CPAP Beginner wants to introduce himself

[ManuR]

Hey guys,
----------------------------------------------------- Introduction --------------------------------------------------
My name is Manuel, im 31 years old and im from germany. I suffer from bad sleep since a long time (around 10 years), snoring and waking up every 60-90min and need to go to the bathroom.
in May last year (2021), i suffered heart failure due to a genetic cardiomypathy. My Ejection fraction dropped to 16% and my lungs were full of water, making it impossible for me to get breath lying flat.
I was brought to hospital and the first step was to reduce the water retention by giving IV diuretics. Long story short, i was released 8 days later but from then on until december i had to wear a so called lifevest (company Zoll). This is an external defibrillator which, incase of rythm disorders and stop of heart beat should shock me to avoid death. In total, i was 4 times in hospital last year for diferent things (catether, myocard byopsy etc) and during the last year i was put on a host of medication. In December, the ejection fraction got back up to 35% which allowed me to remove the vest without requiring an internal defibrillator)
I use following medication right now:
- 2x 10mg torasemide daily (diuretic)
- 25mg eplerenone (potassium sparing diuretic)
- 15mg jardiance (slgt-2 antagonist --> also diuretic effect)
- 6,25mg nebivolol (beta blocker)
- 12mg candesartan
blood pressure is the biggest issue with this medication, it is often in the 90's to 50's.

-----------------------------------------------------Sleep apnea and the device + settings -------------------------------------------------------------
mid of decembre i had my "small sleep study" (at home) done which showed that i have moderate sleep apnea with an AHI of close to 30.
Due to my heart situation, the doctor did not want to let me wait until march for the complete sleep laboratory but instead, he called a company to give me a CPAP/APAP asap.
on 20th december ive received a call to come to their warehouse and get one. So i drove there and received a Resmed Airsense 10 Autoset and a Resmed F30 mask.
following settings were made (sorry for german, copied from Oscar)
Geräteeinstellungen

ModusCPAP Modus APAP
MindestdruckKleinster Theraphiedruck 6.00 cmH2O
Maximaler DruckGrößter Therapiedruck 15.00 cmH2O
AntibakterienfilterAntibakterienfilter Nein
EPRResMed Ausatem Druckentlastung Volle Zeit
EPR EbeneAusatem Druckentlastungs Ebene 3cmH2O
FeuchtigkeitsgradFeuchtigkeitsgrad 4
KlimakontrolleKlimakontrolle Handbuch
Luftbefeuchter StatusBefeuchtungsstatus aktiviert An
MaskeResMed Maskeneinstellungen Mund-Nase-Maske
PatientenzugriffPatientenzugriff Nein
RampeRampe aktivieren Aus
Schneller StartWenn Sie atmen beginnt das Gerät zu arbeiten Aus
TemperaturSchlauchtemeratur 27 ºC
Temperatur aktivierenSchlauchtemeratur ausschalten 1

i guess most important is min pressure 6cm, max pressure 15cm, EPR full with 3cm, no Ramp.
I dont have ay accesory yet, i was told i get this after the complete sleep laboratory.

-------------------------------------- first nights with the Resmed ---------------------------------------------------------------
so as expected, the first few nights, especially the first week was torrible. I did close to no sleep but i have insisted to keep the mask on, no matter what, because
i know it is important and i am disciploined enough not to fail.
so i wore the mask atleast 6 hours a night, no matter if i got sleep or not.
After the first week (after christmas) it got way better after ive fixed some issues:
- leagake of the mask was big at first which lead to my arm being blown by the cold air. This lead to my arm getting damn cold and it was annoying
- i had to learn to breath in and out through the nose. i have a full face mask because ive also breathed through my mouth but ive read it is better to breath through nose so i tried to make it happen
- but the device on my nightstand instead of the floor.

So since end of decembre i am getting sleep that i would say is okay. I still awake every 90-120mins and have to pee and drink a bit due to dry throat but i need much less sleep than without the cpap and feel somehow fresher in the morning.
I have attached 2 screenshots from Oscar. My AHI is constantly between 0,1 and 2,0 since end of december.

------------------------------------------- Questions --------------------------------------------------------------

1.) i am right now (as you can see on the screens) still waking up several times a night with the need to pee. I am doing this like that (even more often) since several years
--> is it possible my body is used to waking up every 90min and therefore, even if the sleep apnea is fixed, it takes a long time for the body to get rid of this "habit"?
2.) as you can see on the screenshots, i always have some OAs / Hypnoas / central Apnea at the end of each night. This leads sometimes to me feeling good waking up at 4:00Am, but then feeling out of breath at 6:00 if it happens in between the last sleep cycle. Any idea where this could come from?
3.) sometimes, espcially at start of the device, i feel like i dont get enough air to breath properly. Could this have to do with the min pressire being too low?

I have to say i am quite happy with the speed of therapy succes after reading some people have immense issues for months.
and thanks to everyone at here being so supportive and helpful with us beginners. You make a great job at helping others!!
regards,
Manu

[Pugsy]

The 2 nights above....how much of it do you think you were actually asleep?

Given your history and medications....I strongly urge you to have a chat with your doctor about the nocturia because while we all know that nocturia can be sleep apnea related, it is also a well known side effect from several medications especially diuretics of which you are taking quite a bit.

Your situation goes beyond plain ordinary OSA due to your rather complicated medical history.
Your reports above are unremarkable and within acceptable limits IF you were actually asleep but I suspect that a good bit of the time you weren't asleep so it probably doesn't really tell us much other than some really fragmented sleep quality.
It's impossible to get the needed sleep stages in required amounts for the restorative powers of sleep to work their magic with such fragmentation. Too many start overs and not enough time between wake ups to get through the needed sleep stages.

If you aren't actually asleep....the data from the machine doesn't mean all that much. The handful of flagged events at the end of the night...not really a big deal even if you were asleep. Not enough of them to be a huge problem.

Your lack of sleep quality or consolidated blocks of sleep, for whatever reason, is still a big problem.
I don't know how much of it is related to the diuretics you are taking but they definitely could be playing a significant part in your poor sleep quality. Obviously they are needed due to your medical history.....you need to be having a chat with your doctor.

[ManuR]

thanks for your reply Pugsy
I would say that i am asleep duing those ~90min blocks.
I always wake up, go pee, drink if i have a dry throat and go back to bet and sleep 3-5mins later. Only rarely i need longer than that to fall asleep.
Yes, i am also not quite happy with that fragmented sleep. On those 2 nights i was awake more than normally. Usually, i wake up 5-6 times in my 8-9h sleep.
yes, i have an appointment on tuesday with my cardiologist where i will speak about that. For my pulmonolgist, my appointsments are quite rare and i have to wait till after the sleep lab which is end of march if i am correct.
i know my situation is a bit more complex, i still thought it wouldnt hurt to say hello and introduce myself

[Pugsy]

Even without your unusual added complicating factors....it's quite common to have additional problems with fragmented sleep simply from all the newness that adding cpap machine use and mask wearing. Let's face it.....this cpap machine and mask wearing thing isn't exactly "normal" nor conducive to good quality sleep. The brain has to learn a new sleeping normal and the brain can sure be finicky about learning something new.

Even for myself, who didn't have anything complicating my sleep situation, I experienced multiple awakenings at first and couldn't really identify any specific reason. This lasted maybe 3 months for me. I used to say that my brain was waking me up often just to tell me "do you know you have an alien on your face blowing air up your nose" kind of alert.

We just have to sort of accept it and do the best we can while the brain is relearning a new normal sleep routine.
It may or may not involve adding some sort of sleep aid into the equation....something to talk to the doctor about for sure.
Maybe OTC sleep aid or even RX sleep aid. I don't know how much of your frequent awakenings are due to a physical need to urinate or are more of an "I am awake so I might as well go pee" kind of thing more than a painfully full bladder thing. There maybe a combination of both involved.

In the overall grand scheme of things you haven't been on cpap all that long and it's not like you have a choice in using the cpap so you sort of have to bull through it and do the best you can given what you have to work with.
You have additional bumps in the road to overcome for sure but with time the bumps should become smaller and more manageable.

In terms of actual cpap therapy effectiveness....I think the machine is doing a very good job in preventing the airway from collapsing. We don't expect a total zero apnea flagging night...so if you are worried about random event flagging...don't.
Sometimes a few flags are false positive irregular awake breathing will happen and sometimes an occasional real asleep apnea flag will happen. It's not a big deal for an occasional asleep flag to pop up....these are only a problem when present in large numbers and yours nowhere comes near large numbers.

So your OSA is being well treated and you are left with some common sleep problems in general which may be related to medication side effects or even simply habit. It can take a long time to learn a new sleep habit.

Given your unique medical situation....do run all this by your doctor. Right now your problem is getting more consolidated blocks of sleep and maybe he/she has some ideas as to what to try or not. As someone who also has crappy sleep quality issues ...... I suggest a discussion about some sort of sleep aid to help you through this rather large bump in the road.
There's a time and place for sleep aids (OTC or RX) and I think this is one of them. Bear in mind that all sleep aids come with additional baggage or side effects as well.

As for the actual settings....I see no need to change them from a therapy perspective.
Now for the feeling when you first start the night that you aren't getting enough air....that's rather common as well and while 6 cm starting pressure can feel rather suffocating for some people...we won't suffocate.
BUT that uncomfortable feeling can sure mess with sleep quality which is of course something we don't want.
You might be more comfortable with a little increase to 7 cm starting pressure....again something to consider or try.
There is no urgent need from a therapy perspective for the increase but sometimes simply comfort in general is a good enough reason. Remember without sleep....none of this really matters does it?

[Julie]

And a reminder (if you've been told at all) that Cpap usually 'fixes' nocturia to a great extent - if you normally wake up to pee x 5, after being on Cpap a while, you sleep right through, everything else being equal, because your kidneys are no longer affected by your overall lack of sleep and stress on your organs. But you have a different story, so do talk to your MD again and/or come back here (same thread please) with more Q's.

[ManuR]

hey Pugsy and Julie,
First, thanks for your answers and your support. Reading that it also took you both a while is atleast encouraging and gives me hope.
I think that me waking up has only to a small extend to do with my heart. Before 2021, i did take no medication apart from nebivolol and candesartan and i still woke up several times a night, even more than now with the CPAP.
I assume the last years without CPAP ive woke up due to the sleep apnea. My body probably made this a habit over the years and still wakes up although there is no need anymore.
@Pugsy:
ive already tried Zopiclone and temazepame but i have the feeling that those 2 make my breathing worse and they often make me feel worse the next day.
I have read that some antidepressant medication could help immensly staying asleep. I will discuss this with my doc on tuesday.
i will also try to drink less from 6 or 7 pm on to see if this makes a difference

[Pugsy]

I haven't researched your heart medications but you might dig deep in those potential side effects as to affecting sleep as well.
It's a known fact that just some heart meds alone can disrupt sleep.

https://www.aarp.org/health/drugs-suppl ... omnia.html

https://www.goodrx.com/drugs/side-effec ... g-insomnia

And yes....often the meds that are designed to help us sleep also come with some rather ugly baggage to affect us during the day. We are damned if we do and damned if we don't. I tried lots of different meds but most left me feeling worse during the day than I would feel if I didn't sleep good. I had to decided which is worse...feeling crappy from not enough sleep or feeling crappy from medication side effects. Neither a particularly good choice IMHO.

Keep trying though....if you don't try you know what the end result is.

[Miss Emerita]

You are smart to limit fluids in the hours before bedtime. You might talk with your doctor about the timing of the diuretic medication you take. You might also google "diuretic food and drink" in case you consume a lot of something that is diuretic. And you might ask your doctor whether possibly your prostate is enlarged enough to contribute to your problems with frequent urination.

[Janknitz]

How's your blood sugar control? Do you check it during the day and bedtime? You might check it when you get up to urinate as well because nocturia can be a sign of high blood sugar and I see you are on Jardinace. That drug increases the excretion of glucose in the urine, so if you are ingesting a lot of carbohydrates and your blood sugar is high, you will urinate more frequently. That, combined with diuretic medications can be the reason you are waking to urinate so often.

Talk to your doctor about this.

I always check here for information about Type 2 diabetes medications: https://www.bloodsugar101.com/medicatio ... upplements

[ManuR]

How's your blood sugar control? Do you check it during the day and bedtime? You might check it when you get up to urinate as well because nocturia can be a sign of high blood sugar and I see you are on Jardinace. That drug increases the excretion of glucose in the urine, so if you are ingesting a lot of carbohydrates and your blood sugar is high, you will urinate more frequently. That, combined with diuretic medications can be the reason you are waking to urinate so often.

Talk to your doctor about this.

I always check here for information about Type 2 diabetes medications: https://www.bloodsugar101.com/medicatio ... upplements

this is something i knew but have not considered. Now that you say it, i increased my carbohydrates in the new year and eat some of them 1h before bed.
My blood sugar is fine, atleast checking it in the morning. It is around 78-83 there. 2h after meal it is around 110
i will try to remove the carbohydrates from my evening meal and put them into my breakfast and try if it changes anything.
Also, i will take my torasemide earlier in the day (after waking up and at midday instead of 4-5pm), so lets see if this also helps
thanks for all your answers!