogether -still waiting on their call-) says (I've translated from Spanish): "Please authorize treatment with nasal CPAP at a pressure of 7 cm H2O, since she presents a Syndrome of severe sleep apneas with a IAH 52, sat O2 mean of 94% and sat O2 minimal of 83. It would be convenient set a pressure of 7 cm H2O with conventional CPAP, nasal type mask and adjusting the ramp to 20 minutes."

Glad I asked, it may prove helpful once leaks are under better control to know what the original recommended pressure was.

I feel this is a marathon and not a sprint, and I don't want to scare my mother away from the machine. She has a tendency to be her worst enemy, and I wouldn't put it past her to ditch the treatment altogether... that is something I want to avoid at all costs.

You are 100% correct about this. A year or so ago my 91 year old mother tried to get started on PAP after getting a severe sleep apnea diagnosis. Unfortunately she gave up not long after starting to use the machine. She never got leaks under control and unlike your mom, she was absolutely not open to support or help from any of us family members who are veteran PAP users. But like your mom, she *does* have a tendency to be her own worst enemy! She quit, saying "It didn't make me feel any better." She never really understood how her many health issues over the years -- sleep interruptions, heart issues, and..... could have been related to her untreated sleep apnea, or how PAP therapy might have helped.

So, good for your mother and good for you