Is CPAP making things worse for me?

[jedimark]

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.

Thanks RocketGirl.. I'll keep that stuff in mind next time I talk to my doc.. Mostly I avoid driving because I know I'm gonna kill someone if I do.

Doc's are trained to treat the patient and not the numbers.. A foggy patient isn't always the best at conveying how crap they feel to a doctor.. I think it's easy to assume that we look as crap as we feel when talking to the doc.. I wish mine knew it was a challenge enough some days just to walk into the place.. :-/

[jedimark]

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?

I don't get a lot of desaturations, probably 5-10 a night.. I rarely go below 90%.. usually they stop at 92/93% and are around 30 seconds long.. I've had a few of them for over 2/3 minutes straight.

I've only really just got SleepyHead now up to the stage were oximetry can be compared against events, so hopefully I can start collecting a bit more data..
(By the way, has anyone tried USB cable importing from a CMS50E with the new version yet? My usual tester of oximetry things is away..)

Most of those reports are mine..

I've tinkered.. I try not to change stuff too often. Most of the time I've been using APAP with a reasonably tight range of 7-9 (4/5 months, avg ahi 5.02) I upped it to 8-14 for a couple of months (average ahi 4.39). I stopped about a month ago to remove the variance and set the pressure to 10 (avg ahi 5.43, PB went nuts).. My pressure for the past few days has been set back to my titration pressure of 7, (average ahi of 11, with rediculous peaks, and feel extra crap, so clearly that's not working)..

PB on straight CPAP is much worse than APAP, the entire time on APAP averaged 2.08%.. on CPAP it was 10% and progressively creeps up.

Going on that I had best luck at 8-14 APAP.

[Pugsy]

Well.....it is obvious that your therapy is not optimal and while we can probably point a finger at sleep habits for some of your crappy feeling, I don't think that is the entire problem. Probably like a lot of us...combination of things. Problem being what to do with your therapy to at least get it optimal on paper so you can have a chance at feeling better and seeing if sleep habits improvements also help.

I just looked at the one daily report you have at your website. Straight CPAP at 10. AHI quite decent with mostly Hyponeas but a lot of PB. Wonder what APAP with a little higher minimum (like 9) would do? Keep a tight range with 12 or 13 max?? Have you tried something like that?

[archangle]

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."

Be careful. The doctor may report you to the motor vehicle department, and then you will have another uncaring incompetent Nazi government bureaucracy to deal with, along with the uncaring incompetent medical bureaucracy.

[RocketGirl]

Archangle, I was aware of that going in - but I was desperate and, truth be told, a little panicky. I'd already been missing a lot of work because I didn't feel safe to drive, and if something didn't change, I was going to have to consider the consequences of early retirement. I follow pilots' rules - if I know I'm not "fit to fly." I ground myself, period.

However, by phrasing it as bluntly as I did, I not only got through to him - I also made it my doctor's problem as well as mine.

I've been thinking about doctors. Exhaustion is part of the hazing ritual called medical residency, so I'd be willing to bet that they mostly think they know what crushing fatigue is like, and that it's really no big deal. We all use our own experiences as yardsticks - what else have we got - so somehow, when talking to a doctor about things like fatigue, we have to break through that to make them see that what we're going through is way beyond normal healthy experience.

For me in this case, once my doctor genuinely understood that this was beyond normal and that I was staring down the prospect of losing my job because of it, he got moving very quickly to make things happen.

[GumbyCT]

Doc's are trained to treat the patient and not the numbers.. A foggy patient isn't always the best at conveying how crap they feel to a doctor.

I found it helpful to write my questions in a notebook BEFORE I go into the docs office. They know you are serious when you open a full-size notebook and go down your list of questions. As things or questions pop-up between appt's I would write them in the notebook BEFORE I forgot. Maybe re-write them before you go in (if necessary) so they flow somewhat or make sense.

Be sure to leave room under each question for the docs response and let the doc wait while you write.

Don't let the doc leave until you get thru your list of questions. It also helps when you get home and try to remember what the doc said.

Mark, any sign of leg movements in your original PSG?

Mark - we are Rootin for ya buddy

[DoriC]

OT a bit but I'm reminded of a time when my son(The Doctor) was visiting and sound asleep in the next room. His cell phone rang about 4AM (woke me up ) and I heard him answer ,he listened for awhile, sounded wide awake, gave explicit and involved admitting orders to the ER physician, hang up and he was asleep again immediately. That ended my sleep for the night. The next morning he told me had slept well and the interruption didn't bother him. I wonder if after all those grueling training years when they were on call and would be awakened many times during the night and had to be alert in a second, Drs have a different(or indifferent) view of what poor sleep can do to a person?

[M.D.Hosehead]

Bumping this thread, because I'd like to know how things are going for you.

Your efforts on SleepyHead have helped so many of us, and I hope others here will take another look at your situation.

It's been mentioned before, but have you had a thorough lab workup? It would be a shame if you continued to suffer while something correctable like thyroid, B12, blood count Vitamin D, blood sugar hadn't been attended to.

You haven't told us what meds you take, but you should look up their possible side effects; and check for possible interactions here:

http://reference.medscape.com/drug-interactionchecker

How much of the time are you in AFib? Is it being treated?

Has your doctor done a basic neurological exam? You should have one. Has your doctor reviewed depressive symptoms regarding whether antidepressants might help?

I think the idea of organizing your symptoms and experiences in writing before going to the doctor is good.

You probably shouldn't go to your doctor alone if you're cognitively impaired. You need an advocate present who knows what questions you need answered, will ask for clarifications you may not think of, can redirect the conversation if it goes off on a tangent, and will help you remember everything that happened.

[snoringshrink]

I strongly agree with M.D.Hosehead's recommendations vis a vis a neurological workup along with a behavioral health consultation. There's a lot of evidence to suggest that chronic medical conditions can contribute to depression, a problem that can be every bit as significant as OSA. In fact, I work with several clients whose mood issues are directly related to the physiological and psychological stresses of their chronic medical conditions. I'll certainly keep you in my thoughts and prayers.

By the way, your work with SleepyHead is top-notch. I wasn't able to load ResScan on my system but, thanks to you, I am able to monitor my progress in dealing with my sleep issues.

I really hope that everything works out for you.

[jedimark]

Bumping this thread, because I'd like to know how things are going for you.

Your efforts on SleepyHead have helped so many of us, and I hope others here will take another look at your situation.

It's been mentioned before, but have you had a thorough lab workup? It would be a shame if you continued to suffer while something correctable like thyroid, B12, blood count Vitamin D, blood sugar hadn't been attended to.

You haven't told us what meds you take, but you should look up their possible side effects; and check for possible interactions here:

http://reference.medscape.com/drug-interactionchecker

How much of the time are you in AFib? Is it being treated?

Has your doctor done a basic neurological exam? You should have one. Has your doctor reviewed depressive symptoms regarding whether antidepressants might help?

I think the idea of organizing your symptoms and experiences in writing before going to the doctor is good.

You probably shouldn't go to your doctor alone if you're cognitively impaired. You need an advocate present who knows what questions you need answered, will ask for clarifications you may not think of, can redirect the conversation if it goes off on a tangent, and will help you remember everything that happened.

Thanks Hosehead,

They've checked my bloods for all this stuff quite a few times.. Everything keeps coming up normal.. The only things that's ever turned up are a few signs of the usual set of minor viral stuff in the past.. (Ross river, Barma Forrest, ebstein barr, etc..)

I just take Pariet for G.o.r.d, and low dose aspirin for AF stuff. I also use a nasal spray occasionally for when I'm stuffed up.. Though mostly just saline now..

I only seem to go into AF after exertion.. I did a treadmill test, but it didn't trigger it.. I couldn't get fully up to target heart-rate, as I got dizzy as all hell and more of a headache over 170bpm.. It lasted for an hour or so afterwards.. (Half an hour afterwards, on getting home, I sat down in my couch and rested with the Oximeter on for 20 minutes.. My SPO2 kept dropping down to just below 90, while awake.. Probably just a sign I'm unfit.)

Haven't seen a neurologist yet.. Getting referrals out of my doctor is like pulling teeth, and I don't have private health insurance, which only complicates matters.

They've trialled several types of anti-depressants in the past, trying to treat the fatigue/fog.. They didn't do anything except for making me even more tired put and put on weight. Being officially a little depressed now they'd probably help a little now.. Then again, coding is working quite well at the moment.

I usually have my wife with me at the docs.. She doesn't always speak up though.. :/

I finally tried the old mouth taping trick last night.. Didn't really change all that much, as my leaks aren't all that bad to begin with. AHI was 4.75, which is ok for me. But I only got just under 5-6 hrs of mask time.

On the positive side, Yesterday, I went into one of the local pharamacies that sells CPAP equipment, and found out they actually have a service to look over CPAP data (for my actual brand of machines, one was right in front of me in the display.). The lady suggested that since I have a full auto machine, and haven't been getting relief, I should change my pressures to APAP, with a higher maximum pressure.. I nearly fell over when she said it.. I also got to tell her about SleepyHead. She totally made my day.

[JointPain]

On the positive side, Yesterday, I went into one of the local pharamacies that sells CPAP equipment, and found out they actually have a service to look over CPAP data (for my actual brand of machines, one was right in front of me in the display.). The lady suggested that since I have a full auto machine, and haven't been getting relief, I should change my pressures to APAP, with a higher maximum pressure.. I nearly fell over when she said it.. I also got to tell her about SleepyHead. She totally made my day.

Congratulations on that!

Thanks again for all of the work you've done on Sleepyhead. It's much appreciated. I hope you can get your problems fixed quickly.

I would let your data suggest whether to increase your minimum or maximum pressure. If your pressure rarely gets near to the minimum and increases rapidly whenever it does, your current minimum might be too low. If it's near the maximum most of the night, and you're still getting lots of H and OA events at those pressures, your current maximum might be too low. Probably best to only change one at a time.

I assume you've minimized your coffee and caffeine intake, especially after lunch. (I found coffee, even decaf, predisposed me to migraines. I haven't had one since I quit taking any coffee.)

Perhaps a cup of camomile tea before bed would help.

I find doing some medium for me sudoku puzzles on paper (specifically, in a book) after I mask up helps me stop thinking about stuff until I'm ready to sleep, which is not usually very long. (The challenge is finding puzzles at just the right level of difficulty. My current book of "difficult" puzzles is about as challenging as taking candy from a baby.)

I think CPAP therapy can cause / lead to consequential problems that are completely unrelated to apneas, pressures, insomnia etc. At the moment I'm having pain sensations in my hands that I *think* (and hope) are related to poor sleeping posture and my sleeping better and not moving around so much under therapy (I have not been able to get an appointment to see a doc yet). So, I would also support making a list of all daytime symptoms and getting a diagnosis for those. CPAP might be either directly or indirectly implicated, or not.

Best wishes.