CPAP creating the exact opposite of what I assumed

[js_insf]

Hello everyone.

Am I alone in that CPAP therapy is having the OPPOSITE effect that I thought it would? I've been a lifelong horrific snorer, and finally decided to get a sleep test. I knew I was likely to have sleep apnea. My father has it, and people have said that it sounds like I'm gasping for air while sleeping. I never had a big problem with daytime sleepyness or fatigue, but I certainly never felt rested in the morning. And, yes, I was diagnosed with severe sleep apnea.

I've been using CPAP for seven weeks. I thought getting used to the nose pillows would be the hard part, but after 2-3 days it was no big deal, at least in terms of being able to fall asleep.

However, I have a strong "burned out" feeling ALL of the time. I am extremely tired during the day. Any kind of exercise, even walking, creates strong fatigue. I'm doing things like taking the elevator one floor to avoid exertion. I wake up with an intense foggy feeling in my head, that doesn't go away for at least an hour. Sometimes I'll get lucky and get seven or so hours of sleep, but usually much less than that. I'm frequently waking up at 3 or 4 in the morning, unable to go back to sleep.

Worse, two people now have told me that I seem "confused." I've noticed that it's more difficult for me to express complex thoughts, and I trail off in the middle of sentences. I'm having some memory problems. I'm extremely detail-oriented at work, and I've been forgetting simple things lately. Making mistakes I've never made. I'm isolating more.

Basically, I just feel bad, almost all of the time. I certainly never felt great (I suffer from depression), but I sure didn't expect to feel worse.

(I won't even mention the problems I've had with my equipment provider or my doctor. Suffice to say it's been a joke. OK, I can't resist sharing one anecdote. After being on therapy for a month, I went to see the doctor, so she could review my data. I handed over my SD card, and she said the card was defective, and she couldn't retrieve any detailed data. I thought, great, a month of this and we know nothing! But something didn't seem right, so I downloaded the software for my machine and bought a $5 SD card reader. In about 60 seconds, I was easily able to download my data, including all of the detail she said wasn't there. I don't know how to interpret it, but it's there)

Has anyone else out there had any similar experience? I got my hopes up so high, hearing stories of people whose lives were vastly improved after starting therapy. My dad's life completely changed for the better. And mine has, so far, changed for the worse...

I hate to be a bummer, but I would love to hear from anyone with any advice or information.

Thank you.

[elena88]

Oh dear,
when I read the title of our thread, I was hoping that you assumed your cpap adventure was going to be a nightmare and

it turned out all for the better.. Im sorry that is not the case..

dont worry about feeling like your a bummer.. I have been a bummer for seven months, and these kind folks still talk to me and try to help me..


The key to figureing out what is wrong is in your data, and your symptoms, and making sure your symptoms are only related to your apnea

problems and not some other health issue..

I was also never tired before cpap, but became exhausted and wiped out on it.. experienced many of the symptoms you stated.. I simply went from
an energetic high functioning person to a confused blob who could do nothing..

I am still on the quest to discover what has gone wrong, but so far I found out, that Im supposed to have a pressure between eight and ten, but
I tried some experiements, and I only need four cm of pressure on my side and back.. so I feel I was completely misdiagnosed with severe apnea,
when I only have it on my back.. so the high pressures kept me from sleeping, and I literally had the exact opposite effect of most everyone else..

I feel great if I dont use my apap and sleep on my side or stomach.. I dont want to tell you to go without it for one night, but we had a power failure,
and I slept without it, so that is how I knew it was really disturbing me, I felt like a millon bucks when I slept without it..
Most people go and get a really good check up to see if anything else is causing the trouble, but for now, you might try to do some experimenting
with your machine, which is always nice if you have your doctors blessing, as I did..

do you need instructions on how to get some of your graphs up for us? If we could see what was going on with your data, there be an answer right there..
do you know if you are having leak issues?
do you sleep on your back or side or tummy? or all over?
Do you know what your ahi is on the stats page, your leak rate, and flow limitation?
what is your pressure? It could be something very simple, you may have the wrong pressure, I sure did..
this can be an easy fix, dont get discouraged..

[Janknitz]

Your doctor sounds useless, but since you can download the data (do you have the software to read it?), I'm betting you can take a look at it and see if it shows what might be going on. If you are smart enough to be able to download the data, you can learn to read it, too.

If you can get raw data but not the charts and such, you need the software. There's someone here who can PM you about how to get the software, but I can't remember who --someone else will read this and tell you, I'm sure.

My first guess is that while you may feel you are doing well with the nasal pillows, you may be mouth-breathing. It's possible to do this and not realize it when you are deeply asleep, and that will take away all of the benefits of using CPAP since your airway can't be maintained if the air pressure is flowing out of your mouth.

After that it gets trickier, but not impossible, to see what may be going on from the data. So let's start with that.

The good thing is you are sleeping well with CPAP and the mask--that's 75% of the battle right there. Now we just need to make it EFFECTIVE for you. Too bad your doctor didn't have a clue.

[kteague]

Yes, what a shame to have data but have your provider not know how to access it. Good thing you didn't stop there. I agree with the others that looking at your data will be important to troubleshooting. And that mouth breathing can wreck treatment. Some things it will be helpful for you to list is data regarding your pressure, AI, HI, AHI, and Leaks for starters. A step at a time, and things should become clearer.

When I first began CPAP I got dramatically worse. My doctor then nor the RT were able to help me. A couple nights here and I was on my way to optimizing my treatment. Had my doctor cared enough to give me a data capable machine (and know what to do with the data) I could have avoided several months of misery. Hope 7 weeks is the end of that for you. Best wishes.

Kathy

[Julie]

You can test if you're losing Cpap air through mouth breathing by getting some 3M micropore tape (any drugstore) and wearing about 2 inches long of it horizontally x 1-2" wide over your mouth. If you feel more rested after a day or two, you have the answer - not tape, but most likely a full face mask like so many of us graduate to after finding the nasal ones don't work.

[borgready]

You sound like me. I am just starting to push hard to wear it and get the benefits from it. I can't get good rest when I use the Cpap. It tends to wake me up when I put It on and wear it for a few minutes. As soon as you take it off tiredness creeps back in after about 20 to 40 minutes. Do you monitor your O2 levels at night with a pulse oximeter? I think you should do it just to verify the machine is getting you the air you need. If your O2 is staying good with out serveral dips, then you need to look at you machines airflow data. Mine will show every breath that is taken or should I say not taken. I get a lot of hypopnea and shallow breathing. Look at this data in detail. You can see regular breathing patterns vs unstable or irregular patterns. I would be real curious to see someones data for a night that slept very well using the cpap. Please post it if you can. Then we can do some comparisons to those that are having trouble. My machine will send a pulse of air pressure that is supposed to wake you up and get you breathing again. This will work untill you adapt to the pulse or the drive to shut down breathing overides it. I have been reading here and there and I am trying to fiqure out how the body's respiration system works. Depending on your sensitivity to CO2 your brain will shut down the drive to breathe as your CO2 level drops from breathing using Cpap. I think this is common problem for cpap newbies. This problem is called complex sleep apnea. I think the bodies breathing mechanisms can adapt to different breathing situations. It might take a while for the breathing mechanism to retrain itself. Sounds like you might be suffering from http://en.wikipedia.org/wiki/Carbon_Dioxide carbon dioxide toxicity.

Carbon dioxide is toxic to the heart and causes diminished contractile force

. I know this one for sure.It takes a while to recover from an episode of not breathing.
You said something about depression. Another theory of mine is that problems like depression can interfere with the stability of autotomic nervous system. I heard about babies that die of SIDS usually have chemical imbalance in their brain stem. This was some study that was done and I heard about it on the news. I think I have depression problems to some extent as well. This maybe a factor affecting the breathing mechanism.
http://en.wikipedia.org/wiki/Chemoreceptor
http://en.wikipedia.org/wiki/Control_of_respiration
Look up apneic threshold on google

[robysue]

Well,

I'm still pretty exhausted on CPAP---barely able to get through the day and having severe daytime sleepiness that I never had before CPAP. But I've only been doing it for a week and a half and have noticed that the last two days I felt more mediocre rather than horrible.

js_insf, I have the opposite problem from you: I have little or no trouble sleeping with the CPAP mask on. But I've been having trouble getting to sleep with it on at the beginning of the night. So instead of tossing and turning and fighting the CPAP and mask, I've simply been staying up much later than normal so that when I finally do go to bed, the body and brain are very ready to go to sleep even if I'm not 100% comfortable in my sleeping position. I'd rather be up doing the dishes, yoga and relaxation exercises than tossing and turning in bed with the mask on and not getting to sleep. This is cutting into my normal amount of sleep on MWF, but I'm lucky that I can pretty much sleep as much as I want on TR and the weekends. But it's also helping me prevent my brain from making a bad association with the CPAP mask. I'm hoping to start working the bedtime back to a more normal time soon.

js_insf, you say that you have been able to download and look at some data, but don't know how to interpret it. What CPAP machine and which software are you using? Have you been able to at least determine what you AHI with CPAP machine is and compare it to what it was in your baseline sleep study? Have you been able to look at the detailed leak data to see if leaks are contributing to your problems?

I know you also said that your sleep doctor is a joke. It is sad that she couldn't figure out how to download and read the data. But did you bother to mention any of the new symptoms you're experiencing? Did she say anything at all about them? All in all, it looks to me like you need to find a new sleep doctor if at all possible. Until that's possible, maybe you could at least talk to your primary care doctor both about getting a referral to a different sleep doctor, the problems you're having stayig asleep at night, and the problems you're having with depression? The depression could be aggrievating the insomnia you're experiencing. What do you do after you wake up and can't seem to get back to work? There are things that can help manage that kind of insomnia.

[js_insf]

I've had to be offline for a few days, but thank you everyone so much for your advice and information. The support of this group is very moving, and I'm grateful.

I just downloaded last night's data, and here are the summary numbers. Last night was not a great night. As you can see I slept just over five hours - and at least 45 minutes of that I was wide awake. The more I think about this, the more I think that a big reason I feel so bad is simply that I'm not getting enough sleep. I wake up way too early on most days. But I have no idea.

I'm not sure what is the most useful time period to use to interpret data, perhaps using the last week or something is more helpful than one night? When I do a summary of the last seven days, most of the numbers are quite a bit lower than these. Hopefully someone will let me know if it would be better to post this in a different way - like taking a screenshot or something. I'm beginning to educate myself on what these numbers mean, but if someone sees anything particularly noteworthy I hope you'll let me know. Thank you.

DEVICE SETTINGS
Minimum pressure: 4.0
Maximum pressure: 20.0
EPR: Full time
EPR Level: 3.0

Total hours used: 5:21

Average daily usage: 5:21

Apnea Index: 5.2
Obstructive: 0.3
Central: 4.6
Unknown: 0.1
Hypopnea Index: 0.0
AHI: 5.2

Pressure:
Median: 5.8
95th Percentile: 10.2
Maximum: 13.8

Leak:
Median: 7.2
95th Percentile: 16.8
Maximum: 73.2

[cobra4x4]

I notice 2 big things ...

1st off - central apneas 4.6 (this could be part of the main issue your having)

2nd - Your pressure range is set to maximum range ... looking at your pressure figures I would recommend narrowing the range to something like minumum 8 and maximum 13 or 14.

Also if your using the ramp feature turn it off, your best to start off at your set pressure as mask leaks can occur as the pressure increases.

If you require the clinicians manual (to get into the menus to adjust settings) for your machine there are people who have it and can give you a copy.

[BlackSpinner]

1st off - central apneas 4.6 (this could be part of the main issue your having)

2nd - Your pressure range is set to maximum range ... looking at your pressure figures I would recommend narrowing the range to something like minumum 8 and maximum 13 or 14.

Also if your using the ramp feature turn it off, your best to start off at your set pressure as mask leaks can occur as the pressure increases.

Yes I agree with that. A range that big is too slow to respond and maybe over responding. I would also use tape to make sure you are not mouth breathing.

But keep on top of the centrals if they get worse you need to see a really sleep specialist and/or neurologist.

[davecpap]

js_insf, it appears that you have an S9 AutoSet and not an S9 Elite. I'd update your profile so folks have a better idea of what equipment you're working with. S9 AutoSet can deliver a range of pressures automatically, where as the S9 Elite is programmed to deliver one fixed pressure. You've got yourself the better machine

[nanwilson]

JS
Are you sure you are not covering up your vent holes with your pillow or blanket and just rebreathing your exhaled carbon dioxide. When you say you are fuzzy and confused in the morning I would check that out.
Good luck
Nan

[Muse-Inc]

If those numbers were mine, this is what I'd do:

• Work on reducing leak, numbers are suspect until leak is well controlled (APAPs increase pressure to compensate)
• EPR =3 is the max, I'd re-set it to 1 and see if that works
• With median pressure @ 5.8 and max @13.8, I'd set my range to 5.6 - 16 and collect data for awhile

[Breathe Jimbo]

The centrals are a cause for concern. If you continue to have them, your pressure MAY go too high, or you MAY have the wrong kind of machine. Follow up with your sleep doctor.

Did your sleep study show lots of centrals? Did centrals show up only when you reached a certain pressure?