Seeking help with long term fatigue issues / insomnia

[Aikendrum]

Hi folks,
I recently discovered this site and I've heard the community can be really helpful interpreting CPAP data and dealing with long term sleep issues. I'd love any info anyone can offer as I've been really struggling with insomnia and getting restful sleep for many year.

I'm a 45 year old man, 5' 8" (172.72cm), 185.6lb (84kg) based in Ireland. Diagnosed with sleep apnea about 15 years ago, I've been on CPAP treatment since then. My current machine is an aging Resmed Airsense 10.
Settings: max 20, min 7, epr 3 full time, start pressure 4, humidity 3, tube temp 27.7.

So essentially - while my AHI scores have always been low, I've never felt properly rested with CPAP use. In the last couple of years this has gotten worse, and I'm regularly snoring while wearing my CPAP.

I have all three kinds of insomnia (difficulty falling asleep, frequent waking up, and waking up very early). I also wake up exhausted essentially every day. I've experienced a huge amount of difficulty losing weight - and my weight has been gradually rising (from 172lb two years ago to 185lb today).

I'm on the public health system in Ireland - which means I see a specialist once a year who reads my CPAP's output, has a conversation with me about my insomnia and fatigue, does no blood tests or other physiological examinations and tells me nothing can be done. I adjust my own levels on my CPAP, as this isn't something my doctor does, and while this has helped decrease my AHI, it hasn't done anything for the other issues.

All this has had major long term life implications around employment, education etc.

I've recently had a one off windfall, and have about 4 - 5K euro I can spend on having these issues addressed. I'm trying to decide what to prioritise (a new ACPAP or BiPap, perhaps one from Lowenstein, visiting a private expert - say Vik Veer in the UK, or something else).

I'm not sure if this is relevant but I have a lot of gastro issues also - frequent upset stomach and issues with various foods - primarily gluten and dairy.

I rarely drink, but do frequently use weed to get to sleep - which isn't ideal, but is the only thing I've found to work consistently after trying everything from melatonin to ambien, benzodiazapates etc in the past, as well as a full course of CBT therapy. I also regularly use dymista to clear my airways, and had a septoplasty 2.5 years ago to repair a deviated septum.

Happy to answer any other questions or provide any other information. Incredibly appreciative of any insights anyone can give me.

I've attached Oscar results from a couple of nights ago, plus overview and other oscar data. I've attached part of this below, but also uploaded more images as well as a CSV with last 6 months of Oscar data here - https://drive.google.com/drive/folders/ ... sp=sharing

[robysue1]

Hi folks,
I recently discovered this site and I've heard the community can be really helpful interpreting CPAP data and dealing with long term sleep issues. I'd love any info anyone can offer as I've been really struggling with insomnia and getting restful sleep for many year.

As someone who started CPAP about the same time you did and who had to deal with an absolutely horrible (long term) bout of insomnia that kicked in right after I started PAPing, I have a great deal of sympathy and empathy for what you are dealing with.

So essentially - while my AHI scores have always been low, I've never felt properly rested with CPAP use.

There's a well known forum member who throughout many different user names has repeated the refrain: CPAP fixes sleep disordered breathing. But it doesn't fix bad sleep. In other words, if there's more problems with your sleep than sleep disordered breathing, all those other problems will still be around once the CPAP is managing the sleep disordered breathing problems.

In the last couple of years this has gotten worse, and I'm regularly snoring while wearing my CPAP.

Regularly snoring while wearing the CPAP is often a sign that the minimum pressure setting should be increased. You might try bumping up your minimum pressure from 7 to 8. That won't fix all of your other sleep problems, but it might help the snoring. (And your own snoring can be disruptive to your sleep.)

I haven't looked at the data in your shared google drive. But in looking at the one night of detailed data that you posted, there's nothing that immediately jumps out and says, "FIX ME!" That said, you do have a persistent leak that lasts most of that night. The leak stays well below the Resmed definition of Large Leak, but with the self-reported insomnia, it's worth asking the questions: Do you regularly have leaks like this? And if you do, do they irritate you in the sense of making it harder to fall asleep at the beginnig of the night and harder to fall back to sleep once you find yourself awake in the middle of the night?

I have all three kinds of insomnia (difficulty falling asleep, frequent waking up, and waking up very early). I also wake up exhausted essentially every day.

I suspect that on-going insomnia is more responsible for your waking up exhausted than anything "wrong" with your CPAP settings. And CPAP doesn't fix insomnia---CPAP just fixes sleep disordered breathing.

The detailed CPAP data does reflect your self-reported insomnia problem: Even looking at the overview of the whole night, I can identify at least 5 extended periods of what looks like so-called sleep-wake-junk breathing----i.e. periods where you are not sound asleep in a nice continuous real sleep. And that's more than enough SWJ to lead to feeling awful the next morning and all through the next day. So if this night's data is typical, then I think the insomnia is the more likely culprit in how you are feeling rather than less than optimal CPAP therapy.

I'm not sure if this is relevant but I have a lot of gastro issues also - frequent upset stomach and issues with various foods - primarily gluten and dairy.

Are you being treated by a doctor for any of the gastro issues? And have you ever had problems with aerophagia while using your CPAP? Aerophagia was a huge issue for me and the Aerophagia Monster and the Insomnia Monster tag teamed me to thoroughly ruin my sleep for close to a year after I first started CPAPing. (And even today I have to monitor both of them carefully---if either threatens to escape their cage, they'll both get free, and I'll have to spend weeks to months working on reining them in and pushing them back into their cages.)

Also worth noting: Some gastro issues, such as nighttime GERD can play havoc with your sleep. Any chance some of the insomnia is triggered by the stomach issues? And in particular, do you allow ample time between the last meal/snack you eat and bedtime?

I rarely drink, but do frequently use weed to get to sleep - which isn't ideal, but is the only thing I've found to work consistently after trying everything from melatonin to ambien, benzodiazapates etc in the past, as well as a full course of CBT therapy.

So you've been through the whole wringer when it comes to trying to treat the insomnia effectively.

So let's start teasing apart what you've tried and why it didn't work very well for you.

1) You currently use weed to get to sleep. On the plus side: Marijuana, particularly when it has a high concentration of CBD and a low concentration of THC, does help you get to sleep at the beginning of the night, and it's known to help some people get more stage 3 (non-REM deep) sleep. On the negative side, marijuana, particularly when it has a high concentration of THC, can lead to less REM sleep, more arousals, a longer latency to sleep, and grogginess the next day. And there's some evidence that since edibles take more time to metabolize, they may be more likely to cause grogginess the next day So you might want to consider what kind of weed you use to help you get to sleep and try to restrict your use to stuff that is lower in THC.
(Most of this information can be found at https://pmc.ncbi.nlm.nih.gov/articles/PMC7572650/)

2) You've tried a variety of standard sleep medicines in the past without much success. It is worth asking: Was the problem that things like melatonin, ambien, benzodiazzapates, etc simply didn't help you get to sleep any faster at the beginning of the night? Or were they ineffective at keeping you asleep during the night? Or did they trigger too much grogginess the next morning? Or was it a mixed bag with some of them not helping you fall alseep any faster and others causing too much grogginess the next day? Also worth asking: Have you ever tried Belsomra (suvorexant)? Yes, Belsomra is expensive and it's not yet available as a generic. But it works by "turning off wake" as opposed to "increasing sleepiness/drowsiness". When Belsomra finally became available here in the US, it was a godsend to me in my then protracted "Second War on Insomnia" since other sleep medication that I had tried had all left me feeling drowsy in the morning. (And notably, I had no problem quitting Belsomra cold turkey when the pandemic hit and my Belsomra script ran out and I couldn't reach my sleep doc because everything was closed down in NYS.)

3) You've been through a full course of CBT-Insomnia without much success. Again, it's worth asking why this didn't work for you. Was it just that it was plain too hard to implement all the required behavioral changes? And what were those behavioral changes that you were asked to make? As someone who did formal CBT-I and who had a lot of success with it, I know that it is very hard work. And it's not something that everyone can stick with specifically because it is hard, really hard. But I also know that there's a great deal of variation on what different people mean by CBT-I. So in trying to figure out what kinds of things might help you in going forward, it would be useful to know what your CBT-I involved and how long you managed to stick with it. And what made you quit.

4) You haven't really described how your multi-headed insomnia monster manifests itself on a typical night. So I'd like you to reflect a bit on some of your sleep related behavior and how the insomnia works in your bedroom on a typical night:

• Do you have a regular wake up time that you use every day, including weekends? Or do you get up at the same time for week days, but allow yourself to sleep late on weekends?
• Do you have a regular bedtime? Or do you go to bed only after you start feeling sleepy?
• How much time do you typically spend in bed each night? In other words, how long is it between when you first climb into the bed hoping to go to sleep and when you finally force yourself to get out of bed in the morning? Does this "time in bed" vary a lot from night to night?
• How long does it take you to get to sleep after you go to bed for the night?
• On a typical night, how many times do you think you wake up in the middle of the night? How long does it take you to get back to sleep once you've woken up in the middle of the night?
• How much time do you think you actually are asleep on a typical night? (Rough wild guess is fine.)
• When you are lying in bed trying to get to sleep or trying to get back to sleep, what's going through your mind? Do you spend a lot of time worrying about things when you can't get to sleep? Do you find yourself staring at the clock every few minutes and being disappointed that you are still not asleep? Do you start worrying about tomorrow and all the things you need to do and/or how tired you're going to feel? Do you entertain yourself with daydreams? Do you turn on the tv or pick up your cell phone and start browsing the internet? Do you turn the light on and start reading a book?

5) You haven't indicated if there are other things in your life that might be negatively influencing your sleep right now. If you're under a whole lot of stress from work or the family, that can naturally make it more difficult to fall asleep and stay asleep. Likewise, as silly as it sounds, no parent of an infant should expect to get high quality sleep until the infant is sleeping through the night.

Answers, even partial answers, to these kinds of questions will help us figure out what kinds of advice forum members might be able to give you that will help you teach your body to sleep well with the CPAP mask on your face. Because until you are sleeping well with the CPAP, the CPAP by itself is not going to fix all your sleep problems.

[Aikendrum]

First of all @robysue1 thank you so so much for the detailed replay. This is more information / interest than I've had from a doctor in many years. In answer to your questions...

1 - I do seem to have regular leaks - possibly because of a combination of the age of the machine / mask etc (I just replaced mask this week, so leaks have definitely reduced), but also possibly increased by the mask covers I have to wear due to latex burning my skin. The only mask I've found that doesn't do this is the Airtouch F20, but I don't have one currently - and they seem to break much more quickly than other masks. I think also, just my poor sleep in general causes a lot of tossing and turning and mask adjustment.

2 - I hadn't heard of Aerophagia but googling I don't think it's the issue here, my gastro issues run in my family and predate cpap treatment. Insomnia could well be initially caused by these - but it doesn't seem to be particularly improved by varying nighttime eating etc. But it does seem better when the gastric issues are less prominent.

I'd say that subjectively breathing issues - congestion, snoring, drooling etc seem to be more related to falling asleep than gastric issues. Although I'm aware of the nervous system links between arousal and gastric functioning, so this probably affects depth of sleep and maybe waking up.

3 - This is difficult, as weed is completely illegal here, so you can't purchase specific varieties etc. I'm kind of between a rock and a hard place with the weed, as I certainly don't want to be doing it nightly, but without it (and prior to smoking it) I can go multiple nights with zero sleep, or weeks with one or two hours a night which makes work impossible and sends my eating into a very bad spiral.

4 - My issue with all previous medications (even benzos) is that they were helpful for a period of time - from a few days to a few weeks, but insomnia reverted to baseline after that point. Ambien was most effective, but had other side effects (frequent eye infections and inflammation, also anger during the day time).

I haven't tried Belsomra, but I'll ask my GP about it ASAP!

5 - Re: CBT-I, its primarily a sleep restriction paradigm, as I already do all the sleep hygiene stuff. What happened for me is that restricting sleep just made my fatigue worse and worse, until eventually I'd get several hours of deep sleep (after several days), and then wouldn't be able to sleep the following night. This has happened every time I've tried to follow a sleep restriction schedule.

Another thing that happens is if I do start sleeping better, I get this issue where I'm snorting / drooling as I start to fall asleep. This will happen several times over an hour or so, at which point I'm wide awake and can't fall asleep. I also get crazy drooling if I try to use one of those gum shield for snoring devices, either in addition to or instead of CPAP.

6 - I do keep a regular night time / wakeup. Without any medication sleep will take anywhere from 2 hours to never occurring. With medication its pretty quick, less than 30 minutes. It's really hard to quantify wakeups, as the line between being awake and asleep are pretty blurry for me. Especially as I'm very starved of deep sleep / REM sleep. But again, without medication I'd say dozens of wakeups. With medication maybe 2 - 5 on a typical night (but I'm largely guessing). It's been several months since I had a 'good' full night of sleep. When lying awake, I never use my phone or turn on a light or anything - I generally don't worry either (although if I am stressed its significantly worse). I have aphantasia so I don't picture anything, I guess my thoughts just wander. Often I won't realise I'm awake for quite a while and my thoughts will be just looping.

Nothing out of the ordinary stressing me out currently - this is just my chronic state. I've actually recently gotten a decent full time job (which I'm certainly struggling with due to fatigue, but it's enormously reduced my financial stress).

7 - Related to that - I've read the FAQ's here and I understand the importance of having a good medical team. But my financial situation (and the way healthcare works here) makes this challenging. Basically each visit to a specialist here is several hundred euro or more (which I'm happy to spend while I have it obviously) and employers don't supply insurance, so I need to be incredibly strategic about who I visit and why. As I'm not on anything like a US 'middle class' style salary. Especially as my experience so far has been essentially zero investigative work from doctors.

[GrandmaA]

It's indefensible that your public health system won't investigate your insomnia. There are many factors that could be contributing that could be detected in bloodwork and corrected. I have had chronic insomnia since I was a child (I'm 68 now) and I've gone through a lifetime figuring out these various things and making adjustments. For example, vitamin D defiiciency: You're in Ireland. How much sunshine do you get? Not only does sun on your skin manufacture vitamin D, the light on your retina sets your sleep/wake cycle. You can't take the "normal range" in lab results for truth, because in a whole population that's chronically sun-deprived, "normal" is actually too low. What they mean is "average".

Low magnesium, low or high thyroid, low testosterone, low B12, low or high homocysteine... all of these things play a part in the neurochemistry that affects sleep. Even if you're "in range" with these things, but on the low or high end, you might tweak them to get more mid range.

The biggest corrections I made were vitamin D, B12, folate, thyroid, magnesium and sex hormones (being female mine would be a little different than for you). These made a huge difference in my life and quality of sleep (until I developed sleep apnea). But you have to be investigative and judicious. B12 for example can have the opposite effect if you take it too late in the day.

I also bought a blood sugar test kit and cut carbs, to keep my blood sugar from swinging around too much. I think that helps, I used to wake up in the middle of the night craving a snack but no more since I went low carb.

If the health system won't do a thing, would they let you pay out of pocket for a specific blood test? Pick whatever you think could be off and just test one or two things?

I mean all of this in addition to the CBT therapy others have mentioned and the issues with the CPAP, mask, etc. I am new to PAP and have no idea how to read the results or whether any tweaking of the PAP therapy would help.

[Aikendrum]

Yeah believe it or not there's actually zero treatment available on the public health system here for insomnia! Not even CBT-I. I had to get that while living in Germany a couple of years ago. We have quite a strange mix of public and private - surgery or emergency treatment is basically free or very low cost, but anything chronic that requires specialists is either a long (often multi year) wait to see a disengaged specialist, or fully out of pocket private. There are caps on monthly drug costs, but otherwise it's out of pocket, as are GP visits.

So I take magnesium, B12 and vitamin D - but I've never actually tested the levels of those. Thanks for the recommendation, I'll look into the cost of getting bloods done for vitamin levels locally. I've never even heard of homocysteine, but I definitely suspect testosterone levels or other hormonal issues (like hypothyroidism, which is super common in Ireland) might be at play.

It's indefensible that your public health system won't investigate your insomnia. There are many factors that could be contributing that could be detected in bloodwork and corrected. I have had chronic insomnia since I was a child (I'm 68 now) and I've gone through a lifetime figuring out these various things and making adjustments. For example, vitamin D defiiciency: You're in Ireland. How much sunshine do you get? Not only does sun on your skin manufacture vitamin D, the light on your retina sets your sleep/wake cycle. You can't take the "normal range" in lab results for truth, because in a whole population that's chronically sun-deprived, "normal" is actually too low. What they mean is "average".

[ozij]

1 - I do seem to have regular leaks - possibly because of a combination of the age of the machine / mask etc (I just replaced mask this week, so leaks have definitely reduced), but also possibly increased by the mask covers I have to wear due to latex burning my skin. The only mask I've found that doesn't do this is the Airtouch F20, but I don't have one currently - and they seem to break much more quickly than other masks.

• When I started CPAP, to years ago, my first mask made my face break out. I then read a recommendation to thoroughly wash masks before the first use - due to procucion residues that may be left on it. I have been doing so ever since for any mask that touches my face - no more inflamed marks on my face.
• Masks do not contain latex, they are made of silicon, and - if your face doesn't break out when you use an F20, you should do just as well "skinwise" with any other Resmed Fxxy mask.
• Assuming your mask isn't too old, and the headgear hasn't stretched out, leak culprits are the the mask fit, the cleanliness of the silicon seal, and the hose. Look for mask fitting videos by the maker.
• I would be miserably unable to sleep to I had your leaks - that's a response that varies a lot between people - but I'd say it was worth investing time and attention to your mask's fitting.
• Mask liners shouldn't cause more leaks. Take a look at Padacheek's liners that I've linked to. I needed them when I had a different type of mask - they were good.

Settings: max 20, min 7, epr 3 full time, start pressure 4, humidity 3, tube temp 27.7

On the second chart you attached, we can see your breathing disrupted - flow limitations - every time your pressure drops. Put differently: your settings let the pressure drop to where breathing disruptions occur. I agree with robysue you should try to raise the minimum.
Two more things to consider: some people's sleep is disrupted when the pressure changes -- you may want to try a constant pressure. I'd try the median you get - but only after spending a week or so at a minimum of 8. And do get rid of that "start pressure at 4". It's useless, and may actually contribute to your problems falling asleep with CPAP.

Gastric issues:
You mention they run in your family. Are you aware if the existence of non-celiac gluten sensitivity?
My stomach feels much better since I switched to a low carb diet, and am avoiding gluten containing food. This has helped my nasal congestion too.

[Aikendrum]

Ah got it - yes - I break out from any mask I've tried other than the F20 Touch (wasn't aware the regular F20 was silicon, but it makes sense, as I don't have any kind of formal latex 'allergy'). Washed or unwashed it doesn't matter - literally feels like my faces is burning after a few minutes wear, so I think it's definitely a reaction to the material unfortunately rather than anything bacterial.

Thinking about it more, I also don't think my primary issue is leaks honestly - for example I'm really exhausted today after a night sleeping with very few leaks (as I mentioned just replaced part of my mask and headgear), large leak last night was 0.05% - See attached image (you can also see I tried to nap earlier - which I basically never do, but I was deeply exhausted yesterday and feeling desperate)=.

Really appreciate the padacheek recommendation also, but its cost is more than double with delivery to Ireland so they're not really affordable.

> On the second chart you attached, we can see your breathing disrupted - flow limitations - every time your pressure drops. Put differently: your settings let the pressure drop to where breathing disruptions occur. I agree with robysue you should try to raise the minimum.
> Two more things to consider: some people's sleep is disrupted when the pressure changes -- you may want to try a constant pressure. I'd try the median you get - but only after spending a week or so at a minimum of 8. And do get rid of that "start pressure at 4". It's useless, and may actually contribute to your problems falling asleep with CPAP.

This is super useful. I'll try with a higher minimum and then later a constant pressure.

>You mention they run in your family. Are you aware if the existence of non-celiac gluten sensitivity?

I am, and I avoid all gluten pretty religiously, and I try to avoid dairy also (though less sucessfully). I'm not sure I have the fortitude to do low carb though!

[ozij]

Just to be clear:
When the machine reports "Larg Leaks" that only means "Leaks too large for me to understand what's going on and give proper therapy."
Human beings' sleep can be disrupted by leaks that don't disturb the machine at all.

Please hide the calendar in your chart.

[Aikendrum]

Just to be clear:
When the machine reports "Larg Leaks" that only means "Leaks too large for me to understand what's going on and give proper therapy."
Human beings' sleep can be disrupted by leaks that don't disturb the machine at all.

Please hide the calendar in your chart.

Here are the last two days with the dates hidden. Something that happens to me often is that I awake very suddenly a couple of hours before I need to get up. This happened last night, and you can see it on my chart with a strange gap at 5:40 AM. As though the machine was off, but it wasn't. I wonder if this could be an issue with the machine?

[ozij]

You hid a lot of important info in the last two charts.
There's a little triangle near the calendar, if you touch it, the calendar itself disappears.

[ozij]

How-to-post-images-for-review

[Aikendrum]

How-to-post-images-for-review

Apologies, here they are again with calendar hidden.

[GrandmaA]

Yeah believe it or not there's actually zero treatment available on the public health system here for insomnia! Not even CBT-I. I had to get that while living in Germany a couple of years ago. We have quite a strange mix of public and private - surgery or emergency treatment is basically free or very low cost, but anything chronic that requires specialists is either a long (often multi year) wait to see a disengaged specialist, or fully out of pocket private. There are caps on monthly drug costs, but otherwise it's out of pocket, as are GP visits.

So I take magnesium, B12 and vitamin D - but I've never actually tested the levels of those. Thanks for the recommendation, I'll look into the cost of getting bloods done for vitamin levels locally. I've never even heard of homocysteine, but I definitely suspect testosterone levels or other hormonal issues (like hypothyroidism, which is super common in Ireland) might be at play.

High homocysteine is related to metabolic syndrome and taking folate will bring it down. Sounds like you have a lot of the nutrients covered.

You said you use the F20 AirTouch? I use the N20 which is the same memory foam I think, and I have the same burning sensation. I tried the Pad-a-Cheek but now I have severe allergy symptoms. I don't know what's going on but I suspect it's the PAP somehow. Don't know if it's the tubing, the mask, the Pad-a-Cheek or what. It's not time to change the filter but maybe I'll do that anyway. It's always something with this machine, I don't know if I'll ever get it all sorted out.