CPAP not working for me

I have been using my CPAP for a couple of months and I don't feel any better. When I tell people this they tell me it takes time and to just stick with it. Why does it take time? Either the machine works or it doesn't. My doctor said the machine would enable me to get some deep sleep but since I still feel so sleepy and tired I'm apparently not getting any deep sleep. I'm retired but if I was still working I don't think I could function as my mind is so tired and fogged up I can't think straight.

bibj12 wrote:I have been using my CPAP for a couple of months and I don't feel any better. When I tell people this they tell me it takes time and to just stick with it. Why does it take time?

Why does it take time?

Well for starters, sleeping with a six foot hose attached to your nose is not exactly natural. There's a learning curve and for some of us, that learning curve is steeper than it is for others. It took my highly sensitive body months and months to learn to ignore the sensation of the pressurized air tickling the back of my throat for example. It takes a while for our bodies to figure out that with the machine, the do NOT need to be on hyperalert status all night long. In other words, it takes time to build a physical and intimate relationship with the mask, and until that's done, many of us have a difficult time getting past Stage II sleep for much of the night.

And then there is the popular hypothesis of sleep debt that's tossed around here a lot: For some folks, once the start sleeping deeply---spending lots of time in Stage III and REM, the body starts craving more and more of this high quality sleep that it has been lacking for years with undiagnosed OSA. And as the sleep debt is paid off, their sleep gradually returns to normal---both in terms of how much sleep they get each night and how awake they feel in the day time.

And then there's just plain bad luck: For a small number of compliant CPAPers, the damage done to the body during the years or decades of untreated OSA is simply great enough that full recovery simply doesn't happen and residual daytime sleepiness remains an issue. For these folks, CPAP does prevent further nighttime damage from occurring, helps with preventing/minimizing a whole host of medical conditions associated with untreated OSA, and should prevent the daytime symptoms from getting worse.

And then there's the possibility of coexisting medical conditions. Once you've been diagnosed with OSA, there is a tendency to blame all daytime sleepiness, fatigue, and mental fog on the OSA. But many other medical conditions have many of these same symptoms and it is quite possible for a person to have OSA and another condition. In that case, both causes of the daytime symptoms need to be effectively treated before the patient starts to feel better. So it is worth asking your PCP this question: If I did NOT have OSA, but I was reporting these same symptoms, what else would you test for? The usual list of suspects would include (but not be limited to) thyroid problems, low vitamin D levels, and clinical depression.

Either the machine works or it doesn't.

Is the machine working?

That of course is the $64,000 question for folks who don't start feelong any better after a couple of months of using a CPAP all night long, every single night.

If you have a machine that gathers full efficacy data, it is pretty easy to verify whether the machine is doing its job at night. You check the data and see if the AHI is consistently below 5 and that the leaks are genuinely under control. If you can download the data, you look at the timing of the events----are there still nasty clusters possibly associated with REM? Is there evidence of emergent cental apneas being an issue?

But if you've been set up with a brick---a machine that records nothing but the hours you use it each night, there is simply no way for you or the doc to know whether your machine is genuinely effective in terms of reducing your AHI to the desired levels. And all too often, in this case the doc relies on how the patient feels. And when they report "Still sleepy", the doc tell the patient to keep trying. After several weeks or months of "not feeling better", the doc may blindly order a pressure increase to see if that helps. Or the doc may ask the DME to give the patient a loaner APAP for a week or two of auto-titration (and data gathering). Or the doc may order another full PSG in the lab. If you have a brick, you will really need to be proactive in repeatedly contacting the sleep doc's office and insisting that the do something to verify that your machine is indeed effectively treating the OSA since you've been using the machine all night long, every single night sor a period of several weeks to two or three months or longer.

Your signature indicates you are using a System One APAP. So you have got a full efficacy data machine. Do you know what the data says about the efficacy of your therapy?

It took me a good six months to start feeling decent. First I had to find the correct machine, and get bumped up to the ASV. Then it took the second three months to adapt to using the ASV, which was very difficult for me to do. But I stuck it out and am glad that I did.

My husband and daughter, on the other hand, have since gone on cpaps and felt great from day one. Both HATED the idea of sleep studies and cpaps. Both came home from the sleep study wanting to get hooked up ASAP because they felt so much better after spending the night on cpap during their titrations.

Anyhow, download the free software to check on your data, or do what I do (my ASV doesn't work with the free software but your will): I go to my DME every few months and they print out my data for free. Or, what does your doctor say about your data? Is your AHI down, for example? If not, maybe you need to adjust your pressure or switch to bipap or ASV if that is indicated.

Just because you have sleep apnea, that doesn't mean that SA is responsible for all of your sleep problems or exhaustion. Another personal example: my vitamin D levels were through the basement; it was amazing how much better I felt after getting a prescription. Have you had any bloodwork done to check your vitamin D, iron, thyroid, etc.?

bibj12 wrote:I have been using my CPAP for a couple of months and I don't feel any better. ...My doctor said the machine would enable me to get some deep sleep but since I still feel so sleepy and tired I'm apparently not getting any deep sleep. I'm retired but if I was still working I don't think I could function as my mind is so tired and fogged up I can't think straight.

Howdy, I felt just about the same after 9 months, so I got a new sleep study (didn't sleep on the first!) and it told me I don't achieve a significant amount of deeper sleep. So I've felt the same draggy, fuzzy symptoms as yourself. Also confirmed my PLMS/RLS, for which I take an RX.
I also spent $150 for the Zeo Bedside- that several folks on this forum use, and it has allowed me to look at the huge variations in my sleep quality from night to night. What I've learned is I have lots of wakeups, 4 to 14 a night; and greatly varying amounts of restful sleep. I've been able to remove some environmental factors contributing to my wakeups, and continue with improving my consistency from night to night. So it's been 11 months now, and I'm still struggling.
So if you will stick to it, ask for help here, there's a good chance you will figure out what's robbing you of the restful sleep you/we all need. Very best wishes to you.

CPAP isn't a miracle cure for everything so look at other factors that may be contributing. It took me a while of looking closely at my medications and taking them (and on one case eliminating it) on a schedule that contributed to good sleep. How long has it been since you slept well and felt alert and good during the day? What was your life like at that time and how is is different now? Once I got all of the factors outside of CPAP working, my CPAP finally worked the "miracle" had been expecting 5 months ago!

Xpap will only work for some if they take a interest in making it work. You have been blessed with a machine that can help you live longer and feel better. Get the software and find out where you and your doctor are going wrong, many times there's a reason it's not working. Don't be your own reason, get informed. Jim

bibj12 wrote:I have been using my CPAP for a couple of months and I don't feel any better. When I tell people this they tell me it takes time and to just stick with it. Why does it take time? Either the machine works or it doesn't. My doctor said the machine would enable me to get some deep sleep but since I still feel so sleepy and tired I'm apparently not getting any deep sleep. I'm retired but if I was still working I don't think I could function as my mind is so tired and fogged up I can't think straight.

Well it could be your body is in such bad shape it might take a long time to repair the damage. Your machine is working in such that it isn't getting worse - or at least we hope so since they short changed you with a brick which doesn't show any data.

What are your settings? Since you have an auto the jerks may have left it wide open instead of fine tuning.

What does your sleep study say? Do you have a copy? If not get one. Then post the results here.

As you said that you have a APAP so be relax of the pressure it is giving to you, second comes your symptom like daytime sleep, before this try to find whether the cpap is working on your "DURING"sleep problems like, my father(57) he is using a APAP he has events of dream enactment during sleep, so like that you will also be having some during sleep problems it could be snoring, dream enactment, talking during sleep,sudden breathe problems, movements of lips or hands and different expressions.
just ask your attendant(your son, husband) to check all these kind of things when you are asleep with your APAP and with usual settings.

if they observe any thing like above then it is for sure that your Apap isn't working that much you need it.

daytime sleepiness is a response of the treatment which will take some time .but if you have started cpap around a month ago then wait for the results, but if find your problem increasing then please consult your doctor for another sleep study with your machine so the doctor can also observe the things .

do you also have cerebellar atrophy ? please feel free to ask anything related or you can opt for PM
hope you get active in daytime.

By all means, worry about unlikely problems that have no simple correction, instead of getting your daily data with the software. Make the chances of correcting your treatment as hard as possible by just guessing what's going on when you sleep. Jim

Find out your leak rate and correct it, check your AHI numbers, tweak your settings to get them where they belong, use your machine every time you sleep, and practice good practices. All you need to do this is the software, and time reading and asking simple questions, but reading is the best way. Another tool is a O2 recording pulse ox, not totally necessary but useful.

Thank you very much to all who replied to my message. I got several very good suggestions that I will try. I do have clinical depression which I'm being treated for. I don't have any way of downloading any data but my doctor has downloaded it and talked to me about it and I have another appointment with him on July 24 at which time I will question him about the things you all suggested in your replies. I have been very good about using my CPAP and have only missed about 3 nights in the 2 months I've used it. However, I've only kept it on from 4 to 6 hours each night as it would start leaking so badly I would finally take it off, or it would become so uncomfortable. A couple of times I woke myself up pulling at the mask and trying to take it off. I dream a lot, so much so that it seems like I'm dreaming all the time I'm asleep. I have had blood work done to check my iron, thyroid, etc. I do have lots of wake-ups during the night. I haven't had a good night's sleep in 8 months. My health has always been pretty good. I am 5 ft. tall and weigh 115 lbs. I do back exercises every morning as I've had compression fractures in my thoracic and lumbar spine from osteoporosis. I've started walking again. So I do try to take care of myself. I've been diagnosed with epilepsy and am on medication for that and haven't had a seizure for 26 years. I'm 76 years old so maybe it's old age that's causing a lot of my problems. But last year I felt good except for having gallbladder surgery and the compression fractures. I had quite a lot of energy and did my own yard work including mowing until last year. I still do some yard work and all my housework. I have to force myself to get started though.

When you say you have no way to download data, do you mean that you do not have a computer? (Perhaps you are using a friend's computer to post here?)

If you have a computer, all you need is a $10 sd card reader from Walmart/Target/Staples... the software (Sleepyhead) is free...

If you do have a computer and just need some help getting started, let us know...

Hi Randy, Thank you for replying to my message. I do have a computer but don't know how to do a lot of things with it. Until I started reading the messages on this forum I had no idea so many people used so many different things to get information from their machines. I just go to my doctor and he downloads information from my card and has changed the pressure on my machine for me. I didn't know I could do anything myself. And a lot of terms used in some of the messages I don't know what they mean. Also, I really don't know how to use this site right. For one thing, when I send a reply why does the word "edit" show up next to "Quote" on my messages and no one elses?

I'll get the S10 sd card and the Sleepyhead software but will probably need help with these. The message from Goofproof had several suggestions but I have no idea how to find my leak rate and correct it or what C 02 recording pulse ox is or how to tweak my settings, etc. It sounds like he already thinks I'm an idiot so I can imagine what he will think if he sees this message with me admitting how much I don't know.

I understand now that you meant that you didn't feel you had the required computer skills to download and read your own data. Don't worry about it, especially if doing things like installing software and troubleshooting when things don't work quite right are stressful for you.

If you do decide to get an SD card reader, I and others here can talk you through it and help if things don't seem to work at first try, but don't feel pressured to do it if you're not comfortable with it.

You can still get 7 and 30 day average AHI numbers and large leak info on the LCD screen of your machine, and that can be helpful in the absence of looking at daily numbers.

You can see an "Edit" button on your own messages so if you want to edit (change or add to) something you've posted, clicking on that button will open up the post in an editor window that will allow you to do it. Obviously, you can only edit your own posts, which is why you don't see the button on other members' posts.