Second try with CPAP. Please, help me make it work this time!

[prkl]

This forum seems to have people with lots of expertise and helpful attitude, so I decided to gather my courage and ask for help.This post might be a long one, so apologies in advance...

[TL;DR]
Moderate sleep apnea and sensitive sleeper. Tried CPAP for >1 year, but eventually was not able to fall asleep with it. MAD did not work well enough. Now on CPAP again, and really need to make it work this time...
[/TL;DR]

I'm 34 year old female, and have been suffering from fatigue since my 20s. At that time I was diagnosed with hypothyroidism, but even after getting the medication in balance for that, the fatigue never left. I do have a small jaw, and had a dental device because of that as a kid, but I suppose in the end the device only made enough space for my wisdom's teeth and nothing else. Combining small jaw with hypothyroidism, I suspect that I got sleep apnea as a not-so-nice additional bonus already back then. The main problems were (and currently are) daytime fatigue and excessive need for sleep at night (around 10-12h + naps sometimes). I was not that sleepy during daytime (not dozing off at odd places or anything like that), so that might have contributed to my difficulties getting a diagnosis for OSA back then.

Over the years I tried to seek help for the fatigue and exhaustion from the student healthcare services, which first resulted in trying different doses of thyroid medication. To the point where I even had drug-induced hyperthyroidism (which usually makes sleeping pretty difficult), but I was sleeping the same long hours, only my resting heart rate was >100 BPM . At the same time, due to not having energy to do just normal things (attending all the same classes my friends did, and just live a normal student life), my mood was not so good and I had some anxiety issues. Even though the fatigue preceded the mood issues, the doctors sort of decided I must be depressed, so they had me try three or four different antidepressants, none of which helped. One psychiatrist even asked me if I'm sure I really enjoy sleeping so much... Therapy helped some, mainly for living with fatigue, not really for the fatigue itself...

Four years ago, I stumbled on a doctor who suspected sleep issues and sent me to a polysomnogram, which showed I had very mild sleep apnea (AHI 6.5, RDI 14.8 ). I was pretty happy to find out that there actually was something measurably wrong, and I was not just crazy after all... However, as the OSA was mild, I was just instructed to try to lose weight, have some melatonin, and that's it.

Early 2018 I finally found a doctor who has taken the fatigue seriously. He sent me to a new PSG, which now showed moderate OSA (AHI 12.3, RDI 20.2). He wanted me to try CPAP, as he thinks that the weight loss is not going to happen before the sleep issues have been solved. I got used to sleeping with it in a week or so (pressures back then were 6.2-20 cmH2O, and I had P10, otherwise the same setup as now). After some time on CPAP I had maybe two weeks when I had something I remember describing as "lots of energy, but not in a good way", as I felt a bit hyperactive at that time. Then the fatigue and excessive sleeping came back, but my doctor thought this was rebound sleep so nothing to worry about.

When the fatigue still was there after a few months, he wanted yet another PSG (with CPAP) just in case. This time, it showed I had periodic leg movement disorder on top of OSA (AHI was 3.6 and RDI 9.4 in this one, with CPAP). I got medication for the PLMD. When even after some time the fatigue was still there, I tried a different PLMD medication, but that did not work for the fatigue either so I got back to the first one.

So far (after the usual hiccups in the beginning) I had slept well with the CPAP, but now I started to have trouble with it. Suddenly falling asleep with it was difficult, I would take the mask off in my sleep. Even if I initially was able to fall asleep with it, I would wake up at some point and not be able to fall asleep again. This was pretty weird as I got used to the machine pretty fast in the beginning. The conducted noise from the P10 vents bothered me the most, I even got a new P10 as I thought the old one was broken, but the noise was the same. However, without CPAP I had absolutely no trouble falling asleep. Again a PSG (#4) with CPAP, this time AHI 4.6 and RDI 18.7, no other abnormal findings. Now I think that the CPAP was not really doing it's job, but back then the doctor first wanted to address the falling/staying asleep issue. Tried a couple of different medications for that, but in the end doctor suggested getting a dental device. At this point I had been on CPAP for more than a year.

MAD resolved the falling asleep problem, but not fatigue, although for a while I had a bit better time with that. Even went through CBT-i just to keep the doctor happy, but eventually he had to admit that this is not a sleep hygiene or insomnia issue. So, yet another sleep study (no EEG this time) with the MAD showed AHI of 7.7. I should add that in addition to the sleep studies I have had other possible causes such as thyroid problems, ferritin levels and diabetes checked, but the blood tests have come back normal.

So, now I'm again on CPAP, as there seems to be no other option. My doctor seems to be convinced that this is a sleep-breathing related problem. I started CPAP again two weeks ago, and the last couple of nights I have been able to sleep through the night with it, about 10h each. I got first the N30i and later P30i, which really did the trick for being comfortable enough to sleep. The pressure settings are also different from before, now it is auto from 8-18 with EPR 1. I'm still tired during the day, but this early on I'm not worried about that too much.

What does worry me is how I can avoid the problems that occurred the first time (insomnia), and how I can make sure that the CPAP actually helps the breathing problems this time? So far I have been doing as the doctors have told me, being maybe more patient than I should, but I feel I now need to take a more active role in this. I would really appreciate any tips or comments you can give that might help me to get this right this time. I have attached an OSCAR report below from the same night as PSG #4, so at least it seems that the machine back then did not recognize all the apnea and hypopnea events. According to the PSG I had in total 6 central apneas (no obstructive at all), 30 hypopneas and 111 flow limitations, but the machine thinks I had 4 centrals and 1 obstructive, and caught none of the hypopneas. I'm not sure how to interpret the flow limitation graph.

Thank you for taking the time reading this far. I will be grateful for any comments you might be able to give.

[Pugsy]

Do you take any medications of any kind, even OTC? If so, what?

Do you wake up very often during the night? If so, any idea why?

How many hours of real sleep do you think you are getting and not just laying there awake using the machine?

Do you drink alcohol within 2 hours of bedtime?

[prkl]

Thanks for your reply, Pugsy! I really appreciate you taking the time.

Do you take any medications of any kind, even OTC? If so, what?

I have two medications I take regularly, levothyroxine for hypothyroidism in mornings (I believe the US equivalent might be Synthroid), and a small dose of pramipexole for PLMD in evenings (no idea what it is called in the US, but anyway it is a dopamine agonist).

On top of those I occasionally take some melatonin. That's mainly to maintain at least regularish sleep schedule, as sometimes I'm not able to get out of bed until noon no matter how many alarms I set. Sometimes I turn them off in my sleep... However, exercise usually helps more than melatonin in falling asleep.

Do you wake up very often during the night? If so, any idea why?

Ummm, this is actually I tough one. On normal nights I might wake up once or twice (usually not though), but I'll fall asleep again practically immediately. However, the PSGs in the past have shown a lot of spontaneous arousals I'm completely unaware of, according to my doctor one of the worst cases he has seen. The last few nights now again on CPAP I've had a bit of trouble with getting the mask to seal (left nostril is fine, right does not feel... right ), so I woke up maybe three or four times to fiddle with the mask but still fell asleep again within minutes. The leak rate still seems fine, less than 6 l/min 95% of the time.

How many hours of real sleep do you think you are getting and not just laying there awake using the machine?

Currently on CPAP I would say at least 8-9 hours. I fall asleep in about half an hour, which is a bit longer than without the machine. The pressure tends to go up high to around 17-18 before I fall asleep which is a bit annoying. On the ramp the pressure goes too low and I'm not able to breathe properly so not have been using that either. The conscious and unconscious awakenings I estimate take another half an hour off the night, so I think I lose an hour of sleep from the total "eyes closed time". On the MAD I think I got ~10h or so, at least. Sometimes 12h+ on weekends.

Back then the first time on CPAP I think I got about the same amount as now, until the insomnia started to kick in. Then I would try dozing with CPAP anything between 5 minutes and 3 hours until giving up and sleeping fine without.

Do you drink alcohol within 2 hours of bedtime?

In general, no. I drink alcohol maybe once in two months, however at those times it might have been within 2 hours of bedtime. Happening only on rare occasions, I do not think that would be a big problem, but please correct me if you think I'm wrong.

[Pugsy]

Can you give us a screen image of a recent night? The one you supplied was April 8, 2018 and it's a bit whacky.
Obviously there was a problem with the settings and they don't correlate as to results. So hard to really do much but scratch our heads but it isn't really remarkable.

The alcohol question is routine just because some people do regularly drink in the evening and sometimes quite late (and sometimes to excess) for various reasons thinking it helps sleep but actually alcohol messes with the central nervous system and messes with sleep instead of helping sleep. Passing out doesn't count. You don't drink enough to have it be a factor.

With medication questions we look for meds that either might be messing with sleep or causing unwanted symptoms during the day as a known side effect.
pramipexole...commonly known as Mirapex here in the US is a Parkinsons medication that they found seems to help with the PLMD/ Restless Leg syndrome.
https://www.webmd.com/drugs/2/drug-3680 ... al/details
https://medlineplus.gov/druginfo/meds/a697029.html
https://www.mayoclinic.org/drugs-supple ... 065603?p=1
It is known to mess with sleep. Also known to cause fatigue.
Now I realize you had problems with fatigue prior to taking the medications so while we probably can't blame all of the unwanted symptoms on medication side effects...it wouldn't be impossible for it to be a factor.

Melatonin will also sometimes cause a hangover effect of sleepiness the next day. Google it....it's not without side effects.

Everything we take can cause some sort of side effect. Even your thyroid medication. It always goes back to that old risk vs rewards thing when it comes to medications and side effects. Obviously we have to have normal thyroid function so it's not like we can just quit taking thyroid meds. I have to take a blood pressure pill that causes fatigue...I have to weigh the fatigue factor vs the need to keep my BP low...Obviously the risk of a stroke is worse than dealing with a bit of fatigue so I take the BP meds. I don't like it but I do it and realize that it comes with some baggage but having a stroke would cause more baggage.

It is normal to wake a few times a night...like it is normal to wake after a REM stage sleep cycle is over with and we might have 3 to 5 REM cycles during a night depending on how long we sleep. Normally we aren't awake long enough to remember it and we just go back to sleep.

Now your mention of a lot of spontaneous arousals does raise a big red flag. There are 2 kinds of arousals...those related to airway issues and those that we simply don't know why we have them. CPAP/APAP will help with the airway related arousals but it does absolutely nothing to help spontaneous arousals.
Compounding the problem is that the spontaneous arousals could be seriously impacting our sleep quality and messing with the normal sleep cycles to the point that maybe we aren't getting the normal percentages in each sleep cycle that we need for the restorative powers of sleep to work their magic and let us get good quality sleep.

You were given a medication to help with the PLMD/Restless Leg issues on the hope that maybe the spontaneous arousals were from the PLMD. Some of them probably were but some of them might not have been and again if that is the situation then the number of spontaneous arousals could still be impacting sleep quality.
Figuring out the cause of spontaneous arousals is extremely difficult and to fix a problem we first have to identify the cause of the problem and even then it isn't always easy. I experience that myself with pain issues which I know cause me a lot of spontaneous arousals but I despite everything I have tried to help reduce the pain.....I have more bad nights than good nights.

For now let's see what your cpap machine is showing is going on.
Watch these videos here because I want you to learn how to evaluate flow rate for arousal breathing.
http://freecpapadvice.com/sleepyhead-free-software

More on that later as I have time to compose my thoughts and we see first what the machine is showing or not showing or doing or not doing.

[Miss Emerita]

You have probably already looked into this, but just in case, here's some information about idiopathic hypersomnia:

https://stanfordhealthcare.org/medical- ... omnia.html

I also wonder whether you've talked with your doctor about screening for autoimmune diseases, especially autoimmune connective tissue diseases. For many of them, the symptoms include fatigue. While there are various subtypes, each with its own distinctive cluster of symptoms, in real life they are fairly often less clear-cut and can be hard to diagnose.

[prkl]

I asked my doctor about the pramipexole side effects when the medication was started, however at that time I was more concerned about the more dramatic (but luckily very rare) side effects such as compulsive gambling... His opinion was that the dose is so small (much, much less than is usual for Parkinson's, I believe), that the side effects should not become an issue. However, thanks for pointing out the other possible side effects, I will talk about those with the doctor.

The melatonin hangover is another thing that I need to keep my eye on. During this week (now that I've finally been able to sleep with the CPAP) I've had a couple of more energetic mornings, but then crashed in the afternoon. Some other days I've felt horrible in the morning, but around 3 pm it has been like a lightbulb goes on for the rest of the afternoon. Now I'm thinking that the bad mornings this week might have been after melatonin.

The spontaneous arousals are something that makes me worry, too. Based on the PSGs I have had both spontaneous arousals and PLMs (not sure how exactly they differentiate the two), so it seems it's not all respiratory related and not all PLM. They can be stress related though. I know during work trips I do spontaneously wake up (and am aware of it) frequently, and same happens if I absolutely must make sure I wake up in time in the morning for some reason or other. (I work flexible hours so most of the time I do not need to be at the office at specific hour, even less now as working from home due to the virus situation.) I'm kind of hoping that what spontaneous arousals show in the PSGs were just due to feeling stressed about the test situation and the need to wake up to return the device in time. Those electrodes glued all over did not really help either... What gives me hope is that during this week I've felt slightly better, so the CPAP seems to be doing at least something good.

The file attached is from Friday. The minimum pressure was changed (remotely by the nurse) from 8 to 8.6 between waking up and transferring the data, which should explain any oddities between the sidebar and the graphs. The pressure tends to go high before I fall asleep, and the ramp starts waaaaay too low so I have not been able to use that. And of course I forgot to ask the nurse about that over the phone... Do you know if it is possible to set the ramp to stay at the minimum prescribed pressure?

[prkl]

You have probably already looked into this, but just in case, here's some information about idiopathic hypersomnia:

https://stanfordhealthcare.org/medical- ... omnia.html

I also wonder whether you've talked with your doctor about screening for autoimmune diseases, especially autoimmune connective tissue diseases. For many of them, the symptoms include fatigue. While there are various subtypes, each with its own distinctive cluster of symptoms, in real life they are fairly often less clear-cut and can be hard to diagnose.

Thank you for pointing these out! Something autoimmune is definitely possible. As I've understood it, if you have one autoimmune issue you are more likely to get another. I already have my thyroid messed, even though I did not back then have elevated antibodies related to Hashimotos... However, my doctor is quite strict about worrying about one thing at a time. I tried, but were not able to trick him to even speculate what next if the CPAP fails again.

I still agree with him though, we found out that the MAD was not effective enough only mid-December and the CPAP was (re)started two weeks ago. I think it's too early to jump off this train, but we'll see...

[Pugsy]

When the pressure went way up at the very beginning of the night it was in response to the flow limitations...look at the activity on the FL graph and you can see what I mean. I see no reason to have such a high maximum just so the machine can try to kill some FLs that are occurring while awake...which is a futile endeavor anyway.

Do you experience very much nasal congestion at the beginning of the night?

Obviously that big increase is going to be a problem falling asleep and there are ways to remedy that problem if need be.
There is also a way to alter ramp starting pressure if need be. Most people will find that the 4 cm starting pressure for ramp isn't comfortable but they don't know that they can actually set the starting pressure higher if they need or want ramp to be used.
Explained in the manual along with how to make changes yourself should you have a mind to.

https://www.respshop.com/manuals/ResMed ... %20her.pdf

[prkl]

When the pressure went way up at the very beginning of the night it was in response to the flow limitations...look at the activity on the FL graph and you can see what I mean. I see no reason to have such a high maximum just so the machine can try to kill some FLs that are occurring while awake...which is a futile endeavor anyway.

Do you experience very much nasal congestion at the beginning of the night?

Obviously that big increase is going to be a problem falling asleep and there are ways to remedy that problem if need be.
There is also a way to alter ramp starting pressure if need be. Most people will find that the 4 cm starting pressure for ramp isn't comfortable but they don't know that they can actually set the starting pressure higher if they need or want ramp to be used.
Explained in the manual along with how to make changes yourself should you have a mind to.

https://www.respshop.com/manuals/ResMed ... %20her.pdf

The manual was an interesting read, thanks! Unfortunately the pressure settings (including the ramp starting pressure, it turns out) are not available to me, but I can ask the staff at the clinic to adjust them for me. I can only set the ramp duration/off by myself. Obviously I could change the pressure settings too, but at this point I'm not comfortable making things too complicated with the clinic... I plan to talk with my doctor about if we could agree on some framework within which I could play with the pressure settings.

I've had a little nasal congestion, but not that much that I would have been really concerned about it. Often it's one nostril or the other, depending on which side I'm sleeping on. I suspect the pressure increase might be more related to the way I breath when awake, as when I fall asleep the pressure goes down. Anyway, reduced the humidifier setting a little for next night in case that would help with the congestion.

[Pugsy]

All settings are indeed available to you including changing the ramp pressure if you just enter the clinical setup menu.
To enter that setup menu area just requires a little combination of button pushing.
Choice is yours whether you want to do it or not but be clear....it is available to you.

Sounds like your intermittent nasal congestion might be related to normal nasal cycle thing.
https://en.wikipedia.org/wiki/Nasal_cycle

[prkl]

For now let's see what your cpap machine is showing is going on.
Watch these videos here because I want you to learn how to evaluate flow rate for arousal breathing.
http://freecpapadvice.com/sleepyhead-free-software

More on that later as I have time to compose my thoughts and we see first what the machine is showing or not showing or doing or not doing.

These videos were really interesting! What gave me a lightbulb moment was the one about REM specific apnea. The PSGs show that most of my apneas (but not all) are while in REM. Probably this 1.5h pattern is something I should keep my eye on? I've attached OSCAR report from last night where I think it's visible. I'm thinking about switching the EPR off for the night to see what happens.

After 5 am I woke up to a tiny but annoying leak from between my nostril and the pillow in P30i. Spent some time trying to fix that, dozing off and waking up again. In fact, I've had on a few past nights episodes of tiny annoying leak -> waking up -> machine thinks FLs and pushes the pressure up -> even more bothered with the tiny leak and pressure. I know to keep the mask as loose as possible, but I'm thinking that the small pillows might be too small for me. I guessed what to buy based on the pillow size I used with P10, but maybe that was wrong. I bought medium pillows which should arrive some time next week, lets hope that helps. Otherwise I really like the P30i, not really ready to give up on that mask just yet.

[Miss Emerita]

I would suggest you leave the EPR on. It can help with flow limitations, hypopneas, and RERAs. Later, you might even want to talk with your provider about raising the EPR to 3. That might call for increasing your minimum a little.

Something to consider is trying to regularize your sleep schedule, even though your work schedule doesn't require it. This can help you sleep better. I would also suggest that you limit your total time in bed to 9 hours, which may help you keep a regular schedule.

This might be a good time to review the general guidelines for better sleep. I was sure they didn't apply to me, until in desperation I started trying to follow them. Lo and behold, that helped.

• Keep a consistent sleep schedule. Get up at the same time every day, even on weekends or during vacations.
• Set a bedtime that is early enough for you to get at least 7 hours of sleep.
• Don’t go to bed unless you are sleepy.
• If you don’t fall asleep after 20 minutes, get out of bed.
• Establish a relaxing bedtime routine.
• Use your bed only for sleep and sex.
• Make your bedroom quiet and relaxing. Keep the room at a comfortable, cool temperature.
• Limit exposure to bright light in the evenings.
• Turn off electronic devices at least 30 minutes before bedtime.
• Don’t eat a large meal before bedtime. If you are hungry at night, eat a light, healthy snack.
• Exercise regularly and maintain a healthy diet.
• Avoid consuming caffeine in the late afternoon or evening.
• Avoid consuming alcohol before bedtime.
• Reduce your fluid intake before bedtime.

[prkl]

I would suggest you leave the EPR on. It can help with flow limitations, hypopneas, and RERAs. Later, you might even want to talk with your provider about raising the EPR to 3. That might call for increasing your minimum a little.

Something to consider is trying to regularize your sleep schedule, even though your work schedule doesn't require it. This can help you sleep better. I would also suggest that you limit your total time in bed to 9 hours, which may help you keep a regular schedule.

Actually, earlier the EPR was at 3, but I had a feeling that my airway narrowed too much at exhalation so it was decreased. Maybe the current minimum indeed is too low for that. BTW, why is it that the larger EPR (even BiPAP) is recommended, especially with FL, UARS etc.? I would guess that the less the pressure varies the less it would be bothersome, but I'm sure there's a good explanation...

Regularizing sleep schedule, especially the wake up time, is definitely the next thing I need to focus on. It's something I've struggled with for years. During the CBTi last year it took about two months before I was somewhat functional within the first hour or two after getting out of bed. I've heard usually it takes maybe two weeks. The undertreated sleep apnea (MAD) was surely a factor back then, though. Also I was not able to keep the regular schedule up for that long afterwards. However, now that there are maybe some signs of improvement, the idea of getting out of bed early (equals 7 am for me) does not feel that overwhelming anymore. Anyway, thanks for reminding about the sleep guidelines! They sure do sound boring, but I know they also work

[Miss Emerita]

Flow limitations happen when the tissues lining your airway relax, slightly constricting the airway. This means you have to work harder to inhale. A normal flow-rate curve for easy inhalation will show a smooth, rounded curve. Flow-limited inhalation will show a flat top, a pointy peak, or a dent. Sometimes flow-limited breaths are just runty-looking.

Some people are not bothered at all by FLs, but others find that the extra effort involved in breathing is tiring over the course of a night and that FLs interfere with the normal progression of sleep stages, even causing arousals (RERAs).

EPR, aka pressure support, means that when you inhale, you get a boost in pressure. With luck, that boost will help you inhale more smoothly.

[prkl]

This week I've been feeling a bit more awake during the day. Still, I have extreme difficulties concentrating at work, but I hope that gets easier over time.

I got the medium sized pillows for the P30i yesterday, and at least last night there no longer were those tiny but annoying leaks, so it seems to be a better fit than the small one. However, I've started to wake up with chipmunk cheeks a few times a night. That's new for me, but I think it might be related to a higher minimum pressure so I expect it to go away as I get used to it. The pressure itself does not seem to bother me that much anymore, somehow it feels "softer" with the P30i compared to N30i.

Things seem to be going in the right direction at the moment, but somehow I have trouble trusting the machine and the numbers it shows. After all, two years ago the numbers also seemed pretty good, but the PSG and my subjective feelings were not.

For example, below there is a recent night with zero events.

jan212021.png (194.83 KiB) Viewed 3517 times

However, when taking a closer look (for example below) there seems to be occasional events. I'm thinking maybe they were just too short to register, but something still seems to be going on. I don't know what to think... Or maybe I'm just thinking too much here.

pos_event2_jan212021.png (186.2 KiB) Viewed 3517 times