Is CPAP making things worse for me?

[jedimark]

Sorry, not something cheerful. It's depressive rant time.. 9 months on CPAP and I still feel like total crap.

I'm averaging around 8 hours sleep.. It's in consecutive chunks, but not always consistent bedtimes, which I know isn't helping. (it's 3am and the insomnia bug has bitten me again)

I always feel I want to sleep more, but most days, even though I've got the opportunity, for some reason I just can't bring myself to do it.
My brains constantly locked in hyper-drive..

Last months average AHI was 6.30, the highest was 26.63 on the 1st of Dec.. (My original untreated PSG was only 23)

The P.B. average was 8.05%, it peaked for 4 days this last week with an averaging 22.06%, the highest of them 27.67%.. And that's just the flagged areas.. A lot of the bits outside the green look the same, and the PRS1's crappy PB flagging algorithm isn't detecting them.

Doctor's keep telling me these numbers don't mean anything. How bad do things have to be for them to acknowledge something's not right?
I can't get a referral to a real sleep doc.. They keep sending me to general specialists/etc, who totally waste my time telling me things I already know. The latest one I was referred to, I can't get in to see him until April next year..

Waking up each morning with a headache that lasts until I go to sleep at night, and a constant fog that's nothing short of evil..

I'm tired, frustrated, and cranky at everyone around me.. The slightest noises set me off, they often feel like little hits to the head with a hammer.. I have an eight y.o. daughter who through no fault of her own drives me insane.. Probably snapping at my wife equally as much..

Trying to lose a little weight.. (BMI ~31) not easy when even slightest exercise sends me into AF, or at the very least total exhaustion. I've got an appointment with a dietitian this week, so hopefully can make some progress. Have a treadmill test coming up this week too for the heart stuff.

I'm forgetting so much crud it's not funny.. Totally humiliated myself at an interview a week or so ago by repeated drawing a complete blank on things I've done thousands of times over. I've never felt so dumb in my life.. I think I was seriously kidding myself into believing I could function at a higher than base level..

Gah.. What's it like to function like a normal human being? I've seem to have forgotten..

If anyone has been in a situation like this, and has found their way out of it, or at least improve things health wise, I'd love to hear your story..
I need the encouragement..

Anyone know of a good sleep specialist in south-east Queensland?

[cflame1]

Have you ready robysue's insomnia write-ups? Tried her suggestions?

[RocketGirl]

I'm so sorry to hear you're having such troubles. I'm a newbie with CPAP and have seen some difference already - to go through all this masking up stuff and not feel better would be awfully discouraging.

Being as I'm so new to CPAP I'll let others comment on that - I'll just offer a couple thoughts on the brain fog and insomnia since I am way too experienced with those

I think you have to get the insomnia under some control, and that may mean making some changes in your awake-hours as well as sleep hours. Only you will know what fits your situation, but here's what worked for me.

In my case, I had to move into the spare room so that my then-husband's snoring wouldn't continually wake me. I also had to acknowledge that my lifelong habit of watching the evening news and reading the paper before bed were jazzing my brain up with too many world issues and worries that I couldn't put down, and they'd beget other genuine worries like work, my son's health, etc. It really helped not to go to bed with fresh images of fire and war in my head.

The other thing was get some exercise every day, without fail, no matter what. Your AF prevents you from doing much, and I understand that. I have damaged knees and neck from a bad accident, so all I could manage at first was gentle stretching, but even that helped.

When you wake up middle of the night, maybe consider getting up and quietly puttering about for a bit, then go back to bed when you feel sleepy again (rather than lie in bed and fret about not being asleep).

For the daytime brain fog, my heart really goes out to you on that one because I've had it, and it often tries to come back. It's maddening and scary. I compensated by becoming a devoted note-taker and list-fiend. I keep a little book of notes from meetings, with actions clearly marked. I keep lists of things that need to be done, both work and home. For me, lists really help lift the burden of the fog, and it only takes a few minutes a day once you get used to it. For meetings and interviews, I would suggest making handwritten notes ahead of time - list the things that you want to point out, as well as the questions you want to ask. Other people do this, so it won't look odd if you do it too.

Once things are on a list, your brain doesn't have to keep them in memory, and that frees memory for other things (like thinking and being happier). Sorry for rambling on so, and I hope you get some answers on the medical side of things soon.

[robysue]

Sorry, not something cheerful. It's depressive rant time.. 9 months on CPAP and I still feel like total crap.

Rant away Jedimark. I'd be ranting too if I felt as bad as you do. But do keep in mind how grateful we are that you found us and how much we appreciate your hard work on SleepyHead.

Now for some suggestions that may help get you through the current funk in one piece.

First and foremost, there seems to be a lot going on: In no particular order:

• insomnia
• AHI bouncing around and at its worst no better (or worse) than the PSG's AHI
• Constant, chronic headache
• brain fog AND brain "constantly locked in hyper-drive" AND feeling tremendously forgetful
• severe sensitivity to noise
• irritable, bad mood, snappy at loved ones
• trying to loose weight
• but exercise triggers a-fib and/or exhaustion

And add to that:

• A doc who won't look at (or trust) the machine's data (big negative) and the doc is not even a real sleep doc from the sounds of it
• averaging around 8 hours of sleep (sounds pretty decent to me, but then I seldom get more than 6.5 hours of sleep) but it's in chunks and consistent bedtimes are a problem
• an appointment with a dietician is set up
• a treadmill test for the heart is scheduled

So first and foremost, it appears to me that there is a real chance that something in addition to OSA is likely contributing to that awful quality of life that you are currently enduring (rather than living). And you seem to realize that and have made some appropriate appointments with the dietician and for the treadmill test.

After all, if there's something wrong with the heart, that's got to be treated along with the OSA before you are likely to feel better. If it's been a while since your last general physical exam, you might want to schedule on of them too. Have every checked out: Make sure they run blood tests for diabetes and check your thyroid and vitamin D and vitamin B(s) levels. Have a complete blood count done. Since you're a guy, you might want them to check your testosterone levels too. And consider other potential causes for the chronic headaches beyond the OSA: The sensitivity to noise raises the question about whether some of your headache problem might be migraine-related. And during the physical exam, talk about all your symptoms, but be sure YOU don't automatically attribute them all to the OSA and the current not-yet-optimized PAP therapy. The idea is to try to get the doc do some thinking: At best, he might come up with plausible non-OSA causes (and treatments) for some of your on-going problems. More realistically, it might get him to think, "Hey, I wonder if the CPAP is actually working" as a way to explain your misery. This approach might sound cynical, but at least here in the states, it seems to be the case that many docs routinely discount whatever a patient says about what's triggering a potential problem even if after giving it careful thought the patient was right.

Meeting with the dietician is a great idea---providing you follow through and start eating a healthier diet. Get the family to provide you with real support here: You'll undoubtedly be told to watch the fat and sugar. The easiest way to eliminate fat and sugar from junk food in the diet is to just not buy it in the first place. When hubby was told he had elevated cholesterol several years ago, we simply quit buying the chips and ice cream at the grocery store. (He had a bad habit of eating far more of them than he thought he was eating.)

Next, the brain fog, the brain in hyper-drive, and the insomnia are likely all interrelated. And may also be strongly correlated with the numbers you're seeing off the machine each morning. So you may be in a negative feedback loop:

• Brain kicks into overdrive at bed time, which triggers the insomnia and the nighttime worries, which makes it difficult to sleep well and which also aggravates the tendency to over focus on the numbers come morning, which triggers the daytime worries and the bad mood, which aggravates the exhaustion and the brain fog, which then (inexplicably) leads the brain to go into overdrive at bedtime, which ....

So you need a way of breaking that negative feedback loop. And while I've not dealt with everything else that you are currently facing, I did spend many, many months in my own negative feedback loop of insomnia, brain in hyper-drive (always at bedtime), brain fog (during the day), snarky, dark mood towards loved ones and co-workers, and anger/angst about the machine and its data all conspiring with my chronic migraines to make me a real basket case and royal pain in the you-know-where to live with. In my case, what has bought me time (and some energy) to deal with a Gordian knot of my own problems has been getting the migraines under control AND, for the rest of the negative feedback loop issues, yoga---including a tiny bit of meditation and pretty serious conscious work on both breathing and relaxation. Learning how to clear an overactive mind that won't shut up at bedtime is difficult, but it can be done. Learning how to let go of worries (including worries about the machine's data) is also not easy, but can be done. And using techniques from yoga to help me focus on breathing and relaxation does help me get past letting the numbers I see in morning determine whether I will feel lousy or good during the day. I'll be honest: I'm still in the active, learning-how-to-do-this "break the feedback loop" stage: I'm still up at 3:00AM more often than I'd like to be and days with inflated AHIs still catch me mentally before they have a chance to catch me physically. But in the past 5--6 months since I started doing the serious work on focused breathing and relaxation, I've gotten a whole lot less moody and the number of 3:00AM nights has started to drop. Along with it, I am now better equipped to try to shut down that overactive brain when it threatens to keep me up all night long. And so while I still have my bad days, they don't typically turn into bad weeks and months.

Finally, I want to address this one in particular:

Last months average AHI was 6.30, the highest was 26.63 on the 1st of Dec.. (My original untreated PSG was only 23)

The P.B. average was 8.05%, it peaked for 4 days this last week with an averaging 22.06%, the highest of them 27.67%.. And that's just the flagged areas.. A lot of the bits outside the green look the same, and the PRS1's crappy PB flagging algorithm isn't detecting them.

Doctor's keep telling me these numbers don't mean anything. How bad do things have to be for them to acknowledge something's not right?

It is sadly ironic that doctors don't trust the machines in our bedrooms to provide them with useful data. I can't help but wonder, did docs treating diabetes go through an extended period of not trusting home blood glucose monitoring machines too?

And this next idea seems counter intuitive---particularly to a data-driven person like yourself: But think about keeping a log that focuses on how miserable you are instead of on the machine's data. Take a standard sleep journal format for insomnia (like the one here) and add in a daytime log to write down just how lousy you feel. The day time part of the journal probably needs the following things measured in a purely subjective fashion of your own choosing:

• A snarky index. How often did you snap at somebody (and wish you hadn't)
• A headache index. Characterize both the pain level AND where it hurts. Make a note if noise or some other sensory stimulus set it off or amplified it.
• An exhaustion index. Just how tired are you physically?
• A brain fog index. How much brain fog and when was it worst?
• A brain on hyper-drive index. When did the hyper-drive kick in? What were you doing when you noticed it kicking in?
• Exercise/physical activity index. How active did you manage to be during the day time?
• Dietary index. How closely did you adhere to what the dietician has told you that you need to be doing as far as diet goes?

And the next time that you go in to talk to a doc about your sleep related problems, focus on your daytime functioning symptoms as detailed by your (handwritten?) log. (You could also causally hand over the data from the machine at the same time if you want to.) Once you have all that journal evidence of just how bad your daytime functioning remains, you have the perfect reason for asking the direct question: Do you think the CPAP therapy might not be working well enough? What could we do tweak the CPAP therapy to help with my daytime functioning?

Best of luck JediMark.

[RocketGirl]

One additional afterthought, prompted by robysue's highlighting that your doctor is dismissive of your concerns: my doctor, who I actually like quite a lot, also seemed to simply not "get" how my constant fatigue and other issues were impacting my life, even though I expressed it at every visit. I couldn't even get him to say the words "sleep study."

What turned that around was when I went to him after a near miss, and said: "Today I came close to falling asleep at the wheel. If something doesn't change with the way I feel, sooner or later I will fall asleep on the highway, and I could kill someone in the process."

That got his attention but good.

[jedimark]

Have you ready robysue's insomnia write-ups? Tried her suggestions?

I have indeeed.. She was very helpful with my first bout..

I had a little chemical assistance last time to reset, rotating each night for a couple of weeks through a different type, and that seemed to work..

[poppi2]

I'll second robysue's compliment about your great work on SleepyHead. Good luck on solving your sleep problems. Earl

[jedimark]

@robysue..

Thank you for taking the time to write that, you've given me a lot of food for thought.
I haven't been able to order my thoughts well lately, (probably mostly due to being slightly depressed over all this I guess,) so hearing things summarized helps me a lot.

It's a much more tolerable experience facing something that I know others are dealing with/dealt with too.

You seem to have an action plan, which is something I've lacking and need to start thinking seriously about..
I've dealt with a lot of my issues through programming.. and it doesn't always work.. (just like my code.. )

You probably already know I'm going to "slightly misinterpret" your words on your last suggestion, only because I find the concept of pen and paper challenging.
Well, that and I've got the stage it's really easy for me to add stuff like this in sleepyhead now.

[Pugsy]

You have an oximeter? What has it been saying lately?
When I first started therapy my AHI was 8 to 10 and I felt like total crap. Pretty much like I did prior to starting on the machine. I don't know why doctors don't want to listen about how we feel but they seem to think that all it takes is the titration pressure and we should feel like a new person.

Those reports at SleepyHead page, are those yours? What all have you tried to improve them?

[DoriC]

Jedimark, picking up on something RocketGirl said about TV and reading newspapers close to bedtime,I'm wondering when it is you're doing your amazing work on Sleepyhead and other stuff? (I finally DL the other day and very proud of myself and how easy it was to do!. The data is great). Are you working late into the night? Perhaps you could give yourself some down time on those projects ? .

[robysue]

You seem to have an action plan, which is something I've lacking and need to start thinking seriously about..

Yep, I would say that I now have an action plan. But I most certainly didn't come up with the idea that I needed one all by myself. It was suggested by Sleeping Ugly and NotMuffy back in April in this thread. I was about 7 months into therapy at that point and feeling pretty crappy on some days and ok on others and even occasionally feeling good. But it still took me a month or more to really digest what they were urging me to do and get a workable first draft of a "day report" to fill in each night before I went to bed with the variables that I needed to track. My day report has gone through several revisions as I better learned what things really seemed to matter and what ones did not.

So start doing the thinking needed to design an action plan that makes sense to you and start taking a stab at gathering the appropriate non-machine based data needed to refine and implement your action plan. You can always revise the data set later on if you find a particular item is of no use or you begin to suspect something not on your list is important.

You probably already know I'm going to "slightly misinterpret" your words on your last suggestion, only because I find the concept of pen and paper challenging.
Well, that and I've got the stage it's really easy for me to add stuff like this in sleepyhead now.

No misinterpretation at all. I too absolutely hate writing things down with pencil and paper.

But during the darkest days of my war on insomnia, I noticed that my handwritten stuff is what seemed to finally get the point across to the PA treating me that my insomnia problem was NOT being caused by obsessing with the machine data and was, in fact, based on my very real inability to get to sleep with mask on my nose due to some pretty severe sensory overload and aerophagia issues.

Now that things are a lot more stable? About six or eight weeks ago I converted all my various logs into one easy to fill in form in a Microsoft works data base that gives me room for everything I currently want to track. Since it's easy for you to add it to SleepyHead, sure, do that. Just try to separate it out physically from the machine data when you give a copy of your misery log to the doc.

[archangle]

A few random thoughts.

Have you tried tinkering with your pressure?

Don't forget the possibility of other medical problems. Unfortunately, doctors tend to see the apnea boogeyman (or some other boogeyman) and blame everything on that.

Insomnia is nothing to lose sleep over. Sometimes, worrying about the insomnia makes it a lot worse.

I know you're sleeping in the recliner. I'm set up to watch TV, compute or sleep in the recliner. Sometimes if I can't sleep, I'll mask up anyway and see if I can doze off while watching TV. Or if I'm trying to sleep, and can't, I'll turn on the computer display, look at something on the web for a few minutes and then go back to not sleeping without ever unmasking.

[2 B Sleeping Soundly]

-deleted-

[jedimark]

Jedimark, picking up on something RocketGirl said about TV and reading newspapers close to bedtime,I'm wondering when it is you're doing your amazing work on Sleepyhead and other stuff? (I finally DL the other day and very proud of myself and how easy it was to do!. The data is great). Are you working late into the night? Perhaps you could give yourself some down time on those projects ? .

Dori, I think that will definitely have a lot to do with it..

The problem is if I let myself stop, I quickly forget how to do stuff, and it's an uphill battle getting back into the swing of things.. Entire programming languages have vanished from my memory banks..

I only really work on SleepyHead when I'm higher functioning.. Most of the time it's usually just bits and pieces here and there.. My best work is usually done after 9pm.. mostly because that's when it gets quiet around here. :/

Sleep Hygiene went out the window for me with the advent of the notebook computer. Laying in a dark room trying (and failing) to switch off for over an hour frustrates me, so I pick up the notebook and code or respond to emails.. not exactly helping with the cycle of insomnia..

[robysue]

I don't know why doctors don't want to listen about how we feel but they seem to think that all it takes is the titration pressure and we should feel like a new person.

My personal theory? It interferes with the doc is god complex when a doc has to deal with a patient that's not responding as expected to a prescribed therapy that the doc has never actually do his/herself.

And I also think this explains why way too many docs don't really want to deal with patients who are well educated and knowledgeable about their disease/disorder.