2 Year Mark - Giving up

Hello Everyone,

I'm now at the two year mark as a compliant CPAP user.. I even switched to an Autopap in the hopes of feeling better.

Unfortunately after 2 years of using my machine for 8 hours per night I am still miserable. I can sleep fine with it on and it lowers my AHI below 1-2, however I still can't go 10 minutes without yawning and I feel like my mind is in a deep fog all day.

I know I have a small issue with leaks, but otherwise my data appears to be very good. If anyone has any suggestions I would appreciate it.

I'm not too familiar with sleepyhead but I've posted a few screenshots here.




Thank you.

Cpap therapy does a lot more for your body then make you feel awake - tiredness is just one symptom and not even the most important one. There is blood pressure, stroke, diabetes and many other organs that work better with it.

Your tiredness could be coming from something altogether different.

Before you quit using the machine I would consider talking with your physician and letting them know how you are feeling. It is quite possible that you have other issues in addition to sleep apnea that require treatment. If you have already stopped CPAP therapy it will be difficult to get medical personnel to take you seriously when your not doing your part to solve the problems.

Random wrote:Hello Everyone,

I'm now at the two year mark as a compliant CPAP user.. I even switched to an Autopap in the hopes of feeling better.

Unfortunately after 2 years of using my machine for 8 hours per night I am still miserable. I can sleep fine with it on and it lowers my AHI below 1-2, however I still can't go 10 minutes without yawning and I feel like my mind is in a deep fog all day.

I know I have a small issue with leaks, but otherwise my data appears to be very good. If anyone has any suggestions I would appreciate it.

I'm not too familiar with sleepyhead but I've posted a few screenshots here.

Thank you.

It could be that the pressure changes are wrecking your sleep. The APAPs use air flow and algorithms determine whether they need to change pressures. If you're entering a deep sleep stage or REM, your breathing may change and the machine may misinterpret your breathing and trigger pressure increases. This may bump you out of the much-needed stages of sleep and leave you with sub-optimal sleep quality.
Your comments lead me to think that might be part of your problem. Another thing is that your pressure settings are also not optimal (minimum pressure too low).


Den

.

You have had two sucessful years of xpap treatment, you never died from sleep apnea. Maybe if you quit, lack of treatment will end your suffering.

You posted leak rate is far from ldeal, no wonder you don't see any improvement. I consider 35 to 38 lpm leak rate to be the max allowed for good treatment.

I'm sure quiting will work for you, it's real easy to learn, almost no effort is needed to succeeded. The downside you may need to use your major medical a little more, till your body fails from lack of O2, it takes a while. Jim

Honestly, none of us (I think) are MDs.

Your doctor - or a doctor - is who you should be talking to, not a bunch of people on the internet. As well meaning as we are at the end of the day you need an MD.

You obviously have some sleep or neurological problem that is making you so tired. What else is left? Your mattress?

You have an auto machine and that should be getting your sleep disordered breathing under control as best as is technologically possible in 2013.

The rest is in your sleep doctor's purview to try and fix. However, simply ending cpap may do more harm than good.

Yes see a doctor

Please don't give up. I think the advice to try straight pressure is a good one, maybe 8cms and if necessary 9cms. You also need to work on your leaks, have you tried any other masks? It's always best to check with your Dr but I think you could really benefit from adjusting your pressure settings and controlling your leaks, that's probably what's disturbing your sleep. Keep us posted.

Could you post detailed data for a few typical nights. They can be more useful
that the summary data you posted.

Random,

Today is my one-year 'anniversary' of being on PAP and your story moved me to share my story with you. First, take a look at my Sleepyhead stats for the year:



Impressive, isn't it? But the real story is that like you, I feel no better than before I started. I feel worse. I worked hard the first half of the year to get leaks under control, to find optimal pressure(s), even switched from cpap to bilevel which I find more comfortable to breathe with, but which still did not lead to an improvement in how I feel or function. Popular opinion is that if your therapy is looking optimal then your ongoing problems must be due to some other underlying issue. While that is probably true most of the time I'm no longer so sure that it's always the case. I do wonder about the potential iatrogenic effects of PAP therapy that may not be well understood yet. I do have a pre-existing condition that has some effect on my sleep, but even so I would have thought that effectively treating my severe sleep apnea for a year would have brought about some improvement in how I feel.

As sad, frustrated, and disappointed as I feel about my year on PAP, I intend to stick with it and I hope you will too. Because if nothing else, we are not having oxygen deprivation all night long, and that counts for something -- actually a lot -- even if we don't really feel better. Any time I feel like quitting (which is pretty much every day ) I look at the desaturation graph from my first night with an oximeter and no cpap and I know I can't let that continue. I dutifully dragged the damn machine through the airport for the first time last week so that I wouldn't have four nights without treatment while I was out of town.

You are young, and it really matters that you keep breathing at night. Your leaks could be messing significantly with your sleep quality, causing arousals or mini arousals. As a few others suggested, perhaps you are sensitive to pressure changes and would fare better on straight cpap or with a smaller apap range. And of course, there is the question of whether other health issues are interfering with your sleep. So do follow up with your doctor. I have a neurology appointment next week to see if I can get more help with whatever is keeping me out of deep sleep and pushing me dangerously close to disability.

So, let's make a deal -- we both keep trying. OK?

kaiasgram wrote:So, let's make a deal -- we both keep trying. OK?

Random,
Excellent advice, don't give up.
A T

You need professional advice, but I wonder what else exists in your environment.

For example, I'm up at 4:30 posting here because my wife's snoring woke me up and was keeping me up. I will be a tired & cranky today because of this, not ineffective treatment.

I'm up before 5AM every day... M - F because of work schedule.... weekends, I can't sleep more than 7 hours anymore.

my mother in law used to participate in the "don't ask, don't tell" program with her doctor.....since he didn't ask, she didn't tell him her issues.

make a list of your concerns & issues and go over each of them with your doctor.

I can really empathize with your frustration! I'm a little over 2 years on CPAP and am just now beginning to really solve my sleep problems. HOWEVER, treating my OSA was only the FIRST step to sleeping and feeling better....not the last step. Without treating the OSA, you can never really figure out what's happening because the OSA will cover up all other symptoms or potential improvement. At any rate, your body functions better with appropriate oxygen at night! I really wanted to be one of those people who had a miraculous improvement once on CPAP, but that was not to be. I've spent over two years trying everything under the sun to stay asleep and wake up rested. Turns out I really had a deep level of chronic insomnia...who knows, maybe it was caused by a lifetime of suffocating in my sleep and in turn it seriously impacted my metabolism and hormonal system.

It is very possible that you have other physical issues going on that are ruining your sleep. But you HAVE to treat the OSA or else nothing else will ever get better because the chronic sleep deprivation keeps your body from healing or working well at all.

You may want to find an endocrinologist or other physician who is really attuned to the hormonal/physical subtleties that can impact sleep. Our bodies aren't as simple as we'd like them to be and it can take a lot of work and trial and error to find the right solution. You may need different nutrition, thyroid or other hormonal medications, or even supplements (amino acids have really become my friend and are making an impact!).

CPAP is not a magic bullet for many of us--darn it! But it is the first step towards solving sleep issues. You can't fix anything if you're still suffocating at night!

I'm very new at this but after a few nights I discovered the best results by turning off ramping and all the auto pressure changes and just going from start to finish of the night with the doctor prescribed 8.0 pressure. Also, quite a few people would kill for the stats you posted. I'm think there are issues outside of CPAP at work here.